Access To ART Centres in Rural India

Barriers to Sustainable Access of
Children and Families

to ART Centres in Rural India
A Report on Operations Research conducted in

Maharashtra and Manipur
India HIV/AIDS Alliance, New Delhi

December 2009
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About India HIV/AIDS Alliance
The International HIV/AIDS Alliance is a global partnership of nationally-based

organisations working to support community action on AIDS in developing countries.
The national partners help local community groups and other non-government
organisations to take action on AIDS, supported by technical expertise, policy work
and fund-raising carried out across the Alliance.
The Alliance envisions a world in which people do not die of AIDS: a world where
communities have brought HIV under control by preventing its transmission,
and where they enjoy better health and higher quality of life through access to
comprehensive HIV prevention, care, support and treatment services.
Established in 1999, India HIV/AIDS Alliance (or, Alliance India) comprises a

Secretariat in New Delhi, five lead partner organisations (Linking Organisations within
the global Alliance) and their networks of over 100 community-based Non-Government
Organisations (NGOs) and Community-Based Organisations (CBOs) across Andhra
Pradesh, Tamil Nadu, Maharashtra and Delhi, and a state partner in Manipur.
Alliance India’s project office in Hyderabad was formally launched in April, 2008
as the fifth lead partner (or, Linking Organisation) in India.
Alliance India has supported over 120 community-based projects through its NGO
and CBO partners to prevent HIV infection; improve access to HIV treatment, care
and support; and lessen the impact of HIV by reducing stigma and discrimination,
particularly among the most vulnerable and marginalised communities which are
key to the epidemic – sex workers, men who have sex with men (MSM), injecting
drug users (IDUs) and adults and children living with and/or affected by HIV.
Funding from the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM)
was awarded to Alliance India in 2007, whereby the partnership in India has been
broadened to include two new project-based lead partner relationships with two
external organisations and their networks of implementing NGO partners.
i
Acknowledgements
India HIV/AIDS Alliance (or, Alliance India) would like to acknowledge the significant
contributions of its partner NGOs in the two states where the study was conducted:
Plan India, Catholic Relief Services (CRS), Karunya Trust, Committed Communities
Development Trust (CCDT), Sangli Mission Society (all in Maharashtra) and Social
Awareness Service Organisation (SASO), Manipur. These NGOs not only extended
field support to this research but also provided timely feedback and comments on
the processes followed during the study. Alliance India would also like to express its
gratitude to the community members and facility providers who gave their time and
shared their rich experiences with the team. Without their individual and collective
contributions, this report would have been incomplete.
Alliance India would like to thank Sister Betty George, Ms. Shanthi Krishnan,
Ms. Romi Hijam, Father Sabu Mathew and Sister Alwin (Maharashtra); Basanta
Moirangthem, Gilbert Chinir, Ranjana.L and Y. Shasikumar Singh from SASO
(Manipur) for facilitating smooth conduct of the study and providing their valuable
inputs.
Alliance India would like to acknowledge the contribution of the research

agency – Astron Hospital and Healthcare Consultants Pvt. Ltd, Gurgaon, which
conducted the study and helped in preparing this report. Special thanks to
Dr. Neeru Bhatia, the Principal Investigator who ably led the research work, and her
research team comprising Mr. Mohit Ahuja, Dr. Nishi Maghu, Dr. Sanjukta Bordoloi,
Dr. Pooja Passi, Ms. Preshu Goel, Mr. Nongyai Nongdren Khomba, Mr. Imu Wahengbam,
Mr. Purshotam Chandankar, and Dr. Pragati Chauhan. The research team constituted
by Astron Hospital and Healthcare Consultants Pvt Ltd. received guidance from a
core team that comprised Dr. Ingle and Dr. Suneela Garg, Maulana Azad Medical
College (MAMC), Delhi; Dr. Tripti Pensi, Dr. Ram Manohar Lohia Hospital, Delhi;
Dr. Y P Bhatia and Dr. Neeru Bhatia, both from Astron Hospital and Healthcare
Consultants Pvt. Ltd.
This research work was made possible by the guidance and support provided by
Mr. Prakash Sabde and Dr. Rekha Jain, both from Maharashtra State AIDS Control
Society (MSACS); Dr. Harish M Pathak, Mumbai District AIDS Control Society (MDACS);
Dr. Khundrakpam Pramodkumar, Manipur State AIDS Control Society (MSACS);
Dr. Shamurailaptam Raghumani Sharma, Jawaharlal Nehru Hospital, Imphal (Manipur);
Dr. Rekha Daver and Dr. Sulbha Akarte, both from Grant Medical College & Sir JJ Group
of Hospitals, Mumbai; Dr. Maulik J. Desai (UNICEF & MDACS); Dr. Shailbala Patil,
Bharti Vidyapeeth University Medical College and Hospital, Sangli (Maharashtra);
Dr. Laishram Ranbir, RIMS Hospital, Imphal (Manipur); and Dr. Hemanta, Manipur
State AIDS Control Society (MSACS).
ii
Alliance India staff - Alexander Matheou, Shaleen Rakesh, Tanu Chhabra, Vaishakhi
M. Chaturvedi, Dr. Praween Agrawal, Dr. Umesh Chawla and Joydeep Sen - are
acknowledged for reviewing the report and for providing their valuable inputs. The
report in its final version, necessary review, compilation, editing and design is
attributed to Pankaj Anand.
This study and its publication was made possible with the support of the Global
Fund to Fight AIDS, Tuberculosis and Malaria (GFATM). The opinions expressed
herein do not necessarily reflect the views of this donor.
Suggested citation: Dr. Bhatia, Neeru; Anand, Pankaj, Barriers to Sustainable

Access of Children and Families to ART Centres in Rural India, India HIV/AIDS
Alliance, 2009.
iii
Table of Contents
About India HIV/AIDS Alliance i
Acknowledgements ii
Acronyms v
Executive Summary vii
Chapter 1
HIV and AIDS Scenario in India 1
Chapter 2
Anti-Retroviral Therapy in India: An Overview 3
Chapter 3
Study Rationale and Objectives 6
Chapter 4
District Profile: Sangli and Ukhrul 7
Chapter 5
Research Methodology 10
Chapter 6
Access to ART centres: Key Findings 15
Chapter 7
Recommendations 29
Chapter 8
Conclusion 36
Bibliography 37
iv
Acronyms
AIDS : Acquired Immuno Deficiency Syndrome

ANC : Ante Natal Care
ANM : Auxillary Nurse Midwife
ARV : Antiretroviral
ART : Anti Retroviral Therapy
ASHA : Accredited Social Health Activist
AWW : Anganwadi Workers
CAA : Children Affected with AIDS
CBO : Community Based Organisation
CCC : Community Care Centre
CCDT : Committed Communities Development Trust
CDMO : Chief District Medical Officer
CDPO : Child Development Programme Officer
CLHIV : Children Living with HIV
CHC : Community Health Centre
CMO : Chief Medical Officer
CSO : Civil Socity Organisation
DED : District Education Department
DGO : Diploma in Gynaecology and Obstetrics
DIC : Drop-in Centre
DLHS : District Level Household Survey
DNA : Deoxyribonucleic Acid
DOTS : Direct Observation Treatment Short Course
DPT : Diptheria Tetanus whole cell Pertussis Vaccine
EBC : Exposed Baby Care
EDI : Entrepreneurship Development Institute
ELISA : Enzyme-Linked Immuno Sorbent Assay
EID : Early Infant Diagnosis
FBO : Faith Based Organisation
FDC : Fixed Dose Combination
FGD : Focus Group Discussion
GFATM : Global Fund to Fight against AIDS, Tuberculosis
and Malaria
HCBCS : Home and Community Based Care and Support
HCW : Healthcare Workers
HIV : Human Immuno Deficiency Virus
ICDS : Integrated Child Development Scheme
ICTC : Integrated Counselling and Testing Centre
IDI : In-Depth Interview
IDU : Intravenous Drug Users
v
IEC : Information Education and Communication
IGP : Income Generation Programme
INR : Indian Rupee
LAC : Link ART Centre
LFU : Lost to Follow-up
M&E : Monitoring and Evaluation
MCH : Maternal and Child Health
MDACS : Mumbai District AIDS Control Society
MO : Medical Officer
MNP+ : Manipur Network of Positive People
MSACS : Maharashtra State AIDS Control Society
MSM : Men who have Sex with Men
MTCT : Mother to Child Transmission
NACO : National AIDS Control Organisation
NACP : National AIDS Control Programme
NGO : Non Government Organisation
NRHM : National Rural Health Mission
OBG : Obstetrics and Gynaecology
OI : Opportunistic Infection
PCR : Polymerase Chain Reaction
PHC : Primary Health Centre
PLHIV : People Living with HIV
PNDT : Prenatal Diagnostic Techniques
PPTCT : Prevention of Parent to Child Transmission
PR : Principal Recipient
PRI : Panchayati Raj Institution
RCH : Reproductive and Child Health
RNTCP : Revised National Tuberculosis Control Programme
RTI : Reproductive Tract Infection
SACS : State AIDS Control Society
SAEP : School AIDS Education Programme
SASO : Social Awareness Service Organisation
SD : Strategic Directions
SHG : Self Help Group
SOP : Standard Operating Procedures
SR : Sub-Recipient
SSR : Sub-Sub-Recipient
STD : Sexually Transmitted Disease
STI : Sexually Transmitted Infection
TB : Tuberculosis
TBA : Traditional Birth Attendants
UNAIDS : United Nations Programme on HIV and AIDS
UNICEF : United Nations Children’s Fund
VCTC : Voluntary Counselling and Testing Centre
VO : Voluntary Organisation
WHO : World Health Organisation
WLHIV : Women Living with HIV
vi
Executive Summary
India has witnessed HIV and AIDS for nearly quarter of a century (first case of AIDS
was reported in 1986), and it has become one of the most defining issues of our
time. The progression of the epidemic in India has been a cause of major concern.
According to HIV Sentinel Surveillance and HIV Estimation 2007 Report of National
AIDS Control Organisation (NACO), it was estimated that there were 2.31 million
People Living with HIV (PLHIV) in India by 2007, with estimated adult HIV prevalence
of 0.34 percent (0.25 % - 0.43 %).
For PLHIV, free Anti Retroviral Therapy (ART) programme was launched by the
Government of India on 1st April, 2004. It was scaled up in a phased manner to
provide free ART to 2,00,000 PLHIV by 2011 in 250 centres across the country.
However, the Programme largely remained confined to the adult PLHIV with very little
paediatric focus. After having realised the disparity between the number of Children
Living with HIV (CLHIV) and the number receiving ART, the Indian Paediatric AIDS
Initiative was launched in November, 2006 with the objective to maximise the access
of ART to the paediatric age group.
With a view to extend care and support to HIV positive children, CHAHA Programme
was launched under the Global Fund Round 6 by India HIV/AIDS Alliance as a civil
society Principal Recipient (PR).
Alliance India conducted a study on identifying barriers to accessing ART centres by

CLHIV, both in urban and rural context, in two high prevalence states of Maharashtra
and Manipur. The two states were selected to include a cross section of socio-
cultural and economic diversity. In both states, one urban and one rural
district was selected to collect data from diverse populations and arrive The major issue
at conclusive results. Present report deals with the issues relating to the brought out by the
rural population.
study related to an
Based on a wide range of subjects covered in the study, interviews from all-pervasive stigma
various stakeholders and service users were recorded and analysed to
prepare evidence-based, strategic and child-focused interventions aimed
and the resultant
at minimising the barriers that hamper access to paediatric ART services discrimination at all
in rural areas.
levels in rural areas not
The major issue brought out by the study related to an all-pervasive stigma only within the family
and the resultant discrimination at all levels in rural areas not only within and community but also
the family and community but also in school and even health care service
facilities. The discriminatory attitude of service providers discourages both in schools and even
children and their parents, to access the ART centres. In many cases, health care service
this leads to non-disclosure of the HIV positive status of the child, thus
keeping the child away from available services and interventions. facilities.
A focused effort is, therefore, needed to address issues like illiteracy, lack of
awareness and limited access to Information, Education and Communication (IEC).
The gross lack of awareness about paediatric ART services in the rural areas and
vii
also the fact that these services are being provided free of charge by the government
needs to be addressed by a rural and child-focused IEC strategy. In addition,
media planning to bridge the information and knowledge gaps on the availability of
paediatric ART is crucial.
The effort needs to be further supplemented and complemented by creating enabling

conditions for wider participation of society at large – Panchayati Raj Institution
(PRI) members, religious and spiritual leaders, local political leaders, teachers, even
families and children themselves.
Access to ART centres gets constrained due to socio-economic factors as well.

Despite the provision of free ART service, families have to incur substantial
expendtiture on travel, testing facilities and treatment of Opportunistic Infections
(OI), which are not provided at ART centres. Innovative methods to
Access to ART centres bring ART to doorsteps through creation of Link ART Centres (LAC) or
gets constrained due to making ART and testing facilities available in Community Care Centres
(CCC) can be the alternative for dealing with this situation. Linkages
socio-economic factors with rehabilitative services and some Income Generation Programme
as well. (IGP) activities especially designed for the rural population could be a
big encouragement.
The distance, location and timing of ART centres, besides the staffing pattern as
well as patient-unfriendly procedures and facilities add up to difficulties in accessing
ART services, which, in any case, are inadequate. The rural population, comprising
mostly daily wage earners, not only lose their daily earnings to access these services
but also incur a lot of expenses on travel for accessing ART centres. This leads to
reluctance and avoidance in getting regular treatment.
The attitude of health care providers has a lot to do with the success of ART
programme. They need to ensure an environment free from stigma or discrimination
in heath care settings. It has been observed that child focus is almost missing as
the existing services are largely adult-centric. Training of doctors, paramedics and
counsellors in paediatric orientation and counselling skills is, therefore, of paramount
importance for providing meaningful ART.
The policy makers, too, need to ensure that there is an integration of all programmes
and services which impact HIV and AIDS related activities. Thus, education,
Integrated Child Development Schemes (ICDS), National Rural Health Mission
(NRHM), Reproductive and Child Health (RCH) programme, Prevention of Parent to
Child Transmission (PPTCT), Voluntary Counselling and Testing Centres (VCTC),
Community Care Centres (CCC), Tuberculosis (TB) and ART centres need to
function in close coordination to achieve the common objectives embedded in their
programmes.
A formal involvement of the private sector, including NGOs, in the paediatric HIV
programme will improve the coverage and delivery of standardised treatment which
at present is inconsistent. It is, therefore, imperative that a practical and time-bound
action plan is developed to address these issues at both programmatic and policy
level.
viii
Barriers to Sustainable Access of Children and
1
Families to ART Centres in Rural India

CHAPTER
HIV and AIDS Scenario in India

HIV epidemic in India is heterogeneous in nature, both in terms of routes of
transmission as well as geographic spread. Approximately 58 percent of PLHIV
dwell in rural areas1; the HIV prevalence rate is 40 percent higher in urban areas
than in rural areas (61% higher in urban areas than in rural areas for women and
28 percent higher for men).
According to HIV Sentinel Surveillance and HIV Estimation 2007 Report of NACO,
it is estimated that in 2007, there were 2.31 million (1.8 – 2.9 million) PLHIV in India
with an estimated adult HIV prevalence of 0.34 percent (0.25% – 0.43%). Females
constituted around 39 percent, (0.9 million); children below 15 years around 3.5
percent while people older than 49 years constituted 7.8 percent of the estimated
number of PLHIV2.
The survey also portrayed a concentrated epidemic in India with high prevalence
amongst the high risk groups and low prevalence in antenatal attendees. In fact,
except for Andhra Pradesh which recorded 1 percent prevalence rate, all other states
recorded less than one percent prevalence in Antenatal Care (ANC) attendees.
HIV Prevalence in Study States

In Manipur, the overall HIV prevalence rate among adults aged 15-49 years is1.13
percent which is the highest of all states surveyed under the HIV Sentinel Surveillance
and HIV Estimation conducted by NACO in 2007; among women aged 15-49 years,
the prevalence is 0.76 percent and among men aged 15-49, the prevalence is twice as
high at 1.59 percent. The HIV prevalence at antenatal clinics in Manipur has exceeded
1 percent in recent years2.
In Maharashtra, 0.62 percent of adults aged 15-49 years are living with HIV.
HIV prevalence among women is 0.48 percent, compared to 0.77 percent among
men. Prevalence among youth aged 15-24 years is 0.24 percent, which is lower
than for the reproductive age population as a whole2.
Expanded surveillance among MSM has revealed more than 5 percent HIV prevalence
in Manipur (16.4%) and Maharashtra (17.91%). Among Intravenous Drug Users
(IDUs), Maharashtra records 24.4 percent, while Manipur stands at 17.9 percent.
HIV prevalence among Female Sex Workers (FSWs) is very high in Maharashtra
(17.91%), followed by Manipur (13.07%)2.
1
WHO report, 2005.
2
HIV Sentinel Surveillance and HIV Estimation Report NACO, 2007.
1
Vulnerability of Children to HIV and AIDS
According to AIDS Epidemic Update, December 2009, released by UNAIDS, there
HIV and AIDS Scenario in India
were 33.4 million PLHIV including 2.1 million CLHIV globally by the end of 2008.
Moreover, one third of HIV positive children die before the age of 1.5 years while
half of them die by 2 years of age3.
Perinatal transmission is the most common cause of HIV in paediatric age group
below 15 years. Most children under age 15 acquire HIV from their HIV positive
mothers before or during birth or through breastfeeding. Besides Mother to Child
Transmission (MTCT), children and adolescents are also extremely vulnerable to HIV
through blood transmission, unsafe sex and injecting drug use. Overall progression
of disease is more rapid in children because of their weak immune system4.
Paediatric AIDS results in death more quickly in developing countries, where there
is widespread poverty, poor nutrition, low health awareness and other contributing
factors that call for augmented efforts to provide free treatment to children and HIV
positive mothers.
There are several factors that accentuate the vulnerability of children to HIV
and AIDS. There is a lack of awareness about the existing care and support
services. Children and families experience difficulty in accessing ART centres for
a variety of reasons. The identification and follow up of children who are in difficult
circumstances or those born to HIV positive mothers is grossly inadequate. In the
case of infants, non-availability of mechanisms for early diagnosis adds to the
vulnerability. There are other problems on the supply side too. It is widely felt that
there is a lack of clear guidelines for treatment and that the overall capacity of
service providers in clinical management of paediatric HIV/AIDS and nutrition in
infants is weak. To add to the complexity, the surveillance and strategic information
system for the paediatric age group (<15 years) leaves much to be desired.
3
AIDS Epidemic Update, UNAIDS, December 2009.
4
Manual for Management of HIV/AIDS in Children (UNICEF).
2
2

CHAPTER
Anti-Retroviral Therapy in India: An Overview
In September, 2003, WHO declared the lack of access to Antiretroviral (ARV)

Treatment for HIV and AIDS a “global health emergency” and announced an
emergency plan to scale up access to ARV treatment to cover at least three million
people by the end of 2005. This announcement popularly came to be known as the
“3 by 5” initiative. WHO guidelines for “Antiretroviral Use in Resource-constrained
Settings” were revised in December, 2003 and again in August, 2006.
The Government of India launched free ART Programme on 1st April, 2004, starting
with eight tertiary-level government hospitals in the six high-prevalence states of
Andhra Pradesh, Karnataka, Maharashtra, Tamil Nadu, Manipur and Nagaland, as
well as the National Capital Territory (NCT) of Delhi. In Phase 1 of this programme,
subgroups of PLHIV who are targeted on a priority basis included: (i) sero-positive
mothers who participated in PPTCT programme (ii) sero-positive children below
the age of 15 years and (iii) PLHIV who seek treatment in government hospitals.
ART centres were scaled up in a phased manner to provide free ART Because of a
to 1,00,000 PLHIV by the end of 2007 and are expected to cater to
3,00,000 PLHIV by 2011 in 250 ART centres across the country. It implies paradigm shift in
a comprehensive prevention, care and treatment programme, with a the National AIDS
standardised, simplified combination of ART regimens, a regular secure
Control Programme
supply of good-quality ARV drugs, and a robust monitoring and evaluation
system. However, the programme lacked focus on paediatric ART. of India, treatment,
along with prevention,
Paediatric ART in India is now perceived as
Paediatric AIDS Initiative in India was launched in November, 2006, to
a significant part of
combat the disparity between the number of CLHIV and the number of a broad programme
children receiving treatment. Because of a paradigm shift in the National
to combat HIV and
AIDS Control Programme (NACP) of India, treatment, along with prevention,
is now perceived as a significant part of a broad programme to combat HIV AIDS with an added
and AIDS with an added focus on the care and support of CLHIV. Although focus on the care and
ART services are provided free to adults and children, access for children
is often limited due to several socio-economic and institutional barriers. support of CLHIV.
After analysing the NACO data for projecting the existing gap in service
provisioning, it is found that, as on September, 2008, only 12,116 paediatric cases
were on ART out of a total 1,77,808 cases1. Cumulative number of paediatric
cases ever started ART were 15,714 (6.17%) out of a total number of 2,45,515.
With a total cumulative paediatric patients registered in HIV care being 42,106, only
37 percent could access ART in the country.
1
CMIS Report on District ART Data - National AIDS Control Organisation- September 2008.
3
Anti-Retroviral Therapy in India : An Overview
Table 1: Paediatric ART status in India

No. of Paediatric ART Status in
Total Males Females
Patients India
Cumulative number of paediatric 15,714 9,144 6,015

2,54,515
patients ever started on ART (6.17%) (58.2%) (41.8%)
Total number of patients alive

12,116 7,294 4,822
1,77,808 and on ART as on
(15.57%) (60.20%) (39.80%)
September 2008
Cumulative number of paediatric

42,106 23,508 17,138
1,07,592 patients ever registered in HIV
(39.20%) (55.8%) (34.4%)
care
Total paediatric patients who

26,744 976 597 379
ever died
Total number of patients

23,491 1,558 916 642
transferred out
Total number of patients who 76
2,206 - -
stopped treatment (3.44%)
Lost to follow-up paediatric 625

17,357 - -
patients (3.6%)
(Source: CMIS Report on ART Data - National AIDS Control Organisation - Sept 2008)
According to the report released jointly by WHO, UNICEF and UNAIDS in September,
2009, India is among the top 20 countries which recorded the highest percentage
increase in the number of people receiving ART between 2007 and 2008 (from
1,58,000 to 2,34,000 i.e 48% increase). The number of facilities in India increased
from 4,269 in 2007 to 4,817 in 2008. Yet, out of 80,000 pregnant Women Living with
HIV (WLHIV), only 10,673 received the treatment till the end of 2008. Just about
22 percent children born to Indian women living with HIV were receiving ART for
preventing mother to child transmission2. As of March, 2009, 47,784 CLHIV were
registered for HIV care at ART centres and 14,303 CLHIV received free ART under
the National Paediatric HIV and AIDS Initiative. By September 2009, out of 16,940
paediatric patients alive and on ART, 4,453 were from Maharashtra and 403 from
Manipur, the two high prevalence states in India3.
CHAHA: Facilitating Access to Paediatric ART

Alliance India initiated an expanded child-centred Home and Community Based Care
and Support (HCBCS) Programme in the year 2007 called CHAHA (meaning ‘a wish’
in Hindi language). With funding from Round 6 of the Global Fund to Fight Against
AIDS, Tuberculosis and Malaria (GFATM), Alliance India (as a civil society Principal
Recipient), along with its consortium of nine Sub-Recipients (SR), is implementing
CHAHA in line with the strategic priorities of the National AIDS Control Programme
Phase III (NACP III).
2
Times of India, 1st October 2009.
3
Annual Report 2008-2009, Ministry of Health and Family Welfare, Government of India.
4
Anti-Retroviral Therapy in India : An Overview
Alliance India is working closely with different stakeholders and the government to
find ways to help keep orphans/CLHIV with their parents or extended families. It
envisages extending care and support to 64,000 children living with and/or affected
by HIV and their families (especially women-headed households) by January 2011.
Since improving access to health care and medical services is a prime objective of
CHAHA, prevention, treatment, care and support continue to be the focus of entire
intervention process under the programme. Ever since its inception, CHAHA has
been instrumental in facilitating access to ART by CLHIV and their families. The
programme strategy includes financial support to the families by taking care of the
travel cost incurred in taking the child to ART centre, facilitating and monitoring
treatment follow-up, providing paediatric counselling, nutrition and medicines (e.g.,
co-trimaxazole prophylaxis) to the affected children.
For long term sustainability and maintaining service availability to children Ever since its inception,
living with and affected by HIV, Alliance India aims to work in close CHAHA has been
collaboration with various departments and government ministries e.g.,
Women & Child Development, Social Justice and Rural Development. instrumental in
facilitating access to
ART by CLHIV and
their families.
5
3
CHAPTER
Study Rationale and Objectives
The reasons for lack of access to treatment of CLHIV include, among others,
issues of late diagnosis of infants, absence of clear guidelines and lack of concerns
amongst medical fraternity to follow the guidelines for treatment of children and
lack of access to appropriate paediatric ART formulations. Inadequate capacity
and knowledge of service providers in clinical management of paediatric HIV and
AIDS, lack of surveillance and data in this age group (<15 years), poor nutrition
for infants, inadequate follow-up of children born to HIV positive mothers, lack of
convergence with Reproductive and Child Health (RCH) services and a dearth of
minimum package for care and support of CLHIV are the other issues of concern.
Barriers relating to The paediatric formulation in ART was launched in 2006 but lack of access
to ART needs to be addressed at various levels. Barriers relating to health
health care system care system (including the programme level) and social barriers should
(including the be considered by policy makers and national HIV programme managers
programme level) in ensuring sustainable access to ART centres by children.
and social barriers The Strategic Directions were envisaged under the CHAHA programme,
should be considered with the following goals:
by policy makers
•• To enhance access of HIV positive children to ART centres.
and national HIV
programme managers •• To enhance the sustainability of access to ART centres for HIV positive
children beyond project duration of Phase II under CHAHA.
in ensuring sustainable
access to ART centres •• To tailor the strategies of programme implementation to improve upon
the efforts of facilitating sustainable access of children and families to
by children. ART centres and to overcome barriers.
Keeping in view the above, a study for identifying barriers to sustainable access of
children and families in rural India to ART centres and seeking solutions to address
barriers was conducted by Alliance India with the following objectives:
Objectives of the Study

•• To highlight policy level issues on access of children and caregivers, take them
up at appropriate forums and seek to build a wider and shared understanding
of issues around barriers/bottlenecks. The research-based policy-advocacy
initiatives will form the bedrock in addition to improving programme delivery
wherever desirable and possible.
•• To assess and highlight basic minimum level of standards in relation to access

to ART centres in terms of adequacy, quality and timeliness of support needed,
given the nature of resource-limited settings and gender differentials at the
community level.
•• To understand and highlight opportunities of linkages with state/district level

departments and/or local self-governing institutions like panchayats etc.
6
4

CHAPTER
District Profile: Sangli and Ukhrul
The study was conducted in two high prevalence states of India - Maharashtra and
Manipur. As the focus of this research was rural, one district each was selected for
study from these states - Sangli in Maharashtra and Ukhrul in Manipur.
General Indicators
According to United Nations (2005) report, approximately 72 percent of the population
in India resides in the rural areas and approximately 58 percent of the PLHIV dwell
in rural areas in India1.
Ukhrul district spreads over an area of 4,544 sq. kms with a population of 1,40,946.
Decadal growth rate of district Ukhrul is 28.98 percent. Sangli district is located in
the western part of Maharashtra. Spread over an area of 8,601 sq.kms., Sangli has
a population of 2,583,524. Decadal growth rate of district Sangli is 16.85 percent.
Literacy rate of Sangli is 73.12 percent and that of Ukhrul is 76.62 percent. In both
the project districts, women are less literate than men.
Demographic Indicators
Table 2: Comparative population of the study districts
Comparative Population Maharashtra Manipur

Total Population 9,67,52,247 22,94,000
Sangli Dist. Ukhrul Dist.
Total 25,83,524 1,40,946
Males 13,20,088 73,465
Females 12,63,436 67,313
Children (0-14 years) 6,90,620 49,302
(Source: Census of India 2001 online data)
Nearly 4.5 percent of the total population of Manipur dwells in Ukhrul district. The
census figures depict that the population of Sangli is less than 3 percent of the
total population of Maharashtra and nearly 25 times more than that of Ukhrul.
1
WHO report, 2005.
7
Economic Status
As for the economic status in study districts, per capita income of the people in
Sangli is low, at Rs.14,476. Yet, it is nearly two times of that in Ukhrul (Rs. 7,758)2.
The Government of Manipur recognises that 52.3 percent or half the population of
Ukhrul district is Below Poverty Line (BPL) even though the literacy rate is 76.62
percent. The BPL population is much higher in Ukhrul as compared to Sangli.
Factors like high BPL population, low literacy levels, low socio-economic status
and a strong belief in superstitions account for low health awareness amongst the
people, especially women, residing in rural areas.
ART Status in Sangli and Ukhrul

As per Naco 2008 report on ART, number of patients registered and their treatment
adherence in Sangli and Ukhrul districts is given in the following table:
Table 3: NACO report on ART in the study districts
Sangli Ukhrul
ART Services Total Total

Paediatric Paediatric Paediatric (Adult Paediatric Paediatric Paediatric (Adult
Adult Adult
(M) (F) (Total) + (M) (F) (Total) +
Paediatric) Paediatric)
Number of
persons
registered 232 8 8 16 248 4 0 0 0 4
during
September 08
Cumulative
number of
persons ever
registered in 8,731 591 448 1,039 9,770 84 0 0 0 84
HIV care by
end of
September 08
Cumulative
number of
patients ever 4,516 288 197 490 5,006 53 0 0 0 53
started on
ART
Cumulative
number of
699 15 9 24 723 2 0 0 0 2
patients who
ever died
Table contd...
2
Report of Directorate of Economics & Statistics, Government of Manipur, Wikipedia and Census 2001
8
Sangli Ukhrul

ART Services Total Total
Paediatric Paediatric Paediatric (Adult Paediatric Paediatric Paediatric (Adult
Adult Adult
(M) (F) (Total) + (M) (F) (Total) +
Paediatric) Paediatric)
Cumulative
number of
patients 681 46 29 75 756 0 0 0 0 0
"transferred
out"
Number of
all patients
whose
treatment 24 3 2 5 29 2 0 0 0 2
status is
stopped
treatment
Cumulative
Number of
patients who
48 5 2 7 55 1 0 0 0 1
are lost to
follow-up
(LFU)
Total number
of patients who
2,868 203 139 342 3210 47 0 0 0 47
are alive and
are on ART
Total number
of patients
196 19 18 37 233 1 0 0 0 1
who missed
treatment
(Source: CMIS report on District ART Data - National AIDS Control Organisation - Sept 2008)
9
5
CHAPTER
Research Methodology
The approach of the research was participatory and mainly focused to capture a
broad view of both the demand and supply issues from the perspective of community
implementation and policy making. This was done by assessing the existing status
of service provisioning, identification of existing gaps in access to ART services
by children and assessing the knowledge, attitude, behaviour and practices of the
general community, stakeholders, service users and service providers.
The Operations Research included both Qualitative and Quantitative methods and
had the following components-
•• Community Survey
•• Stakeholders’ Interviews
•• Facility Survey
The data collection tools and techniques comprised of both primary and secondary
sources. The primary data collection tools comprised of In-Depth Interviews, Focus
Group Discussions, Case Studies and Direct Observations. The secondary data
collection comprised of reports and documents from a number of sources including
those from relevant government agencies.
Sampling Framework
Selection of Study Sites/Districts
Identification and selection of districts for the study was done as per the following
criteria:
1. Districts falling in NACO’s “A” category districts.1
2. Districts identified by CHAHA programme.
3. Availability of target groups as prescribed in the sample size as per NACO ART
data 20082 and CHAHA monthly and quarterly reports3.
4. Availability of facilities catering to the target group in the identified states.
Sampling Design
Keeping in view the specific focus of the study and its time line, Stratified Random Sampling
Technique was used. Adequate rural sample size was planned in the designated districts
that cater to a significant rural population in Sangli and Ukhrul, to capture the issues.
1
Classification of districts is based on ANC/VCTC/STD/HRG data from NACO with A being highest prevalence
& D being lowest prevalence/vulnerability factor - HIV Sentinel Surveillance 2003-2005).
2
CMIS report on District ART Data - National AIDS Control Organization : Sep 2008.
3
SR quarterly reporting July- Sept 2008 – No. of Children Support Groups formed, No. of CLHIV and CAA
groups under 18 years of age benefiting from minimum package of care and support services.
10
Figure 1: Sampling design
Study in Rural Districts
Maharashtra Manipur
Rural Dist. Sangli Rural Dist. Ukhrul
Qualitative Study Quantitative Study

(Community Survey & (Facility Survey)
Stakeholders’ Interviews)
Semi-Structured Interviews with

FGD/Informal Discussion & IDI with Service Providers &
Service Users, Stakeholders and Line Departments)
Service Providers
It should be noted here that these centres are located in Municipal areas and
therefore they understandably extend services to some urban population as well.
Research Methods and Respondent Groups

A Community Survey using In-depth Interviews and Focus Group/Informal
Discussions was conducted to gather qualitative information from the community,
stakeholders and service providers under the following respondent groups:
Community Level
•• HIV positive children, HIV positive people, general community men, women and
children.
•• Community Care Centres and Drop-in Centres.
Programme Implementers
•• NGOs–Sub-Recipients (SR) and Sub-Sub Recipients (SSR).
•• Health Care Workers (HCW)-Auxilliary Nurse Midwife (ANM), Anganwadi Workers
(AWW), Link Workers and Outreach Workers.
•• Self Help Groups (SHG) and Community Based Organisations (CBO)

•• Private health care providers,
(Quantitative data was also collected under the community survey from a sample
of HIV positive women/parents/caregivers and children.)
11
A Facility Survey using Semi Structured Interviews was held with line departments
and service providers to collect quantitative data from the following sample
respondents:
Facility Level
•• ART centres, PPTCT, VCTC/ICTC, CCC, Gynaecologists, Paediatricians,

Counsellors, Private doctors, Lab Technicians.
Line Departments
•• Chief Medical Officer (CMO), Chief District Medical Officer (CDMO) Child
Development Programme Officer (CDPO), Rehabilitation Programme Officer,
TB Control Officer, Director Education, Teachers, Panchayati Raj Institution
(PRI) members, IEC Personnel, District Nodal Officer/ District AIDS Coordination
Officer.
Sample Size
The sample size and respondents for Sangli and Ukhrul are given in the following
table:
Table 4 : Sample size in selected districts
Number of Groups
Respondent Groups Sangli Ukhrul
Community Voices
PLHIV groups 4 4
CLHIV groups 4 4
General community (Men) groups 2 2
General community (Women) groups 2 2
General community (Children
affected with AIDS/children in 2 2
general groups
FGDs /
Informal SHGs/CBOs 2 2
Qualitative TOTAL 16 16
Discussions
& IDIs Service Providers No. of Interviewees
Health Staff (Auxilliary Nurse
Midwife(ANM)/Accredited Social
20 20
Health Activist (ASHA)/Anganwadi
Worker (AWW)
NGOs (SRs, SSRs) 2 2
TOTAL 22 22
Community Voices No. of Respondents
HIV positive women, parents,
18 18
care givers
HIV positive children 18 18
TOTAL 36 36
Table contd...
12
Facility Survey (Service Providers
Number Covered
and Line Departments)
Chief District Medical Officers 1 0
Chief Medical Officers 1 1
Directors/Obstetrics and
Gynaecology specialists (private 5 3
hospitals)
In-charge District TB control program 1 1
Child Development Programme
1 1
Officers
Director Education/Zonal Officer 0 1
Teachers preferably involved in
3 3
School AIDS Education Programme
District Nodal Officer 1 1
In-charge Rehabilitation
0 1
Programmes
State IEC Bureau 1 1
PRI Members 1 1
Semi- TOTAL 15 14
Quantitative Structured
Interviews ART centres
2 for Sangli No. of Respondents
1 for Ukhrul
Medical Officers ART 2 1
Counsellors 2 1
NGO members 1 0
Pharmacists 2 1
Paediatricians 0 0
TOTAL 7 3
PPTCT centres
2 for Ukhrul (ICTC – 2)
In-charge PPTCT 2 2
Counsellors 1 2
Lab Technicians 1 2
Nurse Labour Room 2 1
TOTAL 6 7
Table contd...
13
PPTCT centres
2 for Ukhrul (ICTC – 2)
In-charge PPTCT 2 2
Counsellors 1 2
Lab Technicians 1 2
Nurse Labour Room 2 1
TOTAL 6 7
VCTC
2 for Ukhrul ICTC
Counsellors 1 0
In-charge VCTC 2 0
Lab Technicians 2 0
Semi- TOTAL 5 0
Quantitative Structured CCC
Interviews (2 for Sangli and 1 Ukhrul each)
No. of Respondents
Drop-in Centre (DIC)
(2 for Sangli and 1 Ukhrul each)
In-charge CCC 4 2
Doctor 4 2
Counsellors 4 2
Total 12 6
Counsellors 5 0
0
Gynaecologists 5
(ANM-4)
Lab Technicians 5 3
Paediatricians 5 1
Total 20 8
Total Rural Sample 139 112
It may, however, be noted that In Ukhrul, practically all the facilities were included in the study as the
number of facilities to be covered to reach the sample size was less as compared to Sangli.
It was also decided that in case of shortfall in sample size, it will be covered from a rural area within
the respective state where CHAHA is operational. As the adequate number of sample proposed in the
study was not available in Ukhrul, the deficient sample was taken from Bishnupur.
Ethical issues
At all times during the study, privacy of all CLHIV, their parents and care givers
involved in the study was maintained. Care was taken to protect children dropping out
of study due to any reason in terms of confidentiality and benefits. Due procedures
were followed in obtaining informed consent of all category of respondents who
participated in the study.
14
6

CHAPTER
Access to ART Centres: Key Findings
HIV Diagnostic Testing: Global reviews on barriers to access paediatric ART

Barriers to testing infants and children for HIV infection lead to delay in diagnosis, and many infants
and young children die before HIV is diagnosed or therapy can be given. Most paediatric HIV
infections worldwide are attributable to mother-to-child transmission, with transmission occurring
during pregnancy, around the time of birth, or through breast feeding. Special tests are needed
to diagnose HIV infection in infants and young children. Psychological barriers to testing infants
also lead to delays in diagnosis. The social stigma of the diagnosis for mother and child1 and
lack of treatment availability2 may keep women from testing themselves to know about their own
HIV status and testing their children for HIV. Community-wide fear of discussing HIV infection in
children may compound the effect of this barrier.
Source: 1
Varga CA, Sherman GG, Maphosa J, Jones SA. Psychosocial consequences of early diagnosis of
HIV status in vertically exposed infants in Johannesburg, South Africa. Health Care Women Int. 2005;26 :3
87–397 [CrossRef] [Medline].
2
Levy NC, Miksad RA, Fein OT. From treatment to prevention: the interplay between HIV and AIDS treatment availability
and HIV and AIDS prevention Programmememing in Khayelitsha, South Africa. J Urban Health. 2005;82 :498 –509.
The barriers faced by rural population in accessing ART centres are significantly
pronounced because of social, economic, infrastructure and community related
factors. As a result, a large number of CLHIV and families are dissuaded or choose
not to access the free ART services provided by NACO.
An attempt was made by this study to identify the main barriers that adversely affect
access to ART by children and families in rural India. Some of the apparent barriers
that emerged as a result of the study are described below:
Stigma and Discrimination

Stigma and the resultant discrimination are seen as major barriers by
the community, care givers, health care providers, children living with Stigma and the
and affected by HIV and their parents that bar access to ART services. resultant discrimination
This is more pronounced in rural areas due to low literacy and awareness are seen as major
levels, myths and misconceptions about HIV, coupled with lack of barriers by the
exposure to communication media. Limited reach of the programme to
community, care givers,
rural hinterland further worsens the situation. As mentioned by general
community women during FGD- health care providers,
“Log unse baat nahi karte…” (People do not talk to them) “Log unke marne children living with
par nahi jaate” - (community does not attend cremation of positive people). and affected by HIV
In rural India which has a significant face-to-face relationships and close
and their parents that
inter-personal ties, stigma and discrimination are much more discernible. bar access to ART
services.
15
CLHIV are many a time barred from community level events, activities or groupings.
Denial of access to schools or community interactions are also commonplace. Also,

there are innumerable instances where CLHIV or their parents have been denied
right to ancestral property and even turned out of the villages once their HIV positive
status was disclosed.
“HIV badith bachchoe ko negative/dusre bachchon ke sath nahi khelne diya jata…..”
(HIV positive children are not allowed to play with other children) - as informed by
PLHIV and CLHIV groups.
The situation becomes a major concern in schools in relation to children or parents

whose HIV status is known. These children are subjected to ridicule, ostracism,
isolation and other subtle forms of discrimination by peers and teachers. Consequently,
the parents do not take their children to ART centre in the hope that the status of
the children is not disclosed.
“If my friends are having food and I go to them, I am pushed back and taunted that I
am a disease carrier and I should not even look at their tiffins” - a significant reason
of non-disclosure of status as pointed out by an HIV positive child.
A child mentioned “…school mein teacher aur bachche bhi bhedbhav karte hain
aur kabhi kabhi to school se nikal bhi dete hain” (In the school, teacher and children
discriminate and sometimes ask me to leave the school).
Lack of psycho-social support for CLHIV and their families tends to

Kai log humare aggravate this situation. In an atmosphere surcharged with an all-
maa – baap se theek pervading stigma, parents of CLHIV are cut off from the social groups
reducing the level of daily interactions to the extent that even other children
se baat nahi karte in the family have to bear the brunt of stigma in the form of ostracism
kyunki hume HIV and social isolation.
hai, aur humare bhai
As mentioned by a CAA in Ukhrul that - “…karigumba eikhoigi schoolgi
behen ko bhi achcha eemanabasingna makhoi HIV positive hoi haiba khangba taradi, makhoina
nahi samajhte jinhe classta accept touroi……” (If their school friends come to know about
the status of their HIV positive siblings, they would not accept them in
HIV nahi hai (Some
the class).
people do not talk
Also children in the CLHIV group opined that - “kai log humare maa –
with our parents
baap se theek se baat nahi karte kyunki hume HIV hai, aur humare bhai
nicely due to our behen ko bhi achcha nahi samajhte jinhe HIV nahi hai” (Some people
HIV positive status. do not talk with our parents nicely due to our HIV positive status. They
also do not even like our brothers and sisters who are not HIV positive).
They also do not
even like our brothers In a state of voluntary non-disclosure or concealment of status, it is
apparent that parents or caregivers choose not to seek the support of
and sisters who are ‘significant others’ even in conditions of their own poor health or lack of
not HIV positive). resources. Concealment and non-disclosure is resorted to by parents
and caregivers so that their status does not result in discrimination at the
-CLHIV group, Sangli
level of extended family, neighbourhood or the wider village community.
Apart from a general climate of social stigma, the study identified self generated
stigma among adolescents. This is accompanied by biological and psychological
changes experienced by children in the age group of 11 to 18 years as a part of
their growing up process. Remarked a child during a discussion with CAAs that -
16
“aspatal mein lambi line mein main aur meri behen ART lene ke liye khade the...
to hamarey school ke ladke ne dekh liya aur fir sabko bata diya ki meri behen ko

HIV hai. Tab se koi bhi ladka humse baat nahi karta (My sister and I were standing
in the long queue in the hospital for ART when a boy from our school saw us and
then told everyone that my sister is HIV positive. Since then no boy talks to us).
“I am afraid of my friend, she might see me in the ART centre, and then the doubt
will come in her/ his mind that what I was doing there?” - as brought out by an HIV
positive girl.
These children have a desire to be a part of their peers and experiment with
adolescent behaviours. It is felt by adolescents that disclosure of HIV status will
take away their social space among the peer group members leading to difficulties
in sustaining their relationship with their friends and the ‘we-feeling’ of
their close-knit peer groups. Therefore, the self-inflicted pressure of
Aspatal mein
maintaining confidentiality remains an important feature agenda in the
lives of adolescents. lambi line mein main
aur meri behen ART
The study findings reveal that a majority of CLHIV (more than 80%) in the lene ke liye khade
11-15 years age group preferred not to disclose their sero-status to their
friends. While a few (about 15%) mentioned having revealed their positive the... to hamarey
status to their larger circle of friends, only 1 percent revealed it to close school ke ladke ne
friends in the peer group. As a result of strong self-stigma experienced dekh liya aur fir sabko
by adolescents in the family, parents more often dissuade children from
disclosing their status due to the fear of consequential discrimination.
bata diya ki meri
behen ko HIV hai.
Discrimination and stigma are also faced by CLHIV and their families Tab se koi bhi ladka
at the health care facility especially at the hands of lower level staff and
humse baat nahi karta
this is more pronounced in rural and small urban centres as compared
to urban areas or big towns. A PLHIV woman remarked during FGD - (My sister and I were
“….chaprasi humse dus rupiya leta hai aur tab hume aage line mein art standing in the long
lene ke liye laga deta hai…..” (Peon takes a bribe of Rs. 10/- to put us queue in the hospital
ahead in the queue).
for ART when a boy
CLHIV are often denied adequate medical care, refused admission, from our school saw
subjected to disdain and sub-humane behaviour. Wearing of masks, us and then told
avoidance of touch and use of pens or pencils to examine them are
everyone that my
examples of such behaviour by the health caregivers at the government
facilities. On raising their voice, they often face open and brazen sister is HIV positive.
non-cooperation sometimes in full public view. Complained an HIV Since then no boy
positive child - “Doctors do not examine HIV positive people properly; talks to us).
they do not touch us. Sometimes they examine us with a pen only.”
- a CAA, Sangli
Economic Constraints
Inadequate availability of financial resources is a major hurdle for the children and
families in accessing ART services. The literacy rate in rural areas is low and the
opportunities to remain gainfully employed are significantly less. These situations
mean that the family finds it difficult to rebuild the resources that are depleted on
account of treatment expenses incurred even before a person is tested positive.
A woman added during a case study session - “Peisakheidi eikhoi nupana drug
charambanina mahakna puraga loina chatkhre laireibakta, adunani eikhoina houjik
17
sen thumgi awaba mayoknaribasi. Sarkarna eikhoi HIV positive ki oiba sen thumgi
mateng khara pamgbiradi fani…” (As he was a drug user, all money has been carried
away by my husband to the heaven. That is why we are facing financial problem. It
will be nice, if government provides some financial support to we PLHIV).
The study focused on districts with a predominantly rural population where

Eikhoidi nungtigi the mainstay of family income is agriculture. The agricultural income in
thabak suraga peisa these rural hinterlands is low and subject to vagaries of nature. It further
gets accentuated in hilly terrain and locally disturbing factors like long
tanba kangbuni standing insurgency as in Manipur. In addition, depleted capacity of
Hospital chatpa one or both parent or caregivers due to sickness or old age causes the
income to reach abysmally low and unsustainable levels. Those who
numitudi thabak manage to get some work, frequently lose their jobs because of stigma
karamna chatkani. attached to this disease if their status is disclosed. It was mentioned by an
HIV positive man that - “Mere maalik ko pata chala ki mujhe AIDS hai….
Thabak chatpagi mujhe nikaal diya gaya….…kuch kamane ke liye nahi tha aur……kuch
mahutta, peisa bhi khane ke liye nahi tha….…” (My boss came to know about my HIV
status, fired me from the job… there was no way to earn ..there was
oina tingi. Aduna
nothing to eat).
eikhoidadi ani thokna
For working parents, going to the hospital consumes one whole day,
mangjei (We are which means they have to lose their daily earning while having to spend
daily wagers. How additional money on the transport and other logistics. It, therefore,
becomes difficult for these families to access free ART services at distant
can we go to work on government centres despite the fact that ARV drugs are provided free-
the day we go to the of-charge.
hospital? It is double “Eikhoidi nungtigi thabak suraga peisa tanba kangbuni Hospital chatpa
loss for us). numitudi thabak karamna chatkani. Thabak chatpagi mahutta, peisa oina
tingi. Aduna eikhoidadi ani thokna mangjei” (We are daily wagers. How
- a PLHIV, Ukhrul can we go to work on the day we go to the hospital? It is double loss for
us) - as explained by a PLHIV in Ukhrul.
“…Eikhoigi khundadi mee loinamak laireiye, hospitalsu yam lapi, buski bhara piningai
leitabasu yao-ee…” (In our village, people are poor, hospital is very far, and sometime
they do not have money for bus fare) - as mentioned by general community women.
All the above factors combined lead to financial hardships in meeting the basic
necessities like nutrition, shelter and clothing. Inadequate nutrition to CLHIV can
directly impact the CD4 count and the prognosis.
Expenses are required to be made to get pre-ART investigations done and to

provide for treatment for Opportunistic Infections (OI) as some of the drugs for OI are
sometimes not available in the hospital and have to be purchased from the market.
In addition, a sum of Rupees five has to be spent on stamping the registration card
on every visit. These expenses, for many families, are not within their means on a
regular basis. As clearly mentioned by a CLHIV in Sangli - “Hume har bar paanch
rupaiya dene padte hai aur phir jaanch hoti hai ...” (Every time we have to pay Rs.
five for registration to get ART).
“…Garibi ke karan bahut sare log swasth sewao tak pahuch nahi sakte aur acha
khan pan bhi nahi rakh sakte….” (Due to poverty, people can’t access health facilities
or take proper nutrition) - as voiced by general community men.
18
The economic constraints are even more pronounced in the case of child-headed
families. In such cases, there is a near-total dependence of the family on the

child or an old caregiver leading to treatment taking a back seat. The parents and
grandparents who are already financially drained having spent enough money on the
treatment of their son/daughter also feel the treatment to be an additional burden.
The psychological condition due to earlier bereavements in the family adds to their
woes. Children, whose parents are or were Intravenous Drug User (IDU), have to
commonly face financial stress as most of the cash and material resources are
already used up on drug use, care and treatment.
Infrastructural Issues
The study findings clearly highlight the issues of infrastructure which adversely
affect access to ART centres. The geographical area of the districts under survey,
location of ART centres, existing number of centres, availability of transport and
travel time, climatic conditions et al are some of the important factors which have
a major impact on the access of children to ART centres.
…hospital
The ART centres are mainly located in district centres. Most of these thapagi awbane, bus
centres, barring those located in urban metropolitan cities and large
towns, cater to a large population which lives in far-off villages. The
masing yamdabagi
CLHIV and caregivers have to cover long distances to reach the centre. awane, hospitalda
The situation is compounded by the fact that there is lack of adequate toina chatpasi
transport connectivity from villages to the ART centre coupled with poor
condition of the roads. As general community expressed - “…hospital makhoidadi yamna
thapagi awbane, bus masing yamdabagi awane, hospitalda toina chatpasi waba jatnida….
makhoidadi yamna waba jatnida….” (Long distance to the hospital, very (Long distance to the
few buses to the town, going regularly to the hospital is a big challenge).
hospital, very few
“Aushadhi kewal civil aspatal mein hi milti hai aur logon ko bahut dur buses to the town,
se aana padta hai….” (People have to travel long distances to reach
going regularly to
the ART centres, since ART is available only in the Civil Hospital) - as
brought out by a health care worker in Sangli. the hospital is a big
challenge).
A CLHIV group in Bishnupur also added-“Bishnupuradadi ART leite,
- general community group,
aduna layengnabagimak Imphal tana chatli…” (There is no ART centre Sangli
in Bishnupur, so we have to go to Imphal for treatment).
In certain instances people in far-flung villages have to walk as far as

3-5 Kms to catch the first available transport from a nearby village or town with an
additional travel time of usually of 3 to 4 hours, sometimes even without seat to
reach the district headquarters. For reaching the district headquarters, the parents
and children have to further walk down or take another conveyance from the bus
stand to reach the ART centre. A CLHIV group mentioned-
“Humein paanch se saat Km. paidal chalna padta hai aur phir bus pakadni padti
hai…” (We have to walk down 5 to 7 Kms to catch the bus and reach the ART centre).
“Eikhoi sidagi Imphal youba bus leitabanina, main road faoba khongna natraga
autoda chatlaga main road tagi bus farga Imphal faoba chatlaba matungda, Imphalgi
Bus kamfamdagi, auto natraga rivkshaw tonglaga RIMS faoba chatli, yamnasu wai”
(There are no direct buses from our village to Imphal. We have to walk or go by auto
to the main road to catch a bus. After reaching bus stand/stop in Imphal, we have to
catch a rickshaw or another auto to reach RIMS. Doing all this we really get tired).
19
In district Ukhrul, for people living in the villages in interior of the district like Namrei,
Kasom Khulele, it takes nearly 7 to 8 hours to reach RT centres. In some places
like Kasom Khulel, as the buses are available on alternate days, only two buses are
operational from Ukhrul town to Kasom and Khulel sub divisions. As private service
dominates the transport map in the state of Manipur, charges are prohibitive on
longer routes. The movement is further restricted due to bad condition of the roads
in the hilly terrain. The cumbersome, erratic and bothersome transport services
result in missing or postponing the pre-fixed appointments for testing and receiving
their monthly quota of ARV. The centres are open for fixed durations of time which
results in additional expenditure to be incurred on food and lodging. The CLHIV and
caregivers have to stay overnight when transport is unavailable to take them back.
Busna hospital Similarly in district Sangli, the travelling time from some villages to
Sangli Civil Hospital is nearly 3 to 5 hours with or without a seat in an
faoba chatpada pung
overcrowded public transport. These long distances coupled with lack of
ahum natraga mari adequate monetary resources, physical condition of the parents and ailing
change, lambisu yam children, non availability of time to cover the long distances and weather
fate, karigumbada conditions especially in Ukhrul pose a big challenge for children as well
as care givers to manage their appointment with the ART centre. Another
kok ngaodana obasu
barrier highlighted by the CLHIV is that after travelling long distances to
yao-ee, aduna lambi the ART centre, there is no provision of a resting area or room for them.
saangna chatpase
yamna wai…..(It “Busna hospital faoba chatpada pung ahum natraga mari change, lambisu
yam fate, karigumbada kok ngaodana obasu yao-ee, aduna lambi saangna
takes 3-4 hours to
chatpase yamna wai…..” (It takes 3-4 hours to reach hospital by bus.
reach hospital by Road is also not good, and we have headache and vomiting; therefore,
bus. Road is also traveling long distance is tiresome for us)- as strongly shared by a CLHIV.
not good, and we
Women living with HIV (WLHIV) who are in the last trimester of pregnancy
have headache and
face difficulty in accessing antenatal care and PPTCT services. These
vomiting; therefore, facilities are conspicuously low in number and are far away from rural
traveling long areas. This situation is sometimes heightened due to lack of support from
distance is tiresome families and certain age-old beliefs and practices. In such conditions,
pregnant WLHIV prefer to deliver at home with the help from untrained
for us).
dais (midwife). This then serves the purpose of keeping the status of child
- a CLHIV, Ukhrul undisclosed even if the child may be a fit candidate for ART.
Lack of Support from Caregivers

The study findings have underlined several micro level factors that have a bearing
on access of CLHIV to the ART centres. Owing to several procedural difficulties and
formalities at the ART centres, the CLHIV need parents or other adult caregivers to
accompany them to the ART centre for availing the services.
It is known that low literacy levels in villages along with prevalent myths, beliefs
and practices relating to health issues lead to low health-seeking behaviour. They
instead take recourse to quacks and traditional faith healers rather than seeking
referral to a proper health care facility leading to grave prognosis. In some cases, the
apprehension of side effects of treatment also inhibits the parents to initiate ART for
the children. In many instances, the fatalistic attitude of the parents is illustrated by
their affirmation that ‘death is a certainty, sooner or later, so why access treatment
with so much trouble’. In such situations, the attitude of the parents itself becomes
a barrier in accessing ART centres.
20
While the state of parents or caregivers on account of health, age and/or financial means
leading to lack of support to CLHIV in accessing ART centres for care and treatment

is one prominent reason, another facet is evident in case of estranged families, broken
families and orphans. As expressed by a general community group man -
“Jin bachchon ke maa baap nahi hote un bachchon ko aspatal le jaane wala koi
nahi hota” (Those children who don’t have parents, have no one to take them to
the hospital).
A general community woman expressed her feeling towards orphaned HIV positive
children - “bin maa baap ke bachchon ka koi bhi sahara nahi hota ki unhe art
centre tak le ke jaya jaye...” (orphans do not have any support mechanism so that
they can be taken to the ART centre).
Extreme gender biases coupled with stigma continues to play its role in
adversely affecting the health seeking behaviour of women living with Peisa
HIV. Destitute WLHIV are thrown out of their houses along with their paidabagi awabadi
HIV positive children with little or no means to support the treatment for eikhoi khaktagi
these CLHIV - “…Babasu kuire sikhiba, mahakna drug chabada imungi
peisakhei loinamak loisinli hai, natlamdrabadi eikhoi lairaramloibadani natana khungi mi
haina imana hai. Imana keithel chtlaga potlaka ensang napi yolaga imung khudingmakini. Tha
manung yengsiilibani…” (Father had expired long time ago. Mother
kudingi hospital
shared that father used to take drugs, and he utilised all money/property
on that. Otherwise, we would not have been poor like we are today. chatpa haibase peisa
Mother sells vegetables in the market, and run the family) - as brought tingbanina, eikhoi
out by a child affected with AIDS (CAA) during FGD.
HIV positive oiba
The same causative factors are also largely true for WLHIV who are kangbugidi laibak
widowed. A gender reality that affects access to ART is that WLHIV or thibanine (Problem
widows are not comfortable in engaging in public spaces. It is common
knowledge that due to acute poverty and lack of gainful employment
of not having money
opportunities in rural areas, individuals and families migrate to urban is not only for us, but
areas in search of livelihood. Some of these migrated families return to for all of us in the
the villages after the parents and children have undergone treatment in
their town or city of residence. Some of these parents display apathy in village. Going every
adherence to ART for themselves and their children. These parents do not month to the hospital
make efforts to find the nearest ART centre and re-register the child much consumes money;
for the same reasons outlined above. Some parents of CLHIV opined -
therefore, it becomes
“Peisa paidabagi awabadi eikhoi khaktagi natana khungi mi khudingmakini.
Tha kudingi hospital chatpa haibase peisa tingbanina, eikhoi HIV positive extremely difficult for
oiba kangbugidi laibak thibanine” (Problem of not having money is not only us).
for us, but for all of us in the village. Going every month to the hospital
consumes money; therefore, it becomes extremely difficult for us). - Parents of CLHIV, Ukhrul
Lack of Awareness about Paediatric HIV/AIDS and

ART Services
There is a lack of awareness in the rural community about paediatric HIV/AIDS and
availability of paediatric ART services. This is so because the initial focus of the
policy makers has been mainly on adult-centric treatment as evidenced by the fact
that ART was first rolled out for adults followed over two years later by paediatric
ART. The study sought to find out the knowledge of respondents (HIV positive
21
women) on routes of transmission and the right age for testing of HIV status of a
child as described below:
Knowledge of HIV positive women on modes of transmission: The research

sought to understand the knowledge of WLHIV on modes of transmission of HIV.
Significantly, more than 90 percent of the women were aware of all the modes of
transmission of HIV including mother-to-child transmission. The knowledge of routes
of transmission among WLHIV is high thereby creating optimism about enhancing
PPTCT services in rural areas. However, the knowledge of women about the right
age for testing of children was found to be relatively low.
Graph 1: Knowledge of HIV positive women (respondents) on modes of transmission
Unprotected sexual
contact only
Unprotected sexual
3%
contact, Infected syringes
and needles, infected blood
transfusion
3%
Unprotected sexual
contact, Infected syringes
and needles, infected blood
transfusion, infected mother to
child
94%
Knowledge about the right age for HIV testing of children: Nearly 40 percent
of the women interviewed were aware about the correct age of testing i.e.,
18 months as per existing facilities. The remaining 60 percent of the women either
had incorrect knowledge of the right age at which a child can be tested or did not
know at all about the age for HIV testing as per existing facilities. The knowledge
of women about the age for HIV testing of a child (18 months) is deemed correct
because their knowledge is based on presently used Enzyme-Linked Immuno
Sorbent Assay (ELISA) method. These rural women are completely ignorant about
another possible methods of testing i.e.; Polymerase Chain Reaction (PCR), Deoxy-
Ribonucleic Acid (DNA) – that can confirm the HIV status of children below 18 months
as well. The health care providers do not discuss about the alternative methods
with parents since they believe that it is meaningless to discuss about a method or
technique that cannot be made available to patients.
The general community especially in the rural areas is not completely aware that ART
is now available and is being provided free of cost at the government facilities. This
can be attributed to the fact that there is a lack of child-focussed IEC on paediatric
22
HIV and AIDS and ART. The existing IEC material developed on HIV and AIDS is
too generic and adult-centric.

The existing focus of service delivery remains on sexual transmission and not on
parent-to-child transmission, so adults are still the main target for ART delivery. This
unidirectional focus has resulted in lack of awareness among the parents about the
potential risk of transmission from HIV positive mother to the child. The study clearly
brings out that there is inadequate awareness about the available PPTCT services
which has resulted in failure of adoption and utilisation of preventive strategies for
transmission of HIV from mother to the baby. As mentioned by an HIV positive male -
“Mujhe nahi pata tha ki PPTCT centre mein ART ki dawaiyan milti
hain….agar mujhe pehle pata hota…to mein apne bache ko bacha sakta Mujhe nahi pata
tha………..” (I didn’t know that ART or paediatric ART is available in tha ki PPTCT centre
PPTCT centre, if I had known I would have been able to save my child).
mein ART ki dawaiyan
Lack of education and awareness about the services and significance of
milti hain….agar
treatment for the CLHIV has resulted in inability of the parents or children
to understand the implications of HIV and AIDS. As highlighted by an mujhe pehle pata
outreach worker - “Karigumbada HIV positive oiba mama mapasingna, hota…to mein apne
karigumba machasu HIV positive oiramlabadi kari thoklagaba kanduna
machgi test touba kibasu yao-wee” (Sometimes the HIV positive parents bache ko bacha sakta
are afraid of conducting HIV test for their children, due to the inbuilt fear tha…(I didn’t know
of the consequences). that ART or paediatric
They also fail to comprehend the benefits of ART for CLHIV through ART is available in
a proper treatment adherence and continuous health monitoring. To
PPTCT centre, if I had
make matters worse, there is widespread ignorance that even without
treatment, the quality of life and longevity of CLHIV is assured. Such known I would have
beliefs emanating from ignorance adversely impact access to ART been able to save my
centres. Access to ART centres is not seen here in terms of first time
visits. The fact is that even if families and children access ART at these
child).
centres, such beliefs come in the way of regularly accessing ART centres
- HIV positive male, Sangli
for periodic health monitoring and regular treatment regimen.
Further interviews and discussions highlighted that there is inadequate awareness

among the community members about the community care centres and the existing
service availability in these centres. As a result parents resort to treatment by a
private practitioner inexperienced in paediatric HIV, a faith healer or some local
quack. This is a vicious cycle in which the parents and caregivers get entangled.
Limited integration of RCH with HIV and AIDS control programme also results in
lack of awareness amongst the grass root workers who are the only direct contact
between the health care services and service users and are actively linked with
mother and child health issues in the field.
“Humein ART ke vishay mein zyada jankaari nahi hai” (We don not have much
knowledge about ART) they further added that “Hum keval HIV positive mahilayon
ko samay nahi de sakte… humein aur bhi kaam hain.. aur bhi mahilaon ko dekhna
hota hai” (We can’t just give all our time to HIV positive women as we have other
duties and other women to look after as well) - as was remarked by Health Care
Workers (HCW) and Anganwadi Workers during discussions with them.
23
The elected leaders of the three-tier Panchayati Raj Institutions (PRI) at village,
block and district level are ignorant about the issues of HIV and AIDS at the local
level, leave alone issues of paediatric HIV. They are, therefore, also unsure of their
role in relation to issues of HIV in an atmosphere surcharged by widespread stigma
and discrimination. The Gram Sabha, comprising all adults above 18 years of age,
is widely understood as ‘village parliament’. It is an important deliberative body at
the village level that sets the agenda for village development and social justice to
all in a panchayat. However, due to lack of proper mobilisation of Gram Sabhas,
its socio-political agenda of development and social justice to the marginalised
and vulnerable does not do enough on HIV including that of access to treatment
for children. Some general community men expressed - “…HIV gidamak khungi
khulaka, cillage chiefna kari toubage haibadudi eikhoi khangde…” (We do not know
what the village chief is doing for/on HIV).
In the absence of any meaningful contribution by the state government for CLHIV
by way of adequate educational, travel and nutritional support or special incentives
to stimulate proper treatment adherence by the CLHIV and their families, the issues
around paediatric HIV and paediatric ART continue to be lower down on the health
agenda.
Summing it all, poverty, illiteracy and ignorance coupled with lack of political
stewardship at various levels become the contributory factors for non-reporting
and non-adherence.
Issues of Capacity and Accountability at ART Centres

There is shortage of staff at ART centres when seen in relation to the large population
being served by these centres. There is one government ART centre, each in Sangli
and Ukhrul to cater to people from a large rural geography of the district. In order to
manage a sizable patient load, enough quality time to children and parents is not
provided at the health facilities. A CLHIV pointed out - “Civil Haspatal
There is shortage of mein bahut dhakke khae…kisi ne admit nahi kiya DILASA walon ne madat
ki….phir ilaaz shuru karwaya….” (I suffered a lot in the Civil Hospital
staff at ART centres
moving here and there but they did not admit me…..then through help
when seen in relation from Dilasa (NGO) my treatment was started).
to the large population
Also due to the non-availability of paediatricians in the ART centres, the
being served by these children are usually treated by the Medical Officer/In-charge of the ART
centres. centres who are unable to provide the required care. This demotivates
the parents who hesitate to bring the child to the ART centre regularly.
The present staffing pattern which is seen as inadequate hinders the identification,
follow-up process of HIV positive mothers and exposed children or proper counselling
services for the WLHIV and the CLHIV.
“Kewal DILASA ke log hi hume saari juaankari aur maddad karte hain, sarkar ki aur
se kisi bhi prakaar ki koi maddad nahi hai” (It is only the DILASA people who help
us out in all the things. Other than this there is no support from the government or
any other agency for financial, travel, treatment and psychosocial support).
The existing personnel in ART centres comprising Medical Officers (MO),

Counsellors, laboratory technicians, nurses and even the paediatricians (wherever
24
available) are not trained on paediatric counselling which creates a communication
gap between the providers and the CLHIV. Inability of the providers to converse

in a language that can be easily understood by the child is a big challenge for
the counsellor. They therefore opt to counsel the parents in place of the child.
This leaves many unanswered questions in the mind of young CLHIV and
ultimately inhibits their access to ART services. A CLHIV clearly mentioned that -
‘‘...zyadatar doctor bachon ko counsel nahi karte hain, wo kewal parents se hi baat
karte hain..” (Mostly the doctors counsel our parents, they only talk to our parents).
The community had certain reservations about some of the doctors who are engaged
in dual medical practice of working in government hospitals and also doing private
practice. The community expressed fears that this may lead to malpractices, issues of
transparency, accountability and a conflict of interest. It is also seen as a discouraging
factor by people accessing treatment services.
It is noted by the community that some doctors choose to commute daily from their
place of residence in a distant town to the place of posting in another district town.
This leads to their reporting late at their station of duty. Parents and children have
to often wait for long hours.
Kabhi doctor
Some of the CLHIV revealed that -
hota hai.. kabhi nahi
“Kabhi doctor hota hai.. kabhi nahi” (Sometimes doctors are present and (Sometimes doctors
sometimes not).
are present and
“Doctors hamse achche se baat karte hain lekin zyadatar hote hi nahin sometimes not).
hain” (Doctors treat us nicely but the problem is that most of the times
they are not available). - a CLHIV group
This is inconvenient to parents and children who travel long distances under trying
circumstances and are perennially worried about their travel back to their distant
villages. The community believes that some of these ART centres in remote district
towns need to be monitored well to enhance patient confidence in the services
offered in these centres.
A major issue of concern is the lack of uniformity of training among the service
providers implementing overlapping programmes (PPTCT/VCTC/paediatric ART)
and the need of creating uniform modules based on the graded level of knowledge
to be imparted to specific group of professionals.
Inadequate availability of staff with unplanned and inefficient administrative

procedures in the government centres contribute towards inadequate maintenance of
the equipment resulting in long waiting period of up to 15-20 days for an ultrasound
as part of pre-ART investigations and delayed initiation of ART. CD4 machines
operate only thrice a week in Ukhrul.
“CD4 su hapta amada ahumlak khak sijinei, ningthoukabane, yumasakeisane aduga

eeraine. Atei matamdadi CD4 countsu toude. Aduna nong fathok thengba yaoradi
CD4 test toudana halakpasu yao-ee” (CD4 machine operates only thrice a week –
Monday, Wednesday and Friday. If we are late, we have to go back without CD4
test and then visit the centre all over again).
These machines are sometimes out of order on designated days in both Sangli
and Ukhrul. In such situations, the CLHIV and their accompanying caregivers have
25
to go back without CD4 test and then revisit the centre resulting in financial and
physical burden. The non-availability of DNA-PCR testing facility in the ART centre
for testing of children below 18 months contributes to a high number of loss to follow
up exposed infants.
All these factors result in creating long break between the first reporting at the ART
centre and the initiation of treatment thus hindering adherence of children and their
families to the ART centre. At some centres it takes at least 15 days between the
maiden visit to the ART centre to actually starting ART. This avoidable long time
taken to complete the long procedural formalities deters the CLHIV and families to
access the treatment services.
With inadequately staffed centres, systems and processes that are confusing,
and lack of coordination between the referring centres and the government ART
centres, the drop-out cases are very difficult to follow-up. The counsellors usually
have no time to follow-up with children who have missed ART because they have
to manage the new cases in ART centre. They do not have access to adequate
means of communication or resources to reach the drop-outs in the villages that
are located in the interiors of the predominantly rural districts.
Lack of Coordination and Collaborative Efforts between

Agencies
A major barrier highlighted by the programme Implementers at various levels was
the lack of convergence between related programmes like ICDS, RCH and TB with
PPTCT, paediatric HIV/AIDS and ART programmes. This has led to the emergence
of various stand-alone programmes within the same health care system that provide
isolated services to the common target groups.
A major barrier Consequently, there is a significant level of gap in awareness levels of

the ICDS, RCH and NRHM workers. The most distinct example is the
highlighted by
lack of integration of existing Maternal and Child Health (MCH) services
the programme with the PPTCT and paediatric HIV and AIDS services at the district
Implementers at level leading to low awareness among the existing grassroot health
functionaries about HIV and AIDS and paediatric issues. This results
various levels was the in lack of information among the community about the availability of
lack of convergence paediatric HIV and AIDS services. This is also coupled with a lack of
between related delegation of authority to the programme implementers in the field to
adopt innovative, locally appropriate mechanisms for identification of
programmes like exposed children and effective follow up of the drop-outs.
ICDS, RCH andTB
with PPTCT, paediatric The lack of coordination is not only discernible at the programmatic
level but also between different departments within the same facility,
HIV/AIDS and ART for example, medicine, Obstetrics and Gynaecology (OBG), paediatrics
programmes. and ART centres etc.
The mechanisms of joint collaborative activities with HIV-TB have also not been
worked out nor has there been adequate of funds from the states for carrying out
the activities for sustained joint activities. The roles and responsibilities of different
stakeholders involved in joint activities needs to be clarified. Some officials stated
26
that there are no official records of children with TB-HIV co-infection available as the
reporting formats do not ask for it and also that there are gaps in support activities

like linking nutrition and palliative care services with TB-HIV.
An important area of concern which has a strong influence on the access of children
to ART is the lack of understanding among school teachers on paediatric HIV and
AIDS issues. Thus far their rapport in communities has not been utilised
to facilitate awareness on paediatric HIV and AIDS, identification and An important area of
follow up of CLHIV and HIV positive mothers and availability of treatment concern which has a
services in centres catering to rural population.
strong influence on
Non-involvement of the private sector in ART service delivery and the access of children
stringent rules for their inclusion in the delivery of these services is to ART is the lack of
another deterrent for the children and the private sector providers.
understanding among
Lack of coordination and effective linkages with the local civil society school teachers on
organisations, CCC, PLHIV networks implementing government HIV paediatric HIV and
and AIDS programmes on PPTCT and paediatric HIV and AIDS is another
factor which leads to non-synergistic programme activities due to which the AIDS issues.
beneficiaries do not get proper attention and care.
Barriers Identified by CLHIV

Among the series of barriers identified by HIV positive children, majority of the
respondents across the board identified financial constraints as the main barrier that
hampers access to ART services by children and families. Long distances coupled
with lack of availability of adequate transport mechanisms to reach ART centres was
also pointed out by a significantly large number of respondents. It is understood that
illiteracy is a prime reason for low levels of health awareness in general and lack
of knowledge about HIV and AIDS in particular, as opined by many HIV positive
children interviewed.
Taste of medicines is also seen by some children and parents as a factor that
hampers treatment adherence. Some children find the taste of medicines bitter and
unpalatable. As a CLHIV mentioned-“Aushadi kadwi lakti hai to kuch backhoe ne
aushadi chodd di….” (Drugs are bitter in taste so some children discontinued the
medicine).
Lack of support from the caregivers was another point highlighted by the children. The
main reason was helplessness on the part of caregivers and parents emanating from
their rural social milieu, physical and financial constraints. Stigma and discrimination
faced by CLHIV within the society and by service providers is a prime reason that
thwarts access to ART centres, though not a relatively large number of sample
respondents (i.e HIV positive children) openly expressed this factor. Closely
associated to stigma and discrimination is the negative feeling about self-worth
that some of the respondents pointed out. Other barriers mentioned by the CLHIV
were difficulties faced at ART centres in terms of infrastructure, service orientation
and responsiveness, even if they take the initiative to reach these centres.
These apparently are some of the major barriers coming in the way of sustained
access to ART services in rural India.
27
Graph 2 : Barriers identified by CLHIV
Barriers Identified by HIV positive Children

40 36
30 26
18
20
10 10
10 7 5 4 3 2
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Case Study
Prayers for Good Health
“I don’t know how things will improve, what I can do is to pray to God, and one day the Lord
will surely help us and make our wishes come true.”
Her name is Pinky (name changed), and she is from Poi. She is 11 years old. She has been living
with HIV since childhood. She does not know when she was tested positive, but she thinks she must
have been tested in Ukhrul District Hospital as it is the only place in Ukhrul where HIV testing facilities
are available. She is the only child of her parents. She does not remember her parents as they died
when she was very young. She lives with her maternal grandparents. She has been taking ARV for the
last three years or more from the District Hospital. She takes the medicine twice a day, morning and
evening after meals. Every month she goes with her grandmother to the ART centre, it takes them an
hour to reach the town and it is tiresome for her to travel by bus on such bad roads in a hilly terrain.
But she considers herself to be lucky comparing herself to those children who are coming from far off
villages like Kamjong, Namrei etc. who are travelling for 3-4 hours or more by bus. “Can you imagine
how difficult it is for them?”- she says.
Sometimes the doctor is there in the hospital and sometimes not. When he is not there they meet the
counsellor or the pharmacist in the hospital. Mostly they talk with her grandma, though sometimes
they do tell her to have the medicines daily on time, and also to have proper meals, and attend school
regularly. The centre is too small, and there is no proper place to sit except for few benches which are
occupied by other patients all the time.
In school, many of her friends do not want to sit or play with her. So, most of the time she sits on the
last bench. She does not tell about the behaviour of her classmates to her teachers, as she thinks that
if she complains to the teachers, her class mates will even stop talking to her. The same things happen
in the community also as many of her class mates are also from the same locality. But at home it is
better as she has other children to play with, like her cousins whose behaviour towards her is relatively
better. She believes in God and has faith that God will do something for her one day. Every time she
goes to the Church she always prays to the Lord that no other child becomes HIV positive and also
that all children remain healthy. Even though she prays a lot, she still does not feel well and does not
know why it is so? She feels people in the school and locality should be more supportive and caring
towards PLHIV/CLHIV and their families, considering the problem that they face. NGO workers do visit
her at home, and also give her family some food and sometimes note books and pens also. But it will
be great if they also come to the school and meet her teachers and other students and take sessions
on HIV and AIDS.
28
7

CHAPTER
Recommendations
The issues relating to access of CLHIV and their families to government ART
centres or NACO approved private centres are in many ways complex and face a
number of barriers. While some of these emanate from socio-cultural or economic
factors, others are structural and institutional. In formulating recommendations, the
challenge was to put forward ideas that are pragmatic enough to be implemented.
A major effort through the study was to record, understand and analyse the community
voices not just in terms of understanding the issues but also to dig out solutions based
on local knowledge and experiences of the community. The study also purported
to capture the ideas and perspectives of other stakeholders in what is perceived by
them as practical solutions. At this juncture, programme planners, implementers and
the advocates of policy change need to carefully analyse the feasibility, expediency
and benefits of each of the suggestions in specific contexts as mentioned below:
Communication Strategy to Fight Against Stigma and

Discrimination
The study findings have confirmed that one of the biggest barrier in accessing
treatment services is stigma and discrimination that takes several complex forms
especially in rural settings and its consequences are too costly to ignore. Dealing
with stigma, therefore, requires a multi-pronged response that would have to be an
intensive-extensive exercise.
Clinicians to Provide Care for Children with HIV: a Global Review

Even where appropriate HIV diagnostic testing is available and drugs for treatment of HIV infection
and prophylaxis for HIV-associated infections are accessible, lack of personnel trained in
treatment of children with HIV severely limits access to treatment for large numbers of children.
In many areas of the world, medical care is provided by physicians, nurses, and other clinicians
with training and experience in the management of adult, but not paediatric patients. Even the
best Programmes for training health care professionals in the principles of HIV care for children
offer little practical exposure to treating paediatric patients, which is time- and resource-
intensive. Some Programmes send health care professionals from resource-rich areas of the
world to resource-limited areas to train local practitioners (e.g, Medecins Sans Frontieres, the
Baylor Paediatric AIDS Corps, the Clinton Foundation, the Children’s HIV Association of UK and
Ireland, UK/Kwazulu-Natal, the South Africa Collaboration). Additional efforts are needed to expand
the availability of clinicians who are skilled in paediatric HIV care in resource-limited areas of
the world, including integrating paediatric HIV care into existing comprehensive child health
Programmes, expanding local networks of experienced health care professionals, and linking local
clinicians with local, regional, and international experts.
Source: Progress on Global Access to HIV ART. A report on “3 by 5 and beyond”, March 2006, WHO-UNAIDS
29
Awareness about paediatric diagnosis, care and treatment services are a weak link
in the national IEC strategies. That is why, intensified child focused IEC programmes
especially designed for the rural areas can be an effective tool to disseminate correct
information about the epidemic and wipe out all existing myths and misconceptions
that permeate the rural landscape. These IEC programmes should also take into
account the age, gender and other defining identities for greater impact. This should
Recommendations
then be disseminated through mass media, mid-media and other locally appropriate
forms.
As stated by an HIV positive woman -“Hum HIV positive logon ko pyar nahin milta.
Meri samajh mein logon ki jaankari badhani chahiye”… (we, the HIV positive are
not shown care and love by the people. In my opinion, awareness levels of the
community are required to be improved).
Strengthening Local Response against Stigma and

Discrimination
While NACP III provides a strong support to a national response, it must subsume
an equally strong local response since many of the local issues and problems are
best dealt locally. A result-oriented implementation of communication strategy will
mean building wider support within the community through greater participation
and mobilisation of all stakeholders – village elders, local opinion/political leaders,
media, trade unions, religious and spiritual leaders, members of positive networks
at block and district level, women Self Help Groups (SHG) and women
Mayamgidamak collectives, youth clubs and other civil society forums. As mentioned by
a group of general community men during FGD -
HIV gi awareness
“…Peisaga mari leinaba matengdi eikhoisu thoidokna pangba
toina tourabadi, ngamgadaba mande, adubu achumba HIVgi matangda mayamda haiba
tathi ta-woina aduga kadawaida karamba hospitalda khudong chaba fangbage haidudi
mayamda haiba ngamgani. Adubu eikhoibusu takpiba tambibadi tangai
tou-wee haribisai
fade...” (We don’t think we will be able to extend support related to
hanthagani…(If there finance/money, but we can tell people about the places/hospital where
is HIV awareness facilities for ART are available. However, we need to be taught about it).
programme for all, Members of the village panchayats and other local bodies can be effectively
the discrimination involved in disseminating correct information through key messages and
in eliciting a strong local response. Similarly, a wider coalition of NGOs,
that we heard about Voluntary Organisations (VO) and Civil Society Organisations (CSO) can
will be reduced). be created to counter the tide of societal stigma. A general community
man mentioned - “…Mayamgidamak HIV gi awareness toina tourabadi,
- a general community man, tathi ta-woina tou-wee haribisai hanthagani…” (If there is HIV awareness
Ukhrul
programme for all, the discrimination that we heard about will be reduced).
Expanding Testing and Treatment Footprints to Tackle

Infrastructural Issues
A major barrier highlighted by both the rural community and service providers is the
long distance to be travelled to reach ART centres mostly located in urban areas.
Increasing the number of ART centres or Link ART centres (LAC) at various strategic
locations especially in the outlying areas having poor connectivity to the rest of the
village can solve this problem to a great extent.
30
In situations where new ART centres cannot be opened but the potential load is high,
it is advisable to establish Link ART centres which can serve as satellite centres to the
main ART centres. These LACs supported with adequate staff could be established
at the sub-district level so that services are easily accessible and within the reach
of those who are unable to reach the main centres due to various reasons.
Recommendations
Ideal sites for the LAC could be the Community Care Centres (CCC) which are far
more proximate to a large cross-section of peri-urban and rural population making
them relatively more accessible. These Link Centres should be made self-sufficient
and provide all essential services like, PPTCT centres for ANC, HIV
testing, follow-ups, counselling, CD4 tests and delivery kits for emergency In situations where
deliveries along with a paediatric unit for child counselling. In such a
new ART centres
decentralised model of services, the ideals of Early Infant Diagnosis (EID)
and Exposed Baby Care (EBC) would become a reality. cannot be opened but
the potential load is
These centres should be entrusted to provide two-way linkages with
district hospitals so that ICTC/VCTC could refer the HIV positive cases
high, it is advisable
directly to the CCC. This will help in reducing the drop-out rates and also to establish Link ART
sharing the high load presently experienced at the government facilities. centres which can
For facilitating access of children to ART, a recurrent voice was that serve as satellite
the Direct Observation Treatment Short course (DOTS) model should centres to the main
be applied to the ART programme for providing a well coordinated and ART centres.
strengthened ART services up to sub district level.
Broadening the Response through Public Private

Partnership (PPP)
Involvement of the private sector should be encouraged through a well planned and
cost effective PPP model where government could provide infrastructure and human
resource, while the techno-managerial aspects of running such centres can be the
mandate of the private sector. This new mode of working will allow for leveraging
complimentary capacities and competencies which is so vital to the complex issues
of treatment for CLHIV. If select private centres meeting the government’s eligibility
criteria are designated as ART/Link Centres/PPTCT and VCTC, the burgeoning load
at some of the government-run centres in high-prevalent districts will be reduced
considerably. This will help augment quality and efficiency of services at government
centres and will result in early detection and treatment of the exposed children and
reduction in drop-outs of pregnant WLHIV.
Expanding the Scope of Care and Support Services

Looking at the level of poverty in India, it is imperative to create enabling conditions
that can help CLHIV and families to access government treatment services. Travel
allowances or free bus passes and even doing away with the registration fee of
Rs. five per patient at the ART centre can be one such small step that would help
BPL families to access treatment.
All said and done, a comprehensive care and support programme, having a minimum
number of services coordinated at the district level, in areas like education, health,
31
nutrition, psychosocial support besides protection, legal and alternative
…chanabaga care can be planned in a strategic manner. To start with, some of the
aduga gari most under-developed districts falling in high prevalence states should
be chosen to deliver a care and support programme that seeks to bring
bharagakhakna
in its fold those at the margins of economy.
problemsi fahanba
Recommendations
ngamloi, income While a package of direct care and support services to CLHIV and families
generation in severe economic distress is a sine qua non in short to medium term,
NACO and SACS should move towards a framework for sustainable
programmesig darker income and livelihood options for such families. As mentioned by a PLHIV
oi… (additional group - “…chanabaga aduga gari bharagakhakna problemsi fahanba
nutritional and travel ngamloi, income generation programmesig darker oi…” (additional
nutritional and travel support only cannot solve the problem. There is
support only cannot an urgent need for IGP).
solve the problem.
There is an urgent SACS can organise special cohort for imparting entrepreneurial skills
that have the potential for income generation or employment. This can
need for IGP).
be done by engaging Entrepreneurship Development Institutes (EDI)
- a PLHIV group, Ukhrul at the state level and building partnership with large corporate houses.
Expanding Scope and Substance of Diagnostic and

Treatment Services
The progression of NACP III in India has reached a critical phase. Early Infant
Diagnosis (EID) and Exposed Baby Care (EBC) are significant areas of work that
need to complement the gains made so far under NACP III in respect of children.
NACO should consider developing guidelines, training manuals and Standard
Operating Procedures (SOP) on EID and EBC. To enable this, PPTCT and paediatric
ART services should be integrated. This is needed to sensitise women and their
families during the antenatal period for a sustained follow-up for early detection of
HIV status of the child and also to motivate partners to bring WLHIV to ART centre
periodically.
It is an opportune time that critically important diagnostic services like Polymerase

Chain Reaction (PCR), Deoxy- Ribonucleic Acid (DNA) and Viral Load tests are made
available at district level free of cost to all children so as to reduce the time period of
follow-up of children up to 18 months. This will help in reducing the drop-out rates.
It is a common refrain that all medicines required for effective management of OI are
not available in government hospitals. This is perhaps an area where NACO and
SACS will need to put in systems and processes in place to ensure an improved
supply chain. Related to this is also the question of provisioning of paediatric second
line ARV drugs.
HIV-TB co-ordination also needs to be strengthened by sensitising policy makers

for an effective and sustained coordination between the programmes at the vertical
and horizontal levels. Simple, cost effective and sustained mechanisms need to
be developed where ART can be provided along with the DOTS programme. This
will make ART services more accessible for the children and their parents. Also
health care providers i.e. medical officers, counsellors and DOTS providers need
to be trained on the follow-up of children with HIV-TB, in addition to the follow-up of
32
adults which they are already performing. There should be a follow-up of children
for OI by the counsellors so that early identification of CLHIV can be done through
the data so generated.
Staffing and Capacity Augmentation
Recommendations
There is a greater need to strengthen all operational facilities to provide a
comprehensive package of services that include counselling, HIV testing, PPTCT,
ART, follow-up and adherence under one roof to enhance the accessibility of CLHIV
and families. However, strengthening the infrastructure would mean little
unless issues of staff capacities are dealt with. A CLHIV mentioned - hidak loupham
“hidak loupham maphamsida doctor amasung staff khara yamna leiradi
eikhoina ngairisi kuina ngairaroi…” (If there are more number of doctors
maphamsida doctor
and other hospital staff, we will not have to spend so much time waiting amasung staff
for our turn). khara yamna leiradi
The main issue related to staff capacity is about the minimum qualification eikhoina ngairisi
and/or training. Even in cases of staff constraints where postgraduate kuina ngairaroi…
specialists are not available, the Medical Officer posted in the ART
centre should preferably be a paediatrician. There is a strong felt need (If there are more
for training of the counsellors on paediatric counselling which is presently number of doctors
seen as grossly inadequate in the ART component.
and other hospital
“…Angang counselling toubagi fajana training fanglaba mee leifam staff, we will not have
thok-ee……” (there is need for people who are well trained on paediatric
to spend so much
counselling) - as mentioned by a Health Care Worker.
time waiting for our
In fact, the entire staff in the ART centres i.e. lab technicians, pharmacists, turn).
nurses, medical officers including paediatricians need to strengthen
their skills on paediatric counselling. There is also a need for regular -a CLHIV, Ukhrul
and frequent refresher trainings/workshops/courses so as to keep them
updated with the latest best practices.
A major issue of concern is the lack of uniformity of training among the service
providers implementing overlapping programmes (PPTCT/VCTC/paediatric ART)
and the need of creating uniform modules based on the graded level of knowledge to
be imparted to specific group of professionals. Training modules must be so amended
as to reflect the greater need for paediatric counselling in view of strong stigma and
discrimination experienced by children. Moreover, given the petty corruption at the
ART centres, there should be a community feedback and redress mechanism at
an appropriate level.
Integration on paediatric ART and PPTCT is seen as a valuable proposition. However,

for the integration to yield desirable results, capacity building of the gynaecologists
both in the government and private sector would be important so that all HIV positive
women approaching them for PPTCT services could be provided the required
services or linked up with service delivery points. To ensure follow-up of uniform
treatment protocols, all private sector providers practicing ART (paediatricians,
general practitioners etc) should be trained on all aspects of mother and child issues
especially paediatric ART, child counselling, national guidelines and treatment
protocols so that standardised treatment is followed across the country. This would
33
be of benefit to the CLHIV; in the event of migration there would be no change in
protocol and consequently reduced risk of drug resistance to the children.
As part of the integration efforts, there is a need for advocacy with ICDS, RCH and
NRHM Programmes for integrating PPTCT, paediatric HIV and AIDS and ART.
Capacity building of existing grass root workers like ANM, AWW, ASHA will be an
Recommendations
effective step towards the same as this resource will prove to be cost effective and
efficient due to their prior involvement with the similar target group, area, issues and
also cater to women coming for ANC to the centres and those at home. This exercise
will improve identification of pregnant WLHIV and exposed children, referral and
follow-up of those on treatment and will also dilute the stigmatising attitude of the
community and care providers towards the CLHIV and the family. To help strengthen
referrals to ART centres, training of all staff in the Primary Health Centres (PHC) and
Community Health Centres (CHC) needs to be done. All CLHIV must have priority
access to nutrition at the anganwadi centres.
Besides AWWs and ASHAs, there is a need of periodic training sessions for Dais
who are an active resource in the villages, so that HIV positive women delivering at
homes could be provided with the required prevention, care and support services
through timely referrals.
Improving Service Orientation and Responsiveness at

ART Centres
Community voices indicate that there is an urgent need of streamlining the systems
and processes existing in ART centres. The long queues for each service viz.,
registration, meeting with MO, counselling and ARV dispensing should
Community voices be shortened by a direct referral of the children from the counselling
section to ART dispensing section. Else, one day should be exclusively
indicate that there
marked as children OPD day so that they can get exclusive attention.
is an urgent need
of streamlining Considering the CLHIV load at these centres, additional drug dispensing
counters with specially earmarked counter for CLHIV can be provisioned.
the systems and Rest and recreation are two important criteria in improving services at
processes existing in ART centres. Rest-cum-recreation rooms for CLHIV would be a strong
pull for children who are weak, debilitated and/or sick. As desired by an
ART centres. HIV positive child -
“Paba yaba nungaiba comic ka leiradi aduga TV ga leiradi yamna ngungaigan” (It
will be nice if there are comics and TV room in the ART centre).
School going children and sole bread earners in poor families have a special need.
A strong community articulation suggests that introduction of flexi timings in ART
centres will help them avoid frequent absence from work and schools. Opening of
ART centres on Sundays also would be an additional facility. At least one day in a
week should be exclusively fixed for OPD for Children at the ART centres to avoid
hassles and the tiresome procedure of children standing in long queues.
Most of those who access government or government-approved ART services are

either illiterate or have only functional literacy. Therefore, all ART centres must have
vernacular signage along with a standardised pictorial description of various services
34
or service points. These should be placed at all vantage points in the hospitals for
guiding the children and their parents to the ART centres.
Improvement in systems and processes in ART centres has to be dynamic in

nature. All child-focused services must be subjected to an independent evaluation
periodically and a dynamic accreditation of all such services will be the long-term
Recommendations
answer to issues of quality, service orientation and greater responsiveness.
Renewed Focus on Advocacy

There is a greater need for a renewed thrust on advocacy at different levels. State
governments need to mainstream HIV and AIDS programmes and actively work
towards integration of PPTCT, paediatric HIV and AIDS within the RCH and MCH
programmes which will further lead to improved identification and treatment of CLHIV
and their families in the state. Strategic positions in programmatic management within
the related programmes should be filled with public health professionals
who have adequate exposure in RCH, HIV and AIDS programmes for State governments
framing effective policies and implementation of programmes. Policy
need to mainstream
makers at all levels within the related programmes should have a practical
outlook while making policies for HIV and AIDS programmes so that they HIV and AIDS
are able to appreciate the difficulties faced by the healthcare providers programmes and
while dealing with the service users. All these changes would require
influencing the decision makers at appropriate levels. actively work towards
integration of PPTCT,
Within CHAHA, children are provided support and services for nutrition,
travel to ART centres, OI medication (e.g. co-trimaxozole prophylaxis),
paediatric HIV and
paediatric counselling and monitoring of treatment follow-up. However, AIDS within the RCH
in view of the increasing support needs of the families, it is important to
and MCH programmes
work more closely with the government at all levels to enable the children
and families to have greater access to government programmes and which will further
services. There is a need for initiating policies for the implementation lead to improved
of the School AIDS Education Programme (SAEP). Paediatric issues
and HIV and AIDS should be an essential component of the same. identification and
Also, intensive programmes on adolescent issues coupled with life skill treatment of CLHIV
education, reproductive health, HIV and AIDS, treatment, care and support
for CLHIV need to be planned by the District Education Department
and their families in the
(DED) and AIDS control societies in schools to build up a peer support state.
for children infected and affected with HIV and AIDS.
35
8
CHAPTER
Conclusion
When the global impact of HIV and AIDS was first felt, its effect on the future
generations was probably not understood well. However, the last two decades have
shown that an increased number of children are being detected positive. This situation
has surfaced as a serious challenge for health policy planners and implementers alike.
The ‘3 by 5’ initiative launched by WHO in September 2003 was adopted by

Government of India to launch free ART programme on 1st April 2004, but with
limited paediatric focus. In India, children getting ART was much lower than the
number affected by HIV and AIDS.
The study has brought out that stigma and resultant discrimination needs
The need is to serious attention. Use of appropriate communication strategies and
building a wider support base of community leaders would go a long way
strengthen linkages in dealing with stigma rooted in ignorance, myths and misconceptions.
and referrals so that It is time that the health policy planners focus on the structural constraints,
these entitlements work towards decentralisation of services and improve the responsiveness
of all testing, diagnostic and treatment centres. The issues of horizontal
reach CLHIV and their coordination and integration, with other health programmes, as well as
families. staffing, training and widening the scope of treatment services should
be taken up simultaneously.
In a liberalised and globalised economy where market is playing an important role

in all spheres of human life, it is prudent to engage market institutions with health
delivery systems where state can act as regulator. Market along with civil society
can help the state deliver goods and services in a partnership mode. This will help
in ensuring quality, reach and service orientation of paediatric HIV diagnostic and
treatment services. In addition, efforts should be made for greater accountability
and responsiveness of government testing and treatment facilities.
India is committed to the ideals of reaching out to the last person and family in
socio-economic distress. Both the union and state governments have formulated
schemes to either enhance livelihood options of the poor or build social security nets
for special groups. The need is to strengthen linkages and referrals so that these
entitlements reach CLHIV and their families. This can be done by building a larger
civil society coalition with government agencies.
Civil society has played a strong role in prevention, care and support services. It
has been at the forefront of developing and implementing innovative home and
community-based care and support programmes through a vibrant and effective
outreach and community-centred model. Its efforts have raised the bar for any future
care and support model that seeks to reach out to CLHIV and their families and
to promote strong linkages and referrals. The government can help upscale and
promote further civil society action in this area of work with a predominantly rural,
urban and peri-urban focus.
In essence, it is imperative that the efforts in the field of paediatric HIV must gain a
central place as we move into a crucial phase of NACP III.
36
Bibliography
•• Global AIDS Epidemic Report, UNAIDS, 2004.
•• Global AIDS Epidemic Report, UNAIDS, 2006.
•• AIDS Epidemic Update, UNAIDS, December 2009.
•• Sub Recipient Quarterly Report, CHAHA Project – Maharashtra and Manipur,

India HIV/AIDS Alliance, New Delhi, July- Sept 2008.
•• Annual Report 2008-2009, Department of AIDS Control, Ministry of Health and

Family Welfare, Government of India.
•• No of Children support groups formed, No of CLHIV and CAA groups under 18

years of age benefiting from minimum package of care and support services,
SR quarterly reporting July- Sept 2008.
•• HIV Sentinel Surveillance and HIV Estimation in India 2007, A Technical Brief,
NACO 2007.
•• ANC/STD/HRG data on HIV Sentinel Surveillance and HIV Estimation in India

2003-2005 report, NACO, 2005.
•• Progress on Global Access to HIV ART, A report on “3 by 5 and beyond”, March

2006, WHO- UNAIDS publication.
•• Cumulative number of children ever started on ART, children alive and on ART,
LFU paediatric cases ever registered on HIV care, Report on ART, NACO,Sept
2008.
•• Varga CA, Sherman GG, Maphosa J, Jones SA. Psychosocial consequences

of early diagnosis of HIV status in vertically exposed infants in Johannesburg,
South Africa. Health Care Women Int. 2005;26 :387 –397[CrossRef][Medline]
•• Levy NC, Miksad RA, Fein OT. From treatment to prevention: the interplay
between HIV and AIDS treatment availability and HIV and AIDS prevention
Programming in Khayelitsha, South Africa. J Urban Health. 2005;82 :498 –509.
•• CMIS report on District ART Data - National AIDS Control Organisation –Sep
2008.
•• Psychosocial consequences of early diagnosis of HIV status in vertically exposed

infants in Johannesburg, South Africa. Health Care Women Int. 2005;26 :387
–397 [CrossRef] [Medline]
37
•• Unpublished report of Directorate of Economics & Statistics, Government of
Manipur & Wikipedia.
•• Manual for Management of HIV and AIDS in children, UNICEF.
•• National Family Health Survey 3 data, Ministry of Health and Family Welfare, India.
Bibliography
•• Report on the Census of India 2001.
•• Report by WHO, UNICEF and UNAIDS on ART in India, published in Times of

India, October 1 2009.
Online data sources:

•• www.censusindia.gov.in/Census_Data_2001/Census_data_finder/A_Series/
Total_population)
•• www.immunize.org Initiative of Immunization Action Coalition – USA. www.

wvaccineinformation.org/measles/qandavax.asp)
•• www.enotes.com: Sampling: Encyclopedia of public health
•• http://www.enotes.com/public-health-encyclopedia/sampling
•• DLHS III online data: http://nrhm-mis.nic.in/ui/reports/dlhsiii/dlhs08_release_1)
•• http://www.maharashtra.gov.in/english/gazetteer/SANGLI/local_municipalties.
html
38

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Barriers to Sustainable Access of

Children and Families

A Report on Operations Research conducted in

India HIV/AIDS Alliance, New Delhi

Design and Print: AB Impression Pvt. Ltd.

Published: December 2009

© India HIV/AIDS Alliance, December 2009

For more details, please write to:

The International HIV/AIDS Alliance is a global partnership of nationally-based

Established in 1999, India HIV/AIDS Alliance (or, Alliance India) comprises a

Alliance India would like to acknowledge the contribution of the research

Suggested citation: Dr. Bhatia, Neeru; Anand, Pankaj, Barriers to Sustainable

Executive Summary vii

HIV and AIDS Scenario in India 1

Anti-Retroviral Therapy in India: An Overview 3

Study Rationale and Objectives 6

District Profile: Sangli and Ukhrul 7

Access to ART centres: Key Findings 15

AIDS : Acquired Immuno Deficiency Syndrome

Alliance India conducted a study on identifying barriers to accessing ART centres by

The effort needs to be further supplemented and complemented by creating enabling

Access to ART centres gets constrained due to socio-economic factors as well.

Families to ART Centres in Rural India

HIV and AIDS Scenario in India

HIV Prevalence in Study States

Families to ART Centres in Rural India

Anti-Retroviral Therapy in India: An Overview

In September, 2003, WHO declared the lack of access to Antiretroviral (ARV)

Table 1: Paediatric ART status in India

Cumulative number of paediatric 15,714 9,144 6,015

Total number of patients alive

Cumulative number of paediatric

Total paediatric patients who

Total number of patients

Lost to follow-up paediatric 625

CHAHA: Facilitating Access to Paediatric ART

Study Rationale and Objectives

Objectives of the Study

•• To assess and highlight basic minimum level of standards in relation to access

•• To understand and highlight opportunities of linkages with state/district level

Families to ART Centres in Rural India

District Profile: Sangli and Ukhrul

Comparative Population Maharashtra Manipur

ART Status in Sangli and Ukhrul

Table 3: NACO report on ART in the study districts

ART Services Total Total

District Profile: Sangli and Ukhrul

Study in Rural Districts

Rural Dist. Sangli Rural Dist. Ukhrul

Qualitative Study Quantitative Study

Semi-Structured Interviews with

Research Methods and Respondent Groups

•• Self Help Groups (SHG) and Community Based Organisations (CBO)

•• ART centres, PPTCT, VCTC/ICTC, CCC, Gynaecologists, Paediatricians,

Respondent Groups Sangli Ukhrul

Families to ART Centres in Rural India

Access to ART Centres: Key Findings

HIV Diagnostic Testing: Global reviews on barriers to access paediatric ART

Stigma and Discrimination