Something We All Know

The enormous scale and relentless pace of the HIV epidemic has fueled activists' demands for wider access to HIV treatment. Tremendous pressure exists to deliver HIV drugs quickly throughout India, where a supposedly simmering epidemic threatens to explode. For the first time, affordable therapy is almost at hand. Indian generic drug producer Cipla dropped the cost of a generic antiretroviral regimen--d4T, 3TC and nevirapine--to a record low price of $38 (1,800 rupees) a month. The equation has a major new element: political will at the highest echelons of world government, backed by money, or talk of money.

Three drugs are needed for optimal therapy, without which, the virus can easily mutate. Pharmaceutical representatives of companies like Cipla, Ranbaxy, Hetero, Aurobindo line up every Friday in doctor's offices throughout India pushing their generic anti-HIV formulation. Three drugs -- that's the gold standard. But routinely, patients who come to our referral center are on two or one drug therapy - dangerous for the patient, and worse for the community. The question is this - are the drug companies pushing dual therapy in an effort to make profits, that they would rather sell two drugs than none? If so, where is the impetus for this sort of profiteering coming from? Central offices? Or regional pharmaceutical rep offices?

A more likely explanation is that physicians are unaware of the current guidelines for therapy. The sheer volume of patients (at times we see up to thirty patients an hour at government hospitals -- two minutes a patient) makes it prohibitive to keep up with the constantly changing field of HIV medicine. The burden, then, should fall upon the medical establishment to train its own about HIV diagnosis, pathogenesis and therapeutics. Accordingly the central government's National AIDS Control Organization (NACO) has stepped in and offers a week long training to physicians throughout the country. Although a commendatory effort, the problem is that it is impossible to train physicians in a week what takes years. But more depressingly, most physicians see it as an opportunity to have a week-long all expense paid trip to Delhi and then return to their private practices to hang a certificate on their wall and charge more for their services.

Unfortunately, even if physicians are attending these programs, for the most part they have little interest in treating HIV. What we are seeing in India is similar to what occurred in the United States at the beginning of the epidemic -- stigma from the home to the hospital. Yet, even for those physicians that do have an interest, there are few quality training programs and therefore, few quality treatments centers in the country. If patients do not have faith they can be treated, they will not get tested. And if they are not tested... the cycle continues.

Furthermore, effective therapy is only a part of the equation. The staggering number of side effects and complications from HIV medicines requires a skilled physician, with sophisticated monitoring facilities. Monitoring involves closely following CD4 T-lymphocytes (the cells which HIV lives in and destroys) and viral load (the actual burden of virus in the body). By following these two markers, clinicians can understand if the drugs are working, keeping the CD4 cells (and the immune system) around, or if the virus is mutating, replicating and pushing on in its relentless destruction, making the patient susceptible to deadly opportunistic infections.

By not monitoring, there is the danger and burden to the patient. If the drugs are not working, then the patient is being exposed to side effects with no discernible benefits, and even worse, squandering their limited income on medicines that do not work. In addition, there is the danger to the community. Without proper monitoring, we face the problem which some describe as "antiretroviral anarchy." Improper use of HIV drugs will mutate the virus, spreading a more deadly, harder-to-treat form -- a disaster that would create difficulties in treating the more benign version. There is no reliable evidence that this has happened in India yet, but there are signs that this is beginning to occur.

The cost of the viral load tests cost an average of $100, excluding equipment and laboratory facilities. The cheapest flow cytometers for measuring CD4 T-cell counts cost $75,000 to $100,000, while other machines range from $40,000 to $80,000. Added to this is the additional expense of training and hiring technical staff, maintenance and repair of broken equipment, shipping and storing samples. Although we research relentlessly, the most promising technologies are still years away.

Furthermore, even as the therapy does become more accessible and cheaper, the cost of the medicine is still a hardship on most patients. In our clinic, the average patient makes Rs. 3,000 (~$60). At Rs. 1,500 a month, antiretrovirals will consume half of their income. So despite all the press of cheap drugs, they still aren't cheap enough. Instead, many of our patients have turned to "alternative" medicines. Various traditions are practiced in south India -- Ayurveda, Homeopathy and Siddha are the predominant forms. Many practitioners offer "cures" and "miraculous recovery" for a mere one-time payment of Rs. 10,000 (or sometimes Rs. 100,000 and up). Many of our patients, tempted at the prospect of cure, spend small family fortunes on these methods, and by the time they arrive to our center, are unable to afford antiretroviral medicines.

Ayurveda and homeopathy are for the most part biologically benign, but Siddha medicines contain complex formulations including heavy metals such as gold, lead and mercury. Siddha practitioners claim that they use sub-clinical doses which will not cause liver or kidney damage, but instead will boost the immune system. However, not one Siddha practitioner has allowed the medicines to be analyzed. In a recent ethnographical survey done of alternative medicine use for HIV patients in Tamil Nadu, the most common reason stated is that Allopathic physicians will steal the formulations and profit from it for themselves. The arguments made against generic companies become relevant here as well.

Siddha practitioners have integrated themselves into the government health structure to such a significant degree in Tamil Nadu, that they have been given permission to conduct experiments at Tambaram Tuberculosis Sanitorium in Chennai. Tambaram is the largest tuberculosis hospital in the world, where up to 900 patients are hospitalized daily. A growing number of these patients are HIV positive -- recent estimates have approached fifty percent. Siddha practitioners have been allowed to conduct "trials" of their medicines on patients, without any form of consent. Since patients have few places to turn for care, they kindly accept any medicines that are given to them. It is only when they come to outside referral centers do patients realize that they have been experimented on without their knowledge. We have seen patients who have lost all nerve sensations in their limbs, undergo complete skin color change, develop renal and liver failure, and even die from the medicines. And despite knowledge of this sort of unethical, state-sponsored experimentation, the Centers for Disease Control has just provided Tambaram a multi-million dollar grant for HIV epidemiology research.

This is the situation in India. We are getting cheaper drugs and yet, they are not being administered properly. Even those who get the drugs properly have limited access to proper monitoring. If patients are unable to afford allopathic therapy, or if they just do not believe in its use, they turn to alternative medicines. These medicines are far from benign, both biologically and financially. And now the government has become willing sponsors of unethical, dangerous experimentation on its own people.

What do we do next?

First, we do not have a clear understanding of how HIV is spreading. It's becoming increasingly clear that India is very much at the early stages of the epidemic, and that the infection is in small pockets of society. But strangely, though all things biological are exponential, statistics from the Indian government counter this logic -- asymptotic, ever closing in on four million, but never quite reaching it. Clearly, this is not the case, and there is a need for a better understanding of the epidemic and how it is spreading.

Next, the discussion needs to be shifted from prevention to treatment. Or more appropriately, the two need to seen as linked. Without proper treatment, we know that prevention efforts will fail. Yet a majority of the money spent in India is on prevention, neglecting to address the needs of those already infected.

Finally, there are amazing examples of high quality, compassionate care in both the government and non-government sectors. These care models need to be replicated throughout the country. However, building health infrastructure is not as glorious as fighting for drugs for the poor.

Despite what is projected in the media, India is still at the very beginning stages of this epidemic. But it is not far until this becomes one of the worst challenges in India's history.


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