Disruptions in the supply of medicines for people with HIV in Russia have reached such a significant scale that there is a growing concern of a potential new epidemic. Verstka explains why.

22 July 2023

According to Russian HIV activists, unless the government allocates sufficient funds, only 30% of Russians with HIV in need of treatment will receive antiretroviral therapy by 2023. The supply disruptions of life-saving medications have already begun, and there are still more patients, including those in Russian-occupied Ukrainian territories, who require these drugs. Without additional funding, the impact on therapy access for HIV-positive individuals will be unprecedented. Verstka found out how and why this situation developed and what forecasts doctors and activists have. Meduza published this text in full with permission from Verstka.

Outages every year, but these are worse

Massive interruptions in dispensing antiretroviral therapy (ART) to people living with HIV have begun in Russia and the occupied territories. Interruptions.ru received around 200 complaints between April and July 2023. Activists defending the rights of people with HIV told Verstka that the disruptions are the largest in the last six to seven years and could be catastrophic.

The interruptions to the supply of antiretroviral therapy in Russia have been an ongoing issue, with underfunding and logistical difficulties causing delays on varying levels almost every year. The most recent significant disruptions occurred between 2016 and 2017 when the government centralised the ART procurement process from regional to federal authorities.

Six years ago, distribution problems led HIV-positive Russians to organise protests, including street demonstrations. They drew regional and federal officials’ attention to the fact that poor access to ART was contributing to the HIV epidemic in Russia. An untreated patient can not only infect others, but their own health can deteriorate — even to the point of death.

After streamlining the centralised system, interruptions decreased. If there were any intentional or unintentional problems, replacement therapies were provided through regional budgets and activists’ mutual aid kits.

But the current disruptions cannot be “capped” with regional purchases or reserves from mutual aid kits, and it will not stop until the budget for ART is increased.

More patients, less money

At the beginning of 2022, 1,137,596 patients with a laboratory-confirmed HIV diagnosis were living in Russia, according to data from the research department for AIDS prevention and control at the Central Research Institute of Epidemiology of Rospotrebnadzor (The Federal Service for Surveillance on Consumer Rights Protection and Human Wellbeing). In 2021, 660,821 patients (including 58,105 in prison) received ART.

End-of-year data on the number of HIV-positive residents in Russia has not yet been published. After the law “On the acceptance of the DPR, LPR, Zaporizhzhia and Kherson regions into Russia” was signed in the fall of 2022, the number of people with HIV who needed ART increased. The Russian Federation’s budget had to fund it. However, the allocation for purchasing ART was not raised.

Treatment Preparedness Coalition reported that a total of 42.5 billion roubles was spent on ART procurement in 2022, which provided treatment for the largest number of patients ever recorded. But offering so many treatments (566 thousand courses) was only possible because the Ministry of Health “borrowed” 8.5 billion roubles for ART from the 2023 budget. Thus, next year’s budget for HIV medication decreased and no additional funds were allocated.

Activists and representatives of patient organisations from 32 Russian cities have appealed to the government, the State Duma, and the Ministry of Health. They demand measures be taken to prevent disruptions in 2023.

“In 2023, the Ministry of Health’s contracts for ART medication amounted to only 21.5 billion roubles, equal to 292,000 courses,” says the letter. “The entire 2023 budget has been spent. But the volume of purchased drugs will cover only about 30% of the patients in need of ART.”

In the spring of 2023, HIV-positive individuals in several Russian cities started voicing their concerns regarding the lack of access to necessary medications. Instead of receiving the required treatments, they reported being given cheaper alternatives that often led to harmful side effects.

There were delays in 18 regions of Russia, as well as in Federal Penitentiary Service institutions and the Federal Medical and Biological Agency. Most complaints were sent by residents of the unrecognised DPR, St. Petersburg, Leningrad, Sverdlovsk, and Tyumen regions.

One of the activists, speaking on the condition of anonymity, informed Verstka that based on her data, the regions have consistently notified the Federal Ministry of Health about the shortages of various drugs and doses:

In response to the complaints, the Ministry of Health “advised” regions to take responsibility for providing patients with medicine. But we all know that not all regions have the funding. Maybe Moscow and the Moscow Oblast won’t have big problems, because their budgets are quite different.

The activists emphasised that only about 5% of all antiretroviral therapies (ARTs) are purchased using regional budgets, and in some regions, no such purchases are conducted at all.

Disruptions due to the war

Residents of the annexed DNR made at least 20 posts about therapy delivery, and three from the occupied part of the Kherson region. One of the patients wrote in June 2023:

We started having problems with supplies of therapy in Donetsk at the start of the hostilities. Everyone received therapy from Ukraine before the special military operation. The doctor, apparently hearing of my situation, gave me six months’ worth of medication [still Ukrainian – V], and the expiration date of the pills is May 2023. We will have to take “expired” pills because we have no other choice. The AIDS Centre does not know when the supplies from Russia will be delivered and what kinds of medications they will provide.

Another patient wrote:

I live in Donetsk. I’ve always lived here. I didn’t want to write until the last minute: I was afraid of getting the doctor in trouble. But the situation is that we have no drugs. None at all. The doctor said that they can’t even give drugs to those who have a bad immune system and a high viral load. The doctor said to me: “Come here, we will give you expired drugs again, keep taking them.”

The rest of the treatment is even worse. A friend of mine was in Makeyevka, and they told her: “Here is a month’s supply of some obscure medication, and if nothing else arrives in a month, you can buy it.”

A Verstka correspondent in the Kherson region helped bring medication to a resident in a settlement still controlled by Russia. The journalist was asked for help by a relative of the patient, who lives in Kiev. Volunteers in St. Petersburg had to search for the medicine and then transfer it to annexed Crimea. From there, other volunteers delivered it to the person in need.

In response to patients’ appeals, the Ministry of Health said, “in the absence of medicines supplied centrally from the Russian budget, the regions should provide patients with medicines on their own.” However, according to the activists neither the annexed DNR nor the pro-Russian “authorities” in the Kherson and Zaporizhzhya regions are providing patients with medicines. Nor have they bid for medication supplies on the state procurement website.

 How to prevent catastrophic outages and what they lead to

According to an HIV rights activist, the number of patients seeking therapy at AIDS centres has increased in the past year. However, the drugs purchased using the 2023 budget were already used the previous year. “That is why we are saying that something unprecedented, if not catastrophic, is happening this year. Hence our conclusions that it’s gonna be a pain,” an activist told Verstka.

In a letter to the Russian Ministry of Health, the government, and the Duma, the activists suggested taking emergency measures to prevent disruptions with “far-reaching negative consequences.” Such measures include negotiations for price reductions with manufacturers of ARTs sold in Russia and additional purchases made with borrowed funds from the 2024 budget.

But the crisis will continue without an at least 15 billion increase in the budget.

“First of all, this will negatively affect the results of HIV treatment and will also cause new cases,” the activists predicted in a letter to the Russian government, the Health Ministry, and the Duma.

People with HIV are already facing the consequences of the supply disruptions, as evidenced by their complaints. Some individuals are discontinuing the use of unsuitable drugs due to severe side effects, while others are being compelled to purchase appropriate medications themselves instead of relying on those provided by AIDS centers.

“Hello! They’re not giving me a new treatment, the old one doesn’t help — I can’t work, strong side effects,” a patient from Bashkortostan wrote on Pereboi.ru. “As a result, it’s been five months without medication.”

https://meduza.io/feature/2023/07/22/proishodit-chto-to-bespretsedentnoe

Originally published by Meduza and Rita Loginova (Verstka). Translated by Spencer Michaels.