Indian Government Bureacracies Kill Off People Living with AIDS

[Guest guest]

Dear FORUM,

Some on this list-serve may have already seen this article which was circulated

in late April, but, for those who haven't I am sending it again. I think the

utilization of the Global Fund resources available for treatment access in India

should be a number one priority. So much money is still sitting in the bank,

that could be used to save lives now.

greetings,

E-mail: <rastern@...>

__________________________

Millions in Global Fund grants go unused: Indian Government Bureacracies Kill

Off People Living with AIDS.

by

Stern***

While hundreds of millions of dollars in assistance for AIDS pour into India

from international donor sources including the Global Fund, only 5,000 People

Living with HIV/AIDS (PLWA) are receiving anti-retroviral treatment through

the public sector. Incredible negligence on the part of the National AIDS

Control Organization (NACO) and the Health Ministry combine to systematically

create a form of " bureacratic genocide, " contributing to the deaths thousands

of PLWA who need treatment now.

According to the World Health Organization (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

governments 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 for AIDS, Tuberculosis and Malaria (GFATM), but not one dollar has been

disbursed from Geneva to India for Anti-retroviral 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. A staff of 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 April 1st no more PLWA can be placed

on treatment. The Mumbai AIDS Control Center 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 Center staff acknowledged that 1,500 children are

known to need treatment, and despite a thriving low cost generic manufacturing

industry, incredibly there are no pediatric 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) 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 mute point, since none of the people who could be treated with

Global Fund money have even been placed on treatment as of this date. 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 summarizing Global Fund

Grants below)

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

centers, but NACO had originally announced that treatment would be available

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

Center, 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 NGO's, indicated that in March of 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 ccompanying person " to insure adherence. I had

no chance to ask her if she is aware that this policy is against all " best

practice " policies that entitle 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 of 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 PLWA during the

first two years of the project.

Informed sources claimed that the delay in signing the contract and disbursing

the funds are 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 own calculations based on current medication prices, for every $10

million dollars 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 NGO's. 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 for

Opportunistic Infections.

Informed sources in Geneva indicated that India's various GFATM 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 ARV´s.

" Not all of them are terminal " said Furtado, Director of the program. " For

those who can be treated for their OI´s, 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 quantity after they have left. Furtado himself expressed skepticism

about placing hospice residents on ARVS 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 draws interesting parallels to earlier

leper and TB Sanitoriums, while today, despite

the fact that cheap and effective remedies exist, 98 percent of India's AIDS

patients in Mumbai and throughout the country

are abandoned and left to die.

The Neketen AIDS program began in 2002 in a new building constructed with

donations obtained by Furtado, and the entire project including leprosy as well

as AIDS 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 Center 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 occurred during lunch, 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 center 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 Center treatment program, only 4 women out of

600 enrolled in the program 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+. 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 would avoid sending them to the Hospital for fear that authorities could

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 are filled. Only

4 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 persons 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. Less than 100 are known to be alive.

I asked Dr. Vasvani why no attempt was being made to utilize the hospices for

disbursement of ARV's, given the fact that both Jyothis and Neketan have

Physicians and nurses on staff. He replied that " 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 programs.

While I was in India, a large paid advertisement appeared in one of Mumbai´s

English language newspapers (Mid-Day) soliciting proposals from NGO´s 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 ad 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 ARV's 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 NGO's. Perhaps the promise of

money strategically delivered to some leading NGO's by the CCM may actually

discourage meaningful activism, because some NGO's 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 with AIDS

are unwanted. They would happily be rid of us. "

India has long been a center of international activism as a result of various

Indian generic companies which produce ARV's that are exported throughout the

world at cheap prices. While I was in India the new Patent act was passed over

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 February 3rd of this year, and attended by WHO, and NACO

employees, as well as many international donor sources and civil society

groups. Even as t 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

GFATM 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 occurring in India.

It is clear that neither the CCM nor the Principal Recipient in India are

concerned about the fact that nearly 100,000 people may have died of AIDS since

the 4th 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 the Indian PLWA and get treatment to them. So the Indian

CCM and Principal Recipient feel little or no pressure from its funding source

to fulfill its obligations in a way that would be congruent with the life or

death urgency of the situation. Ultimately it is the Global Fund as well as the

National AIDS program 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 Ageny, 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 a 6 percent interest rate), 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 as of

April, 2005

(Please note that approximately 200,000 People have died of AIDS in India since

the Round 2 Grant was approved, approximately 80,000 of these have died since

the Round 4 grant was approved.)

Project Title

Date Approved

Amount Approved and Available for the five year grant Amount Disbursed as of

April, 2005

HIV prevention and care for PLWA through scaling up PMTCT services and public/

private ARV treatment January, 2003 (Round 2) 28 months ago

$100 million

$4.7 million

Access to Care and Treatment June, 2004(Round 4)

10 months ago

$140 million*

$800,000**

Totals

$240 million

$5.5 million

*$122 millon of this amount is available to the Government for Treatment Access,

and $18 million

is for an NGO consortium which will not be providing treatment.

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

************************************

***Director, Agua Buena Human Rights Association

San , Costa Rica

Tel/Fax 506-234-2411

rastern@...

agua.buena22@...

www.aguabuena.org

Assistant Director: Guillermo Murillo

memopvs@...

(with thanks for editing to) Caribbean Coordinator: Eugene Schiff

eugene.schiff@...

Argueta, Guatemala/El Salvador

highlander213@...

Mabel ez, Honduras/Nicaragua

legreec@...