Alzheimer's: Medicine, Money, and Politics

I have Alzheimer's

For the first time, there are drugs that can actually slow down the disease. I and many others are waiting to receive them. But I will probably die, at least cognitively, while waiting for a decision.

The new drugs lecanemab (Leqembi) and donanemab (Kinsula) work. Not perfectly. But they slow down the disease. And they can give me the opportunity to be myself for a while. For someone living with Alzheimer's, that is no small thing.

It's easy to think that a drug is either approved or not. But in reality, there are several different decisions – and each authority has its say.

Many instances must have their say.

European Medicines Agency (EMA) says: This drug works well enough and is safe enough. Thus, a scientific yes (for certain patient groups)

European Commission says: The drug may be sold and used in the EU. Thus, a legal yes

The Dental and Pharmaceutical Benefits Agency (TLV) says: It is too expensive in relation to its benefit. Economically questionable. Thus, in practice, no in its current form

The New Therapy Council (NT-rådet) says: We have not said yes yet – and if we do, it will be very limited. Thus: We are awaiting – leaning towards a restrictive yes

Sweden's regions say: We will only pay if we receive a clear recommendation and can afford the cost. Thus, in practice, no for now

So this is how it looks right now. A drug can be approved – but not used.