President of the ECUO Vladimir Zhovtyak talks, in his blog, about the main issues to be discussed at the working meeting of the ECUO communities, which will be held on the 6th of September in Poland.
During the first working week of autumn, representatives of ECUO organizations will come for the working meeting to Poland in order to coordinate the community joint actions on increasing access to modern effective antiretroviral drugs for people living with HIV.
In each country of Eastern Europe and Central Asia there are HIV treatment programs implemented and they not only save lives but also serving as critical investment for the prevention of HIV transmission: since a HIV-positive person taking antiretroviral therapy does not transmit HIV due to the low amount of the virus in the body as it is not enough to transmit HIV even during sexual intercourse.
Historically, Eastern Europe and Central Asia faced the HIV / AIDS epidemic a little later than countries of Africa, Western Europe and the United States, and for this reason we received life-saving antiretroviral treatment later. Whereas people in Europe have stopped dying already, EECA countries have just started to implement life-saving antiretroviral therapy. Those drugs and forms of treatment were brought to EECA region, which in Western Europe and the United States had been used less. Unfortunately, they are toxic and come with unwanted side effects.
Nowadays, whereas in the developed countries, integrase inhibitors are used in first-line therapy, full range of antiretroviral drugs used in the West is still not available in Ukraine, Russia, the Caucasus and Central Asia.
One of the main problems of the region is the lack of the funds needed for purchasing antiretroviral drugs due to the inability of the system to cover all HIV-positive people with treatment and social support programs as well as treatment adherence programs. What does this mean?
In the EECA region the most affected by HIV groups are so-called vulnerable groups: people who inject drugs, sex workers, men who have sex with men and others. These groups are often marginalized and stigmatized by society, including also medical personnel. It means that representatives of these groups, as a rule, lack confidence in the health care system, they do not have HIV identified in time, and as a result, they receive treatment late and, unfortunately, not all of them. Thus, the epidemic goes beyond the vulnerable to HIV groups transmitting through sexual partners. At the moment, most persons newly diagnosed with HIV are those ones who are already better off: office workers, housewives, managers, and drivers – it can be anyone who surrounds us in everyday life. These people believe they never can have been infected with HIV, so they don’t go to get tested for it in time, and HIV, as a result, is detected at a late stage. And then it is already very difficult to do something in time, because as HIV progresses to AIDS stage, new symptoms of HIV-related diseases appear which should be treated with other drugs.
Turning to the issue of antiretroviral drugs as an antiretroviral treatment issue let me say of what has been happening regarding it in EECA countries. In 2013 WHO stopped issuing regional treatment protocols, particular for our region.
Instead, the World Health Organization has started issuing guidelines – international standards for the treatment, and this is not a protocol, but, more likely, a generalized approach to treatment. As a rule, the global guidelines are aimed at the most poor countries, which should save the situation at the lowest possible cost. EECA countries happened to be in the middle between those standards of treatment that are applied to the countries in Africa and the best treatment practices existing in Europe and the USA. Nowadays, the treatment standards in EECA countries go down.
WHO recommends Efavirenz as the main drug of the first choice in the first line of treatment, as a result of which the countries, referring to the protocols, started to replace more modern high-quality drugs causing fewer side effects to the body and transfer to “cheap” old ones, in particular Efavirenz. At the same time, we observe that patients are being transferred to this treatment, disrupting both medical approach and WHO standards.
What are we talking about? Efavirenz is a very old drug that has been used in our region since the early 2000s. It happened that many people quitted treatment due to different reasons, including severe side effects, mental disorders, and then virus continued to spread.
Therefore percentage of HIV-positive population has become resistant to this drug. It means this drug wasn’t effective against HIV for these people, because they had already been transmitted a mutated virus against which Efavirenz was not effective.
It is medically recommended when transferring a person to another medicine to do a number of medical tests, including drug-resistance testing and viral load testing. Most commonly, that testing is not done and in most of EECA countries people are treated with the drug, but it doesn’t have effect and people don’t feel better. The drug causes very severe side effects, including changes in consciousness that prevent people from living a full life. For example, the average cost of drug-resistant testing in Ukraine is $ 500.
In principle, we don’t mind using Efavirenz, as in some cases it is highly effective and quickly reduces the viral load. The drug was invented a long time ago; its developers were concerned about saving lives of patients, rather than about its quality.
If we want to stop the HIV / AIDS epidemic in EECA region, then we should also bear in mind the quality of life of people taking antiretroviral therapy. It is important to have people taking this treatment satisfied with the quality of their life.
Realizing the difference in approaches to the ARV treatment in EECA countries and in Western Europe, at the moment we are focused on increasing the access to modern effective antiretroviral drugs for HIV-positive patients.
We do not talk about certain brands, since in the world there exist generics equivalent to modern effective drugs, and companies that own the brands transfer rights for selling and producing the drugs to generic companies.
Therefore, in Poland we will hold a coordination meeting and discuss with representatives of high-reputation international organizations and research institutes how access to modern drugs for HIV-positive people can impact and bring the epidemic to an end.
We believe HIV transmission cannot be eliminated unless HIV-positive peoples start to be treated with drugs with which they can live taking them every day.
We conducted a survey in Ukraine, which indicated that in 2016 the treatment scheme for 21% of respondents was changed with no regard to medical reasons. They were transferred to the abovementioned drug “Efavirenz” and that more than a half of the respondents started feeling worse. Therefore, we forecast increasing risk of having patients who refuse taking antiretroviral therapy, which will lead to an increasing of resistant virus transmission. And, in its turn, Eastern Europe and Central Asia will face a new outbreak, whereas in the rest of the world the epidemic is reducing.
To explain how it happens let me give an example. It can happen that a person is transferred from one drug to another only for the reason that the drug they usually take either hasn’t been purchased or hasn’t been supplied in time to health facilities with a delay. Doctors become hostages of the situation, and on different pretexts are forced to change the treatment scheme. Thus, most people start feeling worse and get disappointed in antiretroviral therapy. As a result, they quit taking drugs, continue to transmit the virus, and die.
There is no way to reach 90-90-90 targets without taking into account the quality of life of patients!
Our meeting in Poland will be the first border to overcome to prevent millions of HIV-positive people in Eastern Europe and Central Asia from stigmatization, discrimination by governments when HIV-positive people are transferred from one drug to disregarding medical evidence. This looks like discrimination happening to people at the place of residence.
We strongly believe that in Europe- and we are a part of it- there should not be double standards in treatment.