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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.

In 2016 in Odesa 30 family doctors will start working in accordance with European standards

Today, the Advisor to the Chairman of the Odesa Regional State Administration Maria Gaidar presented the initial steps that will be done in the framework of reforming the health care system in the Odesa Oblast in 2016.

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????????????????????????????????????