Patients in Control: The Fight for the Right to Life
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23.05.2012

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In fact, the legal right to quality health care that is guaranteed by the government is only implemented in our country on a very selective basis.  But when a person suffers from an illness that is chronic or potentially fatal and yet doesn’t receive appropriate treatment or care, this violation of the patient’s rights can pose a direct threat to life. How can this risk most effectively be counteracted? From the point of view of members of the public initiative Patients in Control: unite and work together.
 
Why access to drugs is so important
The informal movement Patients in Control was founded in 2010 by people with HIV, viral hepatitis and other illnesses, along with people who wanted to defend their rights. The catastrophic situation that had arisen in that year with regard to HIV treatment greatly helped to unite the activists – people in many regions throughout Russia were simply not able to obtain the vital medications that were due to them according to law. It is here worth recalling a few facts about HIV. Contrary to myth, if the human immunodeficiency virus is detected in a person, it is by no means a fatal diagnosis. Special drugs – so-called antiretroviral therapy – prevent HIV from developing into AIDS and therefore, a person infected with this virus can nonetheless live to old age. There is however one very important condition:  once a person starts taking the drugs, he must continue to do so regularly, every day, following a very strict regimen. Otherwise, the drugs will sooner or later stop working, the virus will mutate and begin to multiply, which will lead to a sharp deterioration in health and eventually death. Antiretroviral therapy is supposed to be available to people with HIV at no cost – that is the law. However, the fact is that this right is by no means observed everywhere and therefore, in order for people to survive, this right must be defended.
 
Activists in action
The activists of Patients in Control have been forced to undertake different measures to defend their right to life. These include:
-     A symbolic funeral procession for treatment and prevention in front of the headquarters of the Ministry of Health in Moscow (captured in a video clip called: The Ministry of Health is a funeral Bureau);
-     Demonstrations against the unavailability of vital medications and tests in various regions in Russia;
-     Collection of statements from patients about the unavailability of drugs;
-     Appeal to the Prosecutor’s Office and the courts;
-     Round tables with doctors and officials.
 
Currently, the main goal of Patients in Control is to work with the Ministry of Health – a department, around which recently a number of issues have flared up, from the acquisition of furniture at a cost of five million rubles and the lobbying interests of certain pharmaceutical companies to drugs and test kits that weren’t purchased. Last year, for example, after the relevant appeals were filed, the Prosecutor’s Office announced that numerous violations had been committed by the Ministry of Health when carrying out auctions for the procurement of drugs treating HIV.
 
Not a protest movement
However, despite the necessity of such harsh measures, activists particularly emphasize that they are not a protest movement. Patients in Control stands up for the quality and availability of treatment for all people and always supports doctors and other health workers. The appeal made by Patients in Control to the country’s medical community on the threshold of the Pirogovski Congress speaks to the fact that, among other things, "only the combined efforts of doctors and patients will create that driving force with which it will be possible to build a better system and thereby stop the spread of the epidemic."
 
It has been necessary to resort to unauthorized activities. Members of the movement explain the reason for this quite simply: if we don’t, nothing will be accomplished. "We write inquiries, we make phone calls, we approach the mass media, we send letters to the Prosecutor’s Office – all to no avail. We aren’t taken seriously. Furthermore, we’re publicly referred to as people with unbalanced minds," says one of the movement’s members. "But we aren’t looking for any conflicts. We just want people to hear our problems and for steps to be taken so that these problems can be solved.”
 
Meanwhile, as the officials say unsavoury things about the activists, Patients in Control continues to keep on working. The daily agenda never runs dry. Members of movement still continue to receive information about the unavailability of drugs for the treatment of HIV, tuberculosis, and hepatitis C, and test kits to monitor patients’ health in various regions of Russia. One of the recent cases is stock-outs of medicines for treating multi-drug resistant tuberculosis in St. Petersburg. This means that Patients in Control will continue its work. The Patients in Control activists themselves say that they want to unite with other patient organizations. Recently, people with diabetes facing similar problems and complaints appealed to the Ministry of Health. Both for them and for people with HIV, the fight for the recognition of their legitimate rights to access to medicine is without exaggeration a fight for the right to life.
 
Read more about the activities of “Patients in Control”: www.pereboi.ru , http://packontrol.livejournal.com