“We demand to give our children the drug Spinraza, which has been in Russia for a year and a half, and for which money was allocated from the federal budget. Without it, our children may die, and it will be a painful death. We stood in the cold with posters for several hours, but no one came out to us - neither the Minister of Health, nor his deputies. Only the secretary appeared, who registered our appeal to the President of Tatarstan", - Anastasia Minyazova, the mother of a child with spinal muscular atrophy, told Novye Izvestia.
Her son Gleb is 8 years old, he is in the second grade, but he may not go to the third: the child's strength decreases every day. He gets very tired, and sometimes, tired of walking, he starts to crawl on all fours ... Spinraza medicine can save the boy with spinal muscular atrophy. This drug is very expensive: one dose is about 5 and a half million rubles. Several such doses are needed. In the first year of treatment, 6 ampoules will be required, then 3 ampoules per year. This medicine appeared in Russia a year and a half ago and was recently included in the list of essential medicines. And even money was found in the budget for it. But the children never get the medicine.
It is clear that spending millions of dollars for the regional budget is a loss, especially in a pandemic, when many industries are going through hard times. But we are talking about Tatarstan - the richest region of Russia. Its projected budget for 2021 should amount to 274 billion 636 million 726.5 thousand rubles. Is there really no item of expenditure for children with a terminally serious illness? Especially when you consider that there is help from the federal budget. As you know, at the end of 2020, the government allocated 10 billion rubles for the treatment of children with rare diseases. At a special meeting, this decision was made by Prime Minister Mikhail Mishustin.
“The money has been allocated, but the Ministry of Health of Tatarstan has not allocated Spinraza to my son. On June 16, we won the court, according to the decision of which the Ministry of Health of Tatarstan was obliged to immediately provide Gleb with the drug Spinraza in accordance with the doctors' prescriptions. But instead, the Tatarstan Ministry of Health appealed the court's decision! The Supreme Court of Tatarstan upheld the decision of the first instance court. And the drug was not, and is not. The Ministry of Health of Tatarstan writes that the Krug of Kind charity foundation should provide us with medicine”, - says Anastasia Minyazova, the mother of a child with spinal muscular atrophy.
“The worst thing is you know what? Children understand that they can die. They grow up, use the Internet, find information about the course of their illness, understand what torments they will face. My oldest daughter is 9 years old and has spinal muscular atrophy. Until the age of 6, she walked and could stand. Now he can only move in a wheelchair. Scoliosis is progressing. If you do not start to treat - children subsequently literally "fold in half", their scoliosis progresses. They cannot swallow, breathe on their own, pneumonia begins, they are transferred to artificial lung ventilation. The drug Spinraza is in Russia, it is included in the list of vital. We grab onto it like the last straw. Previously, we dreamed that our daughter would walk, then that she would sit, but now we just wanted to live, ”says Alsu Galiullina. Her family also went through several judicial instances, which ruled that the Spinraza drug should be allocated to her daughter, Syumbel Galiullina, as soon as possible in accordance with the doctors' prescriptions. But instead of helping the child, the Tatarstan Ministry of Health is trying to challenge the court's decision. What is this if not blasphemy?
“We won two trials against the Ministry of Health of Tatarstan. However, this department stubbornly refuses to enforce court decisions. It got to the point that the Investigative Committee opened a case against the regional Ministry of Health. But 6 families with children with SMA were united in one case, in respect of which our regional Ministry of Health does not comply with the court decision on the provision of the medicine. For this, the department faces a maximum fine of 100 thousand rubles”, - says Alsu Galiullina.
While this strange judicial red tape is going on, the list of victims of spinal muscular atrophy is growing.
Kostya Voronikhin from Achinsk, Krasnoyarsk Territory, died on March 9, the day before his first birthday : on March 10 he would have turned a year. A month ago, he was assigned Spinraza for health reasons. But he was not treated. In the Krasnoyarsk Territory, this is the second death of a child with SMA who was deprived of treatment. On January 30, Zakhar Rukosuev died in the intensive care unit of the Krasnoyarsk Regional Children's Hospital. He was two years and eight months old. At one year and four months, he was diagnosed with SMA - spinal muscular atrophy. Death occurred as a result of cardiac arrest. There are more and more such stories. And those who are sick understand that the same thing may await them in the near future, if the necessary medicines are not available.
But sick children and their parents find themselves in a vicious circle: the regional Ministry of Health refers to the Krug of Kind charity foundation, and the foundation points to the regional Ministry of Health. And at the same time he reports in social networks about his tireless work. In the meantime, there were no cures, and still no. Children keep dying ...
The standard response that parents of children with SMA receive to their letters and appeals to regional ministries of health is as follows:
"In accordance with the Federal Law of 11/23/2020" On the introduction of part 2 of the Tax Code of the Russian Federation in terms of taxation of income of individuals in excess of 5 million rubles for the tax period", - the tax system is set at 15% if the income of individuals exceeds 5 million rubles per year. In accordance with the Presidential Decree of 01/05/2021, the Fund was established to support children with severe life-threatening and chronic diseases, incl. rare orphan diseases "Circle of good". In accordance with this decree, it is envisaged to provide children with severe life-threatening diseases with drugs and medical products, incl. Spinraza (Nusinersen) at the expense of these funds from the state budget, voluntary contributions and donations, as well as other sources".
The Circle of Kindness Foundation was established by decree of the President of Russia in January this year. Its goals are precisely to provide children with serious and rare diseases with expensive medicines. But 2 months have passed since the establishment of the Circle of Kindness, and the distress signals from dying children are sounding louder and louder. However, lawyers already have a lot of questions about this fund.
“This fund was created, in my opinion, not by chance. At the moment when we were in full swing discussing amendments to the Constitution, about 5 courts were going to the ECHR on refusal to provide medicines to children with spinal muscular atrophy. Moreover, several cases were referred to the Grand Jury of the ECHR, they received publicity in the West. It was about the violation of the rights of the child in Russia. It was at this moment that the Ministry of Health suddenly included Spinraza in the list of essential medicines, and the president announced the creation of the Circle of Kindness Foundation. Archpriest Alexander Tkachenko was appointed chairman of the board of the foundation. In fact, this is a strange organization. The board of trustees includes priests and artists. I am a confidant of almost 400 parents of children with rare life-threatening diseases, they offered to include me on the board of trustees of this fund, but I was refused", - lawyer Alexander Kurmyshkin told Novye Izvestia.
On the page of the Circle of Kindness Foundation on the Facebook social network, you can read about numerous meetings, conferences and discussions. However, on March 2, an encouraging message appeared: “Children with serious illnesses began to receive help from the Circle of Kindness Foundation. The first children diagnosed with spinal muscular atrophy have already received therapy with Spinraza (Nusinersen). The experts of the Krug of Kindness Foundation approved more than 480 applications for the provision of medical care to children from 48 regions of the country. All these children will receive essential medications in the near future. The procedure for the procurement of drugs for them began immediately after the approval of applications".
We asked parents of children with spinal muscular atrophy whether their children received Spinraza from the Circle of Kindness.
“When we heard about it and read it on social networks, we immediately went to the district hospital. But we were told that they did not receive Spinraz, there were no reports about this in Tatarstan. The Krug of Kindness foundation does not respond to our requests. If these medicines were received, we would not have dared to picket at the building of the government of the republic”, - Anastasia Minyazova told Novye Izvestia.
In other regions, families of children with spinal muscular atrophy also did not hear anything about Spinraza's admission, no one contacted them. A strange phone number is listed on the foundation's website, which consists of only nines. If you dial it, you can hear: "The subscriber is not registered in the network"...
Many are under the impression that the creation of this fund has led to confusion and confusion. “Before the foundation of the Circle of Kindness foundation, responsibility for children with rare diseases, including those with spinal muscular atrophy, lay with the regional ministries of health. After the creation of this fund, confusion ensued. It seems that the federal Ministry of Health, under the auspices of which the fund exists, dumps everything on the local authorities, and in the regions they nod at the Circle of Kindness fund. As a result, no one helps children with rare diseases. The Ministry of Health tells us: "We do not influence the regions." Excuse me, but who influences them then? And in general, a strange situation is developing: the federal government allocated money, enough time has passed since the registration of the fund, there are meetings and conferences every day. And there weren't any medicines, although enough time has passed”, - the co-founder of the Star in the Palm Foundation, film director Alexandra Frank, is perplexed.
In fact, the Circle of Good Foundation buys medicines for children with rare diseases. But their distribution raises questions for both specialists and parents.
“I know 3 people who bought expensive drugs for a whole year. In St. Petersburg, Moscow and Arkhangelsk, it seems. There are no other reports of receiving Spinraza in Russia. Nobody explains why the fund bought the medicines for them”, - said lawyer Yury Karmyshkin.
We contacted representatives of the “Krug of Kindness” foundation and asked to comment on the situation. The source, who wished to remain unnamed, explained that the fund accepted applications from 40 regions of Russia for expensive medicines for children, but the supplies would begin gradually, in stages. Also, according to the representative of the fund, drugs for the treatment of spinal muscular atrophy are not a panacea. In addition, the fund is a source of additional funding for the treatment of children with rare diseases.
We also asked the Russian Ministry of Health about the person responsible for providing medicines to children with SMA. At the time of publication, we did not receive an answer. If it is received, we will certainly publish it.
So far, the conclusions suggest themselves little comforting. It seems that getting health officials to respond to the pain of children is a difficult task. And the situation in Tatarstan is far from the only one. Unsubscribing and keeping silent for appeals from desperate parents are common tactics. But still, there is one lever of pressure on the bureaucratic apparatus from the health care system. “In the Krasnodar Territory, the situation was approximately the same as in Tatarstan, where neither the local health minister nor the governor responded to the requests of the parents of seriously ill children with SMA. So it was until the Instagram of the governor of the Kasnodar Territory was attacked by thousands of indignant people, in social networks the callousness of officials received loud publicity. And what do you think, in a few days all the issues with medications were resolved!”, - says Alexandra Frank.
Publicity seems to be the only way to get health officials to respond to the pain of children and their parents. Dozens of structures are responsible for the health of children - from the federal Ministry of Health to charitable foundations. These are thousands of people, among whom today there is not a single one who could solve the problem with medicines for patients with spinal muscular atrophy.