NACO in denial about realities of ARV access in India

[Guest guest]

NACO IN DENIAL ABOUT REALITIES OF ARV ACCESS IN INDIA

Stern and Eugene Schiff, Agua Buena Human Rights Association

Dear FORUM,

Comments from readers are welcome, and the authors would like to thank many of

those in India who shared information and contributed to this report. 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 AIDS Control Organization (NACO)

to reach the Director, Mrs. S. Rao, and other officials, NACO staff have thus

far been unwilling to set up an appointment for an interview to discuss the

issues raised below)

On the eve of World AIDS Day, NACO, the government run National AIDS

Program of India, continues to neglect and deny the basic human rights

of people living with HIV/AIDS in India. The following are key issues

the Indian government 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 Inhumane

* Millions of Dollars Available from GFATM for HIV/AIDS Treatment: Where is the

Money?

1) Indian Government Denies PLWA access to Second Line Medicines

India is one of the only developing countries in the world still not

providing at least some second line AIDS medicines (or rescue therapy) to people

who need them. The government has thus far refused to purchase these medicines

for the National AIDS Program, despite the fact that India, unlike almost any

other country in the world, has a robust local generic production capacity and

Indian generic pharmaceutical companies that are already producing most second

line antiretroviral drugs in India at this time.

Currently NACO offers PLWA only five medications in the public sector:

AZT, 3TC, D4T, Neverapine, and Efavirenz.

Of the estimated 40,000 people on antiretrovirals some receive triomune – a

combination of d4T, 3TC, and Nevirapine, while others receive Duovir +

Efavirenz, or some combinations of these five drugs.

Of those currently receiving first line treatment in the public sector, an

estimated 3,000-5,000 people in India are now urgently 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 purchase these medicines themselves,

while others have already died or are near death 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 access

to protease inhibitors, an important and powerful class of

antiretroviral drugs. Physicians lack many of the antiretrovirals that are

used as second line medications, rescue therapy, or even as first line drugs in

other countries. For example, many medicines that are available in other

countries 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 unavailable 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

line 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

negates 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 to favor greater treatment access in India.

The current situation violates all the basic principals of human rights and best

practices promoted in donor countries and by the

same international agencies in terms of the right to lifesaving ARV

access. Even other lower middle income countries, such as Honduras,

Guatemala, El Salvador, the Dominican Republic, Thailand, Rwanda,

Botswana, and South Africa are currently providing at least some second line

ARVs and often paying drug prices much higher than those available for the same

drugs in India.

It is both inhumane and unethical for the government to provide only

first line treatment to people living with HIV/AIDS. When drug resistance

develops for a small percentage now and in the future,

sometimes two or three years after starting on first line ARVs, even

though alternative rescue therapy is being produced in India and sitting on the

shelves of private pharmacies, 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 for 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 epidemic in India are

further illustrated is their statement that there are no waiting lists in major

ARV centers around the country.

However, UNAIDS estimates 100,000 people died of AIDS in 2005. Current

estimates indicate that 500,000 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 people in the advanced stages of AIDS will die each year of

opportunistic infections without antiretroviral treatment.

Mortality statistics for AIDS in India are scarce. What data does

exist is probably unreliable underestimates, because many people die of AIDS

before 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 in their

efforts and responsibility to expand the healthcare

infrastructure. The health system must reach out to the poorest and

most marginalized people 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 possible symptoms of HIV, or as routine

screening for pregnant women and people with tuberculosis.

However, according to physicians, even in Delhi's hospitals, only some, not 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 hospitals or clinics

but instead outside of the public health sector and often through midwives, and

are thus never tested for HIV, particularly in rural areas and among the poor,

who in both cases represent the vast majority of Indian women. There also are

reports of poorly trained health care workers with little knowledge and high

levels of stigma about HIV/AIDS.

Some are encouraged that NACO recently placed an ad in local newspapers

announcing the availability of ARVs. However, even these steps fail to take

into account that many people living in poverty may be unable to afford

newspapers, 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 testing

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 poor people living with AIDS

The Indian Government's charge (250 rupees, about $6 USD) for baseline CD4 tests

is a deadly and incongruent barrier to lifesaving treatment access for millions

of poor HIV positive people in India.

As result of pressure from activists and PLWA, the government has apparently

revised its policy and reduced the fee for CD4 tests from 500 to 250 Rupees in

recent months, but these halfway incremental approaches are still woefully

inadequate for a country with the resources, large impoverished population and

an HIV/AIDS epidemic 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 government must recognize the disproportionately

harmful and pernicious effects of these user fees on those who are sick and poor

and unable to get antiretroviral 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), one

Punjab woman living with HIV describes the effects of the fee charged for CD4

tests: " The 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 three of us

to get registered for treatment. For me the choice is between feeding my

children for a month or two or to get the tests done.

With no source of income, I give the tests a go-by " The government must

eliminate this policy immediately, offering free, government subsidized CD4

tests, to stimulate the immediate scaling up AIDS treatment access in the public

sector.

4) Millions Of Dollars Available from GFATM for HIV/AIDS Treatment

– Where is the Money? Meanwhile, more than $500 million US dollars

(2250 crore rupees) in Global Fund grants have been approved for India, yet

according to information provided by the Global Fund only $55 million dollars

has been disbursed as of this date. Alarmingly few seem to be aware of the

existence of the Global Fund project and the purpose of these funds.

Several GFATM projects in India were " restructured " because of the poor

performance of the Country Coordinating Mechanism (CCM) and Principal Recipients

(PR), and phase one disbursements were delayed and evenreduced 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) was

approved in June of 2004 in a round four project specifically " for the purchase

of anti-retroviral medications " only $2,972,000 has been disbursed as of this

writing. This project would have would have provided more than enough money to

cover the costs of treating 40,000 people with first line medicines (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 prices currently charged by

Indian generic companies for these medications.

Embarrassingly for a country with as many PLWA needing antiretroviral

medicines 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. This 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

left 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 utilizing the

money from these multi-millionaire dollar grants as

quickly as possible and requesting further disbursements?

Why is the Country Coordinating Mechanism (CCM) allowing this to occur

when they are fully aware of the scale up problems currently occurring

in India, not only with regard to second line medications, but also for the

450,000 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 scheme for ARVs, further penalizing the Indians with HIV/AIDS

who already confront severe poverty, when millions of dollars and

hundreds of millions of rupees are sitting in banks in Geneva, Delhi and Mumbai?

Why is there no second line treatment in India??

Why is NACO so inaccessible and secretive about its budget and the

availability 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 NACO's own

budget requests, that money from the Global Fund is exempt from these 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 eligibility of

two of the three Principal Recipients, followed by signing of the contract.

Incredibly, we were told that the CCM is currently meeting only once every two

months. The last CCM meetings minutes posted on the India GFATM CCM website are

from July 28th, 2006 – four months ago.

During each two months between CCM meetings, about 20,000 PLWA die of

AIDS in India, and 75,000 more Indians need antiretroviral medicines.

--------------------

Stern - Agua Buena Director

e-mail: rastern@...

Eugene Schiff - Caribbean Coordinator

e-mail: eugene.schiff@...

+91 98 6856 9206 (mobile, India)

www.aguabuena.org

[Guest guest]

Dear Forum,

I am Mr Mangal Ram Pandey from Meerut, UP. I am an AIDS activist and dedicate my

life and investment to protect my countrymen from the curse of HIV/AIDS.

Let me respond to the issue in a different way.

NACO's denial about the ARV access is quite natural because it is an

organization under GOI, so lacking the perspective of a people's organization.

NACO have yet to recruit any HIV affected employee till now (GIPA is just a

juicy slogan for NACO, nothing more than that) even after 14 years of existance.

HIV drug policy is formulated by the beurocrats and technocrats who draw five to

six figure salary from Govt. and international agencies. They remain millions of

light years away from the hard core ground realities. It is stupidity to expect

some explaination from them.

Moreover, it is not uncommon also in NACO to store lifesaving ARVs inside its

premises and keep them unused till they cross date of expiry under sheer

negligence. Wasting lifesaving drugs without using them in time is a very common

practice in our govt. offices and NACO and its ARV supplies are not the

exception.

So, dear friends of mine don't waste your time with the expectation that NACO is

sitting for you with buskets of explainations and clarifications. Go to the

field, work for the PLHIV and try to mobilize money from the non Govt. sources

for the second liners.

In Solidarity,

Mangal

e-mail: <mangalrampandey@...>