How shortages of antiretroviral therapies could jeopardize India’s race to eradicate AIDS.
World AIDS Day in 2011 marked the launch of the UNAIDS campaign “Getting to Zero” with a bold call for zero new HIV infections, zero AIDS-related discrimination, and zero AIDS-related deaths by 2015. As we approach 2015 we should indeed celebrate the great strides the world has made in the battle against HIV/AIDS in each of these three arenas—but we must also acknowledge that much work remains to address the grave inequalities of access to HIV/AIDS prevention, treatment, and care and support services worldwide. This year’s World AIDS Day theme of “Close the Gap” signals the UN’s commitment to enabling all people, everywhere, to access the services they need—a message particularly salient for India, as the country struggles to make crucial treatments widely available.
“Close the Gap” signals the UN’s commitment to enabling all people, everywhere, to access the services they need.
With approximately 2.1 million people living with HIV/AIDS, India has the third largest HIV-positive population worldwide. Whereas global health experts prophesized doomsday scenarios about India’s AIDS epidemic at the beginning of the 21st century, today they tout India as a success story. Indeed India’s record in reining in this epidemic is commendable. India witnessed a 57% decline in new HIV infections between 2000 and 2011; a 38% decline in AIDS-related deaths between 2005 and 2013; and it now has a relatively low adult HIV prevalence rate of 0.3% (compared to Swaziland’s 26.5% and to the United States’ 0.6%).
The development of generic antiretroviral therapies (ARTs) became a key factor in curbing the HIV/AIDS epidemic both in India and globally. Indian pharmaceutical company, Cipla slashed the cost of ARTs by 97% in 2001 making it possible for India to roll out a free ART program at the end of 2004, a program that has become a lifeline for over 750,000 people who now qualify for it. But today the program is struggling: acute shortages and stock-outs of drugs at government-run ART centers have led to growing outrage from people living with HIV/AIDS who have come to rely on the treatment.
Glitches are not new to the program; a WHO report in 2012 stated that the program was only reaching 50% of those patients who would qualify for it. But in recent months patients who had previously received drugs have been reporting unprecedented shortages. Rather than being given the mandated thirty day supply of drugs, patients in some districts must now travel long distances to reach the dispensaries only to be given three or four days’ worth of medication and told to return again and again for additional small supplies. Many forgo their daily wage simply to procure each meager installment of their medication. Some are forced to return home empty-handed, resulting in missed doses, which not only imperils their own health, but also fosters a ripe environment for the emergence of more drug-resistant strains of HIV. Those affected are calling India’s commitment to “Getting to Zero” a farce. As complaints have mounted, people living with HIV/AIDS have organized and in early October the HIV/AIDS branch of the Lawyer’s Collective sent a legal notice to the Ministry of Health and Family Welfare demanding a fix to this problem.
I witnessed what it meant to be poor and HIV-positive in India in 2004 before the government rolled out its subsidized ART program. I was conducting research on HIV-positive women’s experiences during pregnancy, childbirth, and early motherhood. The government of India and UNICEF had launched a new program to prevent HIV transmission from mother-to-child. Pregnant women who were diagnosed HIV-positive through this program had to make hard decisions about whether to continue with the birth, believing then that ARTs would not be available to them and that they would most likely not live to see their children grow up. Lack of access to ARTs made HIV/AIDS an intensely stigmatized disease and dissuaded people from undergoing HIV testing. When women tested positive during their pregnancy, sometimes their husbands would refuse to be tested and husbands and in-laws would accuse these women of being promiscuous and blame them for bringing this disease into the family. In some cases this stigma was so severe that women were thrown out of the household and had to resort to sex work for survival, potentially furthering the spread of HIV.
In those days reports of healthcare workers refusing to treat HIV-positive patients in hospitals were common. I met one woman who was refused entry into a hospital when she arrived in the throes of labor and was referred out to another hospital which she had to reach by foot and where she kept her HIV status secret to avoid being turned away. The entire medical staff left another woman and her mother alone during childbirth in a remote rural hospital in the middle of the night. Several HIV-positive women became widows while they were still pregnant due to lack of affordable ARTs for their husbands. Unable to provide for their children, some of these widows had no option but to place their children in orphanages.
HIV/AIDS remains a stigmatized disease in India today but on my follow-up research visits, the most recent of which was in 2013, it has been clear that the stigma has lessened substantially over time due in large part to the availability of ARTs. As treatment became available and stigma decreased, more people have come forward for testing. Increased awareness of people’s HIV-positive status has helped prevention efforts to reduce HIV transmission and ARTs have been responsible for the dramatic reduction in AIDS-related deaths in India.
While India’s National AIDS Control Organization (NACO) has incurred much of the ire over the ARTs shortages, there is plenty of blame to go around. Central government agencies blame individual states for mismanagement and accuse some Indian drug companies, including Cipla, for pulling out of the bidding process thereby reducing the supply within India. Drug companies blame the government for late payments. Patients blame rampant corruption within the supply chain of India’s healthcare system. Whatever other progress India has made in combatting AIDS, these recent setbacks in making ARTs widely available could jeopardize India’s race to eradicate the disease.
The progress India has made in combatting AIDS must not lead to complacency. India must not turn back the clock to the pre-2004 days of AIDS-related stigma and escalation in HIV transmission when ARTs were not available. If India is to remain exemplary in the global fight against HIV/AIDS, it must demonstrate a commitment to “Closing the Gap.” One way it can do this is to swiftly resolve the dire problem of ART shortages and stock-outs that only serve to widen the gap between those with access to treatment and care and those without—a gap that threatens to reverse the gains made towards “Getting to Zero.”