On the eve of the World TB Day, patients in St. Petersburg are dying due to absence of second-line drugs

Below is a joint press release issued by Patients in Control Movement and Svecha Charitable Fund, and an article by a famous Russian journalist Anastasia Kuzina translated into English.

St. Petersburg. Demonstration Results in the Announcement of an Auction for Unavailable Drugs

A protest demonstration led by activists from the charitable foundation Svecha and the community movement Patients in Control took place in front of the Municipal Committee of Health in St. Petersburg on February 28, 2012. The occasion for the protest was the fact that a number of drugs used in the treatment of tuberculosis are not available in St. Petersburg hospitals. The drugs in question are the so-called second line drugs that are used for treating forms of tuberculosis with multi-drug resistance. This form of TB is unreceptive to basic anti-tuberculosis drugs.

As was made known today, immediately after the demonstration officials announced an auction for the purchase of the drugs aminosalicylic acid, terizidon, cycloserine, and the drug combination cycloserine+pyridoxine – all of which were included in the list of drugs that patients and activists had said were not available.

“For the moment we are just talking about the auction for the needs of one specific hospital. It will take some time, at least a few months, before the drugs are delivered. But just the fact that the auction was announced, even though after activist demonstrations, should be counted as a success, and we can hope that the situation will be resolved and that patients will soon receive the vital drugs that they need,“ said Sergey Golovin, spokesman for the movement Patients in Control.

As a reminder, the day before yesterday, a group of seven people handcuffed themselves to the railing across from the Committee of Health. The protest lasted forty minutes, after which officials approached the activists. Two staff members from the Committee of Health invited the spokesman for Patients in Control to go to their office and start a dialog. Based upon the information received, drug purchases did not take place due to technical problems connected with the finalizing of grant contracts for the purchase of anti-tuberculosis drugs and the transfer of these grants from the federal budget.

At the same time, several officials noted in comments to the press that all drugs were available and that delays related to technical difficulties were only associated with para-aminosalicylic acid. It is therefore all the more remarkable that on the official website for governmental purchases zakupki.gov.ru, an auction was announced not just for para-aminosalicylic acid, but for several other drugs.

Denis Godlevsky, spokesman for Patients in Control: “The catastrophe of the situation is not simply that the drugs aren’t available, but also that this situation will continue for several months, and that the auction was announced only on the day of the demonstration. Today a hospital patient called the charitable organization Svecha and said that a girl died yesterday who needed precisely those drugs which, as it turns out, won’t be available to patients until summer at the earliest. How many more patients do we need to lose? How many street demontrations need to take place so that people won’t die without the treatment that is due to them according to law?“

The activists announced that they plan to continue monitoring the situation with regard to the availability of anti-tuberculosis drugs for patients in St. Petersburg.

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DRUGS FOR THE TREATMENT OF TUBERCULOSIS AREN’T AVAILABLE IN SAINT PETERSBURG

By Anastasia Kuzina

March 2, 2012, 9:32 a.m., Health

Patients are starting to die.

An unauthorized demonstration took place two days ago in St. Petersburg – seven people chained themselves to the railing in front of the Municipal Committee of Health. In their hands they held a sign: “If you sneeze on tuberculosis, it will cough on you“. The reason for the demonstration was the fact that for several months there have been no drugs for the treatment of severe forms of tuberculosis in municipal hospitals. The demonstration broke all records: it lasted forty minutes, the police weren’t interested, but two staff workers from the Committee approached the activists. They admitted that the problem existed, made reference to bureaucratic delays and assured the activists that the problem would be resolved within a week.

One of the patients died on February 29. Another is dying, it’s too late to save her.

-- Information is controlled, doctors have kept silent, but patients themselves say that the drugs haven’t been available since September of last year -- commented Sergey Golovin, spokesman for the movement Patients in Control, about the situation -- People began to actively contact the charitable organization Svecha starting in November-December (among other things, this organization works to aid people with tuberculosis). They called and said that “second line“ drugs weren’t available in several municipal hospitals...

-- Now a woman is dying, who only a few months ago was treated on an outpatient basis“, says Olga, who is undergoing treatment for tuberculosis in one of the hospitals. She asked that the hospital number not be identified, saying that this could cause her to be released -- She can’t be helped now, it’s too late, the doctors said that it’s a question of a few hours. She’s dying simply because there aren’t any drugs. Everyone waited, waited, relatives finally bought the drugs themselves, but it was too late. Yes, and what can you expect, they don’t have basic saline solution, they don’t even put you on an IV. And when I hear officials say that everything is available, I’m just shocked! They’re living in a parallel universe! I just now walked around the ward and took a look about, in the supply cabinet are three of the most basic drugs, all for “first line“ treatment. But in my ward, about fifty out of seventy people need “second line“ drugs. And in all there are eight wards. And practically everywhere people have the open form, resistant TB. They are waiting for an operation on their lungs, but the hospital pharmacy is empty! Even syringes are tracked. And it’s the same in the dispensaries. And this has been going on for a while. There have been stock-outs for a year at least. Two months there are drugs – and then the next month there aren’t any. The doctors are trying to change things, but it’s only making things worse. It’s chemotherapy after all – it really hits all the organs. And tuberculosis isn’t being treated and all the organs are destroyed.... It’s crazy. I hear the officials saying that all the drugs are available and I think ’God forbid that this hits them.’ But they’ll go to Germany to get treated. I get the feeling that the problem of TB in the city is being hushed up.

-- Have you yourself encountered a problem with lack of drugs?

-- Of course! I’ve been going through treatment for a year and a half already. Through a long selection process we came up with a treatment program, it was starting to help, and just when progress set in, when the doctor said, “hurrah“ – the drugs ran out. He put me on a different drug expecting that mine would come in. I asked him directly, “So what does this mean?“ He said, “The disease will continue to progress.“

-- You said that someone died.

-- Yes, a really smart woman. She knew three languages. You shouldn’t think that only marginal types get TB. There are sales clerks, chefs. How can you not treat these people?! They’re in the very prime of life, but they aren’t treated. And it’s a curable disease!

In December and February, Svecha sent requests to the Committee of Health, and activists tried to determine what had happened to the drugs and whether they had actually been purchased in the first place. But they couldn’t find anything about any auctions, and Svecha didn’t receive any response from officials. At the end of February, the cup of patience overflowed and people went out to protest.

-- It’s interesting. On that very day one of the hospitals announced an auction for four drugs! – Sergey Golovin said.

-- And what does that mean?

-- It means there really are no drugs on hand. The auction was only just announced, it will take place in about two weeks, but the drugs themselves will arrive around the beginning of summer.

-- But didn’t officials from the Committee of Health promise to resolve everything in a week?

-- It’s possible that they are planning to get the drugs from another source.

Background Information: Tuberculosis with multidrug resistance (MDR-TB) is a form of tuberculosis in which the main drugs used for treatment (izoniazid and rifampicin) become ineffective because the tuberculosis bacteria acquire the ability to resist them. In such cases, “second line“ treatment is started, using stronger and more expensive drugs. It is these drugs that are currently not available in St. Petersburg.

In Russia, the problem of MDR tuberculosis is highly relevant. Our country takes a leading position in the number of such cases. The northwest region is one of the most disadvantaged in the country, where every fourth case of tuberculosis is drug resistant. According to official data from the St. Petersburg Government Committee of Health, the incidence of all forms of tuberculosis in St. Petersburg in 2010 was 43 per every 100,000 people. Altogether 1,976 patients were registered. On January 1, 2011, the number of patients with the active form plus HIV co-infection was 660, which was 110 more people than at the beginning of 2010.

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Published: March 20, 2012, 11:12 p.m.

Last updated: March 21, 2012, 12:19 a.m.

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