Treatment not available to everyone

For some reason, hepatitis C is not one of those diseases (unlike, for example, HIV or tuberculosis), at the mention of which the average person usually shudders and bad images fly through his head. This may be due to the fact that the first thing that comes to mind when hearing the word hepatitis is jaundice (i.e. hepatitis A), which does not cause any terrible associations. Or maybe because hepatitis C, although not always, can be treated, and it, like HIV in its time, was not made into a “plague of the 20th century.” Although this is probably not particularly interesting to the average person.

Nevertheless, hepatitis C is one of those diseases that the public should treat with much greater attention and concern, especially in the countries of our region - Eastern Europe and Central Asia (EECA). Why? Yes, if only because in the EECA region about 10 million people live with this disease ( [1] ), approximately 40% are not even aware of their disease ( [2] ) (therefore, hepatitis C is often called the “gentle killer”), and many of them die from this disease and its consequences every day (an estimated 350,000 people worldwide per year ( [3] ). After all, not only the public, but also the health care systems in most countries in the region do not pay attention to this disease. Thus, in Ukraine, Kyrgyzstan, Uzbekistan, Azerbaijan and Armenia in 2011, zero people received hepatitis C treatment at public expense, in Moldova 200, and in Belarus – 14 ( [4] ). In Russia, treatment for hepatitis C is available free of charge only for co-infection with HIV, but tests must be done at your own expense. In general, getting treatment for hepatitis C is very difficult. But not everyone can receive treatment at their own expense: the average cost of a course in EECA countries is about 15,000 US dollars.

To clearly illustrate the difficulties our countries face on the way to accessing hepatitis C treatment, I would like to tell the story of Marina and Svetlana from Uzbekistan. The story, thank God, has a happy ending, but everything could have been completely different...

Marina's story

Marina lives in Uzbekistan, a small city near Tashkent. 10 years ago, Marina, who was 18 years old at the time, was diagnosed with intrauterine fetal death in the fifth month of pregnancy. During the operation, she experienced uterine bleeding and required an emergency blood transfusion. Four donors responded promptly, and Marina miraculously remained alive. But a month and a half after the operation, it turned out that during a blood transfusion she was infected with hepatitis C (1b). Marina’s life was in great danger at the time of the operation; minutes were counting, and the donor blood was not properly checked for infections.

Marina and her mother Svetlana were told that hepatitis C is a chronic and incurable disease, that every year their daughter’s condition will worsen, and the only thing that can be done in this situation is to carry out maintenance therapy with hepatoprotectors. For the next eight years, Marina did not receive any treatment, except for the courses of “Gemodeza” (six years later replaced by saline solution) and “Essentiale Forte”. Two years ago, after the results of the next examination, Marina was strongly recommended to start treatment (the viral load had increased sharply). This is how Marina and her mother learned that there are drugs to treat hepatitis. But when it turned out that a course of treatment with Pegasys and Ribavirin in Uzbekistan costs about 20 thousand dollars, the hope that had just appeared evaporated - Marina’s husband receives 100 dollars a month, there is unemployment in the country, Marina cannot get a job, and they in the arms of a small child. There was no way to get such a huge amount.

However, something had to be done, and Svetlana moved to Moscow, where she got a job as a nanny for $500 a month. Thanks to this, but mainly thanks to the help of three Russian charitable foundations ( the Tradition Foundation , the Creation Foundation and the Addresses of Mercy Foundation ), Svetlana managed to purchase 20 ampoules of Pegasys and nine ampoules of Pegintron, and in the beginning In 2012, Marina finally began to receive the long-awaited treatment.

It would seem that’s all, happyend. But, unfortunately, no. Over the course of three months, Marina received 14 Pegasys injections, and after receiving negative test results for HCV, the doctor decided that the course of treatment could be completed. Those. I just stopped treatment. After 1.5 months, a screening test showed that the viral load was even higher than before therapy. According to the doctors, it was urgently necessary to start a new course, now consisting of 48 injections.

And it all started all over again! Marina had 15 injections left after the unfinished course, they turned to relatives and friends, went into big debt - and got 17 more ampoules. But they still lacked 16 ampoules for the full course. It was at this stage of their battle for the treatment of hepatitis C that I met Svetlana.

How we searched for drugs all over the world

In July 2012, Svetlana, on the recommendation of employees from the Addresses of Mercy Foundation, turned for help to the Moscow Foundation named after. Andrey Rylkov (FAR) with a request to help get funds for the remaining 16 ampoules. FAR did not have such an opportunity, but there were contacts of organizations that deal with the issue of advocating access to hepatitis C treatment in the countries of the region, so Svetlana was redirected to the Eurasian Harm Reduction Network (EHRN) (Lithuania).

The first thing we tried to do was to find those who could help Svetlana and Marina directly in Uzbekistan. Together with the FAR, we wrote letters to all contacts in Uzbekistan, including charitable non-profit organizations, patient organizations, UN offices and the Global Fund Grants Management Unit. But all that was achieved was to get Marina a small financial assistance in the amount of $100. True, colleagues from the International Treatment Preparedness Coalition in Eastern Europe and Central Asia (ITPCru) and the St. Petersburg branch of the Express First Aid Kit project were very helpful, who, having heard about the situation of Svetlana and Marina, helped get the entire course of ribavirin for free ( [5] ).

Then we decided to obtain for Marina the drugs necessary to complete the course of treatment from the pharmaceutical companies that produce them - Merck and Roche, which, being monopolists of the pegylated interferon (PEG-INF) market - core component of the most effective hepatitis C treatment regimen available today, continue to keep prices for a standard 48-week course of treatment at a level unacceptable to most people.

At the beginning of October, official letters from EHRN were prepared and sent to the main offices of these companies describing the situation with access to hepatitis C treatment in the region in general and Marina’s situation specifically, as well as with a request to help her and, if not provide the remaining drugs for free, then at least would reduce the cost of drugs to $1,000 for the remaining 16 ampoules. Colleagues from the Community Advisory Council on Access to Treatment in Ukraine ( UCAB ) helped us get some contacts of pharmaceutical companies. At the same time, direct appeals were sent from Svetlana to the management of pharmaceutical companies, and press releases on this topic were prepared and distributed through all available information channels.

We received answers from pharmaceutical companies quite quickly - within two weeks. The Merck representative for Kazakhstan and Central Asia responded with a letter on official letterhead with a promise to help and provide the necessary amount of Pegintron, and in the event that Roche could not help with Pegasis (Marina had already started the Pegasis course by this time and it was advisable to complete it, not switching to Pegintron). However, colleagues from Roche behaved differently. After lengthy correspondence and telephone calls, the head of the Commercial Operations Department of the Moscow office of Roche, Anna Frank, told Svetlana and me during another call that providing Marina with treatment free of charge or on the terms we proposed would be discrimination against other patients who need treatment. And the only thing they can offer is to provide every fourth injection free of charge. Those. Svetlana was offered to purchase 12 injections at her own expense (one injection costs about 400 dollars, i.e. only 4800 USD). And don’t think that this was some kind of exclusive offer for Marina and Svetlana - they simply have such an option as part of their patient support program. It is interesting that just on the day of our conversation with Anna, an action of the Patient Control movement took place opposite the Moscow office of Roche under the slogans “Roche. Prices are killing" and "Stop shoveling money" with a demand to reduce prices for peginterferon alfa-2-a.

Having actually received a refusal to help from Roche, we turned to Merck again. It was the end of October. Merck's representative, Nikolai Barkov, confirmed the company's readiness to help Marina and the bureaucratic process of formalizing this assistance began. It lasted no less than three months, and during this time we thought more than once that nothing would work out and Marina would not have time to receive the drugs by the required date (since she had the drugs available until the end of January 2013). But Nikolai kept his promise (for which I thank him very much) and in early February Marina was finally able to get a prescription from her doctor for the first 4 free injections. True, by this time Svetlana, with the help of another Russian fund, was able to get some more ampoules as a safety net .

Epilogue

In general, now Svetlana and Marina seem to be doing well and it seems that Marina will be able to successfully complete the course of treatment this time. So far the treatment results are positive. But if you look at how much effort and time had to be spent on this, how many people and organizations from different countries needed to be involved in this process, you can’t help but think that somehow this is all not organized correctly, it shouldn’t work like that. That, it would seem, with all the achievements of modern medicine, the existence of drugs, protocols, not to mention all sorts of declarations, international conventions and millennium development goals, people still have to literally fight for their lives, defending the right to access to treatment. And not every Marina has a mother like Svetlana, who, without any important connections and necessary contacts, without even access to the Internet and working as a nanny for $500 a month, will be able to raise awareness of dozens of organizations in different countries of the world and get drugs to treat his daughter. And how many other such people are currently in a similar situation and cannot receive treatment, because... do pharmaceutical companies consider it discriminatory to help them (while writing off and destroying tons of drugs that have not been sold and whose expiration dates are coming to an end - this is normal, this does not discriminate against anyone)? I'm not even talking about the fact that for many, even with medications, undergoing a full course of treatment for hepatitis C (which may not be successful) is already a feat, because... This is a very toxic treatment associated with many side effects including psychopathological disorders, and many discontinue it, unable to complete it.

It’s unclear what to do with all this. But, probably, we need to knock on the doors of pharmaceutical companies, ministries of health and convey to officials and businessmen the idea that something is not working for them, that this system needs to be changed, providing low-threshold access to treatment to those who need it, but not can afford it at his own expense. And the more people defend their right, and the right of their loved ones, to health, as Svetlana did, the faster it will be possible to achieve some positive changes.

[1] Leila Reid, Daisy Ellis, Simona Merkinaite. Hepatitis C transmission and injecting drug use: harm reduction responses. Eurasian Harm Reduction Network. 2010.

[2] Merkinaite S, Lazarus J, Gore C. (2008). Addressing HCV infection in Europe: Reported, estimated and undiagnosed cases. Central European Journal of Public Health. 16 (3): 106–110.

[3] World Health Organization. (2009). Viral hepatitis: Report by the Secretariat. World Health Organization Executive Board 126th Session. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA63/A63_15-en.pdf (accessed 18th May 2010)

[4] Data from the Eurasian Harm Reduction Network, source links available upon request.

[5] Ribavirin is a drug prescribed in combination with peginterferons, and this regimen is recognized as the modern standard for the treatment of chronic hepatitis C in developed countries. But the cost of this drug is only a very small part of the cost of the entire course of treatment.