The patient is rake
thin, with arms like sticks and glazed eyes. He stands in front of Dr
Varaprasad, card and notebook in hand. The 55-year-old senior medical officer
removes his glasses, slides them into his pocket, rubs his nose and bends over
the card which has the man’s personal details.
He looks up from the card at the day’s first patient. “How are you?” The question is a probe as well as a solicitous inquiry.
“OK,” the man says, as if speaking to a long-term acquaintance.
“Good. Your HB count is good. Take medicines regularly,” the doctor replies.
Varaprasad is mild-mannered and agreeable, soft voice, soothing manner and calm demeanour a real asset in his profession. His questions are conversational rather than interrogative, belying his role as medical investigator.
He writes out the prescription and the man walks out, looking happier, assured of another month of good health. The next patient has a cough that seems to come from the floor. You wonder if his lungs will collapse from the exertion. Varaprasad looks up, asks him about his health, notes and sends him for a CD4 (Cluster of differentiation for types of cells) count test.
A woman in a faded green sari pushes her card into his view.
“How are you?” “Good.”
“Get your HB blood test done.” “I will get it done next month,” the woman says.
“Why? If the test shows something different, the medicines should be changed.” “Next month, I am busy now,” the woman repeats. “No,” the doctor says softly. “I have to see the result. It’s only a ten-minute test,” he assures her.
In his small cabin, with an X-ray exposure frame, a stretcher, wash basin and a light stand, the typical encounter with each patient lasts three to five minutes. In the next cabin is junior medical officer Dr Venkata Ramana, 29, who feels happy that he is contributing to treating the scourge. He joined the antiretroviral therapy (ART) centre for HIV-positive patients at Tadepalligudem in Andhra Pradesh’s West Godavari district two years ago.
“I asked you to come here on time,” he says to a man. “You’re so late.”
Some months ago, the man had a CD4 count of 2, and his body caved in on itself. He was carried here. He was put on drugs and slowly improved. That made him cocky, and he stopped medication again. It’s now his second month without.
“We repeatedly tell him, call him to come here and take meds,” Venkata Raman says, with a tinge of sadness, knowing where this will lead. People who don’t show marked improvement even after the regimen here are sent to Vijayawada for a second-line of drugs.
The procession of patients proceeds slowly into the cabins. Marking their varying conditions, steady improvements or precipitous declines, on the cards, noting the test results in notebooks, the doctors see the actual face of HIV infection: sunken eyes, busted lungs from TB, the entire gamut toll of the co-infections.
The disease is not the death sentence it once was; fathers carried their sons for cremation. Wives wept over dead husbands while the children played, not knowing what the loss was all about. Nothing like that happens any more, at least not on that scale.
They are equal parts doctor (“your CD4 count is good”), motivator (“you’re improving, continue taking medicines”), psychotherapist (“accept, life will be good”) and philosopher-friend (“things will be alright, come here one day before meds are over”). And “absolutely no criticism or judgment on the lifestyle of patients,” says Varaprasad. Each case is a lump in the throat, a tug at the heart.
Started in 2010, the
centre draws 100 to 200 (the number depends on the latest tests) patients a
day. Previously, whoever tested positive at the Integrated Counselling and
Testing Centre’s (ICTC) laboratory was referred to the ART centre at the
district headquarters in Eluru, which opened in 2006. Now there is a third
centre in Bhimavaram, which opened in December.
As the morning progresses, a mother and her daughter inch closer to the cabin. The child starts crying, wails echoing off the walls. She stops abruptly, mouth an angry pout. The mother looks fragile. She draws the child tight to her bosom and tucks her at the hip. The doctor calls for her, “children first,” while another woman keeps pushing her card. The girl’s eyes dart from the doctor to the crowd around the table and back, finally locking with her mother’s eyes.
The hall is festooned with posters wherever you look, speaking clearly and factually about testing and safe sex practices. Cine star Nagarjuna and his wife Amala’s faces beam from them: “Think about it for a minute,” one poster says.
The language of the campaign is itself a minefield. HIV comes with a freight train of moral baggage, more than any other disease. Mental illness also has baggage but not of this type. The problem is that, puritanical sermonising about abstinence will get you nowhere, but to move too much to the other side will make it look like you’re willing to let the guys cut all the capers they want. So the posters ask people to get the tests done, and plead for safe sex without being explicit or graphic about the messaging.
But Dr Sankara Rao, medical superintendent of the area hospital and nodal officer of the project, feels, “We should have explicit photos and messaging.” Otherwise, the “message will fall on deaf ears.” With awareness increasing, more people are using the services.
LONG FIGHT PAYING OFFAccording to the Union Ministry of Health and Family Welfare’s HIV Estimations 2012 report, there is a “57 per cent reduction in new HIV infections during the last decade,” and “1.5 lakh lives saved due to scale-up of free ART services since 2004.” In addition, the report places, for 2011, the number of persons living with HIV at 20,88,642 and the number of adult new HIV infections at 1,16,456. The number of annual AIDS-related deaths, for 2011, the report says, is 1,47,729. Although the report says that adult (15-49 years) HIV prevalence at national level “has continued its steady decline from an estimated level of 0.41 per cent in 2001 through 0.35 per cent in 2006 to 0.27 per cent in 2011,” the worrying factor is “around 1.16 lakh new HIV infections among adults and around 14,500 new infections among children occurred during 2011”.
“We gradually lay out the procedure of testing and result in our pre- and post-counselling sessions so that they aren’t scared,” says the affable ICTC counsellor Nagaraju. He knows how to persuade people to get tested and get treatment.
In an another effort, the National AIDS Control Organisation (NACO) is running a pilot programme—only in Andhra Pradesh and Karnataka—to stop parent-to-child transmission. The programme started on September 14, 2012. Nevirapine is the drug used. Children get Nevirapine syrup.
“We try to make villagers adhere to the drug regimen,” says Lakshmi Kumari, the counsellor who talks with pregnant women and mothers. The efficacy of the regimen is yet to be known, “maybe one and a half years after”.
Outside the cabins,
in the hall, people sprawl on benches and slouch in chairs, rush up and down
the corridor for medicines and tests. Nurses yell over the buzz and click-clack
on the tiled floors of the ART centre. It is part of the area hospital in
Tadepalligudem. At the head table, three nurses call out the names.
The waiting patients make for a study in contrast. There is a man with hair oiled and slicked back, checked shirt overwhelming his lean body, watching the sun fall on the fading yellow walls of the next block, turning them auburn.
There is the woman, maybe around 30, boils like thistles on a rose plant. Another scratches his elbow all the time. Persistent sniffles seem to gag a woman. One breathes hard like a bellows being used.
This is a place where nothing needs to be asked or said. Pain hangs thick in the air. It is a place where even the illiterate know the meaning of “CD4”. They’re not here to confront their failings but to mend and move on.
This is a democracy of disease. All are equal. Their bodies may be used up before their time; physical features may be in extremely uncomfortable contrast with biological age, but nobody has a pair of horns. The toxicity of the drugs stamps a permanent misery into the faces.
Each sees the crowd and feels safe in numbers. It looks like a haunted place, all journeying, warding off the prospect of body turning on itself. At another level, it’s a place of solace and communal feeling. The acceptance can feel like a quasi-religious experience for some.
“We are all the same,” says a man. “In the end, we all want to live.”
Their stories are
similar. A coconut tree climber, who says he’s 38, tested positive seven years
ago. “I’m not a roving penis,” he says, but he’s not a sheathed one, either.
“Everything is OK when using meds. No worries,” he says. “I would not be alive if not for medication.” A month earlier, he broke his right toe. That cost him ₹30,000. It’s not yet fixed, and he demands, in the presence of doctor, that the centre take care of these things too, “because it’s so costly we cannot bear it and we’re different.”
A link worker with an NGO brings a woman infected by her husband, a farm labourer. The woman, illiterate and perhaps worrying about what’s in store for her, or perhaps knowing the horror that awaits her for the rest of her life, looks haunted. She quietly shivers waiting for her turn. Tears spill down her cheeks, and her lips quiver.
Amid the quiet buzz of nurses calling and sending people into line, a woman, maybe 50, breaks down. Her son is on medication, lying at home, and now her sister’s daughter is also infected. The nurses cajole her and ask her to bring the son over. “Your house is not far off, bring your son, let’s get him tested for CD4 and give him medicines. He will be all right.” The woman walks out to bring him.
A young man awaits his sister’s test result. Now 30, she was married 10 years ago and stayed with her husband only for the first three months of marriage. “Because he was torturing her, she couldn’t stay with him.” Since then she has been staying in her brother’s house. The brother-in-law died a year ago of AIDS.
The woman started getting intermittent fevers recently, and her brother, who got worried, brought her to the ICTC centre, down the corridor in another block, where she tested positive. Now, he is waiting for the CD4 test that the ART centre checks.
Glances—your glances—can be as invasive as a burglary. Conversations are carried out in raspy whispers, words jamming in the throats, sliding down thrush-prone tongues, and out of lips blistered with sores.
People who are slightly better off and don’t want to be seen by others exit as quietly as they come in, wondering if they will come across someone they know. Some are innocents, infected for no fault of theirs. Sometimes a family knows their son has the infection and is on medication, but still marry him off because “he has reached the age”, and he promptly passes the virus on to his wife. Like spokes in a wheel, all meet at the same place, trying to sprint ahead of the virus and race against the clock.
“We get all classes of people and medicines are free,” Sankara Rao says. People with means, he says, have nutritious food, and they’re healthy while using medicines. “But a lot of poor people also come to our centre. I am happy they’re surviving. But medicines have side-effects, and they cannot withstand them without proper food. Irritability and nausea dog them. The trauma of the infection is compounded by the burden of eking out a living.
“They might stop taking medication. We follow them, counsel them, and put them back on the regimen. I feel the government should provide a pension of ₹1,000 a month so that they can have food first, which can make them lead productive lives.”
The disease is not the death sentence it once was. People know people who died, who were consigned to flames much farther from native places; fathers carried their sons for cremation. Wives wept over dead husbands while the children played, not knowing what the loss was all about. Nothing like that happens any more, at least not on that scale.
“With antiretroviral therapy, it’s manageable,” says Varaprasad. There is no cure, for the present. You don’t cure the syndrome, you treat the symptoms.
It’s around 11 a.m.
More people arrive from remote villages and towns at the centre, a cluster of
fading yellow buildings with white-tiled floors, and smelling of disinfectant,
in this business town that abuts NH16. People press in.
Some of the HB count tests have come back. One of the two data managers, Satyanarayana, comes into the cabin to show the doctor a report, and notices a spatter of blood on a man’s long sleeve. “You keep the swab much longer after the blood is taken out,” he says to the man. He mumbles, “It’s a mosquito I swatted.”
The litany of sorrow is sometimes punctuated by humour. Two friends bring a young man, eyes and skin as dark as coal, and the doctor starts writing in his card.
“Do you drink?” “No.”
“Used to drink?” “Yes, but stopped.”
“How long back?” “Oh, this month.”
The doctor bursts out laughing.
Along the corridor
in the next block, up the stairs, lab technician Chaitanya Kumar sits in a
small room with blue bins where cartridges go to marinate in hypochloride
solution, a hub cutter on the table, refrigerator, and stock test kits. There
is also a centrifuge. ICTC counsellors downstairs send people here for testing,
and that lends the tiny room an edginess. They do three tests for every sample.
The first takes 22 minutes, the next two are rapid, each five minutes.
“People worry about results and come to us and ask.” They aren’t supposed to divulge results here, the report should go to the counsellor. “We don’t reveal results.” If the tests are indeterminate and need further confirmation, the sample goes to the state reference lab in Kakinada.
Blood work carries its own hazard. “We follow universal precautions,” he says. “Even if we get pricked by a needle,” as has been the case with another lab technician, Meher Bhaskar, “there is PEP, post-exposure prophylaxis, for 28 days.” Meher Bhaskar was on PEP sometime last year due to a needle prick.
It’s lunch hour now, and Chaitanya Kumar prepares to go.
It’s certain that antiretroviral drugs give patients a new lease on life, but there is no cure in sight, 30 years on. It has to do with the virus’ unmatched sophistication: it integrates into the cell’s DNA and from then, it has the cell’s back, multiplying, replicating, evading, lying low and roving, until, finally, the immune system collapses. A few other viruses such as HPV too invade the cell and the nucleus. Some of them even jump into the DNA. However, the other viruses do not do this all the time.
how the virus goes about, it’s amazing,” says Dr Udayakumar Ranga, of the
HIV-AIDS Laboratory, Molecular Biology and Genetics Unit, Jawaharlal Nehru
Centre for Advanced Scientific Research, Bengaluru, in a phone conversation.
Within a few hours of
entering the body, the virus attacks cells in the gut. “The human gut has one
of the most powerful immune systems,” says Udayakumar. It gains entry into a
cell through receptor cells called CD4 and CCR5.
It gradually eliminates and disables these cells, which are critical for the functioning of the immune system.
Establishing itself in the cell, it manufactures thousands of new viruses. The mucosal barrier which keeps out the microbial components is weakened and compromised, thus paving the way for the virus to float into the circulation.
The new viruses roam freely through the system, “patching and sealing into more cells”, thus manufacturing still more viruses. “This extraordinary capacity to integrate into the host DNA lets it remain below the immune system’s radar,” he says. Another factor that gives the virus its edge is its latency. It lies low so far outside the immune system’s hawk eyes for so long that the immune system thinks everything is hunky-dory. And then the assault begins.
Udayakumar says, in a paper “HIV-AIDS is different: what goes up doesn’t come down,” co-authored with Prabhu S Arunachalam, published in the NARI bulletin: Tricking the immune system takes place on so many levels—variant strains, blinding rate of proliferation, epitopes, essentially fragments of virus on the surface of the cell, which killer T-cells usually recognise and neutralise but, in this case, are completely unreadable to strike because the transcription code is cryptic—that “the virus (HIV 1) has the perfect answer to every component of the immune system we know today and those yet to be discovered”.
He reckons that as the immune system is continuously firing on all cylinders to fight off the virus it exhausts its energy in the long run. More and more CD4 cells die off. “You cannot run a vehicle in top gear all the time.”
It’s for this reason most people—on ART but without proper nutrition, like those in the ART centre at the area hospital—cannot win big time against the virus. Then the virus is the king and destroyer of all it surveys.
He argues for “immune modulation,” which could strengthen the immune system, using polyherbal medicines, if need be. “India is a land of different ideologies, different cultures of approaching health and treatment. We cannot ignore them. I would welcome even a crook if he can find a better solution for HIV.” As for vaccines, he is not optimistic, simply because a vaccine works with an energy source. Dying CD4 cells are no good energy source.
His lab exclusively focuses on the C-family of HIV viruses which causes nearly 50 per cent of the infection worldwide, and has come out with important findings in recent years that have enormous implications for understanding AIDS. The B-family of HIV viruses are the cause of only 12 per cent of global infections.
The first is that of the nine families of HIV viruses, India’s, China’s, Brazil’s, and South Africa’s C-family of viruses are incapable of killing neurons leading to dementia, unlike the B-family of viruses prevalent in America, the European Union and Australia. That’s one reason why HIV-related dementia is probably not prevalent in India.
The second finding is about the evolution of the HIV 1 C family of viruses. The C-family remained stable until 10 years ago. Udaya Kumar’s team began observing several viral variants in the last 10 years. Three to five new strains have appeared in the last decade in India and are rapidly replacing the standard strain. It’s not yet known whether the new strains are more infectious and more pathogenic.
To treat the patients, the ART centres use, according to NACO guidelines, the following drugs: Zidovudine, Lamivudine, Nevirapine, Tenofovir, Stavudine, Efavireng, and cocktails, depending on the tests, such as ZLN, ZLE, SLN, SLE(these two will be phased out), TLN, TLE. The drugs are given to whoever has less than the count of 350 CD4 cells per cubic millimeter of blood.
However, Udayakumar remains concerned: “These drugs are modelled on the B-family of viruses, and not the C-family, the biggest cause of infection in India. We have no studies that take into account the genetic variation of the hosts as well as natural differences of the viral families. We don’t know if our people are developing a different kind of drug resistance profile than the westerners.”
“We need more clinical research.”
For the present, however, beneath the shrivelled skin and gaunt cheeks, behind the sunken eyes and wasted muscles, the virus struts its stuff.
After the lunch
hour, people still keep coming. That may be due to many missing their
appointment date and coming at their own convenience. A man with piercing dark
eyes walks into counsellor Shiva Prasad’s cabin. He offers the man a seat.
Rifling though his book, he says, “You haven’t come for two months. You know you shouldn’t stop taking medication, whatever the reason.”
“Yes, I know,” the man nods.
He had been some place far away to work. The man from whom he took a loan of ₹18,000 for his second daughter’s marriage deputed him to that place. He had no idea, back before testing, that he was infected. Intermittent fever fried him. Then he tested positive. So did his wife afterwards.
“I thought of coming back to take medicines. But they didn’t allow me,” the man weeps into his clothes.
“Please, you should have somebody to take the meds and send them to you,” the counsellor says.
“Yes, but our man wouldn’t allow it. Everybody there will come to know of my situation and there would be a great commotion.” He weeps again, helpless in his misery.
“Without work you have no money, but without medicines you cannot work for long,” the counsellor sends the man to the doctor.
Such incidents are common. “We cannot say anything because they go to work wherever they find it. We call repeatedly at the number they give us. Sometimes there is a response, sometimes there isn’t.” Counsellors also send outreach or link workers with the NGOs in the area to look for people who haven’t turned up for medicines.
“It happens at times like harvest that they are out in the fields. Somehow or the other, we bring them back.”
As a counsellor he has learned all about how hard it’s to break the silence, to straighten up the truants. Another tall and dark guy, his nose like beak, comes in, holding his card. Shivaprasad scans the card, and asks him why he hadn’t turned up for meds. The man has gone to work in a rice mill in Tamil Nadu.
“Will you go again?” “Maybe, I don’t know.”
Ever patient and
accommodating, they put up with people like the woman who has the notebook but
the not the card where her details are mentioned, who says she transferred here
from a such a place but where her address proof doesn’t exist, but “I am
somewhere elsee but want medicines, now.” She asks them to call up her old
centre, and they do, but they are unable to get details yet because she went
AWOL there, missing meds, and she ends up here and wants medicines, real quick
because, she has got some urgent work. Around 3 p.m., people thin out. The hall
is clear. The day is done. The doctor and the staff slowly walk out of the
centre after 4 p.m. Varaprasad goes to a patient who hasn’t had medication for
the last nine months, and won’t live for long. “Can we go home?” his wife asks.
“You can go home, but every two days you bring him to me,” the doctor says. “The thing is relentless.”