It began with a teacup and saucer at a work event. It was 2010, and Sherrie Pugh picked up the offending objects, but, before she could get coffee, the uncontrollable rattling prompted a helpful staffer to intervene. A function Pugh thought she’d have for life, that of pouring coffee: gone. It would take five years of tremors, and countless doctor visits in that time, before Pugh, now 73, would receive a Parkinson’s diagnosis.
The case of Pugh’s is hardly out of the ordinary. Parkinson’s disease, despite its potentially debilitating nature, is notoriously difficult to diagnose, with many patients suffering for years before receiving proper diagnosis and treatment.
So the optimism with which the National Plan to End Parkinson’s Act, signed into law by President Joe Biden on July 2, has been received nationwide, is understandable. This is a welcome development for the Parkinson’s community and long overdue. The legislation directs the US Department of Health and Human Services to develop a national plan to better diagnose and treat the disease, as well as prevent it.
In addition, it establishes an advisory council to assist federal officials. The bill’s passage also puts a helpful spotlight on the disorder, yielding greater awareness of Parkinson’s and encouragement for patients like Pugh, who lives in Mound.
This act was modeled off the 2011 National Alzheimer’s Project Act, which laid the groundwork for public investments of over $3.8 billion in federal revenue to combat Alzheimer’s. While it’s a shame that it has taken over a decade for the government to make a similar commitment to fighting Parkinson’s (which received $259 million in research funding from the NIH in 2022), hopefully the same investment and attention that followed the Alzheimer’s bill will be devoted to Parkinson’s in the wake of this new bill.
The bill, backed by strong bipartisan support, calls for improved treatments and cures, furthering federal support for research and promoting preventive measures. The targeted approach has the potential to change the way millions experience this debilitating neurodegenerative disease, whose symptoms include tremors, mobility problems and cognitive decline.
Currently, over 1 million Americans suffer nationwide, with 20,000 Minnesotans currently afflicted. The disease’s total economic burden is $52 billion nationwide annually, according to 2023 data. Patients can also face thousands in medical bills for care.
"It’s great that it’s become a national initiative, because it’s become a national problem,” James Miller, 69, a resident of Edina and Parkinson’s patient said in an interview with an editorial writer. Miller, too, has undergone a lengthy diagnosis and treatment journey marked by medication adjustments, deep brain surgery and corresponding lifestyle changes.
Leslie A Chambers, president and CEO of the American Parkinson Disease Association, similarly lauded the lawmakers effort: "We are emboldened by this new law and optimistic about this federal focus on curing and preventing Parkinson’s disease.”
Rep. Gus Bilirakis, R-Fla., in the US House and Sen. Shelley Moore Capito, R- WV, served as the lead authors in Congress. Despite the bill’s inspiring goals and commitments, it’s light on the details. It declares a commitment in only the most general terms, leaving researchers, patients and their families optimistic, but not entirely certain of exactly what this bill will mean for them, and whether the funding will follow in the same way it did with the Alzheimer’s legislation. Still, the legislation’s passage and the battle plan it will yield should galvanize support and public investment.
Dr Jerrold Vitek, head of the Neurology Department at the University of Minnesota Medical School and director of the Udall Center of Excellence for Parkinson’s Disease Research, described some of the challenges currently faced by Parkinson’s researchers, and how the efforts of this bill, if appropriately directed, can positively impact the research.
Vitek notes that it is a very difficult, lengthy and highly competitive process to get money to fund research. If a grant is even awarded in the first place, it frequently endures annual "routine cuts” of around 17.5% annually. This bill, if it provides appropriate funding to the right institutions, has the potential to help fulfill research breakthroughs that can improve Parkinson’s diagnosis and treatment. "A lot of really good grants just don’t quite make it,” Vitek said in discussion with an editorial writer. "When you have more money available, you can fund more of these grants.”
Some of these breakthroughs are closer than many think. With the advent of artificial intelligence, there’s promising research being conducted at Duke University, with the possibility of diagnosing people before they show symptoms by looking at a constellation of proteins from a blood test.
"If you can stop the progression of disease prior to symptoms, it would be tremendous,” Vitek said. With promising research being conducted across the country, and now the pledge of additional federal support, this bill marks a hopeful page turn in the battle against Parkinson’s disease.