The supplier of the Ministry of Health left HIV-infected people without medicines. HIV is better than cancer: a resident of Barnaul about her illness and a free medicine

14.03.2019

HIV: Zidovudine (ZDV, AZT), Lamivudine (3TC), Etravirine (ETV)

Good day. For 10 years now I have been receiving the drug "Intellence" which, after repeated changes, suited me. Not so long ago, at the next prescription of medicines, the doctor told me that there was no Intelligence and wrote out a replacement, taking a receipt from me that I was not against changing therapy. Since I had a few days of pills left, I agreed to this option. Next, I decided to check whether the drug was really not available and called the pharmacy, where they told me that the drug turned out to be there, if there was a prescription. I drove back to the doctor and said I didn't need new drug(which it is not known whether it will fit at all) and that I am ready (if necessary) to wait (the stock was found for 2 weeks), for which I was almost sent to hell with a scandal. It so happened that, taking advantage of my position (lack of therapy), the doctor removed me from allowance (I think that's what they call it?) And transplanted me to a new (domestic) drug without any medical indications based solely on the schema change agreement I signed. To me, this looks like a scam. Please tell me what should I do in this situation? Thanks in advance. Andrey.

Fidana

14.03.2019

Nizhny Novgorod

HIV: Phosphaside (F-AZT)

They did not give Nikavir

Maksim

14.03.2019

Vladimir

HIV: Emtricitabine + Rilpivirine + Tenofovir (FTC/TDF/RPV)

Hello! Since I am studying abroad, they give me Eviplera for a period of 3-4 months. Today, when I came to the AIDS center, they gave me the drug for only one month, explaining this by the fact that purchases and auctions had not yet been carried out and in best case The drug will be delivered in August. They offered to switch to another scheme, but I can't. You will have to buy the drug at your own expense, but it is not cheap. For 4 packs before August, you will have to pay 120,000

Consultant's response:

Maxim, hello. We recommend that you write an application addressed to the head physician about the need to issue drugs for the required period (no more than 6 months) in order to avoid a forced break in treatment. Please explain the reason why you will not be able to visit the AIDS Center every month with your application. You can attach a certificate of study or other evidence that you are leaving the region for more than a month. We are ready to help you complete your application. You can also make a power of attorney to receive ART for any person (friend, relative), and they will be able to receive medicines and send them to you by mail. You can get a power of attorney from your doctor. Indeed, often AIDS Centers are forced to provide therapy for 1 month in order to provide patients with ARV drugs and prevent interruptions in treatment until new supplies begin. This practice is followed by many regions. Best regards, Pereboi.ru team

Alexandra

13.03.2019

Stavropol

HIV: Lopinavir + Ritonavir (LPV/RTV)

Today in the Stavropol Speed ​​Center where I receive hiv therapy Kaletra + Zilacomb told me that they no longer have Kaletra and suddenly changed the treatment regimen. I was given Efaverez. I won't be taking Efaverez because I need to be normal at work. side effects from Efaverenza are such that I will have to stay at home and I need to feed two children.

Consultant's response:

Good afternoon Alexandra. If there were no medical indications for replacement, we recommend that you start with a complaint to the head physician of the AIDS Center, where you write the reason why you cannot take efavirenz and ask either to return the previous ART regimen or prescribe a drug to replace efavirenz. We will help you fill out the application, and, depending on the answer to it, we will tell you what to do next. And for the time of solving the problem, we are ready to help you with Kaletra from our "mutual aid kit". Best regards, Pereboi.ru team

Nina

13.03.2019

HIV: Ritonavir (RTV)

Hello! In Kazan, there are many complaints about the bursting shell. For some reason, the patients themselves could not send a complaint

Consultant's response:

Hello Nina! Thank you for message! About poor-quality Retviset, you must, first of all, inform the manufacturer. Our consultant will contact you by e-mail to ask clarifying questions and help you complete the necessary applications. If necessary, we are ready to give you ritonavir from the "self-help kit", which can be kept warm. Sincerely, Pereboi.ru team

Dima

13.03.2019

Chelyabinsk

HIV: Ritonavir (RTV)

gave RETVISET (ritonovir) 100 mg. the capsules are flowing, some look even empty.

Consultant's response:

Good afternoon, Dmitry. Thank you for message. About low-quality drug it is necessary, first of all, to inform the manufacturer. Our consultant asked you clarifying questions, and will help you fill out and send applications. If necessary, while you are dealing with Retviset, we are ready to give you ritonavir, which can be kept warm, from the mutual aid kit. Sincerely, Pereboi.ru team

Oleg

13.03.2019

Hepatitis C

Good afternoon I am applying for free program treatment for hepatitis C. However, I am offered to either confirm participation in hostilities for federal program or apply for disability according to proratology for regional program. Please explain to me my next course of action.

Consultant's response:

Oleg, hello! Our consultant will contact you by phone to discuss the situation and clarify some points in order to give you a detailed answer to your question. Sincerely, Pereboi.ru team

Alexander

13.03.2019

Murmansk

HIV: Abacavir (ABC), Atazanavir (ATV), Lamivudine (3TC), Ritonavir (RTV)

Hello. The Murmansk AIDS Center always gives out therapy for no more than 30 days. If there are 10 days left until the date when I run out of pills, for example, and I am at the appointment of an infectious disease specialist, then he does not give prescriptions and tells me to come a few days before my medication runs out. Although you can give it in advance, despite the fact that I have another 10 days to spare. Now, in general, they give therapy for 10-15 days or do not give it because it is not available. If you make an appointment 3-4 times a month because of 30-day therapy, then someone may not have enough coupon when they really need it. Thank you.

Consultant's response:

Alexander, thanks for the second message and clarifications. We will help you write appropriate complaints in order to resume adequate dispensing of ART and understand the reason for this situation. We are also ready to help with ARV drugs for the time of finding out the causes and solving the problem. Sincerely, Pereboi.ru team

Evgeniya

12.03.2019

Chelyabinsk

HIV: Lamivudine (3TC), Etravirine (ETV), Tenofovir (TDF)

They gave out drugs for 1 month, instead of 3. They said there were interruptions in the drugs.

Consultant's response:

Evgenia, hello! Indeed, in many regions of the Russian Federation there is a problem with Etravirine, namely, with its shortage. Therefore, the AIDS Center is forced to give out therapy for 1 month. This is necessary in order to provide patients with ARV drugs and prevent interruptions in treatment before the start of new supplies. This practice is followed by many regions. We hope that the forced change in the rate of drug dispensing will help to avoid interruptions in the Chelyabinsk region. If there are any changes in the situation, please let us know. Best regards, Pereboi.ru team

The authorities of the Tomsk region acknowledged that the region lacks medicines for the distribution of HIV-infected people, including 200 patients who are in dire need of treatment, who were registered this year. As Kommersant found out, a shortage of medicines is also observed in a number of other regions: in the Altai and Krasnodar Territories, Irkutsk, Nizhny Novgorod, Orenburg, Chelyabinsk regions, Tatarstan.

“Since October 2016 I can’t get therapy, for some reason they are dragging me, help me,” one of the patients from the Tomsk region writes to the Pereboi.ru website (the portal monitors messages about interruptions in issuing essential medicines). “I went to see the head doctor. Regarding therapy, they said that there was no possibility of funding, so they could not even prescribe a course of treatment,” the patient reports. “In Tomsk, they don’t give me therapy, referring to its shortage, they offer to buy it at my own expense,” another letter says. “I turned to the health department, they said they couldn’t help.” “In Tomsk, they don’t give me therapy, constantly referring to its absence, they constantly postpone the deadlines, promising to give me first in March, then in May, now they say that they expect to receive it in July,” patients write. One of them says that he cannot be prescribed treatment for six months: “They say there are no drugs. Immunity has fallen, the temperature of 38 ° C has been holding for two months. Today they didn’t prescribe anything again, they told me to drink an antipyretic, and that’s all. Yulia Vereshchagina, a representative of the Patient Control movement (which unites people living with HIV), told Kommersant: “One of the patients who is now expecting a baby was prescribed other medicines that turned out to be ineffective due to the lack of medicines, and now it is highly likely that the baby will be HIV positive.”

Roszdravnadzor in the Tomsk region analyzed public procurement data and found that drugs for this region have so far been purchased only for patients continuing therapy, there are no drugs for "new" patients. Let us remind you that since this year, unlike the previous year, the purchase of medicines for HIV-infected people is carried out centrally by the Ministry of Health of the Russian Federation. According to territorial authority Roszdravnadzor, according to an application from the Tomsk region sent to the Ministry of Health, “it was planned to provide treatment to 1,517 patients, 695 of them are continuing treatment, 822 are starting therapy.” The shortage of drugs was confirmed in response to a request from one of the patients and chief physician Tomsk AIDS Center Alexander Chernov: “Currently, the application is secured for patients continuing treatment, pregnant women and children. As of July 10, for patients starting treatment, no drugs were delivered to the Tomsk Region.” According to him, about 200 people from those who were supposed to start taking drugs are in dire need of drugs. In Patient Control, they told Kommersant that they had received 14 requests from patients from the Tomsk region who were denied prescribing therapy for existing medical indications.

The Ministry of Health of the Russian Federation, in response to a request from Kommersant, said that “to date, almost all purchases at the federal level have been fully completed, necessary drugs delivered to the regions.

The head physician of the AIDS center tried to explain in letters to patients that if the purchased drugs for patients on treatment are redirected to those who should start therapy, this may create a risk of interruption of treatment if the drugs are not received. Recall that when taking therapy, it is not recommended to take a break because of the danger of developing resistance - the drugs cease to work, patients have to select new ones. As Kommersant was told by representatives of Patient Control, due to a lack of medicines, two patients from the Tomsk region developed tuberculosis, and there are also cases of the development of "severe types of herpes." “Now some patients are asking doctors for a prescription in order to buy medicines themselves.

Others try to solve problems through a "backup kit" - this is the name of the database of drugs left in patients after the end or change of course, which they share with other patients.

Yulia Vereshchagin, a representative of Patient Control, told Kommersant.

According to the patient organization, a difficult situation with drugs has also developed in the Orenburg region: patients receive answers about the impossibility to provide drugs to requests. The administration of the Orenburg AIDS Prevention and Control Center applied to the local health department with a request to purchase additional antiretroviral therapy, but received no response. A similar situation, according to Patient Control, is observed in the Altai and Krasnodar Territories, Irkutsk, Nizhny Novgorod, Orenburg, Chelyabinsk Regions, and the Republic of Tatarstan.

At the same time, speaking about the number of messages from patients with HIV from different regions of Russia, representatives of the movement reported that their number in the first five months of 2017 alone amounted to about 600, which is almost twice as much as in the same period in 2016. Representatives of the patient organization told Kommersant that they had contacted the Ministry of Health for clarification. The Ministry of Health of the Russian Federation did not confirm receipt of complaints from Patient Control: “We are ready at the very short term consider each complaint individually, if relevant information is provided to the ministry.” The Ministry of Health did not answer the question of Kommersant about the reasons for the delay in deliveries.

Valeria Mishina, Galina Sakharevich

What Roszdavnadzor proposes to solve the problem with medicines

At the end of April, after massive complaints about the lack of drugs for HIV patients in a number of regions, the head of Roszdravnadzor Mikhail Murashko discussed the situation with representatives of the Patient Control movement.

There are queues in AIDS centers. People living with HIV who are guaranteed antiretroviral therapy by the state cannot get their own medicines. Interruptions in therapy threaten not only the lives of the patients themselves. Interruptions contribute to the spread of the epidemic. A person with HIV+ status who is on medication cannot pass the virus on to anyone. A person who is not on medication can. According to the Federal AIDS Center, by the end of 2015, the number of patients diagnosed with HIV in Russia had crossed over one million. Only 230 thousand people received therapy in 2015, and the increase in new cases compared to 2014 was 8%. Meanwhile, recently the UN recognized Russia as the epicenter of the global HIV epidemic. According to UNAIDS, the Russian regions account for approximately 80% of HIV cases last year.

By pill

In order to receive antiretroviral therapy, which the state provides free of charge to HIV-infected people, Elena needs two and a half hours to get from the village in the Moscow region. But that wouldn't be a problem. The trouble is that in recent months from the Center for the Prevention and Control of AIDS near Moscow, a woman more and more often returns empty-handed.

According to Elena, interruptions in therapy began in February 2016 - and if at first they touched one drug from her regimen, then by spring - all of them.

“At first they stopped issuing abacavir,” says Elena. - They promised that deliveries would resume in April, but this never happened. In the spring, I was not given two drugs - not only abacavir, but also ritonavir-100.

On June 20, Prezista was added to the list. Elena's husband also has HIV+ status - with the start of interruptions, zidovudine disappeared from his regimen. Elena says that earlier therapy given out for two or three months, now you have to go for it almost every week - in the hope that the drugs will appear. Only in this way - you can't get through to the AIDS Center by phone. A line of patients is lining up on the street. But having defended in it, most patients leave with nothing.

Elena does not blame the doctors of the Center for the Prevention and Control of AIDS near Moscow - she says they have become hostages of the situation. The problem is solved in different ways: “Someone openly lies to their patients and sends them on “holidays”, assuring that it is sometimes useful to live without therapy. Others advise crushing the tablets. But the doctor is honest with me. He immediately said: “There is an opportunity - buy medicines.”

Elena does just that - she buys, exchanges, collects excess for patients.

Elena and her husband need 60,000 rubles a month for therapy. So many drugs are officially in the pharmacy, but this amount is unbearable for the family. If you buy from the hands, the drugs are much cheaper. On the screen of her smartphone, Elena shows me correspondence with sellers in social networks - during the season of interruptions, prices for basic drugs soar, I have to bargain.

Elena does just that - she buys, exchanges, collects excess for patients

For her family, Elena has to collect a “first aid kit” literally in a pack. Sometimes miracles happen - a couple of months ago, the seller, in addition to the purchase, handed over the package not the right medicines, says Elena. So the family got the long-awaited abacavir for four months.

Terrible headaches and insomnia, memory lapses torment many HIV-infected people, these are side effects from therapy or changing therapy

From interruptions, HIV patients are saved together.

“One public organization for men who have sex with men helped me,” Elena says. - I even visited them - they gave me ritonavir-100, they gave me coffee, I didn't want to leave. Say thanks to Kirill and Mikhail!”

On a visit, Elena left some of the medicines from the "same" package - zidovudine and amivren. The rest was passed along the chain further - to a tuberculosis dispensary, a doctor I knew. There, without treatment for AIDS, those who do not have registration die.

nine months of hell

Elena is ready to do everything to get the necessary drugs. For her, this is a guarantee that “hell” will never return to her life. Four years ago, Elena, in her own words, "dissented to the grave" - ​​the virus entered the AIDS phase. (HIV dissidents deny the existence of the human immunodeficiency virus and neglect treatment. - TD)

HIV-positive Elena was made by a man with whom she "had love for two years." Then she found out that her partner could not have been unaware of his diagnosis - he was registered with the AIDS Center and signed a paper stating that he was criminally responsible for contracting HIV infection (punished by imprisonment for up to three years. - TD) . The man picked up the virus from a friend, a former prisoner, with whom they injected with the same syringe. Elena forgave her partner, did not hold him accountable - now he has a family and two children. And then it seemed that life was over. “I cried and could not stop - there were no napkins, I wiped my face with a curtain,” she recalls.

Soon Elena stopped going to the doctor - "I read on the Internet that HIV is a hoax." “That made it easier for me,” she sighs. In 2010, Elena passed the test and found out that she had begun the stage of AIDS.

The man picked up the virus from a friend, a former prisoner, with whom they injected with the same syringe. Elena forgave her partner

“Therapy was not taken even then,” she says. “In 2012, I practically stopped walking, my hair fell out, I turned into a skeleton.”

Elena was taken to the hospital in an ambulance and kept on a drip for a month. That was her path to status acceptance - she started taking therapy. But at first it didn’t get better, Elena was diagnosed - open form tuberculosis.

“My nine months of hell began,” Elena recalls. - I drank more than twenty tablets a day, but nothing worked. Despair came - how could it be otherwise, when you see how people without HIV status die from tuberculosis ... They lie stacked on the tile with tags.

In the sixth month, Elena improved. She filed for disability. She never returned to the tuberculosis dispensary.

“I don't want to go back to the TB clinic,” Elena says quietly.

Antiretroviral therapy gives Elena hope not to return to the TB dispensary. With which in the Moscow Region Center for the Prevention and Control of AIDS - interruptions.

Patients in control

Elena is one of thirty patients who, united, wrote a statement to Roszdravnadzor on behalf of the Patient Control organization demanding an inspection at the Center for the Prevention and Control of AIDS near Moscow.

In a statement, patients complain that the shortage of antiretroviral drugs has been going on for four months, even children and pregnant women are denied treatment. Patient Control activist Alexander Ezdakov says that after the appeal, Roszdravnadzor conducted an unscheduled inspection at the AIDS Center near Moscow and at the regional Ministry of Health. Interruptions were ordered to be eliminated by August 1. But they are unlikely to disappear forever.

Elena calls her husband a guardian angel, he only person who was there for all the hard times

Interruptions in antiretroviral therapy for HIV treatment are not just a problem this summer. In 2013, the Ministry of Health transferred the function of drug procurement to the regional ministries of health. There had been interruptions before, but after that, decisions became commonplace.

According to Andrey Skvortsov, an activist of the Patient Control movement, at that time the decision looked reasonable. The previously existing scheme of centralized procurement, in which the Ministry of Health purchased drugs for the needs of the regions, was not optimal: the department arbitrarily cut applications received from the regions, and could hardly cope with the task of distributing purchased drugs among the regions. On the ground, patients often received the wrong drugs, in the wrong amount and with delays.

But “decentralization” only exacerbated the situation with interruptions - for three years now, a number of regions have been purchasing drugs with delays that reach up to four months.

“There are several reasons, including banal negligence,” Andrey Skvortsov believes. - Officials on places were not ready that such responsibility will fall down on them. There is no priority - first they buy bandages and rags for ordinary patients, and then they buy antiretroviral therapy, which a person living with HIV must take all his life without interruption. Other reasons - price policy distribution companies, lack of competition in procurement, corruption”.

So sadly the situation is not everywhere. In regions where purchases are made by the AIDS Centers themselves, they try to buy medicines on time and at reduced prices, Skvortsov notes.

"decentralization" only exacerbated the situation with interruptions - for three years now, a number of regions have been purchasing drugs with delays

Patients with HIV leave messages about the shortage of drugs in their region on the Pereboi.ru website. According to Skvortsov, in 2016, distress signals were received from more than 30 Russian cities. Patients from Moscow, Omsk, Tula, Kaliningrad, Arkhangelsk, Ufa, Tver, Novosibirsk, Podolsk, and Tolyatti faced the problem. The Moscow region stands apart in this list. Despite the proximity to the capital, this year there were perhaps the most serious delays.

“We missed the deadlines,” Skvortsov throws up his hands. - In February, nine auctions were announced, three of which did not take place. Six drugs were purchased - there was no competition for the remaining 40 items.

But 15 auctions - in one fell swoop - were held on the second day after the inspection by Roszdravnadzor.

Why auctions were held only after the intervention of Roszdrav? Why was the suicidal decision made not to rush to purchase drugs? The answer to this question from the Moscow regional center We never got AIDS. The head physician of the Center, Alexander Pronin, hung up as soon as he heard a question about interruptions. As the patients warned, we were unable to get through to the Moscow Regional AIDS Center using any of the phone numbers listed on the institution's website.

Chronicle of interruptions

The Treatment Preparedness Coalition has been monitoring procurement since 2010. Alexei Mikhailov is responsible for the project. According to the organization, by the end of June 2016, out of 2,600 auctions across the country, only 62% had concluded a contract. In other cases, officials are either in the process of determining the supplier, or canceled the competition, or the auction did not take place at all - the participants did not submit applications.

The number of failed auctions in 2015 was 13%. In 2016, more than half of the 540 auctions for the purchase of antiretroviral drugs for children and adolescents were not determined in Russia. An example is the situation with the drugs epivir and retrovir, which are supplied by the British pharmaceutical company ViiV Healthcare. For these two drugs alone, a total of 109 auctions did not take place - the company did not participate in these tenders, although it is the only supplier of these drugs in the country. According to experts, the reason for the refusal of applications is that the price set by officials is unprofitable for pharmaceutical companies - in some cases, purchase prices were formed without taking into account inflation and the depreciation of the ruble.

In April 2016, ViiV Healthcare published a letter marked "to all interested parties", in which it said that interruptions in the supply of epivir and retrovir were due to "lack of demand from the customer and timely informing the manufacturer about the planned purchase volumes." In other words, officials did not inform the manufacturer about the required number of drugs, the pharmaceutical company claims. In a letter, Boris Charchyan, CEO of ViiV Healthcare in Russia, indicates that there is simply no epivir and retrovir - the first batches of drugs were shipped to Russia at the beginning of the year, the next shipment will be only in August 2016. It turns out that officials did not guess with demand, manufacturers - with the volume of supplies. As a result, patients - children and adolescents - were left without therapy.

Failed competitions are a situation that is typical not only for children's forms of drugs. In 2016, tenders did not end with the choice of a supplier in more than 40 cases - in the Samara, Ulyanovsk, Novosibirsk, Moscow regions. We asked leaders in the antiretroviral therapy market why companies are not considering lowering prices to save lives. At the end of 2015, R-Pharm, for example, mastered 43% budget funds allocated for the purchase of antiretroviral drugs. The Cosmofarm company has mastered 8% of the budget funds allocated for the purchase of its drugs. The auctions simply did not take place, and the funds allocated for saving people returned to the budget.

officials did not guess with demand, manufacturers - with supply volumes. As a result, children and adolescents were left without therapy.

In addition to interruptions, monitoring fixes an increase in prices for drugs. Not only have prices increased by an average of 14% over the past three years, but the purchase price for the same drug in the regions differs significantly. In 2016, for a unit of the drug lamivudine 150 milligrams, officials in the Chechen Republic paid 16 times more than their counterparts in the Perm Territory. And the price of a pack of efavirenz 600 milligrams purchased for patients in North Ossetia is six times higher than in the Chelyabinsk region.

It would seem that you can save money by purchasing generics (drugs for active substance whose patent protection has expired. - TD). The share of generics at the end of June 2016 is 82% Russian market antiretroviral drugs. But in 2015, in some cases, generics were sold more expensive original drugs. That is, the quality of treatment falls, but the price does not decrease.

Some generics, for example, stavudine (analogous to thymidine - TD), on the contrary, receive special preferences. The World Health Organization has called for the drug to be discontinued due to its high toxicity. But this did not prevent different Russian regions in 2016 to purchase 4.8 thousand annual courses of stavudine. At the same time, the price of the drug at a dosage of 30 milligrams increased by 355% over three years.

“Patient control” notes: given the increase in patients with HIV, the use of generics is inevitable.

“It cannot be said that Russian generics are of poor quality,” Andrey Skvortsov notes. - They work. The problem is that these drugs are out of patent protection. They are old, toxic, with an inconvenient schedule of taking up to five tablets a day.

Schema change

Veronika from Moscow says that she was forced to refuse treatment due to strong side effects domestic generics. The first scheme, drawn up by a Moscow AIDS Center doctor in 2012, included foreign drug efavirenz. He gave a side effect in the form of a rash. From that moment on, Veronica began to change regimens - but each new drug caused more and more side effects. In addition, there were fewer and fewer foreign drugs in each scheme.

Educated as a social psychologist, Veronika worked for a long time with people at risk and was a peer consultant psychologist.
HIV status cannot prevent you from being romantic and cheerful, from falling in love and being loved. Now Veronica looks good, her weight has returned to normal, she is glad that she managed to avoid irreparable changes, such as failed facial muscles from dystrophy

“The fifth scheme also included the Swiss drug trizivir - it caused dizziness, ringing in the ears.”

But all this turned out to be “flowers” ​​compared to the last, seventh scheme, active ingredient which was the domestic generic oletide. Veronica believes that it was because of him that she developed lipodystrophy (specific changes in the shape of the body in people taking antiretroviral therapy. - TD).

“I began to lose weight rapidly,” says Veronica. - Weight dropped from fifty-three to forty-two kilograms. The arms and legs were emaciated, the stomach began to grow. It became painful to sit - there were skin and bones. I knew that with lipodystrophy, a person’s face sinks and a hump grows (“bull hump”, body fat on the neck. - TD). These are physical deformities - I realized that if the situation continues, work in a team due to appearance I can not".

The arms and legs were emaciated, the stomach began to grow. It became painful to sit - there were skin and bones

According to Veronica, she was not diagnosed with lipodystrophy until she herself drew the attention of doctors to the sinister changes in her body. She writes off kidney problems as a side effect of taking drugs - after a course of treatment, she was diagnosed with chronic pyelonephritis.

In March 2015, Veronica made the decision to stop taking drugs. She coordinated her step with the doctor. She hopes that an effective course of treatment will be found for her sooner or later. Interruptions in therapy leave less and less chances for this.

Backup tablet

Those patients who do not have money to survive interruptions are saved by the “first aid kit”. So patients with HIV call the ARV Express project - a reserve exchange fund for drugs. The initiative is completely private - patients donate the rest of the drugs (most often after changing the treatment regimen. - TD) to the general fund, from where they are distributed to those in need.

There are only two such "first-aid kits" in the country, one in the Moscow region, the other in St. Petersburg. From these two points, drugs are distributed throughout the country. In St. Petersburg, the process - both communication with patients and the transfer of medicines - is handled by activist Katerina Singer.

We meet in a cafe on the Petrograd side. While it's pouring rain, Katerina tells me how ARV Express works. I ask where the last parcel went - it turns out, to the Moscow region.

“Sent a bag of drugs for about ten people.”

The Moscow region, according to Katerina, is the only region where there are always interruptions in the supply of drugs. Most often, patients lack kaletra, prezist, combivir and stocrine. In the season of interruptions - in spring and early autumn - the "first aid kit" is rapidly emptying.

Not to toxicosis

Preparations from the "Reserve First Aid Kit" helped Nadezhda from the Moscow Region survive the interruptions. Hope is seven months pregnant. Taking drugs is vital not only for her, but also for the unborn child - it reduces the risk of infection of the baby during childbirth.

“The guys from the First Aid Kit helped me a lot - because of interruptions, I didn’t take drugs for a month,” Nadezhda complains. - Interruptions affected the entire scheme. In March, I did not receive one drug, then two. In May, only one drug was dispensed from the scheme.”

In Nadezhda's scheme - abacavir, prezista, ritonavir and raltegravir, his absence bothered the woman the most - the drug costs 42 thousand rubles in a pharmacy. It is impossible for Nadezhda to change the treatment regimen or skip taking medications - she has high resistance (resistance of the virus to the drug that occurs if treatment is interrupted. - TD). The only way out is to look for the drugs yourself.

“My husband and I spent about 60,000 rubles on therapy,” says Nadezhda. “I would have sued the officials, but there are no receipts - the drugs were obtained from resellers.”

Veronica likes the work of Marina Abramovic. After watching a new film about Abramovich at the Garage Museum

Pregnant Nadezhda and her husband traveled all over the Moscow region in search of drugs.

“Five hundred kilometers is not the limit for us,” she exhales, recalling that sometimes she had to travel to another region for two or three pills.

Raltegravir was obtained only thanks to the “backup first aid kit”. Nadezhda began to receive drugs quite recently - only after a complaint from Patient Control.

Nadezhda will give birth soon, and she hopes that interruptions in therapy will end. Because of them, her pregnancy was already difficult.

“The first four months were hysterical,” she recalls. - I changed the scheme at the beginning of pregnancy - I couldn’t even get up properly from the terrible “side effects”. I can’t even say if I had toxicosis. Maybe I was, but I was lying in a blue-green bed and I don’t remember anything. ”

New experiments

In July, the Center for the Prevention and Control of AIDS near Moscow began an emergency distribution of antiretroviral therapy to patients. According to Alexander Ezdakov, the deadline for August 1 was set with a margin - there is hope that by this date, drugs in the Moscow region will receive all those in need.

“The situation this year is more acute than in previous years. And there is no guarantee that our misadventures will end,” he notes.”

Nadezhda will give birth soon, and she hopes that interruptions in therapy will end. Because of them, her pregnancy was already difficult.

In 2017, the state plans to return to the centralization of public procurement. They will be conducted by Rostec's subsidiary, the National Immunobiological Company (Natsimbio). The company's management promises to almost halve the cost of treatment for HIV-infected people and has already entered into agreements with drug manufacturers Cipla and ChemRar. Time will tell whether the promises will be fulfilled, but a number of experts are skeptical about the prospect of the emergence of a purchasing monopolist.

“I am personally afraid of what will happen next year,” admits Alexander Ezdakov. Why are we being experimented on? As soon as the situation with regional purchases began to return to normal, it is changed again. We are what - guinea pigs?»

Thank you for reading to the end!

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Lyudmila Vins and her husband have been living with HIV for over 17 years. The couple has three children. For many years, Lyudmila and her husband helped other people get used to terrible diagnosis, and convinced that life does not end with him. But since the beginning of this year, when shortages of pills for HIV-infected people began in Russia, Lyudmila herself began to seriously fear for her life:

“Many of the schemes they are giving out now didn’t work for me,” she says. “I’m very scared! Because I have small children, and what if I suddenly die?”

Lyudmila borrows antiretroviral therapy drugs for herself and her husband from friends in other cities or changes. He helps his clients from the emergency first aid kit.

“People come to us: for example, someone died, someone quit therapy, someone was replaced,” says Lyudmila. “They bring us drugs, but they are often expired. This, for example, the drug is valid until June 2017 years. But we give it, of course, to people, and they make a choice. Because it's better to drink expired drugs than to stop altogether."

Interruptions in the supply of pills to AIDS centers appeared in January 2017, when the new scheme procurement of drugs. Previously, the regions provided patients with medicines on their own, knowing their needs and how many patients they had. Now the Federal Ministry of Health is responsible for procurement. He holds auctions and distributes drugs around the country.

As it was officially announced, the Ministry of Health switched to a new scheme in order to save budget money. Like, at large auctions, drug sellers will certainly drop the prices of drugs.

“The shortage was not due to the fact that no money was allocated, but due to the fact that drugs were delivered to the regions in this way,” says Alexei Mikhailov, head of the department for monitoring the treatment of the Patient Control movement. “The purchase took place 5 months later than this "It was with decentralized procurement. The scale of the problem is the whole country, with the exception of some regions where there is good regional funding (Moscow, St. Petersburg, Khabarovsk Territory). Where there is good funding, these regions were able to avoid severe interruptions in the supply of medicines."

In "Patient Control" complaints about interruptions in drugs come from all over the country. Alexey emphasizes that due to the shortage individual drugs, physicians have to change treatment regimens for people. Such a replacement is fraught with severe side effects.

“I had terrible diarrhea, it was simply incompatible with life,” says Karina, a patient at the Sverdlovsk Regional AIDS Center. “Several times she caught me in public places, and I had to run to change clothes.”

Karina is among those patients who, on the advice of doctors, changed their treatment. But the new scheme did not suit the girl. She asked the doctors to return to the old one, but the pills she needs are not available. Therefore, Karina simply stopped taking therapy.

“It turns out that we have now returned to the fact that people who are already ill with HIV ask: maybe I won’t take therapy at all for a couple of years?” says Vera Kovalenko, head of public organization "New life", which helps patients with HIV. - If you can not drink for a month or two, then nothing will happen to me for a couple of years? But we understand that the viral load can grow very quickly, and a person will destroy himself very quickly and cause harm around."

Kovalenko says dozens of patients like Karina have gone through her in the last couple of months. Vera endlessly writes appeals to the Ministry of Health and the Russian government. But so far, officials have had only one answer: there are drugs for HIV-infected people. And formally, they are right: according to the papers, there are really enough pills.

“Maybe they didn’t fully understand the situation?” Kovalenko wonders. “But here’s my answer: there are no problems, there is no shortage. Yes, there are appeals, they understand.”

Activists from Novosibirsk had to picket to receive treatment. And only then the drugs needed in their city appeared.

“Now this drug is definitely not available, it is being changed to some other one,” says one of the picket participants. “And as a result, people have new side effects that they need to experience again.”

Anna, an activist in the community of people living with HIV from Nizhny Novgorod, says that in conditions of shortage of drugs Russian patients they themselves came up with schemes for obtaining tablets. .

Drugs are exchanged through forums and websites, sent by mail, and even borrowed and drink expired drugs. Anna says that she herself, for example, went to St. Petersburg for a batch of expired pills for her comrades.

“We get drugs from India, now they bring a lot of generics from there,” says the woman. S: There are some drugs that are still illegal in our country, and some guys are illegally treated with them. And they also buy generics. "

Anna says that therapy keeps her active, working several jobs, including teaching. But she, too, had severe diarrhea due to the change in regimen. To prevent this from happening again, Anna is trying to get officials to supply the necessary medicines normally, she writes to all authorities. But so far, like her colleagues across the country, she receives only replies.

Present Time prepared this material for broadcast for about two weeks. During this time, the situation with medicines for HIV-infected people has not changed for the better in any region of Russia.

There is already a shortage of medicines in five regions, and in another 22 regions there will be enough medicines for only a month.

Roszdravnadzor has prepared a report on the stocks of medicines for HIV-infected people in the regions. The situation is catastrophic. In five regions there are no necessary medicines, in 22 regions there will not be enough medicines even for a month. Given that the Ministry of Health has not even announced new tenders for the supply, thousands of HIV-infected people will remain without treatment, and pregnant HIV-positive people will give birth to infected children. The report has already been sent to the Ministry of Health.

Reports from the war

According to Life, the analysis was carried out on behalf of the Ministry of Health itself. The report provides concrete examples what medicines are in short supply and where.

"In five regions ... if there is a need, there are no medicines (for example: Ziagen ..., Videx ...), in 22 regions... the stock of medicines (for example: "Nikavir" ..., "Olitid" ..., "Interfast" ...) is less than a monthly requirement "(reduced instructions dosage form and dosages. - Approx. Life).

In the Altai Territory, according to Roszdravnadzor, there is practically no stock of antiretroviral drugs (Combivir..., Kaletra..., Nikavir...), there is a shortage of 36,629 packages of antiretroviral drugs. Five medicines the estimated balance is less than three months("Videx"..., "Amiviren"..., "Intellence"...)

In Moscow, for 10 drugs, the estimated balance is less than three months (Olitid..., Azimitem..., Stag...)

IN Tyumen region for 17 drugs, the estimated balance is less than three months (Ziagen..., Reyataz..., Kaletra..., Prezista...).

The report also names the regions where the least infected people receive medicines.

New purchasing system

Since 2017, the system for purchasing medicines for HIV-infected people has changed. IN last years these drugs were purchased by the regions, now the Ministry of Health should centrally purchase them. The department believes that centralization will help save 8 billion rubles a year.

But the Ministry of Health has not yet announced a single tender for the supply of drugs for HIV-positive people. And, as we see, the regions also did not make stocks for future use. Therefore, HIV-infected people were left without medicines.

The regions recruited new patients with the expectation that the Ministry of Health would make a centralized purchase at the end of 2016, saysrepresentative of the public organization "Patient Control" Andrey Skvortsov. -It turned out that the supply of drugs was quickly used up. The Ministry of Health has not announced any purchases. This is the situation in almost all regions. T tablets just ran out.

There have been interruptions before, of course. Including they happened due to delays in procurement procedures.

Life analyzed the canceled tenders for 2016 for 10 drugs for HIV-infected people (Ritonavir, Stavudine, Lamivudine, Abacavir, Tenofovir, Zidovudine, Phosphazid, Etravirine, Nevirapine) , "Saquinavir") -61 tenders totaling 333 million rubles were obtained.

Not all canceled tenders were re-announced. For example, in 2016, three tenders for Tenofovir were canceled in Crimea (total amount of 42 million rubles). For the whole year, Crimea spent 6 million rubles on Tenofovir.

Cancellation of tenders also affects interruptions, says Andrey Skvortsov. -This means that r The region bought fewer pills than planned.

It is necessary to look at each region separately, but, as far as we know, all regions have spent budget money, almost to a penny. This may indicate that they redirected the money to another drug, - saysAlexei Mikhailov, representative of the International Treatment Preparedness Coalition (ITPC).

As Life previously did, even if there were no supply disruptions, far from all HIV-infected people would receive the drugs. According to the head of the Federal Scientific and Methodological Center for the Prevention and Control of AIDS Vadim Pokrovsky, in 2016 only 30% of HIV-positive people received medication. According to the head of the Ministry of Health Veronika Skvortsova, they are 37%.

Less drugs - more infections

According to ITPC, for the last 2 months to pereboi.ru 49 complaints were received about the lack of medicines for HIV treatment. This is almost twice as much as in the same period last year. Fresh example.

Previously, therapy was given for 3 months. Since 2016, interruptions and replacements of drugs and manufacturers began ... I asked the manager to give me at least 2 months, because by the time the therapy expires I will be out of town on a business trip. The conversation with the manager was recorded on a dictaphone. Literally: “Bring a business trip certificate, there are very few drugs, if I give you, there won’t be enough for others, there are problems with Kaletra now

Viktor, Novosibirsk

According to Andrey Skvortsov, interruptions in treatment lead to the fact that people end up in the hospital with the minimum amount immune cells (50 or less at a rate of 500-1200).

The body is not able to resist any infection, people get tuberculosis, for example, - Andrey Skvortsov said. - If left untreated, may develop oncological diseases, which, as you understand, is fatal in many cases.

At the same time, after interruptions, the old medicines may no longer be suitable for the infected, stronger and more expensive ones will be required.

Let's say, some drugs were purchased, then they ran out, there was an interruption for 3-4 months, and when they began to buy the same drugs again, they are no longer suitable for patients, - says Andrey Skvortsov. “Patients develop resistance and just don't respond to these drugs anymore.

In addition, HIV-infected people left without medicines can transmit the virus to others (for example, sexually, or the mother passes it on to the child she bears). And if an HIV-infected person takes the necessary drugs on time, then, according to Andrey Skvortsov, he "significantly improves his health" and does not pose a danger to other people.

According to the AIDS Center, in the first 9 months of 2016, 75,962 new cases of HIV infection were registered in Russia. In total, 854,000 HIV-positive people are registered in Russia. Every 5 minutes, one person in Russia becomes infected with HIV. Perhaps now it will be even faster.