HIV positive? Pay for it, says the State

Subsidised first-line ART (antiretroviral therapy) costs about Rs 1,000 a month. Critical second-line treatment costs between four to 12 times more, an expense patients must bear themselves.

According to UNAIDS, India has the largest number of HIV-AIDS cases in the world. What is less well-known is that the country also hosts the largest generic antiretroviral drug industry, providing life-saving medications to half the HIV-AIDS patients in the developing world. But, strangely, the growing army of Indian HIV-positive people remains grossly untreated or only partially treated, which can be just as fatal.

Out of the 500,000 people now needing permanent, reliable antiretroviral therapy throughout India, only 7 per cent have access to these drugs. Without ARTs, at least 20 per cent of people in the advanced stages of AIDS in developing countries, including India, will die each year of opportunistic infections. UNAIDS estimates 100,000 Indians died of AIDS in 2005. Less than a year later, 20,000 Indian AIDS patients are dying every month.

That’s reason enough for concern. But the worry has not translated into action. The apathy this reflects is a far greater cause for concern than the virus itself, say activists and patients alike.

HIV is not curable, but it is manageable. HIV-positive people, if properly treated, can lead normal lives for over 20 years. Previously, treating the disease primarily meant treating opportunistic infections brought on by the virus’ gradual assault on the immune system. The ART breakthrough occurred in the late 1980s. ART drugs slow down the disease progression, and in the process also assist in resuscitating the immune system.

Unfortunately, patients develop immunity or resistance to ART drug regimens, which means that the drugs have to be periodically changed to ensure that they remain effective. This creates an ongoing need for second- and third-line ART drugs as part of any comprehensive AIDS treatment planning and resource budgeting.

In other countries, where governments are more vigilant about the needs of HIV-AIDS patients, access and affordability are now minor issues. Switching from one line of treatment to another also occurs effortlessly so as to allow the treatments to remain effective. But this is not the case in India.

The Government of India, through the National AIDS Control Organisation (NACO), which subsidises HIV medication, only provides first-line ARTs. Once patients develop immunities to these treatments, they have to fund the expensive second-line treatments privately. People with deep pockets manage while others have had to sell their property, houses and valuables to finance their medication. For the majority of Indian AIDS patients, their inevitable immunity to first-line ARTs could spell the end of the road.

The numbers are telling: an HIV-positive Indian shells out about Rs 1,000 to Rs 1,200 a month on first-line ARTs. The cost of second-line treatments are between four to six times higher, sometimes as much as 12 times higher.

“The government has failed,” says Richard Stern of the Agua Buena Human Rights Association. “It’s only in India that this kind of segregation of treatment supplies exists. Even countries poorer than India, such as Honduras, Guatemala, El Salvador, and Rwanda, to name a few, provide comprehensive treatment. They provide second-line ARTs and often pay drug prices much higher than those for the same drugs in India. I think it is a simple case of lack of political will and application.”

Ironically, it was an Indian company, Cipla, which ensured widespread access to AIDS drugs by producing generic ARTs that lead to drug prices being slashed throughout the world. The quantum impact Cipla’s generic ART versions have had on the costs of treating AIDS is nothing short of a revolution.

There was a time when ARTs were not even available in India. With Indian-produced generic ART versions, treatment costs have come down to $240 a person per year, less than a dollar a day per person. An estimated 350,000 people using ARTs worldwide depend on Indian generic production - that's half of all those on ARTs in developing countries. Nor has the quality of these medicines ever been an issue as they undergo quality tests as stringent as those on patented drugs produced by big pharma companies.

“This makes the government’s refusal to purchase these second-line medicines for the National AIDS Program rather nonsensical, despite the fact that India has a robust local generic production capacity and has companies that are already producing most second-line antiretroviral drugs in India at this time,” says Loon Gangte an HIV-positive activist fighting to ensure reliable access to essential medicine.

“I am not so hurt by the fact that I have AIDS, that I am terminally ill,” says Raju Shekhar (name changed). “It feels worse when you know a lot more can be done to fight the disease but the government is just not bothered to help.” Shekhar’s condition has deteriorated significantly over the past three months because he cannot afford second-line treatment.

“I had to sell my house to ensure that my second-line treatment could continue,” says Delhi-based Hari Singh. “I had the option. Hundreds I know did not. And they are dead. What is the government doing about it? Do HIV-positive patients not have the right to live?”

NACO’s response to Stern’s questions is that budgetary constraints are the reason for not providing second-line treatment through government channels. But, Stern points out, “NACO has approximately $77 million to facilitate drug access for HIV-positive people, but they have spent only about 4 per cent of this money. And none of this money has come from the government exchequer. It’s been provided by global donors. They (NACO) are not ready to spend a penny.”

International agencies and donors include the Bill and Melinda Gates Foundation, UNAIDS, the World Bank and the Clinton HIV-AIDS Initiative.

“There are certain second line drugs that are supplied in India by Cipla at four times the cost that is charged in the other, less-developed countries it exports to,” says Stern. “They are doing it because they know they will get this kind of money here. Why is the government not asking them to reduce prices?”

Experience shows that price negotiations by bulk ART buyers can bring down the prices. In a significant first, Médecins Sans Frontières in 2001 successfully renegotiated the cost of an ART originally priced at $10,439 in the international market down to $350.

“The government being the bulk buyer can effectively negotiate price reduction,” says Leena Menghaney, project manager, Campaign for Access to Essential Medicines. “Nearly 40 per cent of the cost of the drugs is due to packaging and marketing. That’s not applicable to the bulk buyer.” Gangte wants to know: “If Bill Clinton can negotiate a price cut (for ARTs for children) why can’t the government of India? Especially when India will have far greater leverage with pharmaceutical companies because it’s a bulk buyer.”

“There cannot be any justification for people dying for want of treatment here in the hub of the production of generic ART drugs,” says Singh. “Positive people also have the right to live. It is a simple case of absence of political will.” Someone somewhere has got to take note.