[Ip-health] NACO IN DENIAL ABOUT REALITIES OF ARV ACCESS IN INDIA
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Sun Nov 26 16:53:01 2006
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NACO IN DENIAL ABOUT REALITIES OF ARV ACCESS IN INDIA
Richard Stern and Eugene Schiff
Agua Buena Human Rights Association
Note: Comments from readers are welcome, and the authors would like to th=
ank many of those in India who shared information and contributed to this r=
eport. We would welcome further opportunities to meet and communicate with =
organizations interested in the issues raised here (see contact info below =
or call +91 986856 9206). In spite of many calls to the Indian National AID=
S Control Organization (NACO) to reach the Director, Mrs. S. Rao, and other=
officials, NACO staff have thus far been unwilling to set up an appointmen=
t for an interview to discuss the issues mentioned below.)
On the eve of World AIDS Day, NACO, the government run National AIDS Prog=
ram of India, continues to neglect and deny the basic human rights of peopl=
e living with HIV/AIDS in India. The following are key issues the Indian go=
vernment must urgently address in order to improve access to treatment for =
Indian PLWA. Indian Government Denies PLWA Access to Second Line Medicines=
Estimated 450,000 Lack Treatment yet NACO says: "There is no waiting list"=
Indian Government's Charge for CD4 test is Deadly and InhumaneMillions of D=
ollars Available from GFATM for HIV/AIDS Treatment: Where is the Money? 1=
) Indian Government Denies PLWA access to Second Line Medicines India is o=
ne of the only developing countries in the world still not providing at lea=
st some second line AIDS medicines (or rescue therapy) to people who need t=
hem. The government has thus far refused to purchase these medicines for th=
e National AIDS Program, despite the fact that India, unlike almost any oth=
er country in the world, has a robust local generic production capacity and=
Indian generic pharmaceutical companies that are already producing most se=
cond line antiretroviral drugs in India at this time.
Currently NACO offers PLWA only five medications in the public sector: AZ=
T, 3TC, D4T, Neverapine, and Efavirenz. Of the estimated 40,000 people on a=
ntiretrovirals some receive triomune =E2=80=93 a combination of d4T, 3TC, a=
nd Nevirapine, while others receive Duovir + Efavirenz, or some combination=
s of these five drugs. Of those currently receiving first line treatment i=
n the public sector, an estimated 3,000-5,000 people in India are now urgen=
tly in need of second line medications, but NACO has failed to supply these=
drugs to PLWA, some of whom have been forced into poverty trying to purcha=
se these medicines themselves, while others have already died or are near d=
eath because they simply cannot afford the private sector prices of second =
line medicines that the Indian government does not provide.
Doctors at various public hospitals in New Delhi confirmed they have no a=
ccess to protease inhibitors, an important and powerful class of antiretrov=
iral drugs. Physicians lack many of the antiretrovirals that are used as se=
cond line medications, rescue therapy, or even as first line drugs in other=
countries. For example, many medicines that are available in other countri=
es even poorer than India (with no local production capacity), such as the =
drugs Ritonavir, Lopinavir, Tenofovir, Indinavir, Abacavir, Emtricitabine, =
Atazanavir, Nelfinavir, Fosemprenavir, Didanosine, and others are totally u=
navailable in the public sector in India. Generic versions of most of these=
drugs are already sold by various local drug companies in India including =
Ranbaxy, CIPLA, and Emcure. There are currently no restrictions on the sale=
of generic versions of most of these medications due to patent issues.
NACO, and others who defend the government policy claim that if second li=
ne treatment is offered, the government of India would be unable to afford =
to purchase enough medicines or increase the number of additional people on=
first line treatment. This argument presents an unacceptable choice that n=
egates the needs of people living with AIDS in India. It is incredible that=
the Indian government, and international agencies and donors including the=
WHO, DFID, USAID, the Bill and Melinda Gates Foundation, UNAIDS, the World=
Bank, the Clinton HIV/AIDS Initiative, and others have either accepted or =
not done more to effectively address this issue and influence drug policy t=
o favor greater treatment access in India. The current situation violates a=
ll the basic principals of human rights and best practices promoted in dono=
r countries and by the same international agencies in terms of the right to=
lifesaving ARV access. Even other lower middle income countries, such as H=
onduras, Guatemala, El Salvador, the Dominican Republic, Thailand, Rwanda, =
Botswana, and South Africa are currently providing at least some second lin=
e ARVs and often paying drug prices much higher than those available for th=
e same drugs in India.
It is both inhumane and unethical for the government to provide only firs=
t line treatment to people living with HIV/AIDS. When drug resistance devel=
ops for a small percentage now and in the future, sometimes two or three ye=
ars after starting on first line ARVs, even though alternative rescue thera=
py is being produced in India and sitting on the shelves of private pharmac=
ies, the physicians and government essentially tell poor people with HIV: "=
we are sorry, you have resistance to your ARVs, if you cannot afford to pay=
for costlier second line medicines yourselves there is nothing we can do f=
or you." 2) Estimated 450,000 lack treatment yet NACO says: "there is no =
waiting list" The failure of NACO to recognize the realities of the epide=
mic in India are further illustrated is their statement that there are no w=
aiting lists in major ARV centers around the country. However, UNAIDS estim=
ates 100,000 people died of AIDS in 2005. Current estimates indicate that 5=
00,000 people now need ARV access in India, but only that only 40,000 have =
access in the public sector. In developing countries, at least 20% of peopl=
e in the advanced stages of AIDS will die each year of opportunistic infect=
ions without antiretroviral treatment.
Mortality statistics for AIDS in India are scarce. What data does exist i=
s probably unreliable underestimates, because many people die of AIDS befor=
e even reaching an ARV center, or perish without ever even being tested for=
HIV. Many of these people are not only living in rural areas, but also in =
huge urban slums in major Indian cities where ARV roll-out is available.
NACO and the Indian government still appear to be in denial and lagging i=
n their efforts and responsibility to expand the healthcare infrastructure.=
The health system must reach out to the poorest and most marginalized peop=
le affected by the AIDS epidemic, so that they can receive free HIV testing=
in their first contact with a health care provider, if they are showing po=
ssible symptoms of HIV, or as routine screening for pregnant women and peop=
le with tuberculosis.
However, according to physicians, even in Delhi's hospitals, only some, n=
ot all TB patients are offered HIV tests. For antenatal screening, perhaps =
as many as half of all pregnant women in India do not give birth in hospita=
ls or clinics but instead outside of the public health sector and often thr=
ough midwives, and are thus never tested for HIV, particularly in rural are=
as and among the poor, who in both cases represent the vast majority of Ind=
ian women. There also are reports of poorly trained health care workers wit=
h little knowledge and high levels of stigma about HIV/AIDS.
Some are encouraged that NACO recently placed an ad in local newspapers a=
nnouncing the availability of ARVs. However, even these steps fail to take =
into account that many people living in poverty may be unable to afford new=
spapers, or even illiterate, and unable to read in either English or Hindi,=
yet they also deserve and have the same right to health care, HIV/AIDS tes=
ting and antiretroviral treatment if needed.
In one of the largest public hospitals in New Delhi, staff indicated that=
only two full time AIDS counselors must respond to the needs of 1,500 HIV+=
people. Such staff shortages present real obstacles to providing adequate =
information about adherence, stigma, discrimination and many other issues. =
In the same hospital just two doctors must also attend to the needs of the =
same 1,500 people. 3) Indian Government's Charge for CD4 Test is Deadly =
and Inhumane: Current Policy does not reflect a commitment to supporting po=
or people living with AIDS
The Indian Government's charge (250 rupees, about $6 USD) for baseline C=
D4 tests is a deadly and incongruent barrier to lifesaving treatment access=
for millions of poor HIV positive people in India. As result of pressure f=
rom activists and PLWA, the government has apparently revised its policy an=
d reduced the fee for CD4 tests from 500 to 250 Rupees in recent months, bu=
t these halfway incremental approaches are still woefully inadequate for a =
country with the resources, large impoverished population and an HIV/AIDS e=
pidemic with the size and characteristics of India.
The CD4 test is an important tool for doctors and sometimes prequisite,=
but often a barrier for PLWA to begin antiretroviral treatment. The govern=
ment must recognize the disproportionately harmful and pernicious effects o=
f these user fees on those who are sick and poor and unable to get antiretr=
oviral treatment because they cannot afford to pay for the first CD4 test. =
In a report this week published in The Tribune of India (Nov. 23, 2006), on=
e Punjab woman living with HIV describes the effects of the fee charged for=
CD4 tests:
=E2=80=9CThe HIV test was conducted free. But to get further tests done, =
I will have to pay for travel. I also have to deposit Rs 250 each for all t=
hree of us to get registered for treatment. For me the choice is between fe=
eding my children for a month or two or to get the tests done. With no sour=
ce of income, I give the tests a go-by=E2=80=9D
The government must eliminate this policy immediately, offering free, gov=
ernment subsidized CD4 tests, to stimulate the immediate scaling up AIDS tr=
eatment access in the public sector.
4) Millions Of Dollars Available from GFATM for HIV/AIDS Treatment =E2=80=
=93 Where is the Money? Meanwhile, more than $500 million US dollars (2250=
crore rupees) in Global Fund grants have been approved for India, yet acco=
rding to information provided by the Global Fund only $55 million dollars h=
as been disbursed as of this date. Alarmingly few seem to be aware of the e=
xistence of the Global Fund project and the purpose of these funds.
Several GFATM projects in India were "restructured" because of the poor p=
erformance of the Country Coordinating Mechanism (CCM) and Principal Recipi=
ents (PR), and phase one disbursements were delayed and even reduced due to=
the inability of the CCM and PR to act rapidly.
Incredible as it may seem, although $77 million US (346.5 crore rupees) w=
as approved in June of 2004 in a round four project specifically "for the p=
urchase of anti-retroviral medications" only $2,972,000 has been disbursed =
as of this writing. This project would have would have provided more than e=
nough money to cover the costs of treating 40,000 people with first line me=
dicines (which cost $5.8 Million USD in 2005, according to one report), and=
also place thousands of PLWA on second line medicines, even at the high pr=
ices currently charged by Indian generic companies for these medications.
Embarrassingly for a country with as many PLWA needing antiretroviral med=
icines as India, the project was restructured because of previous delays so=
that only $22 million was approved for the first two years of the grant. T=
his fourth round grant agreement was signed in August 2005, and since then =
this amount has been available. Yet NACO still claims there is no money lef=
t to save the lives of those currently needing second line treatment.
As difficult as it may be to maneuver through the Geneva-based GFATM and =
Indian bureaucracies, why have NACO and the Indian government not been util=
izing the money from these multi-millionaire dollar grants as quickly as po=
ssible and requesting further disbursements?
Why is the Country Coordinating Mechanism (CCM) allowing this to occur wh=
en they are fully aware of the scale up problems currently occurring in Ind=
ia, not only with regard to second line medications, but also for the 450,0=
00 PLWA who still need but lack first line medicines?
What are the current priorities of the Indian Government to PLWA? Why is =
NACO also now considering the implementation of a sliding scale payment sch=
eme for ARVs, further penalizing the Indians with HIV/AIDS who already conf=
ront severe poverty, when millions of dollars and hundreds of millions of r=
upees are sitting in banks in Geneva, Delhi and Mumbai? Why is there no sec=
ond line treatment in India??
Why is NACO so inaccessible and secretive about its budget and the availa=
bility of these funds?
While the Ministry of the Economy apparently places "ceilings" or limits =
on the amount of funds that can be committed to AIDS in India, based on NAC=
O's own budget requests, that money from the Global Fund is exempt from the=
se limits.
Now, India has a $259 million grant tentatively approved by the GFATM for=
round six, exclusively for up scaling ARV access. This enormous sum could =
be made available as soon as some additional information is sent to Geneva =
to the Technical Review Panel. Why isn't the CCM meeting more frequently to=
speed up the approval and disbursement process for this grant, including e=
ligibility of two of the three Principal Recipients, followed by signing of=
the contract. Incredibly, we were told that the CCM is currently meeting o=
nly once every two months. The last CCM meetings minutes posted on the Indi=
a GFATM CCM website are from July 28th, 2006 =E2=80=93 four months ago.
During each two months between CCM meetings, about 20,000 PLWA die of AID=
S in India, and 75,000 more Indians need antiretroviral medicines.
--------------------
Richard Stern - Agua Buena Director - (rastern@racsa.co.cr)
Eugene Schiff - Caribbean Coordinator - (eugene.schiff@gmail.com)
Agua Buena Human Rights Association
+91 98 6856 9206 (mobile, India)
www.aguabuena.org If you would like to be removed from this list, please =
send an e-mail to eugene.schiff@gmail.com or rastern@racsa.co.cr
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