Presenter by- Premroop Alva
INDIA
Multicultural Country languages, relig- ions,caste, Climate and
habits
Largest country, 32 lakh 88 thousand km. population of 121
Cr7thcrore which is second most populous world over121states &
of 07 Union Territories29Challenges of poverty, corruption,
malnutrition, inadequate public health care & terrorism .
Hemophilia Federation (India)
Formed
Regions4
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 council chairman
Besides in executive committee all the 4 regions representation
is there .
India AHF
2007-2008Delhi selected hospitals
2009-2010Jammu and Tamil nadu
2010-2011UP, Pondicherry, Assam2011-2012Rajasthan and Goa
2012-2013Andhra Pradesh , Uttarakhand ,Haryana Gujrat
Maharashtra
2013-2014Himachal Pradesh, Karnataka,kerela,Odissa and Arunachal
Pradesh2014-2015W. bengal, Jharkhand,MPUpto the year 2005- 2006 all
the Pwh had to purchase the AHF at subsidised rates.
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.
Hemophilia orgs are not involved in govt medicine
procurementThreats and challenges by Us
HemophiliaCommunity inIndia
AHF supply after a PwH is reported
PwH forced to stay for 24hrs for any bleeds
No Standard factor dosage protocol
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
Govt. budgets not availabil all the year
Methods Used Government Lobbing
PIL
States Health Minister
Health Secretary
Principal secretary Finance
Director General HealthLobbying 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.
Advocacy
Methods Used Government Lobbying
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
Public interest litigation
Methods Used Government Lobbying
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.
Lobbying Facts
Conclusion
