“House with a Lighthouse” fears problems with the issuance of unregistered drugs in Russian regions

Director of the House with a Lighthouse charity foundation Lida Moniava commented on the news about the purchase of 10 thousand packages of unregistered medicines for seriously ill children. They want to purchase medicines from foreign manufacturers and import them into Russia by the end of October.

Moniava said it is difficult to say whether this order will cover the needs of patients because there is a problem with collecting data on those who need the drugs.

“There is an independent registry that is collected by the Children’s Hospice “House with a Lighthouse.” Parents themselves submit their data there. If you rely on this register, then 10 thousand packages will be enough for the first time. But the problem is that in our registry we only have active families who are on Facebook and have declared themselves. I’m sure there are also quite a lot of those who are not on Facebook, but in the regions there are difficulties in identifying them. District clinics and regional hospitals themselves do not know about these drugs, and do not know who needs them, and do not provide data about these patients. As I understand it, the most active and most proactive parents will receive the medications, and there will be difficulties with regional health authorities regarding adding other patients to these lists,” she explained.

Moniava suggests that there should be no problems with the purchase of drugs in the future, but difficulties may arise with issuing drugs to children from the regions.

“I cannot answer on behalf of the Ministry of Health, but, as far as we understand, this is the first purchase, and then, as soon as the drugs run out, we hope there will be a second one. It seems to me that there should no longer be a problem with purchasing, but there will be problems with issuing: who will issue and on what basis. Muscovite families are one thing; it will be easy for them to get it. And what about families from a distant region - how will delivery, issuance, and appointment be carried out to them? It is very important that there be teleconferences so that there is no need to take children from the regions to Moscow for examination in order to prescribe the drug,” Moniava said.

The Moscow Endocrine Plant Federal State Unitary Enterprise requested four drugs from foreign manufacturers: diazepam, phenobarbital and midazolam in forms that are not produced in Russia, as well as clobazam (Frisium), which is not registered in the Russian Federation.

An independent register of those in need of unregistered drugs is maintained by the House with a Lighthouse Children's Hospice and the Vera Foundation. On her Facebook page, Moniava published a link to a questionnaire that needs to be filled out by those in need of unregistered drugs.