Five Years of Struggle for Survival

Five Years of Struggle for Survival

«Olya, do you understand that you will surely face instability and a light purse for at least one year and a half or even for two years? You should think twice», told me one of my colleagues when I filed an advance notice leaving the All-Ukrainian PLWH Network, one of the largest NGOs at the moment. But I did not care because I was absolutely confident in my intention to work for the idea, which was so sympathetic and important for me. I wanted to help people. Subsequently in six months when I got pregnant with my second child I realized that my way would be even more difficult. However, I had no backing space and with full support from my husband I managed to carry two children to term — the organization that was destined to become one of the most influential in the health sector and my second daughter Lera.

It was the beginning of the Charitable Foundation Patients of Ukraine, which every day works to reduce daily mortality rate in Ukraine. Every day death claims 1 607 Ukrainians!

Now Patients of Ukraine is one of the most influential patient’s organizations in the country. I am not kidding because pharmaceutical mafia and corrupt officials are trying to discredit us. Pharmaceutical companies file cases against us just because we are telling the truth about them in the TV, over the radio and in the press. By the way, they are losing while we are winning international contests for our information and public campaigns.

Mothers are grateful to us for their kids receive quality medical care and the President of the state listens to our advice and recommendations. Just 5 years ago we had neither office and computers nor employees. It was only a team of people obsessed with an idea to help people and to build the country, where every patient matters.

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From where did we start?

Without an office we worked from the downtown cafes. I remember how we organized one of our actions Ukraine under Quarantine by purchasing the requisites (nail polish and gauze dressing) in the pedestrian subway near Maidan and by sending faxes from friendly offices. We believed that we were doing the right thing and it was most important.

Now I understand that honest, principled and a little crazy people, who believe that they can change the world, are the cornerstone of success. We built our organization by engaging such people. Transparency and openness are our main weapon, that is why we so often hold actions, press conferences, briefings, round tables and publish our reports on the website. We fight a battle in the open information space.

Owing to our first campaign Let me live!, where children wrote letters to the MPs and the President asking for essential medicines, we managed to arrange additional treatment for 20 thousand HIV-positive people. Twenty thousand patients, whom we would never see and who would never say thanks to us, received a chance to survive in this country.

But the patients continue to call us and the majority of them were with hepatitis C. Epidemic in Ukraine accounts for about 3,5 million people with hepatitis C. Treatment guidelines are unavailable and the medications are very expensive. A cost of the treatment course with Peg-IFN (the only treatment) at that moment was about 15 thou USD.

I remember once we received an email message from a young man living in a small town. He wrote that he was diagnosed with hepatitis C and the only way for him to survive is to sell the apartment where he lives with his wife and a small child. He did not ask for anything, he just wanted to know if the treatment would help him, because all his family possesses is at stake and if he dies his baby will be dishoused.

Such messages urge us to work and think about how to change the situation, because there are millions of people with similar problem. We had been negotiating for a long time, preparing the documents and in doing this we realized that a public criticism ‘on TV’ watched by the potential voters was the only thing that the officials were scared of.

Together with HCV patients we went out in front of the Cabinet of Ministers having sacks on our heads and ropes around our necks. This action was called Condemned, because all patients with this disease in Ukraine were left for dead at the time. We wanted to show the officials that they condemn all these people to death, because they were not willing to approve treatment programs, allocate funding and event had no time to develop the treatment guidelines.

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It worked! We forced them to adopt the HBV treatment program in Ukraine, to initiate development of the treatment guidelines (the rules of how to treat hepatitis in Ukraine). Then we literally chased a pharmaceutical company all over the world in order to persuade it to give Ukraine a discount on the newest treatment without side effects. The cost of Sofosbuvir treatment course in the U.S. is more than USD 92 thousand now. Its cost in Ukraine is only USD 1 400. It is not a mistake in zeros. There is 65 times difference! I’m glad that we have a hand in this great victory for the sake of seriously ill patients.

I remember very well November 8, 2012, the year when I received the first letter from a mother of a child with a jaw-breaker disease called ‘cystic fibrosis’. Then there were a lot of mothers and fathers of children who were unanimously reporting that the state allocated money for a medicine that did not help their children. In some cases their children even needed intensive care. «It’s impossible because the medicines have the same active ingredient», the experts told me. But mothers’ eyes told a different story.

Then we met with Ira Gavrisheva, Pterodactyl, now deceased, who was helping these children. With a bunch of diseases herself she managed an organization that purchased quality medicines for these children, while numerous packages of the state-procured medicines were in stock unclaimed because mothers refused to take it. For several months we together with mothers and volunteers persuaded the Ministry of Health headed by Ms Bogatyryova to stop maiming children. After all it turned out that the same active ingredient can dissolve in the body of a child with mucoviscidosis not as fast as he needs, because the medicine shell prevents it, causing health problems — the medicine either does not help or is harmful. This medicine is no longer procured in Ukraine for children with mucoviscidosis and this diagnosis is removed from the product label as a result of an investigation conducted by the Ministry of Health.

For several years the work of the Foundation focused on increasing the public funding and on monitoring of the Ministry of Health tenders, helping the patients to advocate their rights.

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And then the year 2013 came and brought the Revolution of Dignity.

Suddenly we believed in the ‘window of opportunities’. Bingo! We began rushing from one national expert to another trying to find a document that describes what needs to be done to change the health care system. A month later we found out that such document did not exist. Then we attracted the world best experts, who came here and together with the Ukrainian experts helped us to develop the health care reform strategy. It was the world famous reformers of the World Health Organization and the World Bank rank, who succeeded in reformation of health care sector in the Baltic States, Georgia, in the European and some post-Soviet countries.

The document National Strategy of Health Care Reform in Ukraine for 2015-2020 was developed in heated discussions and disputes. Now we know for sure how and what should be changed and we only wait for the moment often called the ‘political will’ to launch the process. Not yet approved, the strategy is slowly paving the way of its implementation with inputs from concerned officials, experts and activists.

Engaging in monitoring of public pharmaceutical procurement before Maidan we realized that theft and control does not mix well, while a total control is practically impossible. The pharmaceutical mafia was very inventive in plotting various schemes how to sell more expensive and to earn more profit. A few years before Maidan we had dreamed about attracting to the Ukrainian pharmaceutical market the third honest international player who by its actions would slump prices of the pharmaceutical dealers. Then it seemed unreal, and two years later, just after Maidan, we managed to develop a corresponding law, which permits delegating all procurement of medicines from the Ministry of Health to the specialized international organizations (№ 269-VIII) and get it approved in the Verkhovna Rada.

Now the international organizations can procure medicines in Ukraine. The first year of this law operation allows saving almost one billion UAH only on the half of the public procurement of medicines. We cannot say that we emerged from this unscathered. There were threats and impeaching publications, because these were the monies taken away from the pharmaceutical mafia.

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Financial Issues

From the very beginning of our work there were attempts to blame us for seeking financial benefits in favor of this or other company, for lobbying some medicines while discrediting others.

International and national foundations account for 93 percent of funding the Patients of Ukraine. Among them are the International Renaissance Foundation, All-Ukrainian Network of People Living with HIV (money of the Global Fund to Fight AIDS, Tuberculosis and Malaria), United States Agency for International Development (USAID), the National Endowment for Democracy (NED).

Seven percent of funding was used for training and organization of meetings of patients with the pharmaceutical companies, where the patients had an opportunity to share openly and sincerely their ideas about company’s policy and products. This funding was protected against any misapplications.

I remember well the first year of operation of our organization and our first major donor, which believed in us. It was George Soros Foundation and its Ukrainian branch Renaissance Foundation. Back at that time its leaders saw in us something that inspired confidence. They awarded the first grant to an unknown young organization and since then it is our partner.

Now the largest global foundations are ready to finance us, although here we also run into flak. After all, we were the first to criticize the Health Minister Kvitashvili, who came from the international organizations and understood that he would not ruin the system. Now this fact is obvious, but then we greatly suffered from our actions. We run a risk of staying without any donor support or funding, but it was more important for us to communicate the patients’ problems to the society. However, we knew what we did and for what purpose.
Every year we publish our reports and the results of financial audits on the website, where you can see all our funds received and spent to the last cent. In the last year, we took a step further by presenting our report publicly to our partners, donors and journalists. We are very transparent, and it is true.

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For all these years we never doubt as to what we do. After all, the goal was simple — to change the country’s health care system so that a patient becomes a key player.

Now we educate the patients and develop their organizations. We plan to focus more attention to this area. I remember two years ago mothers of hemophilic children came to us for help. We facilitated treatment for their children, who were bleeding without it. We convinced them to create their own organization and to fight for their rights. They did it and now they have the Children with Hemophilia Foundation, which helps parents to advocate appropriate treatment for their hemophilic children.

I believe that health care reform in Ukraine is possible only with support from the patients’ community. In order to achieve this support, they must be educated to understand the essence of the reforms and be prepared to overcome the crisis for the sake of future benefits. No one will ever say «thank you» for the reform, especially in the health care sector. Its results will become apparent much later.

Today our Foundation is five years. We have changed greatly over this period. We fully changed the original idea borrowed from a similar European organization Community Advisory Board, which is a platform for a dialogue between patients and pharmaceutical companies. We have become an organization that works with the national government for the sake of the reform. We hold hundreds of actions targeted to the government. Patients with different diseases joint our ranks. We changed the name (originally we were called UCAB), implement several revolutionary ideas. We work with the best experts in the country.

It has been said that one should change the area of activities every five years in order not to get bored. But you know, boredom is not about our organization. Its rapid growth confirms that the non-governmental sector in Ukraine is the key to inevitable changes. All you need to get started is some crazy, dedicated believers in the idea!

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