What is the HIV/AIDS programme in India about? How can NGOs and civil society organisations get involved? Where does the money for the programme come from? How is it being spent?
These are some of the big questions discussed and debated at a seminar organised by the Centre for Communication and Development Studies, Pune and Lawyers Collective HIV/AIDS Unit, Mumbai. A summary.
‘Is HIV a major public health problem in India?’
In this presentation that set the stage for the discussion, Dr Kamakshi Bhate, Associate Professor, department of preventive and social medicine, KEM Hospital, Mumbai, proposed that HIV/AIDS must be understood in the context of the entire burden of health in the country. Health, in turn, should be seen within a social context.
When determining whether a disease is of public health importance, we look at whether it affects a large number of people (like TB and malaria); causes a lot of morbidity and mortality (like TB and cholera); requires long-term treatment like TB; leaves long-term disability (polio and leprosy); affects the national economy (malaria, TB, and HIV/AIDS); or affects families and communities (TB, AIDS, maternal mortality).
Tuberculosis as a public health problem
There are 2.2 million new cases of TB in India, which carries a third of the global TB burden. One million people are infectious, smear-positive pulmonary cases at any given time. Two-three people die every minute or 1,000 people die daily due to TB in India. An estimated 450,000 people die annually. India has more new cases of TB than any other country in the world. India has not only maintained its burden of TB but also is at risk for developing multi drug-resistant TB on a large scale. India has one-fifth of the 5 lakh multi-drug resistant (MDR) cases reported the world over. TB costs the country an estimated US $3 billion per year.
Yet the government spends just US $0.74 billion per year on this public health problem. Though the Revised National TB Control Programme (RNTCP) increased its TB coverage 100 times in 2004, the budget for first-line anti-TB drugs was just $12 per patient. In 2006, it was reduced to $10 per patient. The total money spent by the central government in a year for the control of TB has been 5.4 per cent of the health budget in 2000/01 and 1.6 per cent in 2007. This reduction in funds, despite the substantial burden of TB, makes it appear that the disease is being overlooked in this country.
HIV/AIDS as a public health problem
Before 2006, UNAIDS estimated that 5.7 million people in India were living with HIV/AIDS. The National Family Health Survey, 2007, brought that estimate down to between two million and three million.
But if we look at the Global Fund allotment for various diseases, this is the picture: 58 per cent of the money from the Global Fund goes to HIV/AIDS, 17 per cent to TB, 24 per cent to malaria and 1 per cent to other diseases.
To fight HIV/AIDS, the government is spending $2 billion. Some 75,000 people receive no-cost antiretroviral treatment; there are 2,000 centres to provide education to groups at high risk, and condoms to sex workers and their clients. India has established 3,600 public HIV testing centres.
It is true that AIDS has a number of unique features: The risk of infection is strongly linked to inequitable gender relations. Women cannot insist on the use of condoms (they may not able to say “No” to unsafe sex to their partners) and the anatomy of the female reproductive tract also makes women more prone to infection. AIDS has also had an impact on children: In India 200,000 of the people living with HIV (PLHA) are under 15 years of age. Some 50,000 to 60,000 children are born with HIV each year, though there are drugs for the prevention of transmission from mother to child. Children who are positive must keep their status secret to stay in school, putting themselves at risk. Finally, the HIV/AIDS programme is often the subject of political games. Two examples are the frequent calls for mandatory premarital testing for HIV, and opposing school sexual health education.
For a successful public health programme
The AIDS programme has money but to ensure that it is successful and also benefits other public health programmes, we should consider the following issues:
First, public expenditure on health was 1.1 per cent of the GDP in 1998-99. It has declined in the last decade. The Indian government will have to increase its expenditure on health.
Second, in the past, programmes have been initially successful but later collapsed because they were not holistic. The malaria eradication programme is one good example. In 1953 when the national malaria control programme was launched in India there were 70 million cases and 8,00,000 deaths every year. In the next ten years, malaria cases came down to as low as 50,000 per year. But the numbers slowly started climbing up again and at present there are 2 million cases of malaria every year. Today we accept that the malaria control programme has failed. We overused the wonder chemical DDT without looking into other, multidisciplinary aspects.
India is certainly not in a denial phase as far as HIV/AIDS is concerned. It is true that the pressure from critics has forced the country to move faster. Now we can make sure that AIDS funds are used to strengthen general health services while ensuring care and support for AIDS patients. HIV complicates the TB scene in this country. Perhaps the AIDS control programme can help the TB control programme.
Ashok Row Kavi commented on the break-up of Global Fund money (58 per cent for AIDS and just 17 per cent for TB). “The Indian government told the Global Fund that it did not need any money for TB. Considering that TB is the most serious opportunistic infection, this is odd. The problem is that we don’t have a holistic programme; there are no linkages between programmes. The National Rural Health Mission is a political mission not a health mission.” Dr Bhate responded: “I agree about politics entering into it. We’ve always had a problem with vertical programmes and learnt lessons too late. But the AIDS programme has been revolutionary in many ways. For example, we have sex workers involved in the programmes which has never happened before. Medical colleges would never have sent their students to red-light areas or to organisations of MSM (men having sex with men). Today, KEM has made a module for MSM where they are peer trainers and educators.”
What is the difference the National AIDS Control Programme 3 (NACP 3) will make?
Many people want to know more about the National AIDS Control Programme (NACP). Dr R Gangakhedkar, deputy director, National Aids Research Institute, Pune, was to speak on this subject but could not attend. He sent his presentation, which was referred to by other speakers and has therefore been included here.
Since the first indigenous HIV infection was identified in India in 1986, the government has taken a number of measures: HIV testing of blood units was made mandatory (1989); the first stage of NACP (1992); the Prevention of Mother To Child Transmission Programme (2001); and the government programme to provide free antiretroviral therapy (2004).
The first phase of NACP (NACP 1), from 1992-1999, was a centralised programme. It established a surveillance system, raised awareness through mass media and established a blood safety system. Services for sexually transmitted diseases (STDs) were strengthened and social mobilisation through NGOs started.
The paradigm shift in NACP 2 was through decentralisation and state ownership, mass awareness about behaviour change, and more participation from non-government organisations (NGOs) and the community. HIV/AIDS came to be regarded as not merely a public health issue but a developmental issue as well. The components of NACP 2 were: cost effective interventions against HIV/AIDS, targeted interventions for groups at high risk, preventive interventions for the general community, low cost AIDS care, institution strengthening and inter-sectoral collaboration.
NACP 3 will be a balance between care and support and prevention. NACP 3 has allocated about 17 per cent of its budget (about Rs 17,500 million) for care and support.
Its main objectives are to reduce the rate of new infections by 60 per cent in high prevalence states, to reverse the epidemic, to reduce the rate of new infections by 40 per cent in vulnerable states to stabilise the epidemic.
NACP 3 will: have an intensified focus on MSM; strengthen capacity; establish linkages between targeted interventions and continuum of care; strengthen supervision, and encourage community-led interventions.
NACP 3 will aim for 80 per cent coverage of 10,00,000 sex workers (SWs), 11,50,000 MSM and 1,90,000 injecting drug users (IDUs) by 2011 through 2,100 targeted intervention projects.
How is the money spent?
Prof Ramesh Bhat, dean, School of Business Management, NMIMS University, Mumbai, was on the team that did the financial planning for NACP 3. He laid out the issues to consider when talking about funding for the programme.
It is difficult to estimate the amount of resources spent on programmes, especially vertical health programmes, because health is a state subject and some support comes from the centre and some from the states. The AIDS programme is 100 per cent supported by the centre with very little coming from the states and in this it is a unique programme. However, components of the HIV/AIDS programme are embedded in other programmes like the STD and TB programmes and even in safety programmes such as for safe syringes in hospitals. So the total amount spent on the HIV/AIDS programme is very difficult to estimate. Also, we have very little idea about the money spent in the private sector health services.
Central funding does not come in cash but in kind, in the form of kits, drugs, medicines and even personnel like consultants. It is challenging to track this kind of funding. Further, the information system is so complex that it is difficult to trace the amount spent in each district.
The process of implementation of these mega projects – some with budgets of $2 billion – is complex. First you have to find out where the money is coming from and then you must understand the process of allocation to states. And disbursement to states depends on many factors. Finally, you have to find out whether the states received the money, whether they have furnished utilisation certificates etc. We have to look at this whole financial supply chain to find out what are the constraints and bottlenecks.
Estimates for allocations
The first requirement in the chain is an Estimation of Requirement. This estimate is based on the HIV numbers collected from a number of sources. We began work with an estimate of 5.134 million to 4.73 million.
NACP 3 has four components and each has a budgetary allocation: Prevention (60-64 per cent), Care and Support (20-24 per cent), Strengthening Capacity (10-12 per cent), and Strategic Information Management System (3-7 per cent). There’s a special component for the North-East to take into account the difficulty factor in those regions.
Within each component there is a further breakdown of allocation. For example in Prevention, 15 per cent is for high risk groups, 11 per cent for services like prevention of parent to child transmission, voluntary counselling and testing centres, antiretroviral treatment, treatment for STDs, etc, and 5 per cent for condoms, information, education and communication (IEC), advocacy and blood banks.
NACP 3 also made budgetary allocations for high risk groups based on earlier research that yielded estimated numbers for each group. Not all those in each group were to be covered in one go; targets were set that would be scaled up each year.
For greater accuracy, NACP 3 had district level, not state level, planning. Districts were identified as high risk, moderate and low risk. This was a better strategy than the earlier one of categorising states because low risk states could have high risk districts. For example, UP and Bihar were considered low risk states but had some districts that were high risk. Districts were divided into A,B,C,D and resources allocated accordingly. This ensures that the right resources reach the right areas instead of being spread across the country.
A component like condoms has an overall target set for each year. Within that too there are three components – for free supply, for supply at cost, and for commercial/private. IEC Advocacy is a black box in planning because most of it is discretionary in nature. This money is allocated to the states and no targets can be set so it is difficult to state if it is meeting the requirements. So we look at some criteria to base the allocation on, such as what percentage of the population is youth, or women, whether the area is close to the border, religious composition, literacy, migration, etc.
For the North-East we had to look at difficulty factors such as the median distance people have to travel to get health care, per capita income, road length, production costs, etc. When we factored these parameters in, we found the difficulty was 1.7 times more than the rest of the country. Taking into account this “difficulty index” we increased the budget to compensate. This was replicated in other parts of the country in similar situations.
Doing this exercise we finally came up with a figure of Rs 11,000 crore for the AIDS programme. This figure was further split into two; one part would be taken care of by the private sector out-of-pocket expenses and by mainstreaming, like the railways and the military that will spend some money. Some Rs 3,000 crore goes into that. So the government is left with the responsibility of Rs 8,000 crore. Forty per cent of this is outside budget support. This means that an agency like the Gates Foundation, for example, agrees to donate money for a programme. This is an additional amount, not part of the government budget, though it is done in agreement with the government. That leaves us with 60 per cent government budgetary support, but this, too, is not entirely government money. The government can have an agreement with, say, the World Bank, the Department for International Development (DfID) or the United States Agency for International Development (USAID) for a sum of money that will be routed through the government.
So, it’s difficult to say how much of the money is actually government money and how much is coming from these other agencies. There is also “embedded” financing which means that the government accounts for money spent, for instance, on blood blanks as part of the HIV programme. This is anyway being done under other programmes, but it is put under the heading of the “government’s contribution to HIV/AIDS”.
We have to remember that funds given by agencies like the World Bank are loans and have to be paid back, while other agencies such as DfID give grants that don’t have to be paid back.
How to track the money
For journalists, the important thing is to monitor how much of the money eventually allocated to state AIDS control societies (SACS) is in cash and how much is in kind. And it is important to keep track of how these resources have been used.
The health sector must create a national health account to determine where the money has come from and where it has gone. More important, there must be a district health account to determine whether resources have come in time. And for those resources that come in kind, we have to determine whether it was of the desired quality as laid down in the protocol. And finally and equally important, was it accessed by the public?
So what we need are utilisation reports. For example, an ART centre has been set up to treat, say, 1,100 patients. But sometimes it treats just 400 patients. We have to find out why.
Journalists must be aware of, and ask, these questions.
Eldred Tellis, Sankalp Rehabilitation Trust, suggested that just as financial planning calculated the difficulty factor for the North-East, it should take into consideration the higher costs in metropolitan areas. He also noted that while records show large amounts of money being spent, NGOs receive poor quality or inappropriate material. “For example, IEC material is often low quality. And the syringes supplied in one programme were not the type drug users would use because they wasted too much of the injecting drug. Who is there to monitor these things at the micro level?”
Madhu Oswal, Pune HIV Helpline, asked if there was a budget for helplines, and if so, who funds such projects. “In Maharashtra, though a helpline number is given, it is not functioning.” Dr Bhat responded that if the SACS ask for it in their budget they will get it. “The provision for a helpline is there.”
Rupa Chinai, independent journalist, asked if there were any reliable figures about how many people are affected. “The estimates are based on figures from government services What about the huge numbers of people who go to the private sector?” Dr Bhat responded that the modelling does adjust for this.
Mariette Correa asked if anything had been done to adjust the budget to the new figures. Dr Bhat replied that reviews had started. “What is likely is that ten years down the line the budget will be affected by today’s numbers.”
WHERE CAN CIVIL SOCIETY ORGANISATIONS MAKE A DIFFERENCE
Ashok Row Kavi from the Hamsafar Trust spoke on whether NGOs have made a difference.
If you look at the TB-malaria programme and the HIV programme there are stark differences. The HIV programme’s client population is sex workers (SW), injecting drug users (IDU)), men who have sex with men (MSM), and transgenders. This client population is categorised as ‘criminalised’. The HIV programme could not have worked without NGOs and community-based organisations (CBOs) working in the affected populations.
In the last five epidemiological profiles coming out of surveillance centres, HIV prevalence among IDUs and MSM has doubled. Yet they get low priority. Why have sex workers got higher priority? They have rightly got high priority because they are women and because there is social oppression. But the other two are not there in planning.
Now, for the first time the government has had to plan and execute a public health programme through community-based organisations. It is because people like me fought in the planning phase that NACP 3 has put it on record that in the third year 50 per cent of programmes must go to CBOs. But last year, when I had meetings with project directors of state AIDS control societies, they flatly refused to hand over the programmes to CBOs saying that such groups were unreliable. If we are unreliable, then why work with us at all?
Most of the money does not go to community-based organisations though they do most of the work. A lot of us were involved in all those figures that we saw in Ramesh Bhat’s presentation (on allocation of funds in HIV/AIDS programmes) and we observed that there is no holistic planning; the groups most affected are often not consulted. So we need more interaction if NACP 3 is to have any success.
They want 200 interventions with MSM and transgenders; there are only 19 on the ground now and they expect us to scale up in two years because there’s a huge amount of pressure from international agencies. You can criticise international agencies, but they came in and said that this core population has to be looked at – MSM, transgenders and IDUs. What were we doing targeting female sex workers so much? There is enough evidence that the HIV pattern in India is not the African pattern, not the South East Asian pattern, it is strangely enough very much the American pattern.
What can NGOs do that government cannot do?
Prof Brinelle D’Souza, Tata Institute of Social Sciences, Mumbai, described the changes in the involvement of civil society organisations (CSOs) and NGOs with the AIDS programme.
CSOs and NGOs responded first to the AIDS crisis while government agencies were still in denial. Those affected were the marginalised sections of society among whom CSOs/NGOs had a base; only these organisations could reach these populations. Many CSOs responded innovatively, but their efforts were localised. These were mostly newer organisations because while community-based organisations (CBOs) of gay men came forward, existing women’s and children’s organisations were not willing to engage in this area.
The national programme, which was not used to dealing with anything on sex or sexuality even though it had a family planning and reproductive health programme, was forced to engage with CSOs at least grudgingly.
During NACP 2 there was a much greater engagement with CSOs than there was in the subsequent years leading up to NACP 3. During NACP 2, a lot of the programmes on care and support came about because of advocacy of CSOs and positive people’s networks. There was a change with NACP 3. The scare of increasing numbers brought in the money and also international organisations and bilateral agencies that began carving up the country into niche areas. International agencies began implementing programmes with the support of local CSOs.
CSOs move from advocacy to implementation
This changed the entire response of CSOs. They are not playing such an important role in advocacy. Unless they are big, and out there, and can make a big noise, CSOs have been co-opted into being implementers of the programmes of large foundations. This is a worrying trend because CSOs feel constrained to raise questions of ethics against organisations that are supporting them. Often, conditions are incorporated in agreements. For example, we were asked to sign to an anti-prostitution clause. So what must one do? Return the money and know that it will be given to some other organisation that may not use it as effectively as we could, or give in?
Because of the scare of growing numbers, a lot of money has come in for intervention programmes and many of these programmes are run today by management people. Though there is a need for a multidisciplinary focus and for professional management, these programmes often do not take a rights-based approach. Management is all about inputs and outputs, and rights are often compromised.
Another problem is that you are given funding but you are also told how to spend the money. Earlier programmes responded to the whole gamut of needs of people with HIV. Today you can’t do that. In one project there was an issue of gender-based violence but this could not be addressed because the project’s aim was to distribute condoms.
This “CBOisation” has become a very simplistic process. No one is asking: are communities ready to take on certain things? Do they want to take on certain things? In one project sex workers were forced to come together to form a collective. There was no consideration of the fact that differences in caste, regionalism, and religion, make it difficult to bring communities together.
While there have been consultations for NACP 3, grassroots organisations are not included. You see the same faces that represent certain communities, it is still expert- driven. It’s also becoming more complex. Rigour and discipline are required but there must be a balance. Advocacy by civil society has got diluted. It’s also more fatiguing to sustain networks.
After all these years we still don’t have a clear articulation about human rights in our AIDS policy. There is a lot of rhetoric, of course, like we have rhetoric about the feminisation of the epidemic – or about HIV orphans – but there is no budgetary allocation for it.
More than ever, CSOs need to play a greater role because the programme is going away from our hands to the detriment of target groups.
How do NGOs working with marginalised groups deal with the authorities?
Eldred Tellis, director, Sankalp, Mumbai, started his session with a short film depicting the poor and deprived environment in which injecting drug users live. The object of the film, he said, was to make the point that when we say they are marginalised, you can see that they are truly marginalised.
We have what is called a low threshold programme. We give them whatever help they need: a bandage, a glass of water, a meal, or help to give up drugs. The bottom line is that most people we reach out to want to give up drugs. And that is actually part of the problem that we have, because if you look at NACP it’s looking just at HIV prevention. Here are people who want to give up drugs; they have hardly any concerns about HIV. But we are actually dealing with HIV prevention.
We are at loggerheads with NACP because they are telling us, “You are there to prevent people from injecting drugs and getting HIV.” A client who comes to us is someone who is supposed to be already injecting drugs. But when we go out there to help people we find that many users are “chasing” – inhaling heroin, not injecting. Studies show that for the first six to eight years they do chasing before going on to injecting. But we cannot help them because they are not injecting. So when they come to us we have to tell them, “Oh, you’re not yet injecting so we can’t help you.” Basically they just want to quit drugs.
There also used to be a requirement that there must be 1,000 IDUs to get funding for a programme, but NACP 3 is looking at a figure of 300 now. About gender bias, we may have 10-12 women injectors but no one will allow us to have a separate programme for them. It’s not cost effective, they say. Actually it’s a vicious cycle because if I have a programme for women, more women will come -- you have to start somewhere. Now, a foreign donor may allow us to start such a programme with a few women, learn along the way, but NACO is not willing to do this; for them, one size fits all.
There’s no creativity. They treat their guidelines like gospel truth. For example, I have a community centre for injecting drug users. But since I have no control over them, I don’t know where they go, what they do etc, I am not willing to put them into ART at that stage. But there is a NACO directive that if you have a community care centre, you have to be connected to an ART programme. I am being responsible -- I don’t want to increase resistance to ART -- but that will happen if these people leave the programme and start injecting again. I say that if a user is clear for one year, then I will put him in ART because he is settling down, he has a home and job, so there’s better chance for compliance and adherence.
Recently there was a directive given to us about documentation; the government has given us 35 registers to be maintained! I have 17 peer educators but they are barely literate. They know how to write down the basics, but how can they manage so much paperwork? If a software system is created for this, then we can at least train them to use it. We have a large number of programmes that require us to interact with 70-80 clients every day. If we have to do so much paperwork, where is the time to interact?
There is also a problem with law and order. Under the Narcotic Drugs and Psychotropic Substances Act a person can be apprehended for being a drug user if he has a syringe on him. If there are four people using drugs and four people looking at them, all eight are caught. Even those who are off drugs can be hauled in because they have a past record of using drugs. The police are sometimes using this law wrongly to throw people into jail. The jails are overcrowded and understaffed. We run a programme in Arthur Road jail so we know what’s going on there. Sometimes there are no personnel to take those on ART to the centre to get their supply of medicines. So they can end up “defaulting”.
There is no law that permits needle exchange. So our staff members who are engaged in the needle exchange programme can be apprehended. We want immunity for our staff but that’s not happening.
The ministry of health works with HIV and the ministry of social justice deals with drug abuse so there is no coordination in policy. In fact, several policy changes are needed. Take bilateral agencies: USAID does not give money for programmes like ours, for drug users. The government has allotted USAID certain districts to function in. Now, coincidentally, these districts have substantial drug use, but USAID won’t give money for the problem and no one else is allowed to either.
Shrikant Bhat, lawyer, asked if there was a causal link between poverty and HIV. Brinelle D’Souza responded that there is no direct relation, “but poverty creates the conditions of risk of HIV infection. It deprives you of choices and enhances the possibility of HIV.” Eldred Tellis added that there is data correlating homelessness to drug use.
Mirra Savara, independent researcher, asked if there was any documentary evidence that bilateral programmes were pushing in one direction, or any criticism of them. Brinelle D’Souza responded that there was insufficient research on this in India, unlike in Africa. However, activists have provided a number of examples. Ashok Row Kavi added that an NGO forum had been formed to address this issue but it was not doing its job. “Funding goes to obscure organisations. UNAIDS is trying to bring out a citizens’ report, but there is much opposition to it. So, it’s not been documented but it is being talked about.”
Sandhya Srinivasan, CCDS, commented on the statement that the voices of CBOs are giving way to the voice of public health programmes. Today’s public health programmes represent one view of how such services should be provided. There is another view that public health services should be integrated programmes rather than vertical programmes. Ashok Row Kavi responded that it is very difficult to integrate programmes now. “No one wants to give money to NGOs representing marginalised groups because they are not what you call part of public health; they are based on desire and pleasure and these are illicit things in our society. They have nothing to with reproductive health or child care.” Eldred Tellis commented about the model of integrating the NGO and government sectors: “What is the impact on the ground?” Brinelle D’Souza stated that the medical interventions are good because ARV and PPCTC have been scaled up. “But individual needs, welfare needs are not being met.”
Another participant asked whether all these programmes have helped people on the ground. Eldred Tellis replied: “My presentation may sound negative, but of course, there are success stories, otherwise I wouldn’t be here. Burnout is high, but the only way we deal with it is because of the successes. Just the fact that we work in this field is a big difference. Marginalised people are touched that anyone cares for them. We have a 25 per cent success rate and have even sent people back to their hometowns.”
Dr Padmaja Samant, KEM Hospital, commented that the presentations really made her think: “In medical practice we only treat bodies; we don’t see people in toto. Unless the approach is more humanised, it won’t succeed. When we submit data to the Mumbai District AIDS Control Society on STDs or reproductive tract infections, there is a format in which high risk groups data is supposed to be submitted. But we do not go into the social history or the occupation of patients, so we have just deleted that section about high risk groups. The question that troubles me is how can we sensitively handle this issue when we cannot spend even one minute with each patient in our overcrowded OPDs?” Eldred Tellis responded: “I’m glad Dr Padmaja has said this. Now can I request her to lobby in KEM for just two beds for transgenders who are drug users. I cannot get a single bed in either the male or female ward for transgenders.”
II. ACCESS TO CARE AND TREATMENT
Why do barely 30 per cent of those needing ART get it?
Dr Alaka Deshpande, department of medicine, Grant Medical College and JJ Group of Hospitals, Mumbai, spoke on the government programme to provide anti-retroviral treatment.
In 1981 AIDS was a dreadful disease. By 1998 it had become a chronic manageable infection and by 2001 we were seeing drug-resistant HIV. (I’m not sure where this figure of 30 per cent getting treatment came from. A person can be asymptomatic for 8-10 years. Treatment does not start the moment a person is HIV positive. Only if the CD4 count is 350 or less can the treatment be offered.)
In June 2001, UNGASS gave a call to action. In September 2003, WHO/UNAIDS declared lack of access to ARV a ‘Global Health Emergency’. The WHO/UNAIDS 3x5 Initiative (treat 3 million by 2005) was launched on December 1, 2003. In the same month, revised WHO guidelines for antiretroviral use became available.
India launched its ART programme in 2004. By 2007, the National ART Programme was providing free ART to 100,000 people through government hospitals. Treatment eligibility is determined by certain guidelines (WHO stage 4,3,2 with CD4-200).
The objectives and targets of the national programme are: to provide long term ARV therapy to eligible patients, to monitor and report treatment outcomes on a quarterly basis, to attain individual drug adherence rates of 95 per cent or more, to increase lifespan so that 50 per cent of patients on ARV are alive three years after starting ARV, to ensure that 50 per cent of patients on ARV are engaged in their previous occupations.
The JJ Hospital has the largest dedicated HIV outpatient ART centre in the country with an annual attendance of 18,000 OPD patients and 2,200 inpatients. A total of 7,931 patients have received or are receiving ART. Of these 8 per cent expired, 7 per cent transferred out, 2 per cent were planned discharge and 7 per cent LFU.
What are the challenges the programme faces?
Poor infrastructure: Infrastructure, including laboratory services, needs strengthening and scaling up. There must be a continuity of supply of ARV drugs. Health care providers have to be trained, and there must be surveillance of drug resistance. We also have to ensure 95 per cent adherence, countrywide provision of ART, decentralisation of the process and mainstreaming into other sectors.
Side-effects: ART has a number of side-effects. Managing drug-induced side-effects is a big challenge. As people survive longer and their lymphocytes fight back, they begin to suffer from lymphoma. We have to treat this with chemotherapy and that costs Rs 3,000 per treatment.
Irrational prescriptions by private doctors: Thirty-five per cent of patients are treated in government facilities and 65 per cent in the private sector. We find that prescriptions given by private doctors are often wrong and the dose is inadequate or irrational. People on such irrational treatments come to government centres when their condition gets worse. So what we need is extensive education of the medical community.
Opposition from vested groups: Doctors were saying that our drugs were spurious and dissuading patients from coming to us. Thirty doctors were taken by a pharmaceutical company to Goa and told that two of the drugs on the market were useless and they must use the third, the company’s drug. Also, alternative medicines fool patients and delay treatment.
Implementing the programme for second-line treatment: Second line treatment of ART began in January 2008. Before deciding whether to put someone on second line treatment you have to do very expensive tests. NACO has developed guidelines and we are selecting patients whose viral load is more than 10,000. So far, some 176 patients have been screened and 40 have been put on treatment.
However, I have patients whose CD4 count is less than 100 and I would expect their viral load to be in lakhs. But for 25 per cent of these patients, the viral load was undetectable. That means there is a virological response but no immunological response. These patients are not offered second-line ART.
The moment second-line treatment was announced, I got a lot of patients from the private sector. There is a great demand for the treatment but it is very expensive. Many patients receiving treatment in the private sector want to avail of second-line in government hospitals but only those already enrolled in the government ART programme will get second-line free.
Jaya Nair, Udaan, asked if any research had been done on side-effects. Dr Deshpande said no research had been done.
Eldred Tellis noted that lymphoma needs chemotherapy. “Does this not affect the immune system? About irrational prescriptions by private doctors, can’t a PIL be filed?” Dr Deshpande responded that chemotherapy does suppress the immune system. “But we are treating people on chemotherapy with ART and they are responding. About the PIL, I don’t have the time, money or energy to do that.”
Ishdeep Kohli (Indian Health Organisation), asked if there were any figures on HIV and TB, HIV and jaundice, and what was happening with drug interactions. “Also, is there a facility for training doctors in NACP 3?” Dr Deshpande replied that there are drug interactions. “TB drugs do cause jaundice, there is hepatotoxicity, and so do ARV drugs. About HIV and TB, we ask patients to get tested – JJ hospital has a test for Rs 350 – but if they do have MDR TB, we have no means of treating it in the programme. About training, even if there is training there is no credit system, no renewal of licence.”
Rupa Chinai, independent journalist, asked about the socio-economic profile of patients. “Also, what is the role nutrition can play?” Dr Deshpande replied: “Most patients used to be from the lower and lower-middle class but now the middle class are also affected. No, not enough has been done about nutrition.” Anand Grover, Lawyers’ Collective HIV/AIDS Unit, added that LCHAU had done a study of people on ART. “We found that the average income of those on ART was Rs 2,000 per month.”
Sandhya Srinivasan asked if there is any counselling for children on ARVs. Dr Deshpande replied that she had raised this problem with NACO. “NACO says it is ready with a module but so far it has not reached us. But we are counselling the parents: parents are concerned enough to ensure that their children take the medication. Adherence is high in the paediatric population. But I always feel that one day a child will ask me, ‘How did I get this disease?’ and it will be a problem for me to answer that.”
Mariette Correa asked what efforts have been made to reach marginalised groups. Dr Deshpande replied that they were getting MSMs and transgenders but very few sex workers.
A participant asked why hospitals didn’t refer children to NGOs for counselling. Dr Desphande replied that she would definitely welcome NGOs doing counselling.
Anand Grover responded to the question about whether something can’t be done to curb irrational prescriptions, by saying that LCHAU had been asked to draft legislation to this effect and had done so but nothing has come of it.
Is India the pharmacy to the developing world?
K M Gopakumar, Centre for Trade and Development, Delhi spoke on what the government was doing – or not doing -- to ensure access to cheap drugs.
Most of us can recall the announcement by Cipla in 2001 which exposed the pricing of HIV drugs. Until then, it was just a theoretical proposition that AIDS drugs could be produced cheaply, but Cipla said it could produce the drug at $350 per person per annum against the $10,000-12,000 per annum. Most of these cheap drugs are exported from India but the question is: are we getting drugs cheaper here?
The current status of ARV treatment is that 1,34,000 persons in the public sector and 40,000 in the private sector are getting ARV treatment. The challenge is to scale up the programme, provide new generation first-line treatment, provide second-line treatment and ensure availability of new drugs.
It is generally the case that if you sell more drugs the prices should come down. But this is not true in the case of AIDS drugs. The retail price for first-line treatment is Rs 11,000-12,000 per person per month (PPM). For second-line treatment it is Rs1,00,000 PPM. The new generation, single pill costs Rs 48,000 PPM
In bulk procurement, the cost is Rs 5,600 for first-line treatment; Rs 47,951 for second-line and for the single pill, Rs 13, 899 to 15,847. NACO gets it cheaper. These drugs are all supplied by Indian companies but we are not getting them at these prices. Why?
In costing drugs there are three components: tax and tariff consisting of excise duty and VAT (12-16 per cent); trade margins, both wholesale and retail (35 per cent), and competition, profit margins
HIV drugs are not scheduled drugs so the trade margin, that is usually 35 per cent, can be unlimited. Companies argue that this is because of the lack of competition; if more companies come in, the margin will come down. But this is not true. There is competition - some six companies are producing Tenofovir - but competition has not brought down the price of drugs. Moreover, in India, a large number of people who need treatment are not getting it because of the high prices. Reduce the price and people will buy. In the retail market, companies are maintaining high prices in India though these companies are hailed for providing cheaper drugs abroad.
All the actors involved have a role to play in bringing down prices. The government has a duty to bring down taxes on HIV drugs to zero, because these are life-saving drugs. Pharmaceutical companies must be forced to bring down profits – they can make profits but not so high. And then the supply chain must be disciplined; distributors are acting as a cartel.
Let me explain the concept of the compulsory licence. It is a licence given by the government or the patent office to a third party to use the patent without the consent of the patent holder. One of the grounds of granting a compulsory licence is that the patented drug is not available at an affordable price. This is a very good reason but the problem is that the process of obtaining a compulsory licence in India is long and convoluted. There is no timeframe within which the process must be concluded, resulting in huge delays. Also, pharmaceutical companies can afford to indulge in court cases, delaying the process further.
I must clarify that the patents issue does not constitute a threat to first-line and second-line ARV treatment. What it does is endanger the affordability of drugs. Of immediate concern should be a cut in the retail price of ARVs.
Finally, we should be worried about the moves of companies to merge and consolidate. What effect will this have on drug prices?
Question: What is the view of the government on drug company mergers? Gopakumar replied that the two ministries are at loggerheads – the health ministry is in favour but the chemicals and fertiliser ministry is against it. “The Competition Commission can look into mergers and give a ruling but it has not yet been notified.” Anand Grover added that mergers are a major problem. “The chemicals industry wants the pharmaceutical industry to grow.”
III. AGENDA FOR CHANGE
Introducing this section, Anand Grover said there was huge community empowerment among people with HIV.
How have things changed for positive people (PP) in the last 22 years?
K K Abraham, Indian Network for Positive People (INP+), Chennai
I have been associated with the network since 1995. The early years, 1986-97, were a struggle to form a group. Till 1995 there were just ad hoc meetings, then in 1997 the network was formed with 12 People Living with HIV/AIDS (PLHA) in Chennai, the first such network. Between 1997 and 2008 the network has been more clearly defined, what are its activities, how to grow from a support group to become a national network, how to respond to NACP 2 and 3 etc.
INP + is a community-based organisation and as such difficult to run because everyone has their own ideas, including about whether to liaise with other organisations or not. We are working on a few issues:
Access to treatment: this includes major advocacy from 1986 to 2004 for getting treatment for HIV/AIDS. We are also involved in NACP 3 which included networks like ours and we continue to advocate for expanded coverage. We have a membership of 1 lakh of which 68,000 are not on treatment. We urge people to access treatment if they need it and encourage treatment adherence through our committees at various levels.
Involvement of positive people in State AIDS Control Societies (SACs). Our state and district networks can contribute to the SACs. The Greater Involvement of People living with AIDS (GIPA) policy is a major contribution of ours
Stigma reduction: This includes working on the HIV/AIDS bill, advocacy work with the Lawyers Collective and others.
Including people with disability and HIV/AIDS.
There are several other ways in which we are involved. In Thanjavur in Tamil Nadu outdated drugs were used and we brought this to the attention of the district administration. There are cross linkages with other groups, such as MSM groups.
Still, we estimate that we have reached out to only 15 per cent of the people who need help, so there is a lot of work to be done.
Ashok R Kavi asked why there are separate networks for positive MSM and positive women. Abraham responded that they have a women’s forum and an MSM forum within their organisation.
Anand Grover commented that funding agencies pursue a model that is entrepreneur driven. “Aid agencies are into income generation activities for HIV positive people. This is diluting the activist thrust.”
What are the experiences of women and children in accessing treatment?
Jaya Nair, projects manager Udaan Trust, Mumbai, spoke on care and treatment for women.
When we talk about PLHA we talk about a comprehensive care package. This includes diagnosis, treatment, referrals, follow-up, nursing care, counselling services, and support to meet psychological, spiritual, economic, social and legal needs.
Yesterday I was at a meeting at MDACS where I was told: ‘Your goal is to register all people who come to your network at the ART centre.’ So what I was being told is that if all the people who come to our centre are registered for pre-ARV – whether they need it or not – then our programme is a success. Are we just talking about numbers being registered or about the continuum of care? If we look at it this way, then positive people’s networks are crucial because there are a lot of services that they provide.
There are several barriers to access health services. Financial: treatment can be just too expensive, especially considering the poor socio-economic condition of people who come to our centres. Organisational: There are government hospitals and treatment centres but what about the capacity of the doctors? There is a lack of trained doctors; the capacity of doctors needs to be built up. Physical: The distance people have to travel to access treatment can be huge, especially for people living in rural areas since most treatment centres are in cities. Social barriers of stigma and discrimination. Stigma is very high though it is coming down with a lot of positive speakers coming out. The epidemic has been given a face now so people are more openly seeking treatment.
There have been changes. Constant lobbying with the government by PLHA activists accelerated the rollout of the ARV programme in 2004-05. The coming together of PLHA groups to advocate for the health rights of the community has changed the face of the epidemic by making treatment available and accessible. Positive groups have been involved in mentoring and capacity building of PLHA. Activists and positive speakers within PLHA groups have led the way and set examples to the community, and to society as a whole, on living positively with HIV.
Positive groups have constantly been mobilising the community to access treatment and what regimen must be followed during the treatment. They have given peer support and guidance that has promoted positive living. It is difficult for women particularly to come out and deal with it, because they are doubly stigmatised. Peer modules have worked very well in several ways from access to treatment to adherence to treatment etc.
The stigma related to HIV is still very high and positive groups are coming together to address this. Dissemination of correct information among the public created by the positive groups addresses this problem. Media is crucial in this. Drop-in centres by positive people have provided a safe haven for PLHA.
Positive groups have also been involved in advocacy at all levels. At the community level this may consist of accompanying HIV positive people to clinics for treatment and persuading local chemists to stock drugs essential for PLHA. On the national level advocacy takes the form of participating in the standard treatment guidelines for HIV/AIDS and influencing the government to increase the supply of drugs. At the global level, encouraging drug manufacturers and suppliers to reduce the cost of drugs and supporting government policy on compulsory licensing of essential HIV/AIDS drugs is a part of the advocacy effort.
Finally there is the formation of self-help groups: treatment advocacy committees, treatment education committees, treatment adherence groups and pressure groups of PLHA. It is difficult for hospitals to monitor adherence because of the large numbers and positive groups have helped in this area. There are also pressure groups to lobby for improvement of health care system.
Sandhya Srinivasan asked what Jaya Nair’s view was on compulsory pre-marital testing. Jaya Nair responded: “Personally I think such testing should not be imposed.”
Kavita Gaikwad (Lawyers’ Collective): “Do positive groups put pressure on people to speak about their positive status?” Jaya Nair replied: “No. If you do speak out, it is a measure of how confident you are.”
Ashok R Kavi commented: “On the issue of confidentiality in testing, women in Indian society need to know what the man is up to. So confidentiality should not be upheld in such absolute terms when the status of women is so low.”
Anagha Ghosh (CCDS) said: “ We were talking about numbers, but the numbers of people with disability and HIV are invisible even in targeted interventions. They just don’t get counted.” Anand Grover replied: “This is a big problem. We need disaggregated figures for MSM, SW, IDU and people with disability etc. But when we brought this up in discussions, we were told that to do this would be discriminatory!”
What is happening to the HIV/AIDS Bill?
In the concluding presentation, Kalpana Gaikwad from the Lawyers’ Collective, HIV/AIDS Unit spoke on the HIV/AIDS Bill.
Various articles in our Constitution (14,15) guarantee that there must be no discrimination under the law on the basis of gender, religion, class or anything else. Article 16 specifies that all these forms of discrimination must not occur in the public sector. Nothing is said about the private sector and, with increasing privatisation, it is necessary to take this sector into account. Hence the need for HIV/AIDS legislation.
The history of legislation for HIV/AIDS starts in May 2002 with the International Policymakers Conference on HIV/AIDS. In 2002, the Advisory Working Group on draft legislation was formed, chaired by the project director of NACO. The Lawyers’ Collective HIV/AIDS Unit (LCHAU) was invited to draft a law on HIV/AIDS. LCHAU agreed on two conditions: the drafting must involve thorough research on national and international laws and policies; and there must be involvement of all stakeholders through consultations.
In 2003, background papers were prepared on diverse issues relating to HIV and the law; and Legislating an Epidemic was published. In 2003 the legislation was drafted on the basis of research and consultation with PLHA, marginalised populations, children, women’s groups, etc.
The framework draft legislation has the following provisions:
Substantive provisions include chapters on: discrimination, informed consent (lowering the age of consent to testing from 18 years to 12 years, and for treatment to 14 years), disclosure, access to treatment, risk reduction (people working in needle exchange programmes or condom distribution must be free to do their work), IEC, safe working environment, social security, state obligations, special provisions for women and children
Grievance redress: There must be a health ombudsperson who will address grievances immediately, there should be institutional obligations, special procedures in courts to expedite and simplify, and penalties.
Implementation: There will be implementing authorities at the national, state and district levels.
The bill is with the law ministry for two years and we are trying to push it into parliament at the earliest.
Anand Grover summed up and concluded the meeting.