Serious gaps in Indian public knowledge about HIV

As India gears up implementation of national plans to fight HIV, infectious diseases experts at Johns Hopkins and elsewhere are pointing out serious gaps in public knowledge about the disease and identifying early problems in private clinics, where 70 percent of HIV-infected Indians receive their everyday medical care.

India recently surpassed South Africa as having the largest number of people infected with HIV, at 5.7 million and 5.2 million, respectively.

Only one-third of 1,667 HIV-infected men and women surveyed in Mumbai and three other Indian cities had ever heard of antiretroviral therapy, let alone understood what it was. Indeed, 19 percent of those surveyed, all of whom were patients in a mix of six public and private clinics known for treating people infected with HIV, thought that antiretrovirals were an actual cure for HIV disease instead of long-term therapy.

Results came from one of two surveys led by Hopkins researchers, where knowledge-based interviews were conducted among patients from February to June 2004. Patients came from all socioeconomic classes and ranged in age from 28 to 39.

Other findings were that 57 percent of those interviewed also had not heard of a CD4 T-cell, the body's key immune cell that fights HIV, and only one-third had ever had a CD4 T-cell count taken. Moreover, only 20 percent of those surveyed knew about viral load testing, a key measurement used to monitor disease progression, and only 11 percent had ever undergone the test.

Though only 20 percent were found to be taking antiretrovirals, researchers say, those being cared for in private clinics were four times more likely to be on the medications than those seeking treatment in public hospitals. Other key predictors for using antiretrovirals included age (1.6 times more likely for every decade older), or some knowledge of drugs (2.8 times more likely), and having had a CD4 T-cell count taken (3.7 times more likely). However, the survey also showed that cost was a key disincentive for one-third of those not yet taking the medications.

Mumbai, formerly Bombay, is considered the epicenter of India's AIDS epidemic. It is the nation's economic hub and home to its largest concentration of citizens infected with HIV.

Interview results from the second survey, which focused specifically on how well or not 279 infected men and women took their medications as prescribed, revealed that 73 percent of patients stuck closely to their drug regimens. But for those who missed taking some, reasons cited included running out of pills, traveling, forgetting, or that the pills cost too much. An additional burden, they found, was that 25 percent of those on antiretroviral drugs were also being treated for active tuberculosis.

Average spending on antiretrovirals was 30 percent to 50 percent of disposable income for survey respondents, all at three private clinics in Mumbai, with 39 percent citing cost of drugs as a strain on their household budget. The median cost was $45 per month per patient, but some received their medications for free while others paid more than $2,000 per month for the very latest drugs. Sixty-three percent of those on therapy managed to suppress viral levels to less than 400 copies per cubic milliliter of blood. Yet, 19 percent were found to be using only two antiretroviral therapies, when the typical combination therapy consists of at least three drugs. This, researchers warn, could lead to the buildup of drug resistance within the local population.

In public clinics in heavily infected regions, researchers say the financial burden is much less because antiretroviral therapy is provided by the government at no cost. However, they note, India's national plan provides free antiretrovirals only to patients in some selected public clinics, not to the vast majority being cared for privately.

According to study lead researcher, Amita Gupta, M.D., government programs to combat HIV infection will have to focus on care in private clinics as much as, if not more than, they do in public clinics because most Indians are going to the fee-for-service clinics. Gupta, an assistant professor at The Johns Hopkins University School of Medicine and deputy director of its Center for Clinical, Global Health Education, adds that solving the problems of HIV infection in India must also involve awareness-raising initiatives to educate the public about the disease, and programs to develop the skills of physicians and other local health care providers on how best to inform patients about their illness, encourage testing, promote adherence, and minimize the development of drug resistance as the epidemic spreads.

Center director and study co-author, Robert Bollinger, M.D., M.P.H., a professor at Hopkins, says development of research and education programs in India's private clinics are the next step to finding out what works best at raising public and physician awareness about correct use of antiretrovirals. He adds that future measures might also involve regulation of the private clinics and practitioners to make sure they have a basic knowledge of HIV and AIDS, plus the skills to educate their patients about the disease. Solutions may even involve licensing of those skilled to provide care for those infected, he says.

Knowledge, attitudes, and practices of HIV care and antiretroviral therapy among HIV-infected adults attending private and public clinics in India. S.B. Vaidya, S.R. Ramchandani, D.G. Saple, S.H. Mehta, V. P. Pandey, R. Vadrevu, S Rajaskearan, V.P. Bhatia, A. Chowdhary, Robert Bollinger, and Amita Gupta.

Adherence to antiretroviral therapy among Indian, HIV-infected persons seeking care in the private sector in Mumbai. B. Shah, L. Walshe, D.G. Saple, S. Mehta, J. P. Kharkar, J.P. Ramnani, Robert Bollinger, and Amita Gupta.