Can patient engagement foster access?

On September 24th representatives from OIFE attended a very interesting webinar on pricing of rare disease drugs. It was called “How patient engagement can foster access through improved affordability” and included lectures from pharma companies, patient experts and health economists. The speakers raised a lot of important questions like:

  • What are the principles behind drug prices?
  • Why are the US paying higher prices for drugs than other countries?
  • Are orphan (rare disease) drugs only for people in rich countries?
  • How are drug prices decided in different countries?
  • How can patient organizations and local authorities influence access to drugs for rare diseases?
  • Should countries in Europe collaborate more when negotiating with pharma companies?
  • How can we have more transparency?
  • Do we need a completely different model of health technology assessment (HTA) internationally?

Join PARADIGM Open Forum!

The webinar was a part of PARADIGM Open Forum where anyone interested can join:

Chart with drug prices

Access to drugs vary between countries in Europe

Across Europe there is disparity in the average time for new drugs to be approved and accessible to patients. There are a number of factors delaying these processes. Typically, a pharmaceutical company will initially seek centralised approval from the European Medicines Agency (EMA) for a marketing authorisation. This approval, if granted, demonstrates that the EMA believes that the medicine is safe and effective and can be sold within Europe. However, it does not agree on, or decide the price of the medicine. Manufacturers must still negotiate over price with each country on an individual basis. Country approvals can take a long time and there are big differences from country to country. For an orphan drug, the delay between EMA approval and in-country commercial availability varies from 39 days in Germany to 1,236 days in Poland! Read more about this topic in this article.