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What has Changed for People Living with HIV?

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By Ranjita Biswas
Many experts feel that it’s time we moved beyond HIV/AIDS awareness campaigns and began seriously tackling the practical considerations of getting medicines to patients. Awareness is important, but it’s useless if we cannot provide the medicines.

It’s been 21 years since India’s first HIV cases were diagnosed among sex workers in Chennai, Tamil Nadu, in 1986. And exactly two decades since the National AIDS Control Programme, now NACO, was launched. Since then, India has been in the news for its rising HIV/AIDS graph, although NACO has hotly debated the number (5.4 million) projected by international agencies. This year, 2007, using a more effective surveillance system, UNAIDS and NACO agreed on a new estimate – there are between 2 million and 3.6 million people living with HIV in India, placing the country behind South Africa and Nigeria.

A doctor treats a positive person at home A doctor treats a positive person at home
While experiencing relief and even a little elation at this scaling down of numbers, there is also apprehension that some of the real issues may be overshadowed. For example, have things changed over the years for people living with HIV? What about treatment? Are affected people getting adequate support from the government and NGOs working in the area? Why is there still so much stigma and discrimination even among the medical fraternity, let alone the general public, when crores of rupees have been spent on awareness campaigns? Are these problems being addressed? If not, what are the hurdles in the way of change?

It’s best to listen to people who have firsthand experience through their work in the field.

Treatment and availability
Dr Jack Preger, who founded the healthcare NGO Calcutta Rescue and is often referred to as the ‘Footpath doctor’ (that’s how he began treating the poorest of the poor – on the footpaths of Kolkata), also heads the only centre in West Bengal that provides second–line ARVs free of cost. Patients are referred to him by the School of Tropical Medicine (STM) and Calcutta Medical College and Hospital. Both provide first–line ARVs to affected people from the vast hinterland of districts in West Bengal.

Whilst admitting that there has been a definite change from the old days, in that many more people now receive free treatment, Preger highlights the problems patients face in receiving medication: “To get free medicines, patients have to produce a below the poverty line (BPL) certificate endorsed by the local panchayat. This has some inherent problems; plus, many of them are not actually from the BPL segment.” Another problem is the distances patients have to travel from village to city to get medicines. For some, because of logistical and other reasons, there is a gap in treatment, which could lead to them developing resistance to the medicine.

Tarit Chakraborty, Regional Coordinator, Indian Network of Positive People (INP+) and President of the Bengal Network of Positive People (BNP+) (West Bengal), which has around 4,000 members, also believes there are many gaps in access to treatment, although the situation is better today compared to a few years ago. People are getting medicines, or they are available in the market to those who can afford to buy them. But quality treatment is still missing. “It’s not available at an easy access point,” he says, adding that many patients are daily wage earners who cannot afford to miss out on a day’s wages, not to mention the travel costs. They also have to pay for certain clinical tests. These “hidden costs” sometimes dissuade an infected person from taking treatment. “Why aren’t medicines made available at the district hospital or even at primary health centres,” asks Chakraborty.

Dr Santanu K Triparthi, head of the department of pharmacology, Nil Ratan Sarkar Medical College and Hospital in Kolkata, agrees: “We should look more at ways of providing medicines at easily accessible places, rather than expect them (patients) to travel all the way (for them). This can be done only at the government level. It (the government) should take the initiative to clearly identify to what level the agency can provide ARVs and then formulate a public–private partnership strategy with achievable goals. It’s time that we talked about the practical considerations of getting medicines to patients, and move beyond awareness campaigns. Awareness is important, but it’s useless if we cannot provide the medicines.”

Divya Mithel, a grassroots worker for PLHAs (people living with HIV/AIDS) in Raigad, Maharashtra, believes there have been some positive changes in the treatment regime. “The government centres are trying their best to get as many AIDS patients under the ARV umbrella, which is causing them (patients) to live longer. Women who are registered at antenatal clinics are getting the maximum benefit in terms of prevention of vertical transmission. In the last one year, children have started getting free ARVs from the government centres. Prophylactic drugs have reduced the incidence and severity of opportunistic infections.”

But, says Mithel: “All the pharmaceutical companies making and marketing ARV drugs are pushing them on a war footing in the open market. There’s nothing wrong with that, but ARVs are being prescribed by every medical practitioner without a thought as to whether the patient is financially ‘Fit’ to prescribe these drugs to, let alone whether the doctor is ‘fit’ to prescribe the drugs.”

“Not many doctors/family physicians know the correct regimen and side effects of these drugs. Our centre gets a lot of patients who are on an incorrect regimen,” says Mithel.

Indrani Sinha, Founder Secretary, SANLAAP, an NGO in Kolkata that works with trafficking and women’s health issues, says: “It (treatment) is not enough, and the people providing the service are not aware; they suffer from ignorance much more than many.”

Pawan Dhall, Director, SAATHI, Kolkata, another NGO, concedes that NACO has set up a good protocol for Phase III, following WHO guidelines, but that “it’s half–hearted on the aspect of providing second–line ARVs. NACO’s stand seems to be to reach a target of 100,000 people receiving first–line ARVs and then starting with the second line”. He draws attention to NACO head Sujatha Rao’s comment of a while ago that prevention was the priority now. “But what about the people who are already affected? What about their treatment? It sends a wrong signal to those people.”

As one providing second–line ARVs, Jack Preger has certain views that may be considered controversial: “It’s expensive; a patient’s monthly bill can go up to Rs 2.6 lakh per month. We raise the funds ourselves from our well–wishers abroad; we don’t take any money from the government. But I am finding it increasingly difficult to raise the money… It’s unfortunate that though there are so many NGOs working in the field of HIV/AIDS care, they mostly concentrate on counselling and other services. While these are important, one must make medicines available to patients. Many of these NGOs have huge funds but they don’t think of setting aside some funds for second–line ARVs.”

Preger’s bitterness is apparent when he says that he has, of late, refused patients referred to him by some NGOs, as they have sufficient funds to provide for the patients. “There are more needy people; they don’t have any other means of getting treatment.”

Stigma and discrimination
A 2006 UNDP study (‘The Socio Economic Impact of HIV and AIDS in India’) found that 25% of people living with HIV in India were refused medical treatment on the basis of their HIV–positive status. Evidence of stigma was rampant in the workplace, with 74% of employees not disclosing their status to their employers for fear of being discriminated against. Of the 26% who did disclose their status, 10% reported having faced prejudice as a result. It is more pronounced among people in marginalised groups: female sex workers, hijras (transgenders) and gay men are often stigmatised not only because of their HIV status but also because they belong to socially excluded groups.

According to Preger, the stigma is very much there still. “I know of a 15–year–old boy from a BPL family who became HIV–positive due to infected blood transfusion. He can’t go to the STM to collect his medicine because if anyone recognises him he’ll have a problem staying enrolled in school. His parents know this. So his father goes to the STM instead.”

Dhall corroborates this point: “There’s been some change at the micro level but on the whole there’s not been much change. Superficially, perhaps also because of political correctness, people express their awareness and acceptance, but there are so many instances where patients have faced discrimination. It’s happening even at government hospitals in Kolkata; one wonders if all the money spent on sensitising healthcare professionals has gone to waste.”

Mithel too believes levels of stigma and discrimination from close relatives and society remain high. “All, and I insist all, government hospitals and even private medical colleges, with their high–tech hospitals and trained staff, refuse to operate or do the necessary invasive procedures. The victim and his relatives are made to run from one centre to another in the hope of intervention until the case deteriorates so badly that it becomes inoperable, or the relatives abandon the victim, or the victim himself gives up.”

Chakraborty agrees: “These days, due to sensitising programmes and perhaps for fear of getting castigated, there may be less direct discrimination. But there’s indirect discrimination. Often when an HIV–positive person is sent for surgery to a hospital that has all the facilities, and his/her HIV status is mentioned, the staff say that the hospital does not have the necessary facilities. Then there are cases where a person is shifted from one hospital to another, on some pretext or the other, and ultimately doesn’t get treated at all. Or, the doctor may cooperate but Group D staff may not, once the HIV status of the patient is known.”

According to Dhall, there could be other instances like these that have not yet come to light. Last year, a peer educator from Manas Bangla, a network of NGOs working mainly with MSMs, in Kolkata, was denied surgical treatment and turned away by Nil Ratan Sarkar Medical College, a government hospital in the heart of the city, when he developed HIV–related complications. Ultimately, he committed suicide.

The activist throws light on a lesser known fact about discrimination within the HIV–positive community. “There’s this idea of ‘Good HIV’ and ‘Bad–HIV’ – the former is contracting the disease by blood transfusion, or it being sexually transmitted by a spouse/partner, etc. ‘Bad HIV’ is contracted through risky behaviour or ‘Dirty sex’. Many PLHA organisations, for example, do not invite positive members from sex worker groups, or even MSMs, to their meetings because of this. So, the whole idea of correlating HIV and sex, still a taboo subject for most people, needs to be addressed upfront,” he says.

Chakraborty agrees that this kind of discrimination exists. “A housewife who contracts the virus through her husband would not like to associate with a positive CSW.”

Counselling
Counselling has an important part to play in the campaign against HIV/AIDS. Says Sinha: “The fear about AIDS exists due to ignorance, and a lot needs to be done. Vulnerable families need to know much more. Proper counselling services should be provided at every level; this is not being done. In cases of trafficking, we have seen that it happens to illiterate and poor families and it is very difficult to explain such things to people who have had no education.”

Chakraborty points out that what is important is “quality” counselling. “A patient is more comfortable with counsellors who empathise with them.” He believes the number of peer counsellors should be increased. “From our experience we have seen that it’s more difficult to convince so–called educated people in urban areas than villagers. In rural areas, people do not have enough information, so they are ignorant. But once you make them understand and explain things to them they are more willing to accept a person who is HIV–positive.” As an example, Chakraborty reveals an instance where a woman from Arambagh area who contacted the virus from her husband was put almost under house arrest when people learned of her status. The Network’s Hooghly district representatives went to the village and had a meeting with panchayat members and the community who said they had acted that way because they did not know much about the disease; they subsequently lifted the ban on the woman, who has since died.

The Hurdles
Different people react differently to the point about hurdles in the fight against HIV/AIDS. For example, Preger has reservations about the method of the sample survey. While the scaled–down number of people affected by HIV/AIDS in India is a good sign, he says: “Sample surveys may have unrepresented sections. How many people really go door–to door? Even if they do, do they get the correct information? Usually, they visit households during the day; as we know, most householders are at work during the day. The second question is about confidentiality, especially when stigma is so rampant. Will a householder talk openly about his status in a close community?”

“As per my experience, the level of information about HIV and treatment has surely gone up for positive people, but information should be there for everyone, which has not happened,” says Sinha. Since “each and every one of us is vulnerable to HIV” people should have access to proper information and assistance if needed. “This goal is yet to be achieved.”

Mithel encounters many young girls and women who are married to “HIV–positive crooks” because the men marry without disclosing their positive status. After the death of their husbands, these unfortunate widows are thrown out of their homes and lose their property and their inheritance, sometimes even their children. “Even if these victims do manage to get help from ART centres or shelter homes like ours, their rehabilitation remains a massive unresolved problem.”

Even when HIV–positive patients stabilise with proper ARV treatment, where do they go? Their relatives do not want to keep them, and their employers don’t want to take them back.

“This group, which is the newest face of all our efforts in fighting the disease, is totally ignored by the policymakers. There are no more than two to three shelter homes that can keep such people for, say, a few days, a few months, or even years. But how long can they be kept here?” Many of Mithel’s patients want to go back to begging, prostitution and drugs, not by choice but because there is no other alternative.

She points out that there has been no funding, by NACO or State AIDS Control Societies (SACS), for institutionalised centres that are at least making some efforts in this direction. Due to lack of adequate support and funds, these centres are desperately trying to survive against all the odds; their struggle has dissuaded a lot of people from venturing into the area of palliative care and support.

Dhall adds that the government’s health budget is woefully inadequate. “Look at our defence budget –– it keeps increasing every year. Health does not seem to be a priority.”

When Preger is asked why if Brazil can provide universal treatment for HIV/AIDS, India, which produces some of the cheapest generic medicines for HIV, cannot do the same, he says: “Look at their budget and ours. India’s proportion of the budget for health is pathetically low. Of late, the budget has been enhanced somewhat, but the major portion is spent on administrative and other departments, leaving little for medicine and care.”

Joanne Csete, director of the HIV/AIDS programme at Human Rights Watch once observed: “It is a sad irony that India is one of the biggest producers of the drugs that have transformed the lives of people with AIDS in wealthy countries. But for millions of Indians, access to these medicines is a distant dream.”

The road ahead
So, what can be done to ensure that HIV/AIDS patients in India get better care? Dhall is emphatic that civil society has to come together to force the government to provide the necessary care and support to HIV–positive people. “One can recall the instance of ACT–UP (AIDS Coalition to Unleash Power) of the ’80s in the US that aimed at fighting government apathy towards gay civil rights. It was hugely successful.” ACT–UP and other groups organised hundreds of civil disobedience actions across the country, focusing not only on AIDS but on the increasing climate of homophobia and attacks on lesbians and gay men.

Through their activism, and using the media and other sources, the civil disobedience actions brought the AIDS care issue to the forefront. Dhall says: “We are not equipped to do something on the medical side of the disease, but we can raise the issue through concerted action.” For example, NACO’s Phase III programme “is good, but it’s the responsibility of civil society to see that the government delivers”.

Sinha says: “The problem is being addressed, but mostly by civil society groups and not the government.”

According to Dhall, good practices must be replicated by others in the field. For example in Tamil Nadu, compared to West Bengal, reproductive rights, sexual behaviour and sexuality are discussed more openly, and there is greater awareness and action. He uses some of SAATHI’s (Chennai) flip–charts in his office in Kolkata.

Dhall believes that sex education in schools, even for adults, is a must. “They can be planned age–wise, culture–specific–wise, etc. Even parents need counselling. Denying its introduction in schools puts the vulnerable young population at risk.”

Why don’t NGOs bond as a network to tackle some of these vital issues? In Kolkata, some effort has been made through the Treatment Action Campaign (TAC) in West Bengal, initiated by BNP+ and positive people’s organisations and NGOs. “We need to start a coalition–based campaign to ensure that treatment is made available to those in need. The government must make us partners, and civil society has to come together,” says Dhall.

Chakraborty agrees that a collaborative network is a good idea. He refers to GIPA (Greater Involvement of People Living with HIV/AIDS), which was adopted as a principle at the Paris AIDS Summit in 1994, by saying that the personal experiences of positive people could and should be translated into helping shape a response to the AIDS epidemic.

Meanwhile, NACO’s immediate task, says Chakraborty, should be to provide second–line ARV treatment. “So much money is spent on prevention; some of it should be spent on positive prevention too, that is, focus on people who are into needle–sharing or into other risky behaviour.”

He also suggests that images of positive people be used in ad campaigns (if they are willing). In West Bengal, the WBSAPC Buladi campaign that uses an understanding woman–next–door image to send a safe sex message is extremely popular. “That’s fine, but I feel that if a positive person had said, ‘Yes, I am a positive person but I lead a normal life, I am not sick or dying’, it would have cleared away misconceptions about the disease more effectively.”

Clearly, there are a number of grey areas that need to be stressed and addressed in the country’s fight against HIV/AIDS.

(Ranjita Biswas is a journalist based in Kolkata writing mainly on women and gender issues, HIV/AIDS and environment. She is also Editor of Trans World Features).

InfoChange News & Features, January 2008
Source: infochangeindia.org

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