Patients with rare diseases ask for help
Association of Organizations of Patients with Rare Diseases asks Dmitry Medvedev for help
FarmvestnikThe Moscow – St. Petersburg videoconference on the topic "Equal access to treatment for everyone", dedicated to the Fourth International "Day of Rare Diseases" in 2011, which is held under the auspices of "Rare but Equal", was held at RIA-Novosti.
The initiator of the event was the National Association of Organizations of Patients with Rare Diseases "Genetics", an associate member of the European Organization of Rare Diseases EURORDIS, the official coordinator of the "Day of Rare Diseases" in the Russian Federation.
This video conference brought together patients with rare diseases, medical experts, researchers, pharmaceutical manufacturers, representatives of the Federation Council, the Ministry of Health and Social Development of the Russian Federation. Following its results, a number of important decisions were made, thanks to which, perhaps, new prospects for the care of patients with rare diseases in Russia will appear.
Together with government officials, doctors and specialists, the videoconference was attended by patients with rare diseases (Fabry's disease, cystinosis, Crohn's disease, idiopathic thrombocytopenic purpura, pulmonary hypertension, phenylketonuria, soft tissue sarcoma, paroxysmal nocturnal hemoglobinuria, oncohematological diseases and many others). They told what problems they have to face in order to get a high-quality diagnosis, treatment and achieve any social rights and guarantees.
Following the results of the conference, the National Association of Organizations of Patients with Rare Diseases "Genetics" appealed to the President of Russia Dmitry Medvedev with a request to take urgent measures and amend the draft Federal law "On the basics of protecting the health of citizens in the Russian Federation" concerning medical care for patients with rare diseases.
"The draft of this Law mentions rare diseases for the first time in the history of our country (subparagraph 2 of paragraph 1 of Article 27, paragraphs 1-4 of Article 40, paragraph 2 of Article 98). But this mention alone does not make the life of sick people easier! After all, if you look really, then nothing will change in the situation with medical care for patients with rare diseases," the appeal says.
The main reasons for this are as follows:
- A very high threshold for classifying the disease as rare, specified in the draft law (10 cases per 200,000 population).
- Shifting responsibility for providing medicines to patients with rare diseases to the budgets of the subjects of the Russian Federation contradicts international experience. Given that the patient register will also be managed by the subject, the subject is not interested in identifying and registering patients with a rare disease.
- The law reserves for the federal budget only the provision of medicines and the maintenance of a register of patients with hemophilia, cystic fibrosis, pituitary nanism, Gaucher disease, malignant neoplasms of lymphoid, hematopoietic and related tissues, multiple sclerosis, as well as recipients after organ and (or) tissue transplantation. The separation of these rare nosologies into a separate group violates the equal access of patients to treatment and contradicts paragraphs 3 and 4 of Article 5 "Respect for human and civil rights in the field of health protection and the provision of state guarantees related to these rights" of the same Law, as well as the Constitution of the Russian Federation.
The appeal also proposes to create an Expert Council under the President of the Russian Federation, which will include doctors, economists, heads of all-Russian patient communities to develop optimal solutions to the problem of rare diseases in the Russian Federation. In addition, it is proposed to introduce a mandatory item in regional health modernization programs to improve the situation of providing medical care to patients with rare diseases.
Portal "Eternal youth" http://vechnayamolodost.ru03.03.2011