In April this year, the National AIDS Control Organisation (NACO), which implements the government's AIDS programme, announced it would introduce free second-line Antiretroviral Therapy (ART) to People Living with HIV/AIDS (PLHAs) by January 2008. However, even before positive networks could rejoice, the news that this would begin only after NACO was able to provide first-line ART to 100,000 PLHAs dashed all their hopes.
"How much longer will people who have experienced failure with the first-line drugs and need to move to second-line ART have to wait before they are given treatment? The virus will not wait till NACO meets its goal (providing first-line ART to 100,000 PLHAs). Imposing a condition like this is tantamount to denying them second-line ART," says Elango Ramchander, President, Indian Network of People Living with HIV (INP+).
Over 500 PLHAs and activists will gather in the Capital to articulate their dismay during the Global AIDS Week of Action, beginning May 20. They have planned to hold a candlelight march to pay tribute to those PLHAs who have passed away, followed by a rally and an awareness camp to underline the urgency of universal access.
So far, 4,907 PLHAs have succumbed to AIDS-related illnesses since 2004, when the government first introduced free ART. Positive networks believe the non-availability of second-line ART may have been the cause of these deaths.
Although there is no conclusive data at present on the number of PLHAs who need second-line ART, INP+ believes that about three per cent of those on ART (about 3,500 PLHAS) would require second-line treatment by the end of 2007.
Just how many of these would be women may be hard to say, but considering their vulnerabilities, women will be the worst hit by the non-availability of second-line treatment.
What is worrying positive networks is the recent revelation by the World Health Organization (WHO) that one of the health consequences of HIV drug resistance could include failure or reduction of the efficacy of antiretroviral drugs in preventing mother-to-child transmission. "Positive women are already traumatised by stigma and discrimination. A woman is always the last to seek treatment. Denying her the proper treatment she requires, especially if she has decided to have a baby, is as good as telling her that neither she nor her baby deserves to live. It is a violation of our rights," contends Kousalyaa, President, Positive Women Network.
"There are many women who will need second-line treatment immediately. Can we tell them to wait?" she asks. Some of these women who live in Tamil Nadu, however, are lucky: they don't have to wait. This is because the UK-based NGO, Children Investment Foundation, provides funds to the state AIDS control society to provide ART, including second-line drugs, to 1,000 PLHAs.
The other not-so-lucky ones will have to buy the second-line drugs if they want to survive, says Celina D'Costa, National Advocacy Officer, INP+. "Everyone, including the government, knows that once a person is on ART, s/he cannot stop midway. The treatment has to be life long. So, even if the drugs are expensive, they will have to be bought. In a resource-scarce situation, it is the women who will suffer because the money will go to buy it [ART] for the men or for the children. In this context, it is imperative for the government to begin free second- line ART immediately. It must be given as and when it is needed and not when
the government thinks fit," D'Costa avers.
However, NACO does not feel the same way. According to Sujatha Rao, its Director-General, the decision to provide first-line treatment to positive people first was a conscious choice as it was affordable and cheaper to provide. The government would need greater investment and infrastructure to introduce second-line treatment, she says.
While positive networks agree that greater investment is required, they feel that it is possible to overcome these financial obstacles. This is why INP+ commissioned the Delhi-based Initiative for Medicines, Access and Knowledge (I-MAK) to address the feasibility of introducing second-line ART by the government.
The study, conducted in 2006, found that of the estimated 5.2 million people living with HIV, approximately 85,000 PLHAs are on ART. More importantly, 62,317 of these are receiving ART through government ART centres. These numbers do not just underline the dependence of PLHAs on the government, but also highlight how critical the government's role is in ensuring both first- and second-line treatment.
The I-MAK study finds that NACO can bring down the cost of providing second- line ART: First, by recommending waiver of duties and taxes on HIV drugs; and second, NACO can overcome patent barriers by procuring second-line drugs prior to patenting and issuing licences in the event of patenting. More importantly, if NACO achieves its targets of scaling up ART overall, the approximate cost over five years would be US $19 million and not US $70 million as calculated by NACO. Out of this, NACO's share would be US $14 million, as both UNITAID and the Clinton Foundation have already committed to cover the cost for two years.
However, the government has still not given the programme the financial importance it deserves. Although it has allocated Rs 1,334 crore (US$ 302.6 million) for the third phase of the National AIDS Control Programme for ART, it has not deemed it necessary or important to allocate any specific budget for second-line ART, says Priti Radhakrishnan of I-MAK and author of the study.
"The government talks about removing stigma and discrimination; it is a signatory to the United Nations' promise to provide universal access to treatment, care and support. Yet, its decision to wait before providing free second-line ART is the biggest form of discrimination. We cannot let our friends die because second-line ART is not seen as a priority by the government," contends Loon Gangte of INP+.
"Recent research by WHO has shown that ART reduces that incidence of opportunistic infections which, in turn, decreases both morbidity and mortality. The fact that many HIV+ have died because treatment was not available when it could have been given is really shocking. This is especially so when UNITAID and the Clinton Foundation have already offered to fund the first two years of second- line ART," states Ramchander.
However, NACO has yet to accept the offer made by the two international donors. Rao feels that since it would take four or five years before the three to four per cent of people who take ART drugs develop resistance to the first-line drugs, they would consider taking money from international donors at that stage.
Clearly, NACO does not believe that this stage has already come. The longer it continues to remain in denial, the greater will be PLHAs' risk of drug resistance. This, in turn, will mean a higher number of those needing second-line ART. Positive networks are hoping that just like NACO has a target for introducing first- line ART, it will not need a `target of deaths' to awaken the government from its stupor.