The ‘Movers and Shakers’ Experience
Prof Peter Jenner
Despite having been in the Parkinson's disease business for many years, I’d never done a podcast and I certainly had never been interviewed in the back of a busy pub in Ladbroke Grove in Central London. When I was asked to contribute to the Movers and Shakers podcast, I readily accepted as this felt like a little tickle to my ego. But as the time approached, I started to feel that I'd been summoned to the headmaster's office to explain myself and to be given the Paxman, Mostyn and Cellan-Jones approach to grilling those who’ve not lived up to expectations. In fact, I brought my wife with me to hold my hand. Nothing could have been further from the truth when the day arrived. A warm welcome followed by hearty lunch was then itself followed by exposure to some mighty intellects all of whom are affected by Parkinson's disease and all of whom care deeply about the Parkinson's disease community and the progress or lack of it that research and innovation is making into treating the illness and hopefully stopping or slowing its progression.
I listened to a discussion about frustrations over the results of the clinical trial of exenatide for slowing the advance of the disease. The results are needed now and the drug is needed now is what I heard. Why is it taking so long was the message? Understandably everybody wants to see something which treats the progression of Parkinson's disease rather than just the symptoms. My view was that there needs to be careful analysis of all the data before the results of this study are revealed. Many false dawns have occurred for other drugs for Parkinson's disease only for expectations to crash on the rocks of despair. But be assured the Movers and Shakers will keep the pressure on until the full story is revealed.
I was there to be questioned about the use of enzyme inhibitors in Parkinson's disease of which there are three types (peripheral dopa decarboxylase inhibitors, MAO-B inhibitors and COMT inhibitors) and why they are not used more commonly. Very interestingly, I found that nobody seemed to be aware that all the forms of levodopa that they take already contain one enzyme inhibitor (a decarboxylase inhibitor) that is absolutely necessary for the drug to exert its optimal effects. So it appears that even the Movers and Shakers can live and learn about some of the basics of how Parkinson's disease is treated and also help to educate the rest of the patient community and indeed treating physicians who often have a limited understanding of the way in which the drugs they routinely use, help their patients with Parkinson's disease. There was a lively discussion about why some of the drugs that are used in Parkinson's disease are not universally available and in particular, we discussed the use of an enzyme inhibitor called opicapone (a COMT inhibitor) which has been more recently introduced into therapy. So effective was the drug for the Judge that he thought it should be available to all. This is probably the correct view, but it needed explanation about how the pharma industry works and the criteria and priorities which determine which drugs are available to which parts of the patient community and in which parts of the world. I think the conclusion of this was that the Movers and Shakers need to summons somebody from the pharma companies who can explain the priorities of the industry, the way in which drugs are priced and marketed and why Parkinson's disease would not necessarily be a therapeutic area of choice and why perhaps novel enzyme inhibitors would not compete well for financial support against more expansive and lucrative markets in the drug world.
Not that the conversation always stayed on target. I mentioned something called ‘the blood- brain barrier’ and immediately I'm asked well what is it? ‘It's a barrier that stops things getting into the brain’ I blubber. ‘Yes’ but does it differ in people with Parkinson's disease? More sensibly I answer that it may affect the way in which drugs get into the brain and it may affect the way in which toxic substances can get into do damage. This sort of lateral thinking is just what you would expect from a group of such high intellect individuals that make up the Movers and Shakers. More lateral thinking was limited by the discussion being drawn to a close but what followed was even more fascinating and more fundamental to understanding Parkinson's disease and that was the role of gender*.
More men than women develop the illness for reasons which are still not clear. But what is truly amazing is that it has only recently been recognised that Parkinson's disease affects women in a different way to men from symptomatology and disease progression, to the effects of drugs, to adverse events and yet little has been done to understand the nature of this gender difference. No therapies are administered on the basis of gender. None of the criteria which separate men and women are used to dictate how, when and how much therapy is required. Evidence suggests that oestrogen is key to the difference, but this still needs a lot of investigation. This discussion enthused me more than talking about enzyme inhibitors and I think it raised fundamental questions about how many basics of Parkinson's disease are truly understood. In my view there's a need to go back and look at key factors that affect the prevalence, onset, progression and treatment of the disease.
I had a fantastic day with the Movers and Shakers and I emerged into the Ladbroke Grove sunshine relatively unscathed. It had all gone on so long that I'd missed my train back to the Wilds of East Anglia so we retired to an Italian restaurant in Canning Town and I refreshed myself with a delicious spaghetti vongole washed down with a bottle of their finest white wine before the trek home started. Would I do it again? Yes in a heartbeat. I would go back to the Movers and Shakers because here you have a group of people who are going to change the way in which Parkinson's disease is considered and who's Parky Charter is something that everybody should sign up to so ensuring that those with the illness receives the treatment they deserve.
*Note: on 9 September 2024 Prof Jenner not only participated in the recording of Episode 2 “Enzyme Blockers”, released on 14 September but also watched the recording of Episode 6 “Women and Parkinson’s” released on 12 October 2024.
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