When I spoke to Manu alone, he denied ever having sexual relations with anyone other than his wife; he pulled out pictures of his kids aged 4 and 7 to show me; he also claimed that he had had a blood transfusion at a small local hospital near his village some years ago. He thought that could have been the cause of his HIV infection. Nobody ever admits to having extra- or pre-marital sex, I thought cynically.
He had been diagnosed with HIV in Feb 2016, when he had gone to the government hospital after weeks of illness, inability to eat and a visible weight loss. His CD4 count was 25 at the time (normal is about 800-1200 cells/uL of blood). He was also diagnosed with TB at the same time. He had lost 20kgs of weight; from 65 a few months prior to 45kg in Feb 2016.
The doctors started all the medications, controlled the side effects as well an opportunistic infection of Herpes, but in Dec of the same year, his weight had reduced even further to 32 kgs; his CD4 count was 11. Clearly, something was not working.
In Feb 2017, one of the doctors who works with us recommended that he check if the virus was resistant to the drugs. Hence, Manu, his wife and mother made the trip from Ramanagara, a town about 2 hours from Bangalore to our clinic. The taxi that they had ordered for the trip left them about a block away from the clinic, for some reason, and I watched him shuffle very slowly the one block to the clinic. His cheeks were sunken, his voice was weak. This was a very sick man.
I walked them through the steps of the test. I told them why his doctor had recommended it and what information they would receive. They were all so thankful.
Most HIV+ people, in my rather limited experience, love to talk to a clinician or even a diagnostician. They want to understand what is going on, they want information and they are hungry for reassurance. It did not matter to them that I was not a medical doctor. They were grateful for my time, my attention, just as I was grateful to them, for talking to me, for explaining their story. I was grateful for the chance to put a face and a story to the blood tube. And I was humbled by the reminder of how crucially relevant these tests are.
I should also mention here that Manu was the FIRST patient on whom we were doing the drug resistance genotype. We had established our lab in Jan 2017 and while I was confident that I could amplify and genotype his sequences, given my doctorate experience, I had never before done it yet in India. But Manu had been sent to me because I was offering this test at less than half the market price. In most standard labs, this test costs Rs. 15,000. I was offering it for Rs. 6000, just enough to make up the cost of the reagents and rental on the machines that I would be using.
I actually mentioned this to Manu and told him, keep the 6k. Let me get the results first and then you can pay me. He immediately said, "No Madam. Please. You will be doing the work. You should be paid for that work. And I may not have the 6000 rupees afterwards".
Thus, Manu's sample became the first of many successful drug resistance genotyping tests conducted by our lab. We found his virus to contain the M184V, K65R, L100I and K103N mutations; mutations that confer high level resistance to nearly all the anti HIV drugs that he was currently on (Tenofovir, Emtricitabine, Efavirenz)
The doctors changed his regimen (and how they did so is a whole different story. The Indian government does not accept drug resistance genotyping reports from private labs as evidence to switch medications for a patient. At the same time, there are no government labs that offer this test). Through multiple letters and phone calls, the doctors convinced the government ART office to switch his medications to ZLA/r (Zidovudine, Lamivudine, Atazanavir/ritonavir).
Later on, I heard from other doctors about the uncontrolled number of blood transfusions that occur in many private hospitals. Many HIV doctors also mentioned that a lot of patients reported having blood transfusions before they were diagnosed to be HIV+. So I wonder, maybe Manu was right about how he was infected.
Manu never really recovered though. In May I learned that he had actually gained some weight (about a kg) and cheered. But he was in and out of hospitals and then, yesterday, I got the news that he died.
It pained me even more when the doctor said, some patients are too far gone by the time they start their medications. Nothing you can do can get them back from the brink.
I pray for his wife. She too is positive, but thankfully their kids are not. But how will she be treated if it comes out that he died of AIDS?
This is the unfortunate, stark reality of HIV in our country. We may have the world’s largest free ART distribution program, but the stigma of HIV still looms as large as it ever did. This same stigma is the reason why men do not get tested for HIV early enough and why most people fear coming to the hospital until it is too late. Interestingly enough, most women get diagnosed with HIV sooner, when they are healthy and before they reach the stage of AIDS. This is because of mandatory HIV testing during the antenatal period for all women, a clear vindication of universal screening.
The other problem is that of monitoring. CD4 cell count based monitoring is not an optimal measure of detecting treatment failure and drug resistance in HIV. The standard of care, as recommended by the WHO, is that all patients found to be HIV+ get a baseline viral load and drug resistance genotyping to check if they have been infected with a resistant form of the virus. Viral load tests are also recommended twice a year to monitor for adherence and early detection of resistance. In the current scenario, by the time a patient on ART is found to be drug resistant and his medications switched, the patient is so close to death that it is unlikely that he can survive without extensive ongoing medical help.
And finally, HIV in India suffers from a dearth of research. There are but a handful of studies describing the emergence of drug resistant virus in India; with only a few laboratories in the country working on Subtype C HIV, the type found in our country, that differs in virulence from Subtype B, found in Western Europe and Northern America and on which the most research has been done.
Stories like Manu’s are all too common. With the nature of HIV undergoing a slow change from an acute disease that kills to a chronic disease that people have to learn to live with, a shift needs to occur from running centers that primarily rollout ART to delivering the full gamut of preventive and health promotional services in a non-judgemental and sensitive manner.
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