No AIDS medicines

The UN recognized Russia with an epicenter of the world epidemic of HIV. Meanwhile, people living with HIV cannot get their medicines. Merps with therapy threaten not only the lives of the patients themselves

In AIDS-centers-queues. People living with HIV, to whom the state guarantees antiretroviral therapy, cannot get their drugs. Interior interruptions threaten not only the lives of patients themselves. Interruptions contribute to the spread of the epidemic. A person with HIV+status, receiving medicines, cannot convey the virus to anyone. A person who does not receive medicine, maybe. According to the Federal AIDS Center, by the end of 2015, the number of patients with a diagnosis of HIV in Russia crossed a million. In 2015, only 230 thousand people received therapy in 2015, and the increase in new cases compared to 2014 amounted to 8%. Meanwhile, the other day the UN recognized Russia with the epicenter of the world epidemic of HIV. According to Yunaids, Russian regions account for approximately 80% of cases of HIV last year.

On the tablet

To get antiretroviral therapy, which the state gives out for free HIV-infected, Elena needs to get from the village in the suburbs for two and a half hours. But that would not have a trouble. The trouble is that in recent months, a woman is increasingly returning from the AIDS Center for Prevention and Control of AIDS.

According to Elena, interruptions in therapy began back in February 2016 - and if at first they touched the same drug from her scheme, then by spring - all.

“First, they stopped issuing Abakavir,” says Elena. - They promised that deliveries would resume in April, but this did not happen. In the spring, two drugs have not been given to me already-not only Abakavir, but also Ritonavir-100. ”

On June 20, the drug Presistan was added to the list. Elena’s husband also has HIV+ status - with the beginning of interruptions from his scheme, Zidovudin disappeared. Elena says that earlier the therapy was given for two to three months, now almost every week has to go after her-in the hope that the drugs will appear. This is the only way-on the phone to the AIDS center cannot be called. The queue of patients is built on the street. But having defended it in it, most patients are leaving with nothing.

Elena does not blame the doctors of the Center for Prevention and Combating AIDS - she says they became hostages of the situation. The problem is solved in different ways: “Someone frankly lies to his patients and sends it to the“ holidays ”, assuring that it is sometimes useful to live without therapy. Others advise crushing pills. But the doctor is honest with me. Immediately said: "There is an opportunity - buy medicines."

Elena does so - he buys, exchange, collects excess for patients.

Per month, Elena and her husband need 60 thousand rubles for therapy. So many drugs are officially in the pharmacy, but this amount for the family is unbearable. If you buy with your hands, medicines are much cheaper. On the screen of the smartphone, Elena shows me a correspondence with sellers in social networks - in the season, interruptions in the price of the main drugs take off, I have to bargain.

Elena does so - he buys, exchange, collects excess for patients

For her family, Elena is forced to collect "first aid kit" literally by a pack. Sometimes miracles happen - a couple of months ago, the seller in addition to the purchase handed a bag of unnecessary drugs, says Elena. So the family had the long -awaited Abakavir for four months.

Terrible headaches and insomnia, failures in memory torment many HIV-infected ones, these are side effects from therapy or changing therapy photo: Elena Anosova for TD

From interruptions, patients with HIV are saved together.

“I was helped by one public organization for men practicing sex with men,” says Elena. -I even visited them-they gave Ritonavir-100, they would drink coffee, I did not want to leave. Give thanks to Cyril and Mikhail! ”

At a party, Elena left part of the drugs from the “same” package - Zidovudin and Amivren. The rest was transferred on the chain further - to the tuberculosis dispensary, familiar to the doctor. There, without the treatment of 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 no longer return to her life. Four years ago, Elena, in her own words, “was subsidissional to the grave board” - the virus moved to the AIDS phase. (HIV-dissidents deny the existence of a human immunodeficiency virus and neglect treatment.-TD)

The HIV-positive Elena made a man with whom she had "had love for two years." Then she found out that her partner could not know about her diagnosis-he was registered with an AIDS center and signed the paper that he was criminal for infection of HIV infection (punishable by restriction of freedom for up to three years.-TD). The man picked up the virus from a friend, in the past of the prisoner, with whom they pricked one syringe. Elena forgave her partner, did not hold accountable - now he has a family and two children. And then it seemed that life was over. “She cried and could not stop - there was no napkins, wiped her face with a curtain,” she recalls.

Soon Elena stopped going to the doctor - "read the Internet that HIV is a mystification." “It was easier for me,” she sighs. In 2010, Elena passed the analysis and found out that she began the AIDS stage.

The man picked up the virus from a friend, in the past of the prisoner, with whom they pricked one syringe. Elena forgave her partner

“She did not even take therapy even then,” she says. “In 2012, I practically stopped walking, my hair fell out, I turned into a skeleton.”

Elena was brought to the hospital at the ambulance, they kept a month on a dropper. That was her path to taking status - she began to take therapy. But at first it was no better, Elena was diagnosed - an open form of tuberculosis.

“My nine months of hell began,” Elena recalls. - I drank more than twenty tablets per day, but nothing acted. Despair came-how otherwise, when you see how people and without HIV status from tuberculosis die ... They lie with tags with stacks with tags. ”

For the sixth month, Elena had an improvement. She issued disability. More to the tuberculosis dispensary did not return.

“I do not want to go back to the tuberculous clinic,” Elena says quietly.

Hope not to return to the Tubdispinator Elena gives antiretroviral therapy. With which in the Center for the prevention and combating of AIDS - interruptions in the Center for the prevention and combating.

Patients control

Elena is one of thirty patients who, having united, wrote a statement to Roszdravnadzor on behalf of the organization “Patient Control” demanding to conduct an audit at the Center for Prevention and Control of AIDS.

In the statement, patients complain that interruptions in antiretroviral drugs last for four months, even children and pregnant women are refused treatment. Activist of Patient Control, Alexander Dzdakov, says that after the appeal, Roszdravnadzor conducted an unscheduled audit in the AIDS-Center near Moscow and in the regional Ministry of Health. The interruptions were ordered to be eliminated by August 1. But they will hardly disappear forever.

Elena calls her husband an angel-guardian, he is the only person who was nearby in all difficult times photo: Elena Anosova for TD

Interruptions with antiretroviral therapy for HIV treatment are a problem not only of this summer. In 2013, the Ministry of Health transferred the purchase of drugs to regional ministries of health. Interruptions occurred before, but after this decision became commonplace.

According to the activist of the “Patient Control” movement Andrei Skvortsov, at that time the decision looked reasonable. The previously current scheme of centralized purchases, in which the Ministry of Health purchased drugs for the needs of the regions, was not optimal: the department arbitrarily cut the applications received from the regions, and hardly coped with the task of distributing purchased drugs by regions. In the field, patients often received the wrong drugs, not in that volume and with delays.

But “decentralization” has only aggravated the situation with interruptions - for three years a number of regions have been purchasing drugs with delays that reach four months.

“There are several reasons, including banal negligence,” says Andrei Skvortsov. - The local officials were not ready that such responsibility would fall on them. There is no priority - at first they buy bandages and rags for ordinary patients, and then - antiretroviral therapy, which a person living with HIV should take all his life without interruptions. Other reasons are the pricing policy of distribution companies, the lack of competition in procurement, the corruption component. ”

So sad the situation is not everywhere. In the regions where the purchases are carried out by the AIDS centers themselves, they try to purchase drugs on time and at reduced prices, Skvortsov notes.

"Decentralization" has only aggravated the situation with interruptions - for three years a number of regions have been purchasing drugs with delays

Messages about the lack of drugs in their region, patients with HIV leave Pereboe.ru on the website. According to Skvortsov, in 2016 the distress signals came from more than 30 cities of Russia. Patients from Moscow, Omsk, Tula, Kaliningrad, Arkhangelsk, Ufa, Tver, Novosibirsk, Podolsk, and Togliatti faced the problem. A mammary in this list is the Moscow region. Despite the proximity to the capital, this year there were perhaps the most serious delays.

“Railed the deadlines,” Squorts spreads his hands. - In February, nine auctions were announced, three of which did not take place. Six drugs were purchased - there were no contest for the rest of the 40 items. ”

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

Why did you manage to carry out auctions only after the intervention of Roszdrav? Why was a murderous decision not to rush to purchase drugs? We did not receive an answer to this question from the Moscow Regional Center for AIDS. The head physician of the center Alexander Pronin hung up as soon as he heard the question about interruptions. As the patients warned, we were not able to get through to the Moscow Regional Center for AIDS on any of the telephones indicated on the institution’s website.

Chronicle of interruptions

The Coalition for Readiness for Treatment has been monitoring procurement since 2010. Alexey Mikhailov is responsible for the project. According to the organization, by the end of June 2016, out of 2600 auctions throughout the country, only 62%ended with the contract. In other cases, officials are either in the process of determining the supplier, either the competition was canceled, or the auction did not take place at all - the participants did not apply.

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

In April 2016, VIIV Healthcare published a letter marked “All interested parties”, which reported that interruptions in the supply of epivir and retrovir are associated with “the lack of demand from the customer and timely informing the manufacturer about the planned volumes of procurement”. In other words, officials did not inform the manufacturer about the required number of drugs, the pharmaceutical company says. In a letter, VIIV Healthcare CEO in Russia, Boris Charchyan, 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 intake will be only in August 2016. It turns out that officials did not guess with demand, manufacturers - with supply volumes. As a result, patients and adolescents were left without therapy.

Flapsed contests are a situation that is characteristic not only for children's forms of drugs. In 2016, the competitions did not end in the choice of a supplier in more than 40 cases - in the Samara, Ulyanovsk, Novosibirsk, Moscow regions. About why companies do not consider the possibilities to reduce prices in order to save people's lives, we asked the leaders of the antiretroviral therapy market. According to the results of 2015, the R-Farm company, for example, has mastered 43% of budget funds allocated for the purchase of antiretroviral drugs. The Cosmofarm company has mastered 8% of budget funds allocated for the purchase of its drugs. There were simply no auctions, and the funds allocated to save 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 the increase in prices for drugs. Not only in the last three years, prices have increased by 14%on average, but the purchase price of the same medicine in the regions differs significantly. In 2016, officials paid 16 times more than their colleagues in the Perm Territory for a unit of Lamivudin of 150 milligrams of 150 milligrams. And the price of the packaging of Efavirenza 600 milligrams purchased for patients of North Ossetia is six times higher than in the Chelyabinsk region.

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

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

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

“It cannot be said that Russian generics are poor -quality,” said Andrei Skvortsov. - They work. The problem is that these drugs have come out of patent protection. They are old, toxic, with an uncomfortable reception schedule - up to five tablets per day. ”

Change of scheme

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

Having received the education of a social psychologist, Veronica worked for a long time with people from risk groups and was an equal psychologist.
HIV status cannot interfere with being romantic and cheerful, fall in love and be loved. Now Veronica looks good, the weight has returned to normal, she is glad that she managed to avoid irreparable changes, such as the failed muscles of the face from dystrophy photo: Elena Anosova for TD

“In the fifth scheme there was also a Swiss drug Tsizivir - it caused dizziness, ringing in his ears.”

But all this turned out to be “flowers” ​​in comparison with the last, seventh scheme, the active component of which was the domestic generic Oletid. Veronica believes that it was precisely because of him that she began lipodistrophy (specific changes in the shape of the body in people taking antiretroviral therapy.-TD).

“I began to lose weight rapidly,” says Veronica. - The weight fell from fifty -three to forty -two kilograms. Hands and legs were fucked up, the stomach began to grow. It became painful to sit - there were skin and bones. I knew that with lipodistrophy, a person has a face and a hump (“bull hump”, fat deposits on the neck. - TD). This is physical ugliness-I realized that if the situation continues, I can’t work in a team because of the appearance. ”

Hands and legs were fucked up, the stomach began to grow. It became painful to sit - the skin and bones remained

According to Veronica, she was not diagnosed with lipodistrofia until she herself drew the attention of doctors to ominous changes in the body. She attributes to the side effect of taking drugs and problems with the kidneys - after the course of treatment, she was given chronic pyelonephritis.

In March 2015, Veronica decided to abandon the drugs. She agreed on her step with a doctor. She hopes that an effective course of treatment will sooner or later pick up her. Interruptions with therapy are left less than a chance for this.

Reserve 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 of drugs. The initiative is completely private - patients give the remains of drugs free of charge (most often after changing the treatment regimen. - TD) to the general fund, from where they are distributed according to those in need.

Таких «аптечек» всего две на страну, одна в Московской области, другая — в Петербурге. Из этих двух точек препараты разлетаются по всей стране. В Петербурге процессом — и общением с пациентами, и пересылкой лекарств, занимается активист Катерина Зингер.

Мы встречаемся в кафе на Петроградской стороне. Пока идет проливной дождь, Катерина рассказывает мне, как работает «АРВ Экспресс». Я спрашиваю, куда ушла последняя посылка — оказывается, в Московскую область.

«Отправила мешок препаратов примерно на десять человек».

Московская область, по словам Катерины, единственный регион, где перебои с препаратами бывают всегда. Чаще всего пациентам не хватает калетры, презисты, комбивира и стокрина. В сезон перебоев — весной и в начале осени — «аптечка» стремительно пустеет.

Не до токсикоза

Препараты из «Резервной аптечки» помогли пережить перебои Надежде из Подмосковья. Надежда на седьмом месяце беременности. Прием препаратов жизненно важен не только для нее, но и для будущего ребенка — он снижает риск заражения малыша при родах.

«Ребята из “Аптечки” очень помогли — из-за перебоев я месяц не принимала препараты, — жалуется Надежда. — Перебои затронули всю схему. В марте я не получила один препарат, потом — два. В мае выдали всего один препарат из схемы».

В схеме Надежды — абакавир, презиста, ритонавир и ралтегравир, его отсутствие беспокоило женщину больше всего — в аптеке препарат стоит 42 тысячи рублей. Менять схему лечения или пропускать прием препаратов Надежде нельзя — большая резистентность (устойчивость вируса к препарату, возникающая, если прервать лечение. — ТД). Единственный выход — искать препараты самой.

«Мы с мужем потратили около 60 тысяч рублей на терапию, — рассказывает Надежда. — Подала бы в суд на чиновников, но нет чеков — препараты добывали у перекупщиков».

Веронике нравятся работы Марины Абрамович. После просмотра нового фильма об Абрамович в музее «Гараж» Фото: Елена Аносова для ТД

Беременная Надежда с мужем объездила все Подмосковье в поисках препаратов.

«Пятьсот километров для нас это не предел, — выдыхает она, вспоминая, что порой за двумя-тремя таблетками приходилось ездить в другой регион».

Ралтегравир удалось достать только благодаря «резервной аптечке». Препараты Надежде начали выдавать совсем недавно — только после жалобы «Пациентского контроля».

Надежде скоро рожать, и она надеется, что перебои с терапией закончатся. Из-за них ее беременность и так была тяжелой.

«Первые четыре месяца прошли в истерике, — вспоминает она. — Мне поменяли схему в начале беременности — я даже встать толком не могла от жутких “побочных эффектов”. Не могу даже сказать, был ли у меня токсикоз. Может, и был, но я провалялась в кровати сине-зеленая и ничего не помню».

Новые эксперименты

В июле в подмосковном Центре по профилактике и борьбе со СПИДом началась экстренная выдача антиретровирусной терапии пациентам. По словам Александра Ездакова, срок к 1 августа был установлен с запасом — есть надежда, что к этой дате препараты в Подмосковье получат все нуждающиеся.

«Ситуация в этом году острее, чем в прошлые годы. И нет никакой гарантии того, что наши злоключения закончатся, — замечает он».

Надежде скоро рожать, и она надеется, что перебои с терапией закончатся. Из-за них ее беременность и так была тяжелой

В 2017 году государство планирует вернуться к централизации госзакупок. Проводить их будет дочка «Ростеха» — Национальная иммунобиологическая компания («Нацимбио»). Руководство компании обещает снизить стоимость курса лечения для ВИЧ-инфицированных почти в два раза и уже заключила соглашения с производителями препаратов Cipla и «ХимРар». Будут ли исполнены обещания — покажет время, но ряд экспертов смотрит на перспективу появления монополиста-закупщика скептически.

«Мне лично страшно, что будет в следующем году, — признается Александр Ездаков. Почему на нас ставят эксперименты? Как только ситуация с региональными закупками стала приходить в норму, ее снова меняют. Мы что — подопытные кролики?»

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