{"id":12131,"date":"2016-06-17T07:17:22","date_gmt":"2016-06-17T07:17:22","guid":{"rendered":"https:\/\/patients.org.ua\/?p=12131"},"modified":"2024-04-18T13:14:11","modified_gmt":"2024-04-18T13:14:11","slug":"five-years-of-struggle-for-survival-2","status":"publish","type":"post","link":"https:\/\/patients.org.ua\/en\/news\/five-years-of-struggle-for-survival-2\/","title":{"rendered":"Five Years of Struggle for Survival"},"content":{"rendered":"

\"image\"
\n\u00abOlya, do\u00a0you understand that you will surely face instability and a\u00a0light purse for at\u00a0least one year and a\u00a0half or\u00a0even for two years? You should think twice<\/em>\u00bb, told me\u00a0one of\u00a0my\u00a0colleagues when\u00a0I filed an\u00a0advance notice leaving the All-Ukrainian PLWH Network<\/a>, one of\u00a0the largest NGOs at\u00a0the moment. But I\u00a0did not care because\u00a0I was absolutely confident in\u00a0my\u00a0intention to\u00a0work for the idea, which was so\u00a0sympathetic and important for\u00a0me. I\u00a0wanted to\u00a0help people. Subsequently in\u00a0six months when\u00a0I got pregnant with my\u00a0second child\u00a0I realized that my\u00a0way would be\u00a0even more difficult. However, I\u00a0had no\u00a0backing space and with full support from my\u00a0husband\u00a0I managed to\u00a0carry two children to\u00a0term\u00a0\u2014 the organization that was destined to\u00a0become one of\u00a0the most influential in\u00a0the health sector and my\u00a0second daughter Lera.<\/p>\n

It\u00a0was the beginning of\u00a0the Charitable Foundation Patients of\u00a0Ukraine, which every day works to\u00a0reduce daily mortality rate in\u00a0Ukraine. Every day death claims 1\u00a0607\u00a0Ukrainians!<\/p>\n

Now Patients of\u00a0Ukraine is\u00a0one of\u00a0the most influential patient\u2019s organizations in\u00a0the country. I\u00a0am not kidding because pharmaceutical mafia and corrupt officials are trying to\u00a0discredit\u00a0us. Pharmaceutical companies file cases against\u00a0us just because we\u00a0are telling the truth about them in\u00a0the\u00a0TV, over the radio and in\u00a0the press. By\u00a0the way, they are losing while we\u00a0are winning international contests for our information and public campaigns.<\/p>\n

Mothers are grateful to\u00a0us for their kids receive quality medical care and the President of\u00a0the state listens to\u00a0our advice and recommendations. Just 5\u00a0years ago we\u00a0had neither office and computers nor employees. It\u00a0was only a\u00a0team of\u00a0people obsessed with an\u00a0idea to\u00a0help people and to\u00a0build the country, where every patient matters.<\/p>\n

\"276dd9a2-b3ba-46d0-8706-93da1b485e00\"<\/a><\/p>\n

From where did we\u00a0start?<\/strong><\/p>\n

Without an\u00a0office we\u00a0worked from the downtown cafes. I\u00a0remember how we\u00a0organized one of\u00a0our actions Ukraine under Quarantine by\u00a0purchasing the requisites (nail polish and gauze dressing) in\u00a0the pedestrian subway near Maidan and by\u00a0sending faxes from friendly offices. We\u00a0believed that we\u00a0were doing the right thing and it\u00a0was most important.<\/p>\n

Now I\u00a0understand that honest, principled and a\u00a0little crazy people, who believe that they can change the world, are the cornerstone of\u00a0success. We\u00a0built our organization by\u00a0engaging such people. Transparency and openness are our main weapon, that is\u00a0why we\u00a0so\u00a0often hold actions, press conferences, briefings, round tables and publish our reports on\u00a0the website. We\u00a0fight a\u00a0battle in\u00a0the open information space.<\/p>\n

Owing to\u00a0our first campaign Let me\u00a0live!, where children wrote letters to\u00a0the MPs and the President asking for essential medicines, we\u00a0managed to\u00a0arrange additional treatment for 20\u00a0thousand HIV-positive people. Twenty thousand patients, whom we\u00a0would never see and who would never say thanks to\u00a0us, received a\u00a0chance to\u00a0survive in\u00a0this country.<\/p>\n

But the patients continue to\u00a0call\u00a0us and the majority of\u00a0them were with hepatitis C.\u00a0Epidemic in\u00a0Ukraine accounts for about 3,5 million people with hepatitis C.\u00a0Treatment guidelines are unavailable and the medications are very expensive. A\u00a0cost of\u00a0the treatment course with Peg-IFN (the only treatment) at\u00a0that moment was about 15\u00a0thou USD.<\/p>\n

I\u00a0remember once we\u00a0received an\u00a0email message from a\u00a0young man living in\u00a0a\u00a0small town. He\u00a0wrote that he\u00a0was diagnosed with hepatitis\u00a0C and the only way for him to\u00a0survive is\u00a0to\u00a0sell the apartment where he\u00a0lives with his wife and a\u00a0small child. He\u00a0did not ask for anything, he\u00a0just wanted to\u00a0know if\u00a0the treatment would help him, because all his family possesses is\u00a0at\u00a0stake and if\u00a0he\u00a0dies his baby will be\u00a0dishoused.<\/p>\n

Such messages urge\u00a0us to\u00a0work and think about how to\u00a0change the situation, because there are millions of\u00a0people with similar problem. We\u00a0had been negotiating for a\u00a0long time, preparing the documents and in\u00a0doing this we\u00a0realized that a\u00a0public criticism \u2018on TV\u2019 watched by\u00a0the potential voters was the only thing that the officials were scared\u00a0of.<\/p>\n

Together with HCV patients we\u00a0went out in\u00a0front of\u00a0the Cabinet of\u00a0Ministers having sacks on\u00a0our heads and ropes around our necks. This action was called Condemned, because all patients with this disease in\u00a0Ukraine were left for dead at\u00a0the time. We\u00a0wanted to\u00a0show the officials that they condemn all these people to\u00a0death, because they were not willing to\u00a0approve treatment programs, allocate funding and event had no\u00a0time to\u00a0develop the treatment guidelines.<\/p>\n

\"prirecheni2013-1\"<\/a><\/p>\n

It\u00a0worked! We\u00a0forced them to\u00a0adopt the HBV treatment program in\u00a0Ukraine, to\u00a0initiate development of\u00a0the treatment guidelines (the rules of\u00a0how to\u00a0treat hepatitis in\u00a0Ukraine). Then we\u00a0literally chased a\u00a0pharmaceutical company all over the world in\u00a0order to\u00a0persuade it\u00a0to\u00a0give Ukraine a\u00a0discount on\u00a0the newest treatment without side effects. The cost of\u00a0Sofosbuvir treatment course in\u00a0the U.S. is\u00a0more than USD 92\u00a0thousand now. Its cost in\u00a0Ukraine is\u00a0only USD 1\u00a0400. It\u00a0is\u00a0not a\u00a0mistake in\u00a0zeros. There is\u00a065\u00a0times difference! I\u2019m glad that we\u00a0have a\u00a0hand in\u00a0this great victory for the sake of\u00a0seriously ill patients.<\/p>\n

I\u00a0remember very well November\u00a08, 2012, the year when\u00a0I received the first letter from a\u00a0mother of\u00a0a\u00a0child with a\u00a0jaw-breaker disease called \u2018cystic fibrosis\u2019. Then there were a\u00a0lot of\u00a0mothers and fathers of\u00a0children who were unanimously reporting that the state allocated money for a\u00a0medicine that did not help their children. In\u00a0some cases their children even needed intensive care. \u00abIt\u2019s impossible because the medicines have the same active ingredient\u00bb, the experts told\u00a0me. But mothers\u2019 eyes told a\u00a0different story.<\/p>\n

Then we\u00a0met with Ira Gavrisheva, Pterodactyl<\/a>, now deceased, who was helping these children. With a\u00a0bunch of\u00a0diseases herself she managed an\u00a0organization that purchased quality medicines for these children, while numerous packages of\u00a0the state-procured medicines were in\u00a0stock unclaimed because mothers refused to\u00a0take\u00a0it. For several months we\u00a0together with mothers and volunteers persuaded the Ministry of\u00a0Health headed by\u00a0Ms\u00a0Bogatyryova<\/a> to\u00a0stop maiming children. After all it\u00a0turned out that the same active ingredient can dissolve in\u00a0the body of\u00a0a\u00a0child with mucoviscidosis not as\u00a0fast as\u00a0he\u00a0needs, because the medicine shell prevents\u00a0it, causing health problems\u00a0\u2014 the medicine either does not help or\u00a0is\u00a0harmful. This medicine is\u00a0no\u00a0longer procured in\u00a0Ukraine for children with mucoviscidosis and this diagnosis is\u00a0removed from the product label as\u00a0a\u00a0result of\u00a0an\u00a0investigation conducted by\u00a0the Ministry of\u00a0Health.<\/p>\n

For several years the work of\u00a0the Foundation focused on\u00a0increasing the public funding and on\u00a0monitoring of\u00a0the Ministry of\u00a0Health tenders, helping the patients to\u00a0advocate their rights.<\/p>\n

\"3-of-22\"<\/a><\/p>\n

And then the year 2013 came and brought the Revolution of\u00a0Dignity.<\/p>\n

Suddenly we\u00a0believed in\u00a0the \u2018window of\u00a0opportunities\u2019. Bingo! We\u00a0began rushing from one national expert to\u00a0another trying to\u00a0find a\u00a0document that describes what needs to\u00a0be\u00a0done to\u00a0change the health care system. A\u00a0month later we\u00a0found out that such document did not exist. Then we\u00a0attracted the world best experts, who came here and together with the Ukrainian experts helped\u00a0us to\u00a0develop the health care reform strategy. It\u00a0was the world famous reformers of\u00a0the World Health Organization and the World Bank rank, who succeeded in\u00a0reformation of\u00a0health care sector in\u00a0the Baltic States, Georgia, in\u00a0the European and some post-Soviet countries.<\/p>\n

The document National Strategy of\u00a0Health Care Reform in\u00a0Ukraine<\/a> for 2015-2020 was developed in\u00a0heated discussions and disputes. Now we\u00a0know for sure how and what should be\u00a0changed and we\u00a0only wait for the moment often called the \u2018political will\u2019 to\u00a0launch the process. Not yet approved, the strategy is\u00a0slowly paving the way of\u00a0its implementation with inputs from concerned officials, experts and activists.<\/p>\n

Engaging in\u00a0monitoring of\u00a0public pharmaceutical procurement before Maidan we\u00a0realized that theft and control does not mix well, while a\u00a0total control is\u00a0practically impossible. The pharmaceutical mafia was very inventive in\u00a0plotting various schemes how to\u00a0sell more expensive and to\u00a0earn more profit. A\u00a0few years before Maidan we\u00a0had dreamed about attracting to\u00a0the Ukrainian pharmaceutical market the third honest international player who by\u00a0its actions would slump prices of\u00a0the pharmaceutical dealers. Then it\u00a0seemed unreal, and two years later, just after Maidan, we\u00a0managed to\u00a0develop a\u00a0corresponding law, which permits delegating all procurement of\u00a0medicines from the Ministry of\u00a0Health to\u00a0the specialized international organizations (\u2116\u00a0269-VIII<\/a>) and get it\u00a0approved in\u00a0the Verkhovna Rada.<\/p>\n

Now the international organizations can procure medicines in\u00a0Ukraine. The first year of\u00a0this law operation allows saving almost one billion UAH only on\u00a0the half of\u00a0the public procurement of\u00a0medicines. We\u00a0cannot say that we\u00a0emerged from this unscathered. There were threats and impeaching publications, because these were the monies taken away from the pharmaceutical mafia.<\/p>\n

\"20th-International-AIDS-Conference-in-Melbourne\"<\/a><\/p>\n

Financial Issues<\/strong><\/p>\n

From the very beginning of\u00a0our work there were attempts to\u00a0blame\u00a0us for seeking financial benefits in\u00a0favor of\u00a0this or\u00a0other company, for lobbying some medicines while discrediting others.<\/p>\n

International and national foundations account for 93\u00a0percent of\u00a0funding the Patients of\u00a0Ukraine. Among them are the International Renaissance Foundation<\/a>, All-Ukrainian Network of\u00a0People Living with HIV (money of\u00a0the Global Fund to\u00a0Fight AIDS, Tuberculosis and Malaria), United States Agency for International Development (USAID), the National Endowment for Democracy (NED).<\/p>\n

Seven percent of\u00a0funding was used for training and organization of\u00a0meetings of\u00a0patients with the pharmaceutical companies, where the patients had an\u00a0opportunity to\u00a0share openly and sincerely their ideas about company\u2019s policy and products. This funding was protected against any misapplications.<\/p>\n

I\u00a0remember well the first year of\u00a0operation of\u00a0our organization and our first major donor, which believed in\u00a0us. It\u00a0was George Soros Foundation and its Ukrainian branch Renaissance Foundation. Back at\u00a0that time its leaders saw in\u00a0us something that inspired confidence. They awarded the first grant to\u00a0an\u00a0unknown young organization and since then it\u00a0is\u00a0our partner.<\/p>\n

Now the largest global foundations are ready to\u00a0finance\u00a0us, although here we\u00a0also run into flak. After all, we\u00a0were the first to\u00a0criticize the Health Minister Kvitashvili, who came from the international organizations and understood that he\u00a0would not ruin the system. Now this fact is\u00a0obvious, but then we\u00a0greatly suffered from our actions. We\u00a0run a\u00a0risk of\u00a0staying without any donor support or\u00a0funding, but it\u00a0was more important for\u00a0us to\u00a0communicate the patients\u2019 problems to\u00a0the society. However, we\u00a0knew what we\u00a0did and for what purpose.
\nEvery year we\u00a0publish our reports and the results of\u00a0financial audits on\u00a0the website, where you can see all our funds received and spent to\u00a0the last cent. In\u00a0the last year, we\u00a0took a\u00a0step further by\u00a0presenting our report publicly to\u00a0our partners, donors and journalists. We\u00a0are very transparent, and it\u00a0is\u00a0true.<\/p>\n

\"2f60e641-a1cf-41c4-90c3-dae1bb54081a\"<\/a><\/p>\n

For all these years we\u00a0never doubt as\u00a0to\u00a0what we\u00a0do. After all, the goal was simple\u00a0\u2014 to\u00a0change the country\u2019s health care system so\u00a0that a\u00a0patient becomes a\u00a0key player.<\/p>\n

Now we\u00a0educate the patients and develop their organizations. We\u00a0plan to\u00a0focus more attention to\u00a0this area. I\u00a0remember two years ago mothers of\u00a0hemophilic children came to\u00a0us for help. We\u00a0facilitated treatment for their children, who were bleeding without\u00a0it. We\u00a0convinced them to\u00a0create their own organization and to\u00a0fight for their rights. They did it\u00a0and now they have the Children with Hemophilia Foundation<\/a>, which helps parents to\u00a0advocate appropriate treatment for their hemophilic children.<\/p>\n

I\u00a0believe that health care reform in\u00a0Ukraine is\u00a0possible only with support from the patients\u2019 community. In\u00a0order to\u00a0achieve this support, they must be\u00a0educated to\u00a0understand the essence of\u00a0the reforms and be\u00a0prepared to\u00a0overcome the crisis for the sake of\u00a0future benefits. No\u00a0one will ever say \u00abthank you\u00bb for the reform, especially in\u00a0the health care sector. Its results will become apparent much later.<\/p>\n

Today our Foundation is\u00a0five years. We\u00a0have changed greatly over this period. We\u00a0fully changed the original idea borrowed from a\u00a0similar European organization Community Advisory Board<\/a>, which is\u00a0a\u00a0platform for a\u00a0dialogue between patients and pharmaceutical companies. We\u00a0have become an\u00a0organization that works with the national government for the sake of\u00a0the reform. We\u00a0hold hundreds of\u00a0actions targeted to\u00a0the government. Patients with different diseases joint our ranks. We\u00a0changed the name (originally we\u00a0were called UCAB), implement several revolutionary ideas. We\u00a0work with the best experts in\u00a0the country.<\/p>\n

It\u00a0has been said that one should change the area of\u00a0activities every five years in\u00a0order not to\u00a0get bored. But you know, boredom is\u00a0not about our organization. Its rapid growth confirms that the non-governmental sector in\u00a0Ukraine is\u00a0the key to\u00a0inevitable changes. All you need to\u00a0get started is\u00a0some crazy, dedicated believers in\u00a0the idea!<\/p>\n","protected":false},"excerpt":{"rendered":"

\u00abOlya, do\u00a0you understand that you will surely face instability and a\u00a0light purse for at\u00a0least one year and a\u00a0half or\u00a0even for two years? You should think twice\u00bb, told me\u00a0one of\u00a0my\u00a0colleagues when\u00a0I filed an\u00a0advance notice leaving the All-Ukrainian PLWH Network, one of\u00a0the largest NGOs at\u00a0the moment. But I\u00a0did not care because\u00a0I was absolutely confident in\u00a0my\u00a0intention to\u00a0work for […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_analysis_target_kw":"","footnotes":""},"categories":[140],"tags":[],"class_list":["post-12131","post","type-post","status-publish","format-standard","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts\/12131","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/comments?post=12131"}],"version-history":[{"count":3,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts\/12131\/revisions"}],"predecessor-version":[{"id":12136,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/posts\/12131\/revisions\/12136"}],"wp:attachment":[{"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/media?parent=12131"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/categories?post=12131"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/patients.org.ua\/en\/wp-json\/wp\/v2\/tags?post=12131"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}