Miks haruldaste haiguste ravimid maksavad miljoneid

Miks haruldaste haiguste ravimid maksavad miljoneid

EN

Why Medicines for Rare Diseases Cost Millions

Eksperimentaalsed ravimid annavad lootust rasket haigust põdevatele inimestele. Ravimifirmad peavad maksma palju raha ravimite arendamise eest. Seetõttu on ravimite hind kõrge.
EN

Experimental medicines give hope to people suffering from serious illnesses. Pharmaceutical companies have to spend a lot of money on drug development. Therefore, the price of medicines is high.

Sebastian on 10-aastane poiss, kes põeb t. See haigus kahjustab lihaseid ja viib surmajuhuleni. Uus võib aidata, kuid see maksab 2,5 miljonit eurot.
EN

Sebastian is a 10-year-old boy who suffers from Duchenne muscular dystrophy. This disease damages muscles and leads to fatal outcomes. A new gene therapy could help, but it costs 2.5 million euros.

Ravimi Elevidys kohta on tekkinud küsimusi. Euroopa ravimiamet peatab selle registreerimise. Kolm patsienti on surnud selle ravimi kasutamise järel. Ühe surma põhjus oli .
EN

Questions have arisen about the drug Elevidys. The European Medicines Agency has halted its registration. Three patients have died after using this drug. One of the causes of death was liver damage.

Ravimiarenduse uuringud ei näidanud, et ravim aitab patsientidel liikuda paranedada. Ravimi tööpõhimõtet ei suudetud tõestada.
EN

Drug development studies did not show that the drug helps patients improve their mobility. The mechanism of action of the drug could not be proven.

USA ravimiamet on ravimile heakskiidu andnud. USA arvestas ravimi hindamisel lühendatud düstrofiini avaldumist lihasrakkudes.
EN

The US Food and Drug Administration has approved the drug. The US considered the expression of truncated dystrophin in muscle cells when evaluating the drug.

Ravimite hind kujuneb mitmest asjaolust. Ravime arendamine on pikk ja kallis protsess. Ettevõtted soovivad teenida kasumit. Haruldaste haiguste ravimid on kallid, sest neid kasutab vähe inimesi.
EN

The price of medicines is determined by several factors. Drug development is a long and expensive process. Companies want to make a profit. Medicines for rare diseases are expensive because they are used by few people.

Elevidys on . Selles kasutatakse viirust, mis aitab toota lühendatud düstrofiini. See valk aitab lihasrakkudel normaalselt töötada. Ravimit manustatakse üks kord ja selle mõju võib kesta mitu aastat.
EN

Elevidys is a gene therapy drug. It uses a virus that helps produce truncated dystrophin. This protein helps muscle cells function normally. The drug is administered once and its effect can last for several years.