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Sick children should live, no matter what it costs our state

Damir Rafgutdinov and his wife Evelina live in the small city of Kumertau in the south of Bashkortostan. He is 22 years old, he works in the north with a rotational basis. She is a year older, a physician.

A year and a half ago, a girl was born in a young family. Parents called her Anelia - "bright."

At 10 months, the girl began to weaken their arms and legs, and the support was completely lost by the year. Local doctors said that Anelia had a hypotonus, and sent her to massages and physiotherapy exercises.

-It was then that my male children began to appear on Instagram. I was so sorry for them. I was still surprised what the amount of the collection is large ( Zulgensma - a drug for the treatment of spinal muscle atrophy, costs $ 2.1 million. - E.K. ), recalls Evelina. - My heart was not in place. The symptoms were the same.

In June, doctors confirmed a terrible diagnosis: SMA 2 type.

Parents began to write letters to the Republican Ministry of Health, with a request to provide Anelia with treatment. Now in Russia only one medicine is registered for the treatment of SMA - Spinraz. One injection costs 125 thousand dollars, take it for life.

Officials answered with unsubscribes.

Then Damir and Evelina turned to the freelance neurologist of the Ufa Clinical Hospital so that he submit documents for the participation of Anelia in the Lottery from the company Novartis. The Zolgensma developer company annually plays 100 doses of the drug around the world. In the summer, a happy injection fell out of one child from Bashkortostan.

- The doctor did not even inform us that she did not submit documents for the lottery. We ourselves learned about this through friends from America.

According to our neurologist, some law allegedly came out, according to which we have no right to participate. This is not true.

We believed the doctor, we had such hope. It turns out that we hoped for nothing.

Not finding the support of the house, the parents, along with Anelia, went to Moscow, look for help from large business companies and journalists. We encountered them at the door of our editorial office.

- And what else did we have to do? Where to go if they refuse their native republic? The child must be saved.

***

Another young family lives in Yekaterinburg. At the 36-year-old Dmitry Bakhtin and 31-year-old Yana Gafinets, a boy Misha was born in July. He was made a preliminary diagnosis of lubricants after two weeks later.

The child became the first baby to be diagnosed with the disease so early.

After a couple of weeks, the baby fell into intensive care with a complication. Now it is on the apparatus of artificial lung ventilation.

- This does not mean that he will remain for Ivl all his life. This means that the disease progresses so quickly that the body cannot cope with the provision of not only motor functions of the legs and hands, but also breathing, ”says Alexander Kurmyshkin, neurologist and director of the SMA Help to the families of the SMA. - Now every day is a diamond. Everything that is lost on this day will never be returned.

Last week, Misha’s parents wrote a letter to the Sverdlovsk Regional Minh Mistemic, in order to provide the baby with spinraza in order to stop the death of motor neurons. The first loading course of four doses costs 32 million rubles. The authorities replied that they would consider the request of the Bakhtins within 30 working days.

Then, in support of Misha, the former mayor of Yekaterinburg Evgeny Roizman spoke on the air of Echo of Moscow. Other media joined the problem. Under the pressure of the public, the Ministry of Health said that the department has two unclaimed spinrazy ampoules. They were intended for another patient, but they managed to raise money for Zulgensma.

Officials promised to give these two bottles to Misha, but with one condition:

The family will provide a guarantee that will purchase the two remaining injections for 15 million rubles at their own expense.

The businessman Vladimir Lisin's fund volunteered to help.

Earlier, in April, the fund already transferred about 120 million rubles to an injection for a girl from Smay Lisa Krayukhina from the Sverdlovsk village of Boyarka. And even earlier, he transferred more than a hundred millions of rubles to the aid of the little Yekaterinburg Ani Novozhilova.

Misha's parents handed the Ministry of Health a guarantee letter. Yesterday, the boy was made the first spinza injection.

“We thank everyone who helped us these days,” says Misha's father. - We especially want to celebrate the doctor Alexander Kurmyshkin. After a conversation with him, we added strength, hope and faith. His first words were: "If you do everything quickly, and they will put Spinraz in the shortest possible time, and then" Zolgensm ", then you and your son can play football." This is the only person who helped us gain great confidence in the struggle for our Misha.

***

Anelia Rafgutdinova and Misha Bakhtin are far from the first children with a diagnosis of SMA, who cannot receive vital medicines in a timely manner. In total, in Russia there are about a thousand patients with such a diagnosis. According to the latest data, only about 130 of them receive a spinraza therapy officially available in the country.

She is not available to the rest. Many are forced to collect unbearable amounts for drugs on their own.

Since January, the "New" has been seeking from the state to solve this problem. Experts and charitable foundations propose to introduce the disease in the list of high -cost nosologies. This will finance expensive drugs from the federal budget, and not the regional, as is happening now.

At the highest level, the authorities talked about the drug support of children with rare diseases on the eve of voting for amendments to the Constitution. In June, Deputy Prime Minister Tatyana Golikova advocated the creation of a special fund, from which money will be allocated for Orphan medicines. She proposed to replenish it from the means of federal and regional budgets plus sponsorship of a “socially oriented business”.

This idea was criticized by parents of patients and charitable foundations.

Two weeks after the meeting with Golikova, Vladimir Putin proposed increasing the income tax (personal income tax) from 13% to 15%. The initiative will affect citizens who earn more than 5 million rubles a year. According to the president, such a system will allow to attract more than 60 billion rubles to the budget annually, which will purposefully go to the aid of seriously ill children.

How this mechanism will work is still unclear.

“New” asked Golikova whether a separate body would be created to control the expenditure of money from tax. And if so, then how it will form and according to what criteria the candidates will take place. However, the Deputy Prime Minister did not respond to our request.

The editors also sent a letter to the presidential administration with a request to create a working group of experts and offered specialists who could enter it.

Officially, our initiative has not yet been commented. Therefore - again!

When will patients with SMs begin to receive vital assistance in a timely manner?

If this is not done now, the consequences for sick children will become irreversible.

How to help
Anelia Rafgutdinova:

Sberbank Online: 8 (917) 804 58 29 (Evelina Vineovna R.)

Sberbank card number: 4276 0600 6209 4167

Count number of Sberbank: 40817810506005581767

PayPal: R.Dami98@mail.ru

Yandex.Money: 4100115626818036

QIWI: 89178045829

Uralsib Bank: 4198045138724207

Currency account: 40817840306009525054 (recipient of Rafgutdinova Evelina Vinerovna)

The Mother and Child Foundation Anelia 300, where “300” is the amount of the transfer, to the short number 3434, be sure to confirm your translation. Recipient Bank: Alfa-Bank JSC branch of Nizhny Novgorodsky Kuzhtau. BC Bank: 042202824. K/Account: 301018102000000824. Settlement account: 40703810229310000015. In the appointment of payment, be sure to indicate: charity donation of rafgutdin anelia.

Misha Bakhtin:

Sberbank: 4276 1608 8452 2088 (Dmitry Yuryevich B.)

Sberbank online:

+7 905 800 66 92 (Dmitry Yuryevich B.)

+7 922 122 19 22 (Yana Fedorovna G.)

Neuva Bank: 4375 6300 0030 7606 (Dmitry Bakhtin)

Alfa-Bank: 4584 4328 2286 7090

PayPal: Gafinets Yana

https://www.paypal.me/mishkawinsma

gafinec@bk.ru

+7 (922) 122 19 22