Dmytro Sherembei, director of the Department for Communication, Policy and Advocacy in the All-Ukrainian PLWH network, has told The Ukrainian Week about this outrageous situation.
In the late 1990s, the state extended about as much care to HIV-positive Ukrainians as it did to prisoners: the same type of hospitals and the same level of treatment. Therefore, patients set up their own NGO for PLWH (People Living with HIV/AIDS) in order to defend their right to life. They have succeeded in obtaining international financing to purchase medications on their own when the state “lost” the millions that the Global Fund had by transferring them to unknown accounts.
“We had no other way out — either to die or to convince the world community that these funds will be used more rationally by NGOs. This was a precedent in the world — an NGO, rather than the state, received money to fight an epidemic.”
However the Health Ministry could not let the chance of using this money slip through its hands. It created conditions in which no competitor of the supplying companies favored by the ministry could import medications in Ukraine without headaches.
This produced expected results. Every monopoly decreases the quality of services and drives up prices. This was the case with government control over the supply of medications. In the early fall of 2010, the Health Ministry had to buy medications for AIDS patients. Normally, one patient requires medications worth $350-400 a year. The ministry had to find a total of nearly 130 million hryvnias. However, it found the money only in the fourth quarter. Those who knowhow the state budget works understand what this means: due to bureaucratic procedures there is simply not enough time left to use the money, and so it goes back to the treasury. This scheme essentially signed the death warrant against Ukrainians, says Mr. Sherembei.
U.W.: What happened?
“Today Ukraine is, in essence, on the brink of a strategic catastrophe — a decade-long program to treat patients will be discontinued. HIV-positive people who are undergoing treatment cannot afford to skip taking a pill according to the schedule even once.
“Today there are 20,000 people in Ukraine who receive treatment. They do not pass on the HIV. Pills have an effect on their bodies that prevents them from spreading the virus. This is the best prevention method. If they are not given their pills on 31 January, as soon as on 7 February any medications, even the most expensive pills in the world, can be flushed down in the toilet. Because if these people fail to take at least one (!) pill on time, they will not be able to take them again. The reason is that they develop resistance to medications, and the virus quickly mutates. So one wrong step brings 10 years of treatment to nothing. And this step has been taken.”
U.W.: Why do you say that 31 January is the deadline?
“In fact, the deadline expired back in September when we were supposed to receive supplies of medications. All local AIDS centers have been using saved medications that were left after AIDS patients died or moved. I was in one such center in Kryvy Rih two months ago. They told me at the time that saved medications would last until January. They give treatment to 200 children there. I don’t know how chief doctor will look into the patients’ eyes when medications finally come, because they will not save the situation.”
U.W.: Why not?
“There is a plan for purchasing medications. The Health Ministry is well aware of the kind of disease it’s dealing with. However, for the umpteenth time we find ourselves in a situation where all deadlines have expired, but the pills have not been imported into Ukraine.
“There are several factors at play: money, poor organization of the process, and corrupt deals that affect all processes.
“There are no guilty parties in this scheme, but there are victims — patients. The Health Ministry will shift the blame on the supplier; he will pass the buck to the producer; and the producer will complain about bureaucratic procedures. The tender system in Ukraine is set up in such a way that no parties are ever guilty.
“The scheme team has always been the same; the names of the suppliers have not changed; and the producers are the same. I believe the SBU has information about the sums of money stolen over these years. However, all published reports about corruption in this sector have been successfully buried or forgotten.
“In the course of 10 years that I have worked in this organization, I got tired of asking the question: Who is to blame? This is no longer interesting. Today I want officials to make a statement about how many people have to die before they are sated with money and start working in a normal way.
“It no longer makes a difference how much they will steal and who will build a bigger villa. The problem is that there are specific victims — people — in the games that officials are playing. These people are someone’s children, parents or breadwinners. They are dying. Experiments of this kind that are being performed on Ukrainians are more than just a horrible blunder. I believe that this is purposeful and conscious enrichment of certain people at the cost of human lives.
“The Feofania clinic, where high-ranking officials get their treatment, has received 700 million hryvnias in the past three years. The entire HIV/AIDS program has not received that much from the state. I don’t know what golden creams are used to treat MPs in Feofania. But when we’re talking about human lives, it’s very simple. All MPs have to go to district hospitals, while Feofania has to be turned into a hospital for patients with highly lethal diseases — cancer, HIV/AIDS, diabetes, and so on. Then these people will see that the state has turned toward them its face rather than the part of the body it usually turns.
“Thus, since October we have been saying that Ukraine is on the verge of disrupting a large-scale AIDS treatment program. No one has lent an ear. In response are public statements they have sent investigators to our organization. No explanations have been offered — they are simply running a total check, in all cities in Ukraine. Investigators did not go to the Health Ministry and are not looking into why so many people are going to die. Rather, they spend their time in organizations that are trying to fight for the lives of Ukrainians.
“Our organization has been buying the same pills as the state does, has held the same tenders, and has imported these pills for its patients at a low price and in a timely manner for five years running. Now we’re looking for ways to do it. However, there is a process that takes six weeks, and it’s tied to Ukrainian legislation. It involves tender procedures and customs borders (because medications are physically located abroad), as well as certification by the Health Ministry in Ukraine. It takes six weeks, provided that every bureaucrat signs all papers on time; no one stops anything; and we do not run into usual bedlam. Then we’ll need time to deliver medications to hundreds of local AIDS centers and distribute them to patients.
“What we see now is that no one wants to break the existing profitable scheme for the sake of this shipment, for the sake of these 20,000 people.”
U.W.: Do government bodies turn to you for help?
“Yes. The AIDS Center has called and asked us whether we have the ability to compensate for the lacking medications. But why didn't they do it earlier? They had all the information from the regional centers about the availability of medications a month ago. They had to use their heads back then and start solving this problem.”
U.W.: So there is no way out?
“There is no way out. Here is what doctors are doing now. A Cherkasy representative came and brought this pill here. Medications have not been purchased for 2,000 AIDS children patients, and so they take a pill made for adults and split it into three parts using a knife. From a medical point of view, this is schizophrenia, because these are high-accuracy pills. Very precise doses must be used. Manufacturers produce them in pills with an exact mass to enable precise calculations. What can you calculate if pills are split with a knife into some parts?
“I understand that doctors are hostages to the situation and are trying to do at least something in their despair. However, children are treated with precisely weighted medications. If a child develops resistance, if the virus becomes resistant, it is impossible to replace these medications. There is simply no analog in the world. These are horrible words, but mothers need to know the outcome of this disease if the medication is lacking. In this case, children simply have no chance.”
U.W.: So the only thing that remains is to drop medications from planes flying over the local AIDS centers?
“I don’t know. But let me tell you something. When Euro 2012 preparations were in jeopardy, they somehow found concrete and people, and the construction works quickly resumed. They wasted little time and found many billions there. When they wanted to build a helicopter landing site for [Viktor] Yanukovych, they, again, did everything quickly.
“Therapy interruptions will, in fact, occur anyway. However, those who are guilty of bringing about this situation can at least reduce the number of affected people. Everything that the Health Ministry needs to do is to lobby in the Cabinet of Ministers for a simplified permit-granting system to supply antiretrovirals to Ukraine for at least two months without additional labeling. I don’t think that it makes a whole lot of difference to a patient in what language the drug use instructions are written when he does not have any pills at all. All he needs in order to survive is therapy. Second, the Health Ministry has to agree with Ukrvaktsyna that it will urgently check the medications that are now on the waiting list in its lab so that they can be delivered to the AIDS centers as quickly as possible. Again, this will reduce the number of people with disrupted threrapy schedules.
“The catastrophe is inevitable, but to prevent recurrences the Health Ministry should join forces [with us] to solve problems rather than deny their existence. Another key requirement is that the Health Ministry should make payments for medications to be used next year in the second quarter of the current year. Medications have to be delivered to storehouses four months prior to their distribution.”
U.W.: Is there any reaction from the new Minister of Public Health Illia Yemets?
“As of today (24 January), he keeps silent.”
U.W.: Did the previous minister, Zynovii Mytnyk, say anything?
“He tried to say something, but he has lost his office now, so there is no point in talking about him. There is a new minister who needs to clearly understand that the mission of his ministry is to preserve the health and lives of people rather than take care of personal career growth. This responsibility is measured simply by human lives.”
U.W.: Can you name the agencies that are responsible for this situation?
“The key person is the minister. The second most important agency is the anti-AIDS state service headed by Anatolii Fedko who assumed his office together with the new minister. The tender committee of the Health Ministry comes third.
“All these institutions had to collect data about needed medications in a timely manner, place orders to purchase them, and deliver them. And all of this had to be done on time. However, they share this responsibility: some place orders, others have the money, while still others have their own bureaucracy. It is hard to know who bears ultimate responsibility.
“There is another aspect. ‘Experiments’ with AIDS treatment threw the Republic of South Africa back by decades. The local public health sector was in the hands of people who preferred not to see this problem. And the situation became irreversible — they flew past the point of no return. In this country there are cities with a population of 100,000 people of which 70,000 have AIDS. Children live up to five years and adults up to 30. All they can do there is to redistribute dead patients’ pills among the still living.
“A different scenario can be seen in Europe. They have localized the problem quite fast there and prevented it from spreading. Ukraine knows the outcome in Africa and in Europe. Therefore, our state has a choice. But the actions of the government today show that the choice that has been made is not in favor of the European scenario.
“We shouldn’t think that AIDS is a problem of drug addicts. For a long time now the virus has been transmitted sexually, which has nothing to do with drug addiction. So all sexually active people are now in the risk group, like in a minefield. Two or three years of such ill-advised decisions, and we will have to teach our children to live in conditions of a pandemic, like in Africa.”
