Michael J. Fox: "We Have the Answers in Us." Parkinson's Research Accelerating Treatments.
What do you think of when you think about Michael J. Fox? Maybe "Family Ties," "Back to the Future," "Spin City," "Boston Legal," maybe "The Good Wife." There are so many things you can think about when you think of Fox; however, he has become the face of Parkinson's Disease.
Fox was filming the movie "Doc Hollywood" in 1991 when he learned about his condition; as the disease progressed, his involvement with Parkinson's increased. Fox set up Michael J. Fox Foundation in 2000 with the goal to put the foundation out of business.
Foundation Focuses on Research and Treatment
Michael J. Fox continues to focus his foundation on research and treatment of Parkinson's that he has suffered from since age 29. He wants to put his foundation out of business, but one billion dollars later, the effort continues.
Parkinson's is still with us, and Fox, and the Foundation, are advancing research and treatment in the hope to eliminate the disease or find effective treatments.
What is Parkinson's?
Parkinson's Disease affects a person's balance, gait, and movement and can impose mobility constraints. It also can cause what is called Parkinson's disease dementia. The person has a decline in thinking, reasoning, and problem-solving abilities.
An estimated seven to 10 million people worldwide have Parkinson's disease. It is the second most common age-related neurodegenerative disorder after Alzheimer's disease. Fox was age 29 when the disease hit him.
Fox Says Individuals Need to Be Involved in Research
Fox and The Michael J. Fox Foundation Co-Founder and CEO Debi Brooks spoke with Tara Parker-Pope of the New York Times by video during the recent HLTH conference (one of the world's largest health care conferences). Fox said that individuals getting involved in research can accelerate better treatments and a cure.
"We have the answers in us. The answers would be extracted from our lives, and our experience, and our situation. So, when we make ourselves available to clinical trials — things we put in place with the Foundation — the more information we'll gather and the more answers we'll get. And we'll be able to inform others with what they need to find their way to help us," Fox said.
The Parkinson s Progression Markers Initiative (PPMI) seeks to identify biological markers of Parkinson's risk, onset, and progression. More than 1400 people - volunteers - with and without Parkinson's have contributed to PPMI, leading to findings that have changed the way the field thinks about Parkinson's disease since 2010.
The goal is to increase the PPMI to 4,000 participants at medical centers worldwide and enroll as many as 100,000 people online. The goal is to obtain critical information that can help advance better treatments and prevention.
The Michael J. Fox Foundation Co-Founder and CEO Debi Brooks is a participant of PPMI herself.
"There is so much pride for the patients who've participated in this longitudinal study because of the output. They can see, and they hear directly from drug makers, how this new information is helping design trials, how it's helping identify the right patients to be recruited into different treatment trials. It's just empowering," Brooks said.
Patients Voice Critical
Fox says that patients and families play a critical role in this study. The Foundation has galvanized the patient's voice and placed a spotlight on the disease.
"I started to realize there was this concept of Parkinson's being the grandmother and grandfather on the porch at the nursing home rocking and shaking. It just didn't relate. When I was diagnosed, I saw it's like when you're pregnant, and there's a baby carriage everywhere. All I saw was people with Parkinson's, and I started to realize that younger people had it too. They were marginalized. And I said we're a vital population here," Fox explained.
People With Parkinson's are Experts
Fox said he is an expert on Parkinson's because he has it, and he, and others who have the disease, can explain to researchers what researchers don't know firsthand.
"Patients need to be part of the solutions for this," Fox said.
The Foundation has raised over $1 billion in the 21 years of its existence, but it is not enough for the advances which they are seeking. Fox referenced the way science was able to get the COVID-19 vaccine on the market saying science works.
"It takes a lot more money and a lot more time," Fox said.
Fox Won't Stop Until There is a Cure
Fox told Variety recently and said he "won't stop" until "a cure for Parkinson's is found.
"[There] are therapies that have made life a lot better for a lot of people. I enjoy life more. I'm more comfortable in my skin than I was 20 years ago. I can sit down and be calm. I couldn't do that 25 years ago. That's the medications, the drug cocktails and therapies that we've been a part of," Fox said.
PPMI hopes to bring together patients, researchers, doctors, and pharmaceutical companies to share information and advance knowledge and treatment of Parkinson's.
Parkinson's Leads to Disability and Long-Term Health Care
Parkinson's is one of many reasons people require help with daily living activities. Many people with Parkinson's will need long-term health care services either in their homes or in long-term care facilities.
The financial impact of long-term care has a tremendous adverse impact on families and finances since health insurance, including Medicare, will not pay for the long-term custodial care many people require. While Medicaid will pay for this type of care, you must have little or no income and assets to qualify for those benefits. Long-Term Care Insurance will pay for this care, but you cannot purchase coverage after a significant health event has occurred since you must have reasonably good health to obtain coverage.
While most people are purchasing Long-Term Care Insurance in their 50s, it would not have helped Fox since he was diagnosed with Parkinson's at a very young age.