There is no money, but children are being treated

How poor Poland was able to put the fight against the smell on the stream

Poland is not the most prosperous country in Europe. In addition, in healthcare there, according to my Polish colleagues-colleague, “a complete mess is no less than you” (well, that is, we have in Russia). Nevertheless, the medical officials of this country had enough conscience and determination (of course, not without public pressure) to meet hundreds of sick SMA in Poland and dozens of Polish smell, trying to find salvation from this terrible disease abroad.

And for a year now, people suffering from the SMA have been receiving a free expensive spinraz medicine from the state (Spinraza - a registered trade name for a medicine with the international name Nusinersen). According to the online portal of the Polish SMA Foundation, the practical stage in the provision of Poles Spinraza began on December 17, 2018, when the Minister of Health of Poland Lukash Shiman and the leadership of the company, which produces Spinraz, agreed that this medicine will be covered by a state procurement program for the treatment of all those suffering from the SMA

Regardless of the form of the disease and the age of the patient.

The agreement was soon supported by the relevant order of the ministry, and from January 1, 2019, Spinraz was included in the list of drugs purchased on budgetary funds.

Then they launched a program during which contracts were concluded in the Polish governments between the voivodsk departments of the National Health Fund and about one and a half dozen clinics in the field.

Then - a mandatory procedure for the contest for the delivery of medicines to clinics and other logistics and organizational actions.

After two to three months, the medicine reached the first patients.

The program covered 579 patients - children and adults.

Of course, not everything goes smoothly. According to the SMA Foundation, published at the end of this January, the program works most clearly for children. Adult patients have problems with access to treatment and the pace of connection to the program - especially in the eastern voices of Poland. In some governorships, either there are no dedicated medical centers for the treatment of SMA, or only children have access to treatment in medical centers. There is a problem with the establishment of annual limits for connecting to the program. There are other complaints of patients who meticulously fixes the fund.

However, basic decisions have been made, the mechanism is launched, everything else can be finished. The main thing is that their families are now not hanging over the patients and members of their families, which is almost insoluble for the vast majority of the Poles, the problem of constant, desperate search for saving injections that must be done regularly.

Recall: one bottle of 5 ml for one injection costs 82,500 euros.

And what, Poland is so the only one among our Western neighbors? I asked a colleague, a “new” Sobrik in Brussels, Alexander Mineev to clarify this issue, turning to the sources of the European Union. That's what he "dug."

There is no unified EU policy to ensure spinraza yet. But today, over 58 countries of the world have already agreed to compensate to patients the cost of medicine (completely for everyone or for some categories), or negotiations with manufacturers are conducting public procurement.

Today, the complete state prosecution of spinraza for all categories and all ages of patients provide, except Poland, members of the EU Austria, Belgium, Germany, Luxembourg, Romania (also, frankly, not from the rich!) And the Czech Republic. Of the non -Europeans - Japan.

Part of the countries of Europe (there are 17) reimburses the cost not to all categories of patients-depending on the type of SMA, the age of the patient or on the basis of some other criteria. This category includes, for example, France with Italy, and the countries of Northern Europe, and some countries of Central and Southern Europe. Among the non -Europeans in the same category are Israel, Australia and the USA.

Russia is listed in the ranks of a massive group of 30 countries so far only “leading negotiations”. In this company, for example, the countries of the Baltic, Canada, South Korea and the rich oil states of the Persian Gulf.

And now about the attitude in Poland and other EU countries to the American genetic miracle recent AVXS-101, or Zolgensma (Zolgensma-a trademark in the United States of the drug with the international name onaseMnogene abeparvorec), manufacturer Avexis.

It is registered for use only in the USA.

In other countries, including EU countries, they are only looking at him.

The European Union is considered an “experimental drug” and the term “medicine” is not even applied to it. To date, the EU believes that there is no convincing scientific data so far that its effectiveness in the treatment of lubricants is higher than that of spinras/nusinsen. Therefore, the only drug in the countries of the European Union is only allowed for the treatment of spinal muscle atrophy in the countries of the European Union remains today. But they do not stop looking closely at the Zulgensma.

Act!
To consolidate in the Constitution the right of children with rare diseases for medical care: petition