A new site to visit

This month, a good friend of mine was diagnosed with Parkinson’s – and she had lots of questions. I could help her sort through a lot of them, but she needs more that what I can offer. Like anyone with a complex, debilitating disease, she needs a community and access to information from multiple points of view. Fortunately, there are many such sources.

I want to highlight a new one that warrants everyone to visit. Put together by the founders of No Silver Bullet 4 PD, Parkinson’s Insights seeks to empower patients on their journeys. This site includes disease “hacks” addressing issues such as anxiety, constipation, timing of meals relative to levodopa administration – from the perspective of a person with Parkinson’s. With the pressure on providers to see as many patients as quickly as possible, these topics don’t typically get the attention they deserve.

Viewers get to hear from two of the world’s experts in the disease, Drs. Michael Okun and Bas Bloem. Both present science-driven perspectives, and for visual learners, Michael often includes nice graphics for visual learners.

And knowing the founders of Parkinson’s Insights as I do, they would appreciate and use viewers’ feedback to make the site better.

While I am a fan of this site, there is an important distinction from my point of view. The site accepts the position that there is no silver bullet for conquering Parkinson’s. I do not accept that as an acceptable view, since the data say there is one ready to be proven capable of conquering the disease.

As I’ve detailed in this newsletter, in a wide range of webinars/podcasts and in this peer reviewed scientific paper, data show that dopamine reduction therapy with RB-190 can reverse pathology. Admittedly, these are pre-clinical laboratory models, not data in people. But the FDA thought they were sufficiently strong to justify a Phase 2A clinical trial of RB-190.

As an aside, I can’t find any drug that was tested in nine models of its target disease with all nine showing reversed disease pathology. I’ve asked others and they can’t cite an example. I’m sure they are there, but this is a very uncommon degree of evidence. And people developing drugs know that while no single model predicts completely accurately what happens in people, when data from multiple models show the same thing, the conclusions are more likely to be predictive of the clinical effects. So “9 for 9” is an impressive batting average – and one that should make anyone eager to see the clinical data.  

It’s ironic and hard to believe, but many Parkinson’s experts seem to be more conservative than the FDA, and resistant to endorse a clinical trial of RB-190 despite so much data that the FDA felt were sufficient.

There is resistance to the concept that dopamine reduction is the proper way to treat Parkinson’s. I understand. There was resistance to Semmelweis’ data when he suggested that doctors should wash their hands after dissecting cadavers in the anatomy lab before delivering babies. Fifteen years later, Pasteur advocated similarly and he did so more persuasively. None of us would allow a surgeon to operate on us without washing their hands first.