A Future Direction of Treatment for PwPs
“After participating in 10 focus groups of PWPs across the country with Parkinson Canada and being an avid news watcher as well as living with Parkinson’s Disease for almost 10 years, I decided to capture my thoughts and suggestions for a future direction on paper.”
Joe van Koeverden, MBA
705-868-2659
www.joewithpd.com
Poem: Eyes Wide Open!
Moving on:
That would basically sum up the state of the nations as we emerge from the Global Pandemic crisis and the bad news that is broadcasted in USA and Canada is that we should shop early for Christmas as there may be “nothing left on the shelves”. If that is what you are worried about, then we may have a difficult time collaborating on feasible and cost-effective plan for future treatment options, that will be attractive to funders, donors, medical community and last but not least, the PwPs. We have covered the big picture, now let’s look at some of the critical elements of our circumstances as PWP.
We are a peculiar group of people that suffer from a common disease but who react in different ways to this condition. Many people say that “if you know one person with PD, you know one person with PD”. A very individual set of symptoms expressing themselves differently and requiring individual assessment for ongoing care. This is also a degenerative illness that can be diagnosed sometimes decades after the first signs show themselves. There is no cure, but the pharmaceutical industry has developed a number of symptoms managing medications. The “one a day” or more pill of the day is costing us dearly. Even concocting combinations of old “safe” drugs to be gobbled up despite a menagerie of short and long-term side effects. Our core drug (levodopa) has weathered the test of time and provides a solid overall medication, but it is no cure with its own defects.
Due to the need to eliminate any other possible illness before a PD diagnosis is presented, this disease starts out as an expensive venture due to months of tests and analysis before it is confirmed. The confirmation of the condition is only given if the prescribed meds have the desired impact on the symptoms. This is then transcribed into a lifetime of meds to manage our symptoms until other complicating factors may cause the system failure due to the weak condition of the patient. So, working in alignment with Big Pharma may simply develop more “one a day” solutions for a small group of PWPs.
When we look at doctors, neurologist, and Movement Disorder Specialists (MDS) as our solution, we are quick to sit up straight and look at the facts. There are at least 118,000 PWP’s in this great big country of ours. A neurologist suggested he could see 2,000 patients in a year. As each patient is expected to be seen every 6 months that would be 1,000 actual patients. For the current population of PWPs, Canada would need approximately (118,000/1,000) 118 MDS at this time and another new graduate every month (12/year) to meet the level of diagnosis.
But for a country our size this would be impossible. If our current shortage of (118 – 78) 40 MDS would require an injection of (40 X $75,000) $3,000,000 into funding for this to happen including another (12 X $75,000) $900,000 for annual on-going funding to service 1,000 NEW patients a month (with the cost assumptions made). Canada neither has the number of qualified candidates or funds to support such a huge program for one specific disease let alone compete with the United States which can offer huge salaries ($450,000) and signing bonuses ($100,000) to these specialists once trained.
But then why can’t the general neurologist fill in or even the family doctors? We don’t have enough of those to go around to where they are currently needed as the cry is out for more family doctors across the country. How about the regular health system of clinics and nurses? Can we get referrals to those services? The short answer is “No” unless your condition is so severe that you are house bound. Even with a referral from my MD and my MDS, I was turned down for a balance assessment after I had two head traumas (or concussions) from falls in the previous year. It seems that my 1 Million Steps for SuperWalk during the summer of 2020 was enough to take me off the “needs help list”. My third head trauma this summer was confirmed a concussion by my Chiropractor, and I am doing specific exercises prescribed by my Physiotherapist to improve my balance. This self-management of my health with my team of professionals is the best workaround of the medical system was the better solution.
Some may say, where is the research for a cure going? Why has that not been solved with the millions of dollars sunk into that field? Perhaps you can look back at the history of tobacco in the United States. The major tobacco companies joined together and insisted that smoking did not cause cancer. They funded multiple studies that looked at other causes of cancer from the absurd to the ridiculous to confuse the issue and push back laws that would force change in the industry. Although causes of PD have not been approved at this time, substantial evidence that pesticides and pollutants as heavy metals used in industry are the major common factor. But who will go after companies like Monsanto who genetically modified a strain of soybeans that was resistant to their pesticide “Roundup” used worldwide to improve yields for farmers? Or go after major industry polluters as they flush chemicals into our waterways and exhaust toxic fumes into the air. If you want to know more, read Ending Parkinson’s Disease
So, what is left for us to advocate for if Big Pharma and The Health System doesn’t meet our needs? Yes, there is a third option! We could work with nurses who could provide needed assistance on a much closer and immediate timeline. As none of the tests I have taken with my neurologist are difficult to administer, why not up-grade certified nurses to be Clinical MDS Nurses? These nurses would work under the virtual supervision of an MDS or neurologists and be in the communities they serve. They could be connected to PSWs who have direct contact with the patient in there home or have PWPs come to the local clinic by appointment. They may even make house calls if required for difficult circumstances. They would draw from the local pool of therapists and health professionals to give more specific treatment.
But will this be enough to meet our needs? Perhaps it would, if we step up to the challenge to “Self- Manage” our treatment to the best of our ability. That means taking responsibility and authority for our everyday activities to mitigate the impact of PD on our quality of life. We will listen to advice to change our lifestyle, improve fitness level, walk more, drink more water, drop bad habits and nurture new ones. Manuals like “Every Victory Counts” contains almost all the knowledge one would need to Self-Manage your disease with some good medical direction. Additional information on local services, exceptional cases or the other 10% that nobody ever uses can be offered virtually. Emotional support can be offered locally through volunteer groups that would require minimal funding but enough to allow virtual and in person contact during support group meetings. Especially support for care partners should be offered as well.
If something looks like the only plausible direction then perhaps, we should at least do further research, a feasibility model, cost out capital and operating costs, test out the approach and analyze the potential impact. I have tried to articulate the basics of a quick back of the business card proposal in the next two pages. Please read on as the solution is not as far away as you may think.
We have a ratio of one Parkinson’s Specialist per 1,500 in Canada. A leading Neurologist on our roundtable gave an estimate that he has 2,000 patient appointments per year. If we had a system that supported the Neurologist enough to only need 1 visit on average per PWP per year, we could eliminate the gap that exists with our current practitioners and patients.
Innovation and technology and even AI may provide the tools necessary for to stretch our limited resources. Between the Neurologist and the patients would be the local clinics staffed by MDS Certified Nurses and PSW’s, in local areas as defined by need and the local health district. These clinics would provide the opportunity for PWPs to have multiple appointments per year depending on severity of their condition, with the MDS Nurse or even other medical staff with similar skills and knowledge working towards certification (Look at CTHRC Occupational Standards). If one MDS Neurologist can support 2,000 patient who will be served by 2-5 MDS Nurses, depending on geographical and demographical demands of an area, every PWP would have the opportunity to see a specialist between 3-5 times per year within reasonable time and travel distance.
So, what would be the role of Parkinson’s Canada in this new system? We would become the teachers for the “Self-Management System” that could be formed or created from our current resource materials with the added element of “Emotional Support” through local support groups. Even with a small volunteer contact space, a person in each clinic, we would be able to meet every PWP who is looking for some advice or assistance. Support Group meetings once a month would provide that social interaction with fellow travelers on the PD Trail. An awareness month in April will remind the local community of local services provided and an annual local fundraiser like the SuperWalk or SuperRide, with help fund the organizational needs to support and encourage the volunteers. The organization may also assume a monitoring role of the clinic to ensure the care given meets the local needs both medically and emotionally as well as their capacity leaves no one behind. These efforts may need government and major gift support even from the Big Pharma when conflict of interest can be prevented.
Much of this concept is already around but not quite “in place” or organized in a manner to meet the needs of PWPs. It will take sharper brains than mine to develop this further, but my hope is to help steer the ship to our best possible port Parkinson’s Canada will provide the leadership to build our ROOTS (recruit, organize, optimize, train, support) for the volunteer base.