Parkinson’s disease is not a terminal disease in many people’s opinion. Few people actually die of Parkinson’s. Complications from PD frequently contribute to death, especially after years of living with it. So, usually medical professionals describe PD as progressive, debilitating and chronic. The description terminal is usually reserved for diseases such as cancer, rapid vital organ failure, and Lou Gehrig's disease (or ALS).
Parkinson’s is a difficult condition because of the limitations many people experience. It robs many people’s personal freedoms, and shackles life’s activities. With that in mind, we repeat the question (repeating because we’re not the first to ask it): ‘Should someone living with Parkinson’s have the right to take an experimental medication before it is approved by the FDA?’
If you qualify for a clinical trial and you end up getting the drug instead of the placebo, you may have access to a beneficial therapy before it is approved. However, what if you learn about a drug that might treat one of your symptoms well. What is you are willing to assume the risk that it may not work, or that it may injure you?
After all, it is your body. However, you are not terminally ill. However, the life that PD eventually subjects some people to constrains them so much that the risk of an experimental treatment may be smaller than the misery of constant tremors, severe depression, unexplainable pain, or exhausting rigidity.
As, this essay from the August 3rd New England Journal of Medicine points out, cancer patients under some circumstances, can obtain experimental treatments usually when they are in the final phase of clinical trials.
What do you think? Should people living with Parkinson’s also have access to treatments maturing through the clinical trial process? Email us at mnilsen@myparkinsonsinfo.com and tell us what you think. If you think such an exception is not appropriate for people with Parkinson’s, tell us why. If you would like to see more access to experimental medications for PWPs, tell us how you think this could work.
We’ve been trying to get in touch with some pharmacists who can help us pass on some information about Parkinson’s medications. We want to talk about some possible interactions with PD meds and other medications, supplements and foods. We’ll let you know what we learn.