The Ministry of Health of Republic of Serbia has sent an official written reply to our organization to the open letter the Q-club has sent to all relevant institutions in our country. The letter was signed by the Deputy Minister, Dr Dubravka Šaranović Racić, and it concerns only one of the five key issues people in Serbia we have identified. All of the issues are in exclusive or partial jurisdiction of the Ministry. That makes the Ministry one of the pivotal institutions for solving those problems. But the ministry has only responded to the problem of lack of modern therapies for HIV treatment. In the reply the Ministry said, among other things, that the list of the Republic Healthcare Fund contains 23 different medicines, thus providing “very good” availability of modern medication.
The complete letter can be found here
The list of the Republic Healthcare Fund is available on: http://www.lat.rfzo.rs/index.php/lista-lekova/pretraga-liste-lekova.html. It is obvious that the list contains only 14 different medicines for HIV treatment, and if we take a look at the brands of the same medicine, there are even less. No new medicines (molecules) have been added to the list since 2004. So it is obvious that our system doesn’t have and needs most of the HIV treatment medicines according to the national guidelines for HIV treatment, adopted by our national HIV/AIDS committee. A lot of medicines that are missing are from the first line of treatment, which is the initial therapeutic option. Thus, we can’t talk about having modern therapies – furthermore we don’t even have the basic one available.
What is puzzling is whether a reply like this was given out of ignorance or an attempt of intentional deception of us as patients. Anyway this kind of behavior of key stakeholders is tragic and unacceptable. The Ministry of health has the obligation to provide basic healthcare and equal conditions of treatment for all citizens, which includes people living with HIV. Therefore there is no treatment availability if more than 10% of patients can’t get an adequate therapy or no therapy whatsoever – threats of infection spreading and consequences to public health are even bigger.
So we insist that the Ministry of Health explains this reply and to elaborate the significance of the reply they gave us, as well as to say what will be done on solving this and the other problems we have presented in our open letter.
Members of our Q-club have met with the Deputy Commissioner for Information of Public Importance and Personal Data Protection, Mr. Aleksandar Resanović and the Head of the Cabinet, Ms. Nevena Ružić, on February 14 2012.
The meeting was organized as a response to our open letter on key problems of PLHIV in Serbia, and in this case we have discussed healthcare for people living with HIV, and protection information on their HIV status. We were welcomed and encouraged to use the Law on free Access to Information of Public Importance. Our hosts have concluded that all five issues we pressed in our open letter belong in the jurisdiction of the Ministry of Health, but they wanted to be informed about issues and problems PLHIV in Serbia face, particularly on breaching of their privacy.
We have discussed the impending problems of electronic medical documentation and database, and challenges the new medical documents will bring. We have particularly stressed the issue of how the PLHIV register is being maintained, and the lack of regulations for this.
Our hosts have warned us that there is a lack of regulations for working with sensible personal data, where health status data which includes health status data. Such regulations were drafted, but the Government didn’t adopt even though the legal deadline has run out, and this issue was pressed by the Commissioner several times.
Our hosts have taken upon themselves to further pursue the issue of dealing with medical records and their protection in the future, so that all the citizens could be adequately protected, particularly when stigmatized illnesses are concerned.
Meeting with the Republic Fund for Health Insurance
We would like to inform all the members on the results of the meeting with the director of the Republic Fund for Health Insurance, Dr Aleksandar Vuksanović. The meeting was organized as a response to our pen letter on key problems of PLHIV in Serbia, and took place in the offices of the Fund in Belgrade, on February 10 2012.
We were very dissapointed to be received by the team of Dr Vuksanović, and not by him persnally, as we have previously agreed. With the team we have discussed the first two problems from the open letter – prescription of medication for people receiving treatment for the HIV infection, and options for broadening the positive list of medicines with newer ARV therapies.
Unlike in the written reply we have received from the Fund, the hosts of our meeting were unanimous about the problem on prescribing long term HIV medications for more then 60 days, as it is now, since that would require changes in the Regulations of the Fund – speciffically article 14, which defines that particular issue. We have concluded that longer prescription periods would make the treatment of patients on stable therapies much easier. The patients wouldn't have to get their presrciptions monthly – which would reduce queues at the clinics, while the doctors and the medicall staff can direct their attention to more urgent patients. The representatives of the Fund have agreed that this request is just, and promissed to push for adequate changes in the Regulations as soon as possible.
The second problem was the issue of insufficient ammount of modern HIV treatment medications in Serbia, which is also in juristiction of the Fund. Only a few medications have been registrated and put into the Fund's procedure for inclusion on the positive list. The expert group said last year gave the positive opinion on necessity of these medications, which are currently lacking in treatment of more than 10% of patients. We found the reply to our request very unprofessional (coming from public servants) – that the therapies are very expensive, and that the Fund lacks the money to procure them, and that the way to go about this problem is to get the pharmaceutical companies to reduce prices and give the medicines as donations. For us, excuses like these demonstrate that the Fund doesn’t approach solving of this problem seriously. The representatives further told us that “they understand the problem, and are putting some efforts in finding a solution for it (at least a partial one) by considering options.” They wouldn’t share any of the potential options with us at the time. A pharmaceutics-economic study is needed to show the expenditure and effects of obsolete medicines, and a cost study is needed to show the cost-effectiveness of introducing new ones. All of these studies have been done in other countries, and have shown that there are many benefits of HIV treatment, not only to health and quality of life of PLHIV but also for the public health. Our hosts in the Fund kept repeating that the Fund doesn’t have the money. We have taken on an obligation to address the pharmaceutical companies and ask them to adapt the price to our market.
However the meeting said that there is a lack of will to improve treatment of people living with HIV – confirming large stigma and neglect of this illness. We still have hope that these problems will be reassessed when the conditions in the country improve.
We had another suggestion we considered would be very beneficial for treatment of PLHIV – to have one of the patients take part in work of the subcommittee deciding on HIV medications and their inclusion on the positive list. The suggestion was rejected out of hand on the account of the committee being very highly expert based. We will reconsider this, and if needed address the Fund again.
We will continue our efforts to provide for adequate treatment for PLHIV, and consider it to be the key to HIV response, and in the interest of the entire society.
Members of our Q-club were received today by the Cabinet of the President of Republic of Serbia, Boris Tadić. We had a warm welcome, met with the councillors of the President and discussed the key problems of people living with HIV in Serbia, mostly within the healthcare system.
The meeting was organized as a response to our campaign – the open letter about the key problems of PLHIV in Serbia. With the councillors of the President we talked about those problems – we presented them from the perspective of PLHIV and of course some of our suggestions for solving them. We also talked about potential involvement of the President and the Cabinet in solving those problems, and thus improving healthcare situation for PLHIV in Serbia.
We have agreed to continue communication with the Cabinet until the key issues have been resolved, and that we will have the support of the Cabinet in our further actions.
The Q-club will continue working with all the relevant institutions on finding ways of overcoming the key problems in response to HIV.
The Ministry of Youth and Sport responded to the initiative of the Q-club – the open letter on key problems of PLHIV in Serbia, so they invited our representatives to a meeting. We met with the Head of the Department for Youth Cooperation, Zorica labudović on February the 6th 2012.
We discussed the ways this Ministry can help in solving of the key problems. Even though this Ministry of Youth and Sport has very little jurisdiction over the healthcare system, they demonstrated willingness to give the necessary support and help with our activities directed primarily at youth.
We, at the Q-club, have had a special programme for years targeting youth living with HIV and prevention of HIV among young people, so we hope that cooperation with the Ministry will grow trough projects directed at this population.