Patients do not have enough for medicines – Newspaper Kommersant No. 26 (7471) of 02/13/2023
[ad_1]
The regions are making another attempt to shift the problem of providing orphan patients with expensive drugs to the federal budget. To this end, the Parliament of St. Petersburg proposes to amend the law “On the Fundamentals of Health Protection” so that the treatment of adults with spinal muscular atrophy (SMA) is funded at the federal level. The legislature assures that the initiative is coordinated with colleagues from other regions. Now more than 40 adults with SMA live in St. Petersburg, and the city annually spends about 800 million rubles on their treatment. Olga Germanenko, head of the SMA Families Foundation, says that due to the high cost of treatment, such patients are like a “bone across the throat” in any subject.
The Commission for Social Policy and Health of the St. Petersburg Legislative Assembly has proposed transferring drug provision to adult patients with spinal muscular atrophy to the federal level. The initiative was approved at the plenary session and sent to the State Duma of the Russian Federation. According to the amendments to the law “On the Fundamentals of Health Protection”, the Ministry of Health of the Russian Federation will have to provide medicines for such patients.
Currently, adult patients with SMA are not included in any state drug program, receiving therapy for disability or life reasons. The authorities of the regions should take care of this, which becomes a “significant financial burden” for them, the authors of the initiative point out. Thus, the price of a package of risdiplam in federal contracts for 2022 averaged more than 666 thousand rubles, nusinersen (Spinraza) – 4.3 million rubles. As of 2023, 548 people in Russia regularly need such treatment.
Since 2021, underage patients with SMA have been provided with such expensive drugs by the Krug Dobro state fund. Every year, about 40 of these patients of the foundation reach adulthood, which means that in 2024 the number of adult patients with SMA will be 588 people, in 2025 – 628. According to the SMA Families Foundation, three-quarters of adults with SMA are not currently receiving treatment. “In practice, patients over the age of 18 have no chance of receiving preferential drug coverage without protecting their rights in court,” the explanatory note to the bill says. By failing to fulfill their obligations to finance the purchase of drugs, the regional authorities violate the “guaranteed right of the considered group of citizens to health care,” the authors believe. They note that the adoption of the amendments will require the allocation of additional funds from the federal budget: in 2023 – more than 10.1 billion rubles, in 2024 – more than 9.8 billion rubles, in 2025 – more than 10.5 billion rubles. The head of the commission on social policy and health of St. Petersburg, Alexander Rzhanenkov, specified that, according to the plan of the deputies, the saved city funds will be used to purchase medicines for people with other serious illnesses. He stressed that the initiative was agreed with colleagues from other regions and supported by the Council of Legislators at the federal level. “Children with SMA up to 18 years of age are helped in the treatment by the Circle of Kindness, created at the initiative of the President. But as soon as a person reaches the age of eighteen, he loses the opportunity to receive these medicines. If St. Petersburg and Moscow can somehow help at the expense of the city budget, then in many other subjects a person does not receive anything. And without drugs, SMA patients die, ”Mr. Rzhanenkov told Kommersant.
Olga Germanenko, director of the SMA Families Foundation, points out that Moscow, along with the Sverdlovsk and Tyumen regions, is one of the “most problematic regions”, where not a single adult with SMA is provided with treatment. In St. Petersburg, where more than 40 such patients live, they are attentive to their obligations. “On average, about 20 million rubles are required per patient per year, and 800 million rubles for all residents of St. Petersburg. The money is taken from funds aimed at organizing preferential treatment for all patients. Of course, this way we get a huge budget deficit,” says Ms. Germanenko. She claims that in every region where she visited as an expert of the Duma Commission on Rare Diseases, the authorities proposed federalization of drug provision for patients with SMA. In one of the subjects, in particular, they promised that the released money would be used to purchase test systems for patients with diabetes. Olga Germanenko emphasizes: SMA is the most common orphan disease after cystic fibrosis, and, given the number of patients, multiplied by the high cost of treatment, patients cannot but be a “bone across the throat” in regions that need to provide for diabetics, heart patients, people with oncology and a large number of other patients.
The Ministry of Health of the Russian Federation told Kommersant that they had not yet received the bill, but noted that, in accordance with the current legislation, the organization of providing citizens with drugs for the treatment of SMA falls within the powers of state authorities of the constituent entities of the Russian Federation and is carried out at the expense of regional budgets. “At the same time, with the creation of the Circle of Kindness fund, the burden on them in terms of drug provision for patients with serious illnesses, many of whom are children, has been significantly reduced. This year, the age of patients provided by the fund has been increased by another year from the moment they reach the age of majority. Thus, the released funds should be used to provide treatment for patients with other diseases within the powers of the regions,” the ministry said.
Deputy Chairman of the State Duma Health Committee Alexei Kurinny (KPRF) told Kommersant that he “fully” supports the initiative of his St. Petersburg colleagues: transferring these obligations to the federal level will help smooth out inequality. However, the parliamentarian did not predict the prospects for the adoption of the document by the State Duma. He recalled that in 2020 deputies from the Liberal Democratic Party had already made a similar initiative, and it was rejected: “The Ministry of Finance, which is responsible for the federal budget, is categorically against taking on obligations. They argue this position in the department by the fact that there is a division of powers. That is, the provision of orphan patients is the business of the regions, despite the fact that the regions have different opportunities to implement this obligation.”
Olga Germanenko notes that in 2020, when the deputies first considered the possibility of federalizing the SMA, there was no “Circle of Kindness” yet, so it was about more patients. Now, she hopes, the draft law has more chances: “For patients, this is, first of all, a guarantee for the right to provide medicines. Now she’s gone.”
[ad_2]
Source link
