MOSCOW, October 8 — Many of the posts on the website Pereboi.ru — a chat room for Russians diagnosed with HIV, the virus that causes AIDS — are alarming.
“Today my husband went to the clinic and they told him that they gave out all the medicine on Monday,” wrote Nelli from Ufa. “He went downtown and they told him they have no medicine and they aren’t getting any.”
“I feel awful, but they won’t give me any treatment. They said there is a shortage of antiretroviral treatment in Tomsk Oblast and they are only giving it to the most dire cases,” wrote Marina from Tomsk. “I am raising a child, and I don’t want to die.”
Problems with the distribution of HIV/AIDS medications have become endemic in Russia, forcing patients to increasingly rely on one another to get the treatments they need. The situation in Russia in 2017 has come to resemble the plot of the Hollywood movie Dallas Buyers Club, which was set in the United States in the 1980s.
“When I was diagnosed with HIV in the early 2000s, there was no treatment at all,” says Aleksei Yaskovich, the head of the Melnitsa nongovernmental organization in Kursk who created the Aptechka network for redistributing HIV/AIDS medications in 2010. “My doctor told me, ‘If you live three years, you’ll be lucky.’ Back then, it was really scary. But now you know that medicine exists but that you aren’t getting it because of some bureaucratic hang-ups.”
Yaskovich noticed seven years ago that the Health Ministry’s system for distributing vital HIV/AIDS medications frequently produced situations where clinics ran out in the middle of the year, leaving patients with life-threatening gaps in their treatment.
“And people were dying,” Yaskovich tells RFE/RL. “It all began back then. They would take medicine away from some patients and give it to others. Pregnant women and children had priority.”
So patients began to organize.
Patients whose treatment regimen was changed would send their old medications to Yaskovich for redistribution. In the beginning, the entire Aptechka program could be found in Yaskovich’s refrigerator.
“It was full of pills, boxes, and bags,” he recalls. “My mother was getting upset.”
He discussed the problem at a conference in Vienna in 2011.
“Other people left the conference with souvenirs,” he says. “I had half a suitcase full of several thousand tablets of Kaletra.”
Medicines also became available in more tragic situations.
“Our friends would die and their mothers would give us their medications,” says Svetlana Prosvirina, head of the Kaliningrad NGO Status+ and local Aptechka coordinator. “I remember the first time: A friend of mine died of an overdose and his mother gave us a whole chest of pills at his wake. Apparently, he had gotten seriously into drugs and had forgotten about his medications. That is how we filled our little drugstore the first time.”
Sometimes, medicines come straight from the producers, through sympathetic workers there.
“Everything is done through personal contacts,” says Ivan, who asked not to be identified because he works in a state-run clinic. “I call a friend and he says, ‘We have a couple of boxes we can share. Bring a car.’ I don’t have a car, but I go with two backpacks and a shopping trolley. Then we send them to Biisk, Rubtsovsk, and Barnaul.”
Russia is virtually the only developed country where the number of new HIV infections and the number of AIDS-related deaths in on the rise. According to UNAIDS, in Spain, for instance, 73 people died of AIDS in 2015 compared to 1,034 in 2006. In France, those figures were 354 and 61.
In Russia, by contrast, government figures show that 1,529 people died of AIDS in 2005. By 2013, that figure was 10,611, and last year, it reached 18,577. Activists say the death toll will likely top 20,000 this year. It is impossible to say how many of these cases result from the irregular access to vital medications that Aptechka tries to counter.
“In the first half of this year, we sent 93 parcels to various regions,” says Yulia Vereshchagina of the NGO Patient Control in St. Petersburg. “That is about four or five parcels a week. But it is hard to tell exactly how many people we are helping because a lot of the packages are for more than one person. Sometimes one parcel has supplies for up to five people.”
Aptechka also helps patients who are simply too tired or too ill to make it to their clinic to get their medications. Or, in some cases, they are unable to take enough days off work both to make their doctors’ appointments and to travel back to the town where they are registered as HIV patients.
For 2017, the Health Ministry spent 17 billion rubles ($296 million) to buy treatments for 235,000 patients. Activists estimate this covered about one-third of the demand. In September, the government added an additional 4 billion rubles.
The spike in shortages has strongly activated the Aptechka network this year.
“Now, we aren’t only helping out with pills, but we are also urging people to write complaints to [state consumer protection agency] Rospotrebnadzor,” Ivan says. “We tell them not to wait around. In Barnaul, when people started writing, we saw some progress. It hasn’t produced a positive solution, but while in the past people just hung around their local AIDS centers, now they are giving pills to the loudest ones.”
Yaskovich continues to generate ideas to alleviate the situation, but he is pessimistic.
“I keep thinking about creating a single online resource where the managers of all the drugstores in the country could post in real time information about what drugs they have, when they expire, and so on,” he tells RFE/RL. “They have this idea that with ‘import substitution’ [as a result of Western sanctions against Russia and Moscow’s self-imposed countersanctions] we will start producing [the medications] ourselves and everything will get better. This is an illusion. Nothing will get better. I don’t see any improvement in the situation. What happened in 2011 is happening again now, in 2017.”
By Robert Coalson and Anastasia Kuzina