Working Toward a World Without Parkinson’s Disease

By John L. Lehr  June 27, 2017

John L. Lehr is chief executive officer of the Parkinson’s Foundation.

NEW YORK, - As one expert recently noted, if Parkinson’s were an infectious disease, we would call it an epidemic. Worldwide, 10 million people live with Parkinson’s disease, a number expected to double in the next 20 years. While there is no cure for Parkinson’s and no proven way to slow its progression, there is new reason to hope for a world without Parkinson’s.

The varied symptoms of Parkinson’s – including tremor, slowness, fatigue and cognitive difficulties – develop slowly and progress over years and decades. Parkinson’s mainly affects people over the age of 60. Ultimately, in its advanced stages, it disables people, leaving them unable to care for themselves.

Today, the needs of the Parkinson’s community are greater than ever, but so is the potential of science to help meet these needs and eradicate the disease. At a June symposium marking the 60th anniversary of the Parkinson’s Foundation, leading researchers reviewed recent scientific progress toward that goal and charted a path to the future.

The symposium included discussion of the disparities that prevent many people with Parkinson’s from receiving the best care. In the US, only a small percentage of people with Parkinson’s receive the specialist care that can help them live well. Women living with Parkinson’s are less likely than men to see a specialist. Few people of color participate in clinical trials for new therapies. And around the world, people in dozens of countries do not have access even to today’s gold-standard medical therapy, levodopa.

How can we advance research for new therapies while ensuring that people with Parkinson’s worldwide can live their best lives today?

First, a better definition of Parkinson’s is helping us diagnose the disease and search for new treatments. Increasingly, scientists and doctors recognize that “Parkinson’s” is an umbrella term for a spectrum of diseases. People with Parkinson’s have different sets of symptoms that develop and progress at different rates. The brain changes that underlie Parkinson’s begin long before a person notices movement symptoms. But there is no simple blood test or brain scan that can diagnose the disease.

A clearer understanding of genetics, immunology, and the bacteria that line the gut are helping scientists to define different manifestations of Parkinson’s — and develop tests to diagnose them. Having biomarkers for the disease will speed the development of new therapies, because we will be able to identify people who are most likely to benefit from drugs aimed at specific Parkinson’s “types.”

Next, new technologies — many in the hands of people with Parkinson’s — are helping researchers to better understand Parkinson’s and improve lives. Smartphone apps may help scientists gather data on subtle early symptoms of Parkinson’s, such as changes in a person’s voice. Online communities where people enter data about their own symptoms can help researchers track and understand disease progression in large numbers of people.

Ideally, people with Parkinson’s should seek treatment by a neurologist who is an expert in movement disorders. But many people live far from the medical centers where such specialists work. The movement problems associated with Parkinson’s can make it difficult for those with advanced disease to access care. The good news is that telemedicine — virtual house calls — also hold promise for providing better care. Telemedicine could potentially provide people with better access to their doctors, and doctors with the opportunity to assess their patient’s on their home turf rather than in the artificial environment of the office.

The future also holds potential for a new generation of Parkinson’s therapies that may stop or slow disease progression and transform the quality-of-life issues that many people living with Parkinson’s face. Decades of investment in biomedical research have yielded promising new drug targets that are being tested in clinical trials. Advances in deep brain stimulation techniques are fine-tuning a therapy that is already improving the lives of many worldwide.

As these advances unfold, the Parkinson’s Foundation will remain at the forefront of medical research to reveal the causes of Parkinson’s and find ways to end it. We also will continue to support the community and address disparities through education, outreach and advocacy. As Parkinson’s reaches epidemic-like proportions, it’s clear that this work is more important than ever.

Many obstacles to a world without Parkinson’s remain. We will continue to invest in research and improving lives until that world is within our reach.

John L. Lehr is chief executive officer of the Parkinson’s Foundation. To learn more visit www.parkinsonsfoundation.org

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