Альона Романюк

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Monument to Victims of Medical Populism was Erected in Front of the Verkhovna Rada

Patients erected a Monument to the victims of medical populism in front of the Verkhovna Rada. The symbolic crosses with nailed T-shirts bearing the names of the deceased people, who died just shy of treatment, appeared during a public action in front of the Parliament. This is the way the patients demanded from the MPs to vote for bills on medical reform before July 14, that is, before the parliamentary recess. Otherwise, the medical reform will be put off indefinitely. “Unwillingness of the MPs to vote for the medical reform is populism and gratuitous slap in the face of all voters, says Olga Stefanyshyna, Executive Director of the CF “Patients of Ukraine”. – “Now every other Ukrainian is forced to postpone treatment because the state does not provide it, while the MPs continue their mantras on preserving free treatment. For them these are eloquence performance, for most Ukrainians these are claimed lives of native people, who could have been saved if the reform had started 5 or 10 years ago”. This plenary week is the deadline for consideration of the package of bills No 6327 and №6604, which will allow launching the medical reform in the next year. If the Verkhovna Rada ignores this package of bills before July 14, the health care reform will be delayed for at least a year. Draft law No 6327 was supported by the Parliament in the first reading and finalized by a working group composed of people’s deputies. Now the patient community is expecting a positive opinion of the Health Committee and the voting for a package of bills by the Parliament in the second reading. “Recently, my cousin’s 4-year-old daughter Nastya died because of indifference, unprofessionalism and medical error, said Pavel Polamarchuk, the participant of the campaign. – “More than 1,600 Ukrainians die every day, 400 of which could have been saved once the quality of medical services had been improved. The extinction of Ukrainians as a nation through populism and the lack of political will for change will be the personal responsibility of those who delayed the reform and did not vote for the necessary changes” It is to be recalled that the patients repeatedly requested the MPs to start medical reform and to vote for bills proposed by the Ministry of Health. Currently, the working group of the Parliament Health Committee is discussing almost 900 amendments submitted by the people’s deputies. Patients fear that MPs may bury the essence of the reform under the mountain of amendments and adopt entirely different laws or simply killed the bills by populist slogans about “preserving free medicine”, which does not exist in Ukraine de facto. According to the findings of the survey “Cost(LESS) Medicine, 97% of inpatients and outpatients have to pay for the treatment out of their pockets. 49% of patients refuse from treatment because they have no money, 44% of patients have to sell their property or borrow money to cover the cost of treatment. Only one third of Ukrainians seek treatment when they are sick. The reasons are a high cost of treatment and mistrust in doctors. Representatives of the patient community are ready to unite into the national network and to continue their struggle for the reform, and therefore for life, if this week’s populism defeats the common sense and the demands of Ukrainians. “We crossed the point of no return. As patients, we know the price of lost time. It is time for the MPs to take responsibility and choose on whose side they are – people or the corrupt system”, says Dmytro Sherembei, Head of the Coordination Board of the All–Ukrainian PLWH Network,– “During this week, we will see if the deputies can overcome the political impotence and populism. If not, I think the society will have to choose more radical methods of influence. “ During the action, public organizations forwarded the collective appeals to Andriy Parubiy, the Speaker of Parliament, asking for a medical reform to be considered by the Verkhovna Rada this week before July 14, while parliamentary leaders were approached with a request to support these bills in the session hall.  “Sooner or later, each of us will fall sick and die. The modern statistics state that one in four people will have cancer. Therefore, medical reform is the answer to the question on a level of care each of us can expect. So we have to speak about it very loudly “, said Iryna Litovchenko, co-founder of the ICF “Tabletochki”. Previously, patients carried out actions in front of the Parliament, demanding the adoption of laws launching the medical reform . After that the Parliament passed the bill No 6327, which radically changes the system of health care, in the first reading. Through sabotage from the Head of the Health Committee Olga Bohomolets, the NGOs even demanded her resignation. As a reminder, the health reform introduces a fair relationship between a patient and a doctor and is based on three main principles. First, the reform proposes to withdraw from the Soviet principle of paying for beds. This means that the state pays for quality medical services and a patient chooses in which health facility to receive the medical services. This launches the ‘money follows the patient’ principle. Second, the health reform introduces the guaranteed package of medical services with a list of health services to be free for all patients. The state will always pay 100% for emergency car, for a family doctor, GP, pediatrician and for palliative care for the terminally ill patients as well as for childbearing. Cost of specialized medical care and diagnosis will be shared by patients and the state according to the clearly specified rates unified for all Ukrainians. Third, all patients will have equal access to medical care regardless of their social status and income. Every Ukrainian will receive the same medical care as an MP or a minister and will consult the same doctors. It is expected that the official salary of the Ukrainian doctors will be essentially increased due to the changes in the health care financial system specified in the package of bills. DSC_0954DSC_0937DSC_0928DSC_0863DSC_0829DSC_0776DSC_0016DSC_1007 Contacts f0r mass media: Natalia Krasnenkova, 067 465 54 26 krasnenkova@prhouse.com.ua Anastasia Bondarchuk 097 394 49 56, a.bondarchuk@prhouse.com.ua a[rel~="mtli_filesize147MB"]:after {content:" (1.47 MB)"}

Simplified Medicines Authorization System Launched in Ukraine

Simplified Medicines Authorization System has been launched in Ukraine. The Ministry of Justice registered and published a corresponding Order of the Ministry of Health, ensuring that medicines authorized in USA, Switzerland, Japan, Australia, Canada and the EU may enter the Ukrainian market in 17 days!

Patients’ organizations have learnt how to use advocacy and PR tools effectively

Non-governmental organizations have learnt how to use advocacy and PR tools effectively in order to achieve socially important for patients goals. On August 30-31, 2016 the CF “Patients of Ukraine” conducted under the USAID “Cost(less) Medicine” Project training aimed at capacity building of NGOs.

Innovative hepatitis C treatment will be available to Ukrainian patients this year

In Ukraine every 11th Ukrainian is infected with hepatitis C. For decades this disease condemned hundreds of thousands of patients to a painful and slow death. To cure this terrible disease people are forced to sell out all their property because the necessary medicines are too expensive for the average Ukrainian.

Job opportunity: Project Manager in patient organization CF “Patients of Ukraine”

Charitable Foundation “Patients of Ukraine” is looking for a full time Project Manager to join our team.

Condemned patients are picketing the Cabinet of Ministers

Today more than a hundred patients with cotton hoods on their heads and nooses around their necks lined up in front of the building of the Cabinet of Ministers. In this way they wanted to demonstrate to the Government, what the adoption of the draft budget for medicine procurement for 2016 is going to lead to: people with life-threatening diseases are condemned to die. Seriously ill Ukrainians from Kyiv, Chernihiv, Rivne, Cherkasy, Zhytomyr, Volyn and Ternopil Oblasts came to take part in the protest action “Condemned” to assert their right to life.

“Condemned” patients with cotton hoods on their heads and nooses around their necks will gather in front of the building of the Cabinet of Ministers

Patients, outraged with the underfunded medicine procurement for seriously ill Ukrainians within the Draft Budget for 2016, will make a living wall in front of the Cabinet of Ministers building. 100 people will stand with nooses around their necks and cotton hoods on their heads, to the accompaniment of drum-beat that symbolizes the actual execution of Ukrainians by means of underfunded sphere of health care.

The project of Ukraine’s pharmaceutical market deregulation has been developed

Today the CF “Patients of Ukraine” together with MPs and experts of the law firm “Arzinger” presented the Concept of reforming the pharmaceutical market of Ukraine. It provides for, in particular, the abolition of duplicated licensing procedures, simplification of regulation, reduction of the respective terms and maximum transparency of all processes related to the regulation of pharmaceutical market. According to statistics, in Ukraine 80% of city dwellers and 82% of rural area inhabitants cannot buy medicines due to their high cost. One-third of families, with a seriously ill family member, live below the poverty line due to the high cost of medicines. Corruption schemes, high cost of drugs, absence of necessary medicines in Ukraine – all this can be resolved due to deregulation of the pharmaceutical products circulation in Ukraine. “In order to register a medical product in Ukraine you need to spend at least a year and a prodigious sum of money for bribes – says Olga Stefanyshyna, Executive Director of the CF “Patients of Ukraine”, – For years in Ukraine obstacles were created, additional permits and licenses were demanded so that officials could make money on it. As a result, a lot of vital medicines are simply not available in Ukraine, because some companies that produce medicines in Europe or in the USA are not willing to give bribes to enter Ukrainian market. They are not willing to wait in lines for years to prove the quality of their medicines, which has already been recognized in other civilized countries. This significantly influences the availability of medicines for treatment of certain diseases such as, for example, renal failure, oncology and others, rather than drugs on mass market. In Ukraine prices on some drugs are 2-3 times higher than in neighboring countries”. As of today 9,9 thousand names of drugs have been registered in Ukraine, while in France – almost 16 thousand. For a range of mass consumption drugs prices are significantly higher than in neighboring countries. In particular, the most common drug to prevent allergic reaction “Loratadine” costs in Ukraine on the average 2 times more than in Georgia, and 3 times more than in Hungary. Similar situation is with Fluconazole based antifungal medications. Prices in Georgia and Hungary are on the average 2-2.5 times lower. Deregulation of the pharmaceutical market is one of the main stages of healthcare reform in Ukraine, that is fixed in one of the action points of the Coalition Agreement, the Government’s Action Programme and the Presidential Decree “On Strategy for Sustainable Development “Ukraine-2020”. “In order that every citizen of Ukraine could buy high quality and affordable medicines at the chemists, doctors could prescribe to their patients effective treatment in compliance with European clinical protocols, one more step on the approximation of health care system of Ukraine to European quality is made, monopoly and corruption in pharmaceutical industry are eliminated – we should deregulate the circulation of pharmaceutical products in Ukraine. – states professor Olga Bogomolets, Head of the Parliamentary Committee on Public Health. – Being a doctor I could say that one of the reasons why treatment of patients is more effective in Europe, – is significantly wider range of drugs which enables to prescribe an individual treatment regimen and select specific medicines to combat the disease. After a series of public discussions, we will register a draft bill in the Parliament, and I will use my best endeavours to consolidate not only the Committee, but also the entire Parliament to put such needed changes into life”. Ukraine has already undertaken international obligations in the area of deregulation. The relevant provisions are fixed in the Ukraine–European Union Association Agreement and a number of other documents. The presented Concept is fully harmonized with the EU legislation. “Now the whole world is supporting Ukraine. As from January 1, 2016 the Deep and Comprehensive Free Trade Agreement between Ukraine and EU comes into effect. Moreover, the WTO Agreement on Government Procurement has already been signed, and from now on Ukraine will have a possibility to take part in public procurements in other countries. We should simplify procedures removing useless and corrupt mechanisms on our markets, and ensure transparent and easy doing business in Ukraine”, – claimed Hanna Hopko, Head of the Parliamentary Committee on Foreign Affairs. The event was attended by the Deputy Minister of Justice Gia Getsadze and the Head of the State Regulatory Service Ksenia Liapina, who expressed support for the Concept of deregulation of pharmaceutical products circulation in Ukraine. The idea of the market deregulation is also supported by specialized institutions – the Ministry of Health and the Ministry of Economic Development and Trade. By the end of the year public discussions of the Concept with all relevant organizations, business associations and experts will be held.Download   DSC_0054????????????????????????????????????DSC_0081????????????????????????????????????DSC_0108????????????????????????????????????DSC_0115????????????????????????????????????DSC_0129????????????????????????????????????DSC_0208????????????????????????????????????DSC_0217????????????????????????????????????DSC_0288????????????????????????????????????DSC_0291???????????????????????????????????? a[rel~="mtli_filesize22744kB"]:after {content:" (227.44 kB)"}

The Government condemns “crystal” children to disability

“Children-crystals” together with their parents and patient organizations’ activists gathered in front of the Ministry of Health of Ukraine holding an action under the title “Do not break up my life!” Kids whose bones were broken up approximately 30 times in a couple of years, crashed the statuettes of children in front of the Ministry of Health of Ukraine. They tried to demonstrate how easily their bones and lives can be broken due to indifference of officials who condemn them to inevitable disability. “Crystal” people are patients diagnosed with “osteogenesis imperfecta”, the main feature of which – brittle bones. Moreover, such a treatment is required for other rare diseases, such as achondroplasia, hypochondroplasia, neurofibromatosis and Rett’s syndrome. Within a year and a half parents of children with these diseases have sent a number of letters to the Ministry of Health, the Cabinet of Ministers, the President, and to the Commissioners for Human Rights. All they ask for – is to include the mentioned diseases into the list of rare diseases (amendments to the MoH Decree №778). Patients did not receive an effective response from the Government yet.  Doctors refuse to treat such children and take responsibility until there are treatment protocols approved in the country. “Almost all of our hospitals refuse to treat these children, because there are no treatment protocols in Ukraine. In order to approve the treatment protocols, the mentioned diseases should be included into the list of rare diseases. It runs to the absurd. Despite the fact that these five diseases are included in the international database of rare diseases – Orphanet, patients themselves still should prove the existence of such rare disorders to the Ukrainian officials!”, – says Olga Stefanyshynа, the Executive Director of CF “Patients of Ukraine”. – “Before it happens – little “crystals” and their parents stay helpless with their illness, which is cannot to be treated and the Government, which doesn’t allocate money to buy the necessary medicines.” When a child has osteogenesis imperfecta fractures can occur even due to ordinary activities – sneezing or high weight of child’s blanket. Kids may have up to 30 fractures per year, that leads to irreversible changes in the body. Without treatment these children are condemned to a life in a wheelchair, unbearable pain and life-long care. While bisphosphonates are used all over the world to treat “crystals”, parents of these children in Ukraine have to treat their kids almost illegally, because treatment protocols don’t exist and the majority of hospitals refuse not only to treat such children but also to diagnose them.  “Today I, mother of a sick child, in fact, can be called a criminal in this country. There are no treatment protocols, and actually, I treat my child illegally, because I wish her to live a normal life. Each fracture means for us 3 weeks on stretching when a child doesn’t sleep at night because of the terrible pain. Then another 8 weeks in plaster and at least one month of physio. If I don’t treat my child – she will become disabled and bedridden! But officials in the Ministry of Health don’t care”, – claims Lyubov Petrova, mother of a 4 year old girl who has already broken her leg 7 times in last 20 months. During the action parents of these children handed over the Minister of Health         Alexander Kvitashvili and the Deputy Minister of Health Viktor Shafranskiy who is responsible for the formation of treatment protocols, a letter with the request to amend the Decree of the Ministry of Health №778, which will allow to treat “crystal” children with the drugs that are used all over the world. “Today I came here in a wheelchair to support these children. Wheelchair – is the thing which awaits these children in a few years if they are not treated properly. I want officials to look at me once again and realize that they condemn “crystal” children just because they don’t pay attention to them”, – says Svetlana Patra who lives 34 years with osteogenesis imperfecta in Ukraine. “Crystal” children can live a full life only on condition that they receive the necessary treatment. Contact person: Aliona Romaniuk 093 72 10 800, 050 335 53 01 Contact person: Aliona Romaniuk 093 72 10 800, 050 335 53 01    кришталевы діти1????????????????????????????????????DSC_0992????????????????????????????????????DSC_0955????????????????????????????????????DSC_0948????????????????????????????????????DSC_0904????????????????????????????????????DSC_0888????????????????????????????????????DSC_0851????????????????????????????????????

Civil society accused the Government in sabotage of public procurements of medicines through international organizations

Today patient and anticorruption organizations brought to the Cabinet of Ministers 4 barrels with ink for Arseniy Yatsenyuk, the Prime Minister of Ukraine, Alexander Kvitashvili, the Minister of Health, Natalya Jaresko, the Minister of Finance and Valeriya Gontareva, the Head of the National Bank. Due to the action “100 liters of ink for the Cabinet of Ministers” activists demanded to sign regulations to launch public medicines and vaccines procurements through international organizations.