Merck's letter to Australian doctors is iconic, a real collector's item: 50% to 80% of patients will be denied the drug that allows them to function.... who decides? Who gets the drugs and who does not? Triage time. Playing lifeboat. Ten people in a room, drugs enough for only two of them. Who decides who are the eight and who are the two? What criteria?
In the Australian letter, Merck asks the doctors to help out with the triage. But notice - nothing Parkie is consulted. Or informed. Our lives are on the line and we are not even part of the discussions. Somebody somewhere handed out this addictive drug like candies and then unilaterally pulled the plug, without consultation or information or conversation with the people who will suffer as a result. It's the same system as the Amgen GDNF caper. Now, like then, we are groping for information about decisions to cut us off from medication that allows us to walk down the street. Who is going to decide who gets cut off from the drug? That should be a public debate in every neurology department, and especially, in every Parkinson's organisation.
One way would be by drawing straws. A lottery. Highest bidder. No, it is going to be "who needs it most". But again, by what criteria? I need it more than you do, but your doctor has more pull. Who are the 8 who get thrown off the lifeboat to save the two - that should be decided in every Parkinson's group. At least as theater. Because what is going on is not right. Let the doctors come forward and explain exactly what criteria they are using to decide thumbs up or thumbs down. What are the regulations of this triage, and who is supervising the regulations? Health Canada? Or Merck? What are the criteria, gentlemen? Ten Parkies in a room and you got drugs for two. We want to hear you say what you are going to do.