In the summer of 2016, I was admitted to a private hospital for a minor surgery. The nurse had come twice in the night to draw my blood, and said there was a ‘problem’ with the earlier samples. Next morning, the doctor revealed that I had been tested positive for HIV (Human Immunodeficiency Virus) and the hospital would not be able to conduct the operation. I was quietly shifted out of the ward with a summary comment on my discharge slip — “referred to AIIMS for ART treatment”.
After multiple rounds of tests, it was established that I had HIV. For the treatment, I had to choose between a private or public health-care provider. In India, government hospitals offer standardised treatment, in line with global protocol. Government hospitals also have the best doctors and are the first to update medical procedures. Further, government hospitals offered free medicines and advice, which in the case of a private hospital would have been prohibitively expensive. With this in mind, I decided to go to All India Institute of Medical Sciences (AIIMS), India’s premier medical facility.
Importance of ART
The protocol for HIV treatment is global and standard. Once you have tested positive, the first thing doctors need to know is your CD4 cell count. CD4 cells are white blood cells that fight infection. So, HIV kills CD4 cells and hence its “count” is a measure of the spread of the virus. If the CD4 count is less than 200, then HIV has advanced to what we call full-blown AIDS.
To suppress and ultimately halt the virus, antiretrovirals, a cocktail of drugs, are employed. Although a cure for HIV has not yet been discovered, correct and timely adherence of antiretroviral therapy (ART) halts the virus, enhancing longevity and reducing chances of transmitting HIV to their partners.
Negotiating a maze
However, this straightforward treatment becomes convoluted in the Indian public health-care system. AIIMS is an extraordinary public health-care delivery institution endowed with both resources and talent. Yet, a continual stream of patients, a lack of protocol and unwelcoming staff make it one of the most difficult places to negotiate.
The HIV testing laboratory at AIIMS is one of the 13 laboratories accredited as a national research laboratory (NRL) — making it one of the best in the field. The laboratory denied me tests on two of the three occasions citing “machine failure”. On being denied the test for the second time, I researched and found that the 120-page “National Guidelines for HIV Testing”, published by the National Aids Control Organisation (NACO), details every step and protocol for the lab. Recommendations include ensuring privacy in the counselling and collection rooms, displaying the list of tests done in the laboratory and turnaround time. At India’s premier medical institution, HIV patients find that none of these steps is followed.
A 2015 study from two ART clinics in Uttar Pradesh said that out-of-pocket expenditure was “high and even catastrophic” for about a fifth of HIV/AIDS-affected households. An older study from 2007 said that people on ART spent five times more on out-of-pocket expenses than those not on ART. In most government hospitals, care is free but comes with its set of insufferable delays and constraints.
Let down
A step has been taken with the passing of the HIV and AIDS (Prevention and Control) Bill, 2017 but even after two months, one of the many important decisions of the Bill — the provision of insurance for HIV+ patients — has not been implemented. An absence of insurance cover against minor opportunistic infections would mean patients would be forced to go to already stressed government hospitals and get second-grade care because the pool of private health-care providers remains small and beyond the reach of most patients.
Over the years, I have realised that there are no champions for HIV-affected people in India. Parliament, the judiciary, civil society including media and public personalities — pillars which should spearhead this movement — are missing. Given proper health care and timely assessment, HIV-positive patients have an equal life expectancy as HIV-negative patients.
Ryan White, and a pseudonym, is a patient-activist