Five questions to the Ministry of Health

Leaving patients without medicines, the state deprives them of the right to life

A month and a half has passed since Novaya took up the problem of providing medical care to patients with spinal muscular atrophy (SMA). During this time, the Ministry of Health has not answered us what significant measures it intends to take to establish the supply of vital medicines to children and adults. In response to one of our requests, we received a letter from the department, in each paragraph of which the incompetence of its compilers showed through. The department has not yet responded to the second request for comment on the situation, although all the deadlines specified in the Law “On Mass Media” have long expired.

Novaya Demands Ministry of Health to Respond to Remaining Questions Immediately

In order to know what kind of medical care is needed for patients with SMA and to what extent, the state must know how many patients with this diagnosis are in the country. The Ministry of Health previously reported that it asked the regions to clarify the data on the number of patients, but this, in our opinion, is not enough: the state should take full account of patients.

• When and in what terms will an official register of SMA patients be created in Russia?

Now the only medicine for SMA registered in the Russian Federation, Spinraza, is purchased by the regions, but local budgets, as a rule, cannot cope with this due to the high cost of the drug. In this regard, a group of deputies introduced a bill on paying for medicines from the federal budget, but it was rejected by the profile committee of the State Duma.

• What actions does the Ministry of Health intend to take so that the regions finally have money to purchase a vital medicine? Why was the bill withdrawn?

According to approximate expert estimates, about 50 billion rubles a year are needed to provide assistance to all patients with SMA. The Accounts Chamber reported that about 1.1 trillion rubles of budget funds were not spent last year, which, according to Prime Minister Mikhail Mishustin, “is an unacceptable amount.”

• Is it possible to request unspent budget funds for the treatment of patients with SMA? What is the fastest way to do this?

The Ministry of Health announced its intention to conduct a clinical trial of Spinraza, which, according to experts, is unreasonable and can complicate and slow down the already difficult process of obtaining drugs. In addition, the department did not specify how the testing will take place and on how many patients.

• What motivates the need for additional clinical trials? How will care be provided to patients until the end of this procedure?

Patients repeatedly complained about the quality of palliative care, especially in the regions. Novaya published stories of patients who had to wait for months to be provided with the necessary respiratory equipment. During the waiting time, some of them die, and in the case of SMA, a delay in the provision of equipment even for a few days can be fatal. At the same time, according to the Ministry of Health, the problem of providing patients with ventilators has been “solved”.

• What steps does the department intend to take to establish the provision of palliative care? Is it possible to amend the legislation that would allow patients with orphan diseases to access the equipment as quickly as possible and through a simplified procedure?

Novaya asks the Ministry of Health to answer questions as soon as possible. Any delay can cost little patients their lives. We want to remind the authorities once again: by leaving the sick without medicines and other medical care, you are actually depriving them of the right to life.