Parkinson’s disease is a complex condition. It’s complex to diagnose and complex to handle in oh so many ways. It’s complex to do research and develop new treatments for this complex problem as well. And when something is complex, that’s when you call in people who know all the relevant issues through and through. Yet, there just hasn’t been enough PD specialists in the U.S. for the one million or so people in the country who currently are dealing with PD and the many more that will have the condition in the future. But the Michael J. Fox Foundation and the Edmond J. Safra Foundation have been training their sights on trying to change the PD specialist training situation in the U.S. and beyond.
Deborah W. Brooks, chief executive officer and co-founder of MJFF, recalled what happened when the Safra Foundation first came to ask for opinion. “They wanted to support great PD care and research centers, coming through the lens of science support. We said what if we shaped it as a way to train future researchers and care providers.” Brooks continued by saying, “We don’t have many movement disorder specialists, especially those active in research.”
That was a little over a decade ago. Such conversations eventually led to the 2014 launch of the Edmond J. Safra Fellowship in Movement Disorders, which has since trained 40 new clinician-researchers. These graduates of the training fellowship have in turn reached 31,200 different patients with PD so far by their estimates. Now, this partnership will keep the train going, so to speak. The two foundations have just announced that this fellowship will stretch into 2031, which would mean graduating another 101 new movement disorder specialists. That in turn could reach 78,780 more patients with PD, which could make many very tough situations significantly less tough.
An Estimated 6 Million People Are Currently Living With Parkinson’s Disease
PD is one of those things that many people are probably aware of but far fewer know about in detail. You may have heard of the different public figures who have been diagnosed with PD such as Fox who is of Family Ties, Back to the Future and Spin City fame, actor, director, screenwriter and author Alan Alda, well-known athletes like Muhammed Ali, Brian Grant and Davis Phinney, famous singers like Linda Rondstadt, Neil Diamond and Ozzy Osbourne and political figures like the Reverend Jesse Jackson.
In fact, you may know someone personally who is dealing with PD. That’s because PD is at this moment the second most common and fastest-growing neurological disease in the world. In the U.S., close to 90,000 PD cases are newly diagnosed each year. There’s already an estimated 6 million people globally living with PD.
Oh, and while in general it’s a good thing that life expectancies around the world are getting longer, this does come with some additional considerations PD-wise. Since PD is associated with aging, the world will probably see even more PD cases in the coming years. PD rates are expected to double by the year 2040, which would put further strain on an infrastructure that already is not enough to deal with the current PD numbers.
The U.S. At The Moment Has Only Around 660 Parkinson’s Disease Specialists
While you may know people with PD, you may not know movement disorder specialists, which is another name for the neurologists with extra training and experience to address PD. That’s because the United States has only around 660 movement disorder specialists at this moment. If you do the math, that comes out to only about one such specialist for every 1,000 Medicare beneficiaries with PD. Few people will say, “Don’t worry we’ve got it covered, there one for every 1,000” about anything. That ratio probably isn’t equally spaced around the country either.
PD is considered a movement disorder because it can affect how a person is able to move. Symptoms include tremors, rigidness of different body parts, slowing of movements, difficulty initiating movements and postural instability. which is when a person has difficulty maintaining balance and is more likely to fall. There are also non-motor challenges like mood changes as well as difficulty sleeping and thinking. PD is typically progressive, meaning that it gets worse over time. But things can be done to reduce the impact of symptoms and potentially slow the progression. Not everyone will know the latest and greatest on such things, which is why you need specialists.
Rachel Dolhun, MD, DipABLM, who is the principal medical advisor for the Michael J. Fox Foundation and a movement disorder specialist herself, explained that while primary care doctors and neurologist who are not movement disorder specialists may be able to offer reasonable care, it makes a difference if you have an expert who has seen many different variations of PD and has PD as a main focus. “Care is complex,” she explained. “You need someone involved in your treatment regimen and involving your care team with connections to occupational therapy and physical therapy.” She added that it helps to have someone up on the latest advances, “Four new treatments got FDA proved. It requires that complexity, knowledge and skill set to implement such treatments in the right people.”
Many Patients Receive Delayed Diagnoses Of Parkinson’s Disease
Specialists can also help diagnose the condition earlier. Unfortunately, it can take a while for someone with PD to get an official diagnosis. “Patients find their way to doctors,” said Brooks. “They often are not aware that specialty care exists.”
As a result, patients can end up bouncing around the healthcare system among the wrong kinds of healthcare professionals like a pinball. Along the way, they may even be told that their PD symptoms are nothing, due to something else like anxiety or a musculoskeletal injury or even worse all in their head. Yeah, that’s what you want to hear when you’ve got a real condition that people are just not catching.
That doesn’t mean that other healthcare professionals are not trying or able to properly PD. It’s just that things often can get tricky. “PD remains a clinical diagnosis,” Dolhun emphasized. That means that you can only diagnose it via putting together different aspects of the patient’s history and physical exam. It’s not like a broken bone, where there’s a clear test to establish the diagnosis. Also, in many cases, particularly at the early stages, the symptoms are not obvious like diarrhea. You won’t hear too many people say something like, “It’s not clear that you have diarrhea.” The same can’t always be said about PD symptoms. Dolhun said, “You want an expert who sees PD regularly who can recognize and diagnose it accurately.”
Patients can be especially likely to get misdiagnosed when they don’t match what’s believed to be the “typical PD profile.” Dolhun explained, “There’s the misperception that it is an old white man’s disease.” She added, “ People can be deemed too young for PD. They don’t fit the stereotype.”
Delayed diagnoses can not only waste time and medical resources but also keep the patient in an uncomfortable limbo. Dolhum related that once patients learn what’s really going on they frequently end up feeling “I don’t want this answer but it is nice to have an answer.” Diagnosing someone as soon as possible can then get them into the right treatment programs sooner, which again can make a difference.
Training More Parkinson’s Disease Specialists Is Changing The Situation
What’s been making a difference in making such differences is the Edmond J. Safra Fellowship in Movement Disorders. The Michael J. Fox Foundation and the Edmond J. Safra Foundation partnership has been providing selected academic institutions the funding to offer additional training to neurologists wanting to focus on movement disorders. Each of the institutions then find the right fellow to hire and train.
“The institutions were selected based on their ability to mentor and support the candidates,” said Brooks. “Diversity and inclusion is important.” She added, “We started with five centers. Next year, we are expanding to 10 centers. We’ve essentially doubled the program over the course of 10 years. This is building a network and the next generation of specialists, expanding educational and research collaboration opportunities.”
The funding was crucial because PD care and research aren’t exactly rolling in the dough. People don’t say that they will be entering the movement disorder specialty for the big bucks. Dolhum described care of movement disorder as “a talking specialty” and that “talking doesn’t get the reimbursement,” compared to procedures.
Insurance companies may view talk as cheap. But what movement disorder specialists can do for patients is far from that. “Getting to a movement specialist early is a sign that you are empowered,” Dolhum emphasized. Both Dolhum and Brooks pointed out how proper specialty care can improve patient outcomes in many different ways. Some of these outcomes may be easy to measure whereas others may be complex. Because, after all, Parkinson’s Disease is complex.
