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    Hemophilia India, Premroop

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    somushiv
    1) India is a large, diverse country with over 1 billion people and many social challenges including poverty, corruption, and public health issues. 2) The Hemophilia Federation of India was formed in 1983 and has grown to include over 77 chapters across the country serving around 16,000 people with hemophilia. 3) Providing treatment and care for hemophilia patients faces many challenges in India due to lack of awareness, limited resources, and the fact that hemophilia is not included in the national health scheme. Extensive government lobbying and advocacy is required.

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    Hemophilia India, Premroop

    Uploaded by

    somushiv
    72 views12 pages
    1) India is a large, diverse country with over 1 billion people and many social challenges including poverty, corruption, and public health issues. 2) The Hemophilia Federation of India was formed in 1983 and has grown to include over 77 chapters across the country serving around 16,000 people with hemophilia. 3) Providing treatment and care for hemophilia patients faces many challenges in India due to lack of awareness, limited resources, and the fact that hemophilia is not included in the national health scheme. Extensive government lobbying and advocacy is required.

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    Hemophilia India, Premroop, Hemophlia Federation (India)

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    1) India is a large, diverse country with over 1 billion people and many social challenges including poverty, corruption, and public health issues. 2) The Hemophilia Federation of India was formed in 1983 and has grown to include over 77 chapters across the country serving around 16,000 people with hemophilia. 3) Providing treatment and care for hemophilia patients faces many challenges in India due to lack of awareness, limited resources, and the fact that hemophilia is not included in the national health scheme. Extensive government lobbying and advocacy is required.

    Copyright:

    © All Rights Reserved
    Download as ODP, PDF, TXT or read online from Scribd
    Download as odp, pdf, or txt
    72 views12 pages

    Hemophilia India, Premroop

    Uploaded by

    somushiv
    1) India is a large, diverse country with over 1 billion people and many social challenges including poverty, corruption, and public health issues. 2) The Hemophilia Federation of India was formed in 1983 and has grown to include over 77 chapters across the country serving around 16,000 people with hemophilia. 3) Providing treatment and care for hemophilia patients faces many challenges in India due to lack of awareness, limited resources, and the fact that hemophilia is not included in the national health scheme. Extensive government lobbying and advocacy is required.

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    You are on page 1of 12

    Presenter by

    - Premroop Alva

    INDIA
    Multicultural Country languages,
    relig- ions,caste, Climate and habits

    th

    Largest country, 32 lakh 88


    thousand km. population of 121 Cr

    crore which is second most populous


    121 world
    over

    29 states & of 07 Union Territories


    Challenges of poverty, corruption, malnutrition,
    inadequate public health care & terrorism .

    Hemophilia Federation (India)

    Forme
    d

    1983

    Himself PwH, Started with 10 chapters.

    Today we are 77 chapters across India

    With our active network we have


    16,000 PwH

    Distributed the country in 4 regions


    North,East, West, South headed by Regional

    Regio
    ns

    council chairman

    Besides in executive committee all the 4


    regions representation is there .

    India AHF
    2007-2008

    2009-2010

    Delhi
    selected
    hospitals

    2011-2012
    Rajasthan
    and Goa

    Upto the year 2005- 2006


    all the Pwh had to
    purchase the AHF at
    subsidised rates.

    2010-2011

    Jammu and
    Tamil nadu

    UP,
    Pondicherry,
    Assam

    2012-2013
    Andhra Pradesh ,
    Uttarakhand
    ,Haryana Gujrat
    Maharashtra

    2014-2015
    W. bengal,
    Jharkhand,
    MP

    2013-2014
    Himachal
    Pradesh,
    Karnataka,ke
    rela,Odissa
    and
    Arunachal
    Pradesh

    India AHF Status

    Each state has its


    own healthcare
    policy
    Thus
    individualized
    lobbying is
    required.
    In india there is no
    orphan drug law
    thus if any orphan
    is suffering of
    such disease like
    hemophilia

    Challenges by our NMO in India

    Knowledge on hemophilia - Health care professional and


    General public have no or very less knowledge of hemophilia.
    Thus many cases remain undetected and thus untreated.
    Financial support and resources - In India resource
    (mobilisation) and financial assistance for treatment part on
    hemophilia is a big challenge . As govt. of any state is not
    ready to assist Pwh for even treatment on demand . India is a
    developing country thus limited resources are there for health
    care support
    Hemophilia is not included in national health scheme- As
    hemophilia is not included in N.H scheme thus no treatment
    policy from central govt. for the pwh, we are fighting for the
    same to get the support.

    Challenges by our NMO in India

    Capabilities - one should be capable enough to inform to


    the Govt. officials and ministers to understand & feel your
    need realted to the sufferers and also make them
    understand what the cause hemophilia is and what
    treatment we require.
    Time taken Time taken by Govt. officials and
    bureaucracy in health care decision taking is so much ,
    that one lose hope of whether person in front is interested
    to support or not.
    Team management Making a team to fight for the
    cause is a big challenge and then One key person should
    always be ready to run leaving his important work, some
    times, so that everyone comes forward.

    Threats and challenges by Us


    PwH forced to
    stay for 24hrs
    for any bleeds
    AHF supply
    after a PwH is
    reported
    Govt. budgets not
    availabil all the
    year

    Hemophilia orgs are


    not involved in govt
    medicine
    procurement

    No Standard
    factor dosage
    protocol

    Hemophili
    a
    Communit
    y in
    India

    Critical bleeds like


    GI, IC,
    hemarthrosis is
    untouched due to
    fear & No Training

    Frequent transfer of
    hemophilia trained
    doctors
    No national
    level policy or
    protocol

    Methods Used Government Lobbing


    Advocac
    y
    Lobbying in India we
    have to discuss with
    many people. During
    lobbying any of the
    convinced personal
    gets changed then
    you have to restart
    the process.

    PIL
    States Health Minister

    Health Secretary
    Principal secretary
    Finance
    Director General Health

    Methods Used Government Lobbying


    Public interest
    litigation

    PIL which is through high court of every state we inform


    our troubles and demand for the treatment needs from the
    state govt. through court. Where court directs the state
    govt. for providing treatment facilities to the sufferers.
    Through advocacy we directly contacts various authorities
    like Health minister, Principal secretary- Health, Director
    General for providing facility in the state , which they may
    or may not agree to.
    Presently in India , so many states treatment part need
    correction

    Methods Used Government Lobbying


    Lobbying Facts

    As in Karanataka only Below Poverty Line(BPL) PwH gets treatment.

    Only one treatment center in entire Bihar state. PwH Travel long distance

    Inhibitor & VwD drug is not available in many states.


    In Uttrakhand only 3 HTC are available, where PwH from Hilly area has to
    run to plains for treatment

    In Delhi mainly only one HTC is working.

    Specialists are not available for hemophilia treatment in govt. hospitals

    Regular availability of Ahf is a big issue in Govt. hospitals where so called


    free treatment is available.
    HFI and societies personnel has to follow-up regularly providing treatment
    to PwH & govt. authorities for supply of ahf.

    Conclusion

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