A sixty-something woman is holding her grandson outside the pediatric emergency of Merida’s University Hospital. The place is flooded with sick kids and worried moms, yet this baby is different. He’s 11 months old and weighs about 5 kg. Constant diarrheas have caused his growth to slow down radically.
Last night he started coughing and he has problems breathing. “Pneumonia again,” the woman whispers; that’s what doctors have said to her six times now. When he was born, she remembers sitting next to her daughter’s hospital bed, as she breastfed her new grandson. That’s when her serology results arrived.
ELISA HIV: POSITIVE.
The woman didn’t understand. All she remembers is doctors telling her daughter to stop breastfeeding her grandson.
Five months later, the mother was dead. Way too sick when diagnosed, the drugs were too little, too late. The baby’s father died too. No one really understood why at the time, but now it’s clear. The woman is afraid her grandson might have the same disease that killed his parents; he received the same drugs his mother used, but when his serology came out negative, doctors stopped – they had to be sure if he was really sick. They told the woman he must get a more precise test, but she can’t afford it.
This is not fiction. This is the real story of one of thousands of Venezuelans affected by HIV.
Hanging on in Mérida
I talked to Gustavo and Nora – who asked me to change their names so they could speak frankly. Both belong to a Mérida-based NGO centered on HIV/AIDS. They’re both immunologists and have been working with HIV+ patients since the early 2000s.
“There’s an alarming increase of patients already with AIDS who ask for our help,” is the first thing they tell me.
Refresher course: HIV is not AIDS. The Acquired Immunodeficiency Syndrome is the last stage of HIV infection, reached only if a patient is left untreated for a long time.
When he was born, she remembers sitting next to her daughter’s hospital bed, as she breastfed her new grandson. That’s when her serology results arrived.
The government has traditionally imported antiretrovirals directly, so you can’t buy them in Farmatodo. They’re expensive and must be managed carefully, distributed nation-wide among subscribed patients by a state-run, tightly overseen HIV program, free of charge. Surprisingly, it still works. At least in Mérida it does.
“You can’t say patients are not getting antiretrovirals. The government distributes them alright,” Gustavo assures me.
A few weeks ago, Gustavo was still relatively sanguine. Things had gotten worse, but not collapsed.
“Five years ago,” he told me in April, “the government brought drugs made in France or Great Britain. Today, they come from Cuba, India, Argentina and China. Quality controls aren’t as strict, but the treatment does arrive regularly.”
I called him again last week after reading Stephanie Nolen’s shocking report about full-blown AIDS in Caracas, and Gustavo’s tune had changed.
“The program still runs,” he said, “but I don’t know for how much longer. As far as we know, the government hasn’t imported the drugs needed this year and most programs work with what they have in stock.”
Those stocks are limited and they’re running low. That explains the irregular distribution reported in almost 20 states. The situation is critical.
“The government buys drugs through a few U.N. agencies, including the United Nations Population Fund (UNPFA),” Gustavo says. “Sources tell us that Venezuela has not ordered the supply for 2017. It should’ve been ordered last November.”
In fact, authorities from the National HIV Program confirmed that orders for pediatric drugs have not been issued, due to the administrative mess that erupted after three different ministers were appointed in less than a year.
Patients are being informed about this at the program’s pharmacies: they still get their meds, but no one can promise they’ll still find them next month.
And the medication itself is not what it used to be. Treatment schemes were modified as the government scrimped on imports. Antiretrovirals like Complera or Viraday have disappeared, with problems in distribution reported as far back as three years ago. Drugs for AIDS, which are now unavailable, are not the same used for everyday therapy. There’s not much doctors can do for terminal patients.
Sources tell us that Venezuela has not ordered the supply for 2017. It should’ve been ordered last November.
Still, as much as the situation in Mérida has deteriorated, it contrasts with the bone-chilling reports from other regions these last few years. State-based programs are independent from each other and Merida’s is la tacita de plata.
“Mérida’s HIV program has been the best in the country,” Nora says. “It’s one of the oldest and oversees those in neighbouring states. Things here aren’t as bad as you’d expect.”
Differences in demand for the drugs might explain this contrast. If pharmacies work with what they have in stock, those stocks will run out faster in places with higher demand, just like food in supermarkets. Big cities like Caracas have a higher demand than places like Mérida. So it’s a matter of time before we face shortages too.
Now, ELISA is the most commonly used method for HIV detection. It finds the antibodies produced by patients after first contact with the virus. But this defense is not synthesized immediately, so results can’t be trusted for a couple of months after infection. That’s why someone recently infected might get a negative result. Several “generations” of ELISA exist, and the fourth is the most accurate… and expensive.
“Most patients coming to us have been HIV+ for years, unknowingly spreading the virus,” Nora tells me. “Many have tested negative in several ELISA tests, even after months. Our guess is that labs are using older tests, since fourth-gen have turned out to be so expensive.”
As the dollar skyrockets, the reagents ELISA requires are harder to pay and low-income patients, who account for the bulk of most programs’ recipients, stop getting them. Doctors schedule patients for follow-up every six months, in order to give enough time to get the tests done. When patients come back, there’s no test available.
With babies, the situation is worse. Their immune system is not mature enough, so false-negative ELISA are common and different detection techniques must be tried. These techniques find the virus located inside the cells and the process costs more than two monthly minimum wages.
Most patients coming to us have been HIV+ for years, unknowingly spreading the virus.
Forget about donations. Every single donation must first be deposited in the Central Bank, then transferred to an account in bolívares at the phony official rate. They were used to cover tests for families who couldn’t afford them, and the development of public awareness campaigns.
“One time an institution sent us $200” Nora says. “After months of waiting, we talked to the Central Bank and they said the transfer was never made, even though we had the confirmation”.
The money vanished.
Two weeks ago I met a newborn whose parents were both HIV+. No tests had been done and the preemptive medication was only available in tablets for adults. Doctors crushed the pills, dissolved them in water and gave the baby the dose with a syringe. Not the way it should be and, in medicine, when you don’t do things the way you should, they don’t work.
Gustavo is clear about the cause of the tragedy: Government’s mismanagement.
“People see the HIV program as a Chavista contribution to Venezuela, but that’s a misconception. It was in development many years before Chávez; Venezuela achieved important progress with HIV+ in the 90’s and the human component was key. The flaws we’re seeing are government’s negligence. Don’t tell me there’s no money for antiretrovirals when you just ordered new tear-gas canisters. Money is not the problem, priorities are.”
As of today, only one doctor is in charge of over 3,000 patients enrolled in Merida’s HIV program. He’s supposed to decide the best treatment for each of them and monitor their response to decide if a new approach should be tried. The complex infrastructure required to manage these patients is collapsing and if things don’t change quickly, the hellish scenes reported around the country might turn into just another horror we see everyday until it shocks you no more.
The abyss stares back.