Millions in Global Fund grants go unused: Indian government bureaucracies kill off people living with AIDS

15 May 2005. Related: Treatment access.

Richard Stern, Agua Buena Human Rights Association

While hundreds of millions of dollars in assistance for AIDS pour into India from international donor sources including the Global Fund to Fight AIDS, TB and Malaria, only 5,000 People Living with HIV/AIDS (PLWA) are receiving antiretroviral treatment through the public sector. Incredible negligence on the part of the National AIDS Control Organisation (NACO) and the Health Ministry combine to systematically create a form of “bureaucratic genocide,” contributing to the deaths thousands of PLWA who need treatment now.

According to the World Health Organisation (WHO), 700,000 people in India urgently require treatment. About 100,000 die each year, nearly 300 each day.

As of this moment, all public sector treatment in India is provided by government funds, channeled through NACO. Yet $122 million in additional funds for ARV access has been available for nearly a full year from the Global Fund but not one dollar has been disbursed from Geneva to India for antiretroviral access

While the money remains in the bank, Mumbai’s JJ Hospital is the only publicly funded facility in that city where PLWA currently receive free treatment. Two overworked counselors try to see 180 patients each morning who come to the Clinic. Counselors must deal with adherence and other issues for the 1,350 PLWA now receiving free treatment at this hospital. Yet hospital staff have indicated that as of 1 April no more PLWA can be placed on treatment. The Mumbai AIDS Control Centre has decided that the JJ program is saturated.

Mumbai is India’s largest city with a population of 16 million. Experts agree that at least 30,000 people in Mumbai need treatment now. The government will supposedly begin providing free treatment at three additional hospitals, called “medical colleges,” in the near future but the cap for each of these hospitals will be 500 patients, meaning that a total number of 2,800 people, could be placed on treatment by the end of 2005 in Mumbai, leaving 27,000 or 90% still without ARV access. Of these 27,000 an estimated 8,000 will die during the year.

No treatment for children with AIDS

Although Mumbai AIDS Control Centre staff acknowledged that 1,500 children are known to need treatment, and despite a thriving low cost generic manufacturing industry, incredibly there are no paediatric AIDS suspensions available. Children over 13 are given pills for adults but there is no treatment for children under 13. The WHO representative for Mumbai, Dr. Dilip Vasvani informed me that there are “plans” to begin providing treatment for children at a facility in Northeast Mumbai that already provides medical services for children but he would not be specific about a date.

Few if any of the PLWA we met in Mumbai had any information about the Global Fund or the reason for the delays in disbursal. In India’s first AIDS related Global Fund project, approved in round two, over two years ago, $100 million was made available to India by the Fund. Incredibly, India’s “Country Coordinating Mechanism” (CCM) – the umbrella body that oversees Global Fund applications for India – only asked for funds to treat 5,000 people over a five year period. At current prices, treatment for 5,000 people represents only about $800,000 out of the total approved of $100 million, less than one percent. However, it is a moot point, since none of the people who could be treated with Global Fund money have even been placed on treatment at the time of writing. Global Fund projects are “country driven” meaning that the Fund does not mandate that a country ask for funds for treatment in their proposals. A year and a half later, in the fourth round, India did ask for funds for treatment access, but the grant agreement has never been signed (See Table summarising Global Fund grants below).

The WHO’s Dr Vasvani acknowledged that he himself knows little about the Global Fund roll-out in India. He indicated that ARV roll-out would be slow at first to assure quality of care, but could not explain why the “cap” of 2,800 had been placed on access for Mumbai for the year 2005, when so many are urgently in need of treatment. In all of India 5,000 people are on treatment in six major centres, but NACO had originally announced that treatment would be available for 100,000 by the end of 2005. In early February, the NACO estimate was dramatically lowered, in spite of available funds, and the goal is now to have 100,000 people on treatment by the end of 2007, a decision that defies logic given the resources available to the government from donor sources.

For most questions I posed regarding the Global Fund and general ARV policy, Dr Vasvani referred to me Dr Alka Gogate, Director of the Mumbai AIDS Control Centre, the local branch of NACO which is responsible for Mahrashtra state.

In spite of a confirmed appointment that I had made directly with Dr Gogate for Tuesday March 29th, at 3 pm she failed to appear and left no note or message relating to the cancellation of this meeting. Although I never spoke with Dr Gogate, documents provided by NGOs, indicated that in March 2004 she had announced that medications for children would be a priority in Mumbai. She also indicated in the same report that in Mumbai, no one would receive treatment unless they had a “responsible accompanying person” to ensure adherence. I had no chance to ask her if she was aware that this policy was against all “best practice” that entitles a person with AIDS to confidentiality.

Global Fund money still not released

However, information available on the Global Fund website reveals that $37 million has been available since the fourth round AIDS project was approved in June 2004 for ARV treatment access to be provided at several major sites throughout the country, during a two year period, with an additional $85 million available for the following three years. However, the grant agreement, which would release these funds, has still not been signed, and there is still no specific information about when it will actually be signed. According to the website, the $37 million would provide treatment for 44,300 people during the first two years of the project.

Informed sources claimed that the delay in signing the contract and disbursing the funds was due to a range of issues related to internal government and health ministry approvals and other “bureaucratic” problems. The Department of Economic Affairs of India is the “Principal Recipient” for the grant and would implement the project. It is astounding and disheartening that $37 million has been available to provide treatment for nearly a year, and could potentially have saved 45,000 lives, yet the CCM and Principal Recipient have not been able to complete the requirements needed in order to receive the funds and begin implementation of treatment. More perplexing is the fact that NACO has been able to complete requisites for the small government financed treatment access roll-out, but not for the Global Fund roll-out which will cost the government nothing at all.

The Global Fund claims that it is trying to use partner agencies including WHO and UNAIDS to speed up this process, but obviously the outcome remains lethal.

The total amount available over the entire five year project for scaling up from the 4th Round HIV grant would be about $122 million, with a goal of placing 137,000 people on treatment during a five year period. Yet, according to our calculations based on current medication prices, for every $10 million available, about 50,000 people should be able to receive treatment.

Ironically, a fourth round grant agreement was signed just weeks ago for $4.2 million, with a Consortium of five Indian NGOs. But of this money, over $1.9 million is allocated for “infrastructure, human resources, and planning and administration,” while only $62,000 is for drugs, in this case drugs to treat opportunistic infections.

Informed sources in Geneva indicated that India’s various Global Fund grants could be canceled due to lack of follow up as the two year review process approaches for the Round Two grant, and implementation is still bogged down in delays due to bureaucracy.

The reality for PLWA in the streets and hospitals of Mumbai, is that the windfall of resources available in Geneva and New Delhi is being delayed by a small army of paid bureaucrats, while those who need treatment simply find a place to die.

Hospices in Mumbai

Nestled in the far northeast corner of the city, six kilometers from the end the Mumbai railroad line is the Niramay Niketan AIDS hospice. The day I visited about 50 PLWA were living there, but none had access to ARVs.

“Not all of them are terminal,” said Frank Furtado, Director of the programme. “For those who can be treated for their OIs, we try to get them out in 15 days. Still, Furtado acknowledged that about 150 PLWA die each year at the hospice and an unknown number die after they have left. Furtado expressed skepticism about placing hospice residents on antiretrovirals unless sustainability was guaranteed.

Founded in 1885 as India’s first leper hospital, Niramay Niketan still houses 40 people suffering from leprosy. The stigma and suffering of untreated AIDS patients holds interesting parallels to earlier leper and TB sanatoria, while today, despite the fact that cheap and effective remedies exist, 98% of AIDS patients in Mumbai and throughout the country are abandoned to die.

The Neketen AIDS programme began in 2002 in a new building constructed with donations obtained by Furtado, and the entire project including leprosy and AIDS care, functions on a budget of US $5,000 per month.

Furtado, although he has directed the project since its opening, was completely unaware of the Global Fund or the money sitting unused in Dehli and Geneva. Nor had he been told about the possibility of applying for a 5th round grant.

Furtado mentioned that there is a great shortage of staff at the centre but indicated that part of the problem is that there are not enough qualified nurses who are willing to work with PLWA.

Since my visit coincided with lunchtime, nurses and assistants were busy serving ample portions of food to the residents. Two wide-eyed, but emaciated children, perhaps 5 years old, stared at the pale-faced intruder.

Each of the five AIDS units has its own TV and the centre is immaculately clean, in spite of the staff shortages. Furtado proudly mentioned that his institution has always been willing to accept “eunuchs” as transgendered people are known in India.

Sex workers condemned to death

Interestingly, at the JJ Hospital Centre treatment programme, only four women out of 600 enrolled in the programme are sex workers, even though Mumbai’s infamous red light district is just three kilometers from the hospital. An estimated 8,000 sex workers are HIV-positive. According to one source, when sex workers begin to be ill, the men who run the brothels send them back to their home villages to die. They avoid sending them to the hospital for fear that the authorities might obtain information about illegal activities from the sick women.

In another AIDS hospice, Jyothis Terminal Care, 50 kilometers north of Mumbai, the Director, Mrs Bede, informed me that all 73 available beds were filled. Only four of 73 PLWA have ARVs, those four as a result of donations made to the hospice, Mrs Bede confirmed that hospice records showed that of 800 people who were admitted to the hospice during the past five years, 400 are known to have died, but no information is available on several hundred others who eventually left the hospice. Fewer than 100 are known to be alive.

I asked Dr Vasvani why no attempt was being made to utilise the hospices for disbursement of antiretrovirals, given the fact that both Jyothis and Neketan have physicians and nurses on staff. He replied: “You have to move slowly with these kinds of things.” In fact, in Mumbai there seems to be no shortage of infrastructure available in the health care system, an issue frequently referred as an obstacle in sub-Saharan African countries and rural areas. But in Mumbai, doctors and clinics abound and with the funds that should be flowing, could be enlisted in ARV roll-out programmes.

While I was in India, a large paid advertisement appeared in one of Mumbai´s English language newspapers (Mid-Day) soliciting proposals from NGOs for the fifth round of Global Fund projects, but no such announcement appeared in any Hindi papers. It is estimated that 95% of PLWA in India speak no English, but many NGO directors as well as most government officials are fluent in English. No mention was made in the advertisement for proposals related to care and treatment. Global Fund projects are country driven, according to Global Fund board mandates, so there will be no intervention by the Fund to mandate proposals that would focus on access to ARVs for PLWA. With all the delays in disbursement of funds in previously approved grants, it is questionable why India would even be applying for a Fifth Round grant.

Country coordinating mechanism fails PLWA

Obviously the CCM in India is a lot better at writing lucrative proposals than at implementing them. One wonders if the CCM should not be devoting its efforts to implementing current proposals, and what the real motivation is for soliciting Fifth Round grants from a plethora of NGOs. Perhaps the promise of money strategically delivered to some leading NGOs by the CCM may actually discourage meaningful activism, because some NGOs become reluctant to place pressure on the various agencies involved for fear of losing their funding.

Whereas most NGO directors we spoke to tended not to be overly critical of the AIDS treatment roll-out, one PLWA told me through an interpreter: “You are in India, but you don’t understand. To the Indian government, people living with AIDS are unwanted. They would happily be rid of us.”

India has long been a centre of international activism as a result of various Indian generic companies which produce ARVs that are exported throughout the world at cheap prices. While I was in India the new Patent Act was passed despite the strong protests of Indian as well as international activists. This law may have significant long-range impact on the exportation of these drugs. There was major coverage in the press regarding the Patent Act. But, over the years with all the attention focused on the Indian generic companies little or no attention has been focused on the fact that 98% of all Indians themselves lack access to the inexpensive ARVs that are manufactured by numerous companies in their own country.

I obtained the detailed minutes of the regular monthly ARV scale up meeting held in New Delhi on 3 February of this year, and attended by WHO, and NACO employees, as well as many international donor sources and civil society groups. Even as government representatives were explaining the newly reduced goals in terms of scaling-up, no mention appears anywhere in the minutes of the untapped Global Fund resources.

Lethal Global Fund policies

The Global Fund’s own “country driven” orientation, which mandates only minimal intervention in national decision-making regarding fund implementation is inextricably linked to the “genocidal” bureaucracy that is apparent in India. It is clear that neither the CCM nor the Principal Recipient in India is concerned about the fact that nearly 100,000 people may have died of AIDS since the Fourth Round grant was approved. But the Global Fund does not intervene (because of its “board policies”) to implement project safeguards that would stop the deaths of Indian PLWAs and get treatment to them. So the Indian CCM and Principal Recipient feel little or no pressure from the funding source to fulfill their obligations in a way that would be congruent with the life or death urgency of the situation. Ultimately it is the Global Fund and the National AIDS programme that are failing the multitudes of poor Indians who need treatment.

One of only three civil society Global Fund board members worldwide works in New Delhi at a large international agency, but even her presence at the heart of where the struggle should be, seems to have generated little or no impact.

The Global Fund continues to describe itself as a funding source only, and also as more of a “bank” than an implementing agency. This is distressingly accurate. Just the interest on $140 million dollars sitting in a Swiss bank for a year, at 6% interest, would yield about $8 million, enough money to purchase ARVs for 40,000 PLWA for one full year at current prices.

Current Status of India’s Global Fund Grants that Focus on AIDS Treatment, April 2005

(Please note that approximately 200,000 people have died of AIDS in India  since the Round Two grant was approved, approximately 80,000 of these have died since the Round Four grant was approved.)

*$122 million of this amount is available to the government for treatment access, and $18 million is for an NGO consortium that will not be providing treatment.

**$800,000 has been disbursed to the NGO consortium, but not for ARV access.

Richard Stern is Director of the Agua Buena Human Rights Association, Costa Rica – rastern@racsa.co.cr

Agua Buena Human Rights Association
http://www.aguabuena.org