Follow Up SDG 3 – Rare diseases! (Year 9 – Year 11)
In small countries like Malta, because there is a small number of patients with rare diseases, some medicines are not available or are very expensive. All Member States including small states like Malta should have fair, equal and affordable access.
How can this be achieved?
Have you ever heard the term orphan drugs? It means that the disease that cures the drug is so rare that no pharmaceutical company wants to produce the drug because they won’t make money from it. So since no one wants to produce it, it becomes known an orphan drug.
So in order to help these people governments promise that if they find and produce the orphan drug that cures the rare disease they can be the ONLY company in the world to produce it for the next 7 years, and that means NO other company can produce it.
That also means that this company can increase the cost of the drug to whatever price they decide to make a lot of profit. That means that the people with the rare diseases cannot afford the drugs and are desperate.
Watch this video to learn more about it.
All this was discussed at EU level on the 14th and 15th May 2020.
Log in here to learn more: https://www.eurordis.org/ecrd
Try to find what happened! https://www.rare-diseases.eu/