10

WITHIN OUR REACH

How We Can End Parkinson’s

A demand for scientific proof is always a formula for inaction and delay and usually the first reaction of the guilty.… In fact scientific proof has never been, is not, and should not be the basis for political and legal action.

—Scientist at British American Tobacco¹

WE HAVE TO TAKE ACTION AGAINST PARKINSON’S NOW—through prevention, advocacy, care, and treatment. We end this book with twenty-five concrete steps we can and should take to reduce the worldwide toll of this daunting disease.

PREVENT THE DISEASE

1. Ban paraquat and other harmful pesticides.

According to the Environmental Protection Agency (EPA), the pesticide paraquat is “highly toxic,” it has no antidote, and “one sip [of it] can kill.”² Exposure to it also doubles the risk of developing Parkinson’s.³ It kills dopamine-producing brain cells and produces features of Parkinson’s in laboratory animals. Thirty-two countries have already banned paraquat; yet it is still used on crops in much of the United States. In the last decade, its use has doubled.⁴

We have a window to outlaw it now. To be used in the United States, pesticides must be registered with the EPA, and paraquat’s registration is up for review. According to the EPA, the federal statute that governs the use of pesticides “prohibits registration of pesticides that generally pose unreasonable risks to people, including agricultural workers, or the environment.”⁵

Please contact the administrator of the EPA, currently Andrew Wheeler, and urge him to act against paraquat and its unreasonable risk, including for Parkinson’s. You can phone his office at 202-564-4700 or email him at wheeler.andrew@epa.gov. You can also contact the Congressional committees that provide oversight of the EPA and ask them why the United States, unlike dozens of other countries, has failed to ban paraquat. You can contact the US House Committee on Energy and Commerce (202-225-2927) and the US Senate Committee on Environment and Public Works (majority contact: 202-224-6176; minority contact: 202-224-8832).

In the absence of action by the EPA to date, Congresswoman Nydia Velázquez of New York introduced a bill into the US House of Representatives on July 17, 2019, to cancel the registration of all uses of paraquat.⁶ To learn about the current state of the bill, go to advocate.michaeljfox.org.

In addition to paraquat, several other pesticides increase the risk of Parkinson’s disease. Among them is the nerve toxin chlorpyrifos.⁷ And yet, according to the EPA, it is the most widely used conventional insecticide in the country.⁸ In 2013, chlorpyrifos was used to treat almost sixty different crops covering approximately 1.3 million acres according to the California Farm Bureau Federation, which argues that the pesticide is critical to the local agriculture.⁹ Alfalfa, almonds, cotton, grapes, oranges, and walnuts are all sprayed with chlorpyrifos.¹⁰ The pesticide is also used on broccoli, Brussels sprouts, cauliflower, cranberries, soybeans, and Washington State apples.¹¹

Golf courses, lawns, utility poles, and wood fences are soaked in chlorpyrifos too.¹² A 2013 letter to the journal Annals of Neurology asked, “Is living downwind of a golf course a risk factor for parkinsonism?”¹³ The authors reported that nineteen of the twenty-six people that they had seen with parkinsonism lived within two miles of a golf course. In addition, sixteen of the nineteen lived downwind. No conclusion was drawn, but a larger study was sought.¹⁴

The EPA has considered an outright ban on the chemical since 2007, but in April 2017, the EPA ruled that such a ban was not warranted due to uncertainty about its effects on the brain development of children.¹⁵ In August 2018, a federal court ordered the EPA “to revoke all tolerances and cancel all registrations for chlorpyrifos within 60 days.”¹⁶ But one month later the Trump Administration appealed the decision.¹⁷ In the absence of a federal response, California announced in May 2019 that it would ban use of the pesticide.¹⁸ Two months later, the EPA ruled that it would not ban the chemical, saying that the data about its health concerns were “not sufficiently valid, complete or reliable.”¹⁹ In January 2019, Congresswoman Nydia Velazquez introduced the Ban Toxic Pesticides Act of 2019 that would eliminate the use of chlorpyrifos in the U.S.²⁰

Parkinson’s disease may be the least of the risks of chlorpyrifos. A 2006 study in the journal Pediatrics found that children born between 1998 and 2002 with the highest prenatal exposure to the bug killer scored lower on development tests than those with lower exposure.²¹ Before EPA’s 2000 ban on the indoor use of the pesticide, chlorpyrifos was widely used to kill cockroaches, and exposure was widespread among pregnant women in New York City. The ban did not go into effect until the end of 2001.²² One review calculated that exposure to chlorpyrifos and its class of pesticides among 25.5 million US children led to a total loss of 16.9 million IQ points.²³

As with most pesticides, the use of chlorpyrifos is not limited to the United States but extends to seventy other countries and “has led to ubiquitous human exposure.”²⁴ Pesticide use is now a huge issue in sub-Saharan Africa, where use has historically been low.²⁵

2. Ban trichloroethylene.

Trichloroethylene (TCE) is commonly used as a solvent to remove grease from metal. People can be exposed to it by breathing in its fumes, ingesting it, or absorbing it through their skin. For more than eighty years, we have known about its toxicity.²⁶ Like paraquat, it can produce features of Parkinson’s disease in laboratory animals. In 1977, the Food and Drug Administration (FDA) banned its use as an anesthetic. In December 2016 and January 2017, the EPA proposed banning the use of TCE for industrial degreasing and for spot-cleaning by dry cleaners.²⁷ In addition, it has identified safer alternatives.²⁸ Unfortunately, the leadership at the EPA has postponed the ban indefinitely.

In the absence of appropriate regulatory action, legislatures at the state and federal levels are beginning to take action.²⁹ A bipartisan group of state legislators in Minnesota, led by Republican state senator Roger Chamberlain and Democrat state representative Ami Wazlawik, is seeking to have Minnesota become the first state to ban the chemical.³⁰ In January 2019, the Minnesota Pollution Control Agency learned that a battery manufacturer outside Minneapolis was emitting much more TCE into the air than allowed.³¹ Neighborhoods and residents up to 1.5 miles from the facility were exposed to unsafe levels.³² One resident testified, “I’ve lived in my home, one quarter mile from this plant, for 18 years and raised my three children at that home. [The ban is] too late for our community, but we’re asking that you ensure this doesn’t happen to others in the future.”³³

At the federal level, a serious bipartisan effort is underway in Congress to ban toxic chemicals like TCE. Representative Paul Tonko, Democrat from New York, chairman of the House Energy and Commerce Committee’s Subcommittee on the Environment and Climate Change, and Representative John Shimkus, Republican from Illinois, the ranking House Republican, are planning to press the EPA in open hearings in 2019 and 2020. People can attend the hearings, which are open to the public, to show a loud and unified voice on the issue of banning TCE and other chemicals. Banning chemicals is important not only for Parkinson’s but potentially for other diseases such as autism.³⁴ Combining efforts among advocacy groups, which has already begun, can often bring quicker action. The schedule of hearings is available here: https://energycommerce.house.gov/committee-activity/hearings.

The Environmental Defense Fund has organized a direct link to email US Senators and Representatives asking them to ban the chemical. You can lend your name to the fight by going to https://membership.onlineaction.org/site/Advocacy?cmd=display&page=UserAction&id=3254.

3. Accelerate the cleanup of contaminated sites.

As of July 2018, the United States had 1,346 sites on its National Priorities List—areas with known or threatened contamination with hazardous substances.³⁵ Of these sites, nearly half are polluted with TCE.

We know where the contamination is, but we are not doing enough about it—at least not at a pace to protect people.

One issue is money. Funding for cleaning up Superfund sites dried up in 1995 when taxes on crude oil, chemicals, and corporations expired.³⁶ Now most of it comes from taxpayers.³⁷ To get the program running again and to protect communities surrounding these sites, we need polluting parties to pay and the EPA to assemble teams to rapidly clean the sites.

Superfund sites are only the beginning. The number of TCE-contaminated areas that are not Superfund sites is in the thousands. Michigan alone has three hundred.³⁸

In 1974, Congress enacted the Safe Drinking Water Act to ensure the quality of Americans’ drinking water, but this does not protect everyone.³⁹ The water standards only apply to public water systems and not to private wells.⁴⁰ Over 40 million Americans get their water from wells. In 2009, the US Geological Survey studied over 2,000 private wells and found that 23% had at least one contaminant of potential health concern.⁴¹ Even public systems can be contaminated. The nonprofit Environmental Working Group offers maps (www.ewg.org/interactive-maps/2018-tce) of the systems in the United States that were contaminated with TCE as of 2015.⁴²

Those who drink well water should have it tested. The EPA provides guidance on how to do this on its website (www.epa.gov/privatewells/protect-your-homes-water#welltestanchor). The EPA recommends using state-certified laboratories or your local health department to do drinking-water tests.⁴³ More information is available on the EPA’s website at www.epa.gov/sites/production/files/2015-11/documents/2005_09_14_faq_fs_homewatertesting.pdf.

TCE also evaporates and can contaminate indoor air without warning. If you live near a site contaminated with TCE, you may want to have your indoor air checked. The EPA has more information at www.epa.gov/vaporintrusion.

4. Use a water filter.

While we wait for cleanup, we have to protect ourselves. Water filters can help. Carbon filters attached to faucets or in water pitchers are relatively inexpensive but must be replaced regularly. They also do not extract every chemical from the water.⁴⁴ More expensive options, such as reverse osmosis systems, may remove more contaminants but require greater use of water.⁴⁵

Unfortunately, while these filters may help filter drinking water, they do not protect us from other kinds of exposure, such as bathing. Compounds like TCE readily evaporate, and individuals with contaminated water may be exposed to them while showering. In these cases, a whole-house water-filtration system is needed to clean all the water at the point where it enters the house.⁴⁶

To learn more, two useful resources are the EPA’s Safe Drinking Water Hotline at 800-426-4791 and the EPA’s webpage on groundwater and drinking water: www.epa.gov/ground-water-and-drinking-water/safe-drinking-water-information. In addition, the Environmental Working Group has a database of tap water contamination by zip code available at www.ewg.org/tapwater.

5. Advocate for the National Neurological Conditions Surveillance System.

The National Neurological Conditions Surveillance System can help identify potential causes of Parkinson’s and other neurological diseases, like multiple sclerosis. However, it does not have sufficient money to do so.⁴⁷ Parkinson’s can take decades to develop in response to environmental risks. Therefore, long-term funding is needed. Many of the major Parkinson’s organizations have combined their lobbying efforts to support this act. You can learn more about this and other policy priorities at https://advocate.michaeljfox.org.

6. Protect workers.

If you are one of the 1 million farmers, ranchers, and agricultural workers in the United States, you can protect yourself by avoiding or minimizing your contact with pesticides.⁴⁸ Farmers can be exposed to pesticides during the preparation, application, and cleanup of spray solutions.⁴⁹ Agricultural workers can breathe pesticides in when they are sprayed or when they drift through the air from neighboring fields. They can also absorb the chemicals through their skin while handling crops or touching the soil.⁵⁰ Skin absorption and inhalation are the most common, but not the only, routes of exposure.⁵¹ Paraquat, for example, “is highly toxic to animals by all routes of exposure,” including via the eyes, the mouth, and even the fingernails.⁵²

People working on farms need appropriate protective equipment, which can reduce the risk of Parkinson’s.⁵³ Among these are gloves, boots, hats, long-sleeve shirts, masks with air filters, and chemical-resistant overalls. However, such protection is not always complete.⁵⁴

Certain groups are especially vulnerable to the toxic effects of pesticides, including children, migrant workers, and residents of low-income nations. These groups may not know the importance of or have access to the proper equipment.

Industrial workers should also protect themselves from TCE and other solvents that are linked to Parkinson’s.⁵⁵ The most common current uses of TCE are grease removal, dry cleaning, and the production of refrigerants. TCE is also found in consumer products including typewriter correction fluid, paint removers, adhesives, spot removers, and rug-cleaning fluids.⁵⁶ According to the Agency for Toxic Substances and Disease Registry, dry cleaners, mechanics, printers, shoemakers, textile and fabric cleaners, and varnish workers, among others, have an increased risk of exposure.⁵⁷ Industrial workers need the corresponding protection, including goggles, gloves, and respirators, until we can eliminate the dangerous product’s use.⁵⁸

Welders may also be at higher risk for developing Parkinson’s.⁵⁹ These workers, who number 400,000 in the United States, should prevent or limit their exposure to fumes that result from melting the metal manganese, which is toxic to dopamine-producing nerve cells.⁶⁰ Lower welding voltages, ventilation equipment, and masks can help protect welders from inhaling the dangerous gases.

7. Eat like the Greeks.

Recent studies have suggested that a Mediterranean diet, in addition to lowering our risk of heart disease, may also be protective against Parkinson’s—by as much as 20%.⁶¹ This way of eating avoids processed foods and includes the following:

Fruits and vegetables

Beans and nuts

Whole grains

Fish

Olive oil

Small amounts of meat and dairy

People living in Mediterranean countries also like their coffee, and caffeine may also be protective against Parkinson’s. Studies suggest that between one and four cups of caffeinated coffee may decrease your risk.⁶²

8. Minimize your consumption of pesticides.

We do not have great data on the risk of eating produce coated with pesticide residues. But Dr. Honglei Chen, a professor of epidemiology and biostatistics at Michigan State University, says, “I wouldn’t be surprised if regular consumptions of foods with pesticide contaminants or residues increase the risk of Parkinson’s disease, particularly in countries where the use of pesticides is less regulated.”

It may be prudent to take preventive measures such as washing fruits and vegetables thoroughly with a little soap and water. We might also opt for organic foods, if possible, given that they have much lower levels of pesticide residues than conventional choices.⁶³ We also need to work to make these organic foods more affordable and accessible to as many people as possible. For more information about which kinds of produce are sprayed the most, visit the website for the nonprofit Environmental Working Group (www.ewg.org), which keeps updated lists.

9. Sweat.

On average, we do not get nearly enough exercise to realize its well-documented benefits for many diseases, including Parkinson’s.⁶⁴ Vigorous exercise for about four hours every week can potentially reduce the risk of Parkinson’s disease by 20% or more. For people who have already developed Parkinson’s, numerous studies have shown that regular exercise can alleviate symptoms.⁶⁵

It does not matter what you do—tap dance, fly on a trapeze, weed your garden at top speed, do yoga on a mountain, or simply go out and take a brisk walk—as long as you do it. Cycling or running can be surprisingly good options even for those who find it difficult to walk normally.⁶⁶ Consistency is the key; exercise every day so there is never room to postpone it until tomorrow. Breaking a sweat is usually a good indicator that your heart rate is elevated.

Schools, workplaces, community centers, houses of worship, senior centers, and governments should all promote and enable exercise. We need to think of it as a required daily activity, like brushing our teeth. The risks are few, and the benefits are immense.

10. Avoid activities with a high risk of head trauma.

All of us should wear seat belts, drive cars with air bags, and wear helmets when riding a bike, skiing, or engaging in other activities with a high risk of concussion. Parents should exercise considerable caution in deciding whether to let their children play tackle football.⁶⁷ Athletes should also be aware of the risks. We may love the game in the United States, but it is worth thinking about what concussions may bring in the future. This applies to other sports too, though their risks may be less well publicized (Figure 1).

For those in the military, helmets, face shields, and improved vehicle armor can help and should be available to those at high risk of injury.⁶⁸ We need to detect the dangers and take soldiers out of harm’s way before a blast occurs.⁶⁹ As with Parkinson’s, a lot of current research is focused on improving the diagnosis and treatment of traumatic brain injury.⁷⁰ More is needed to prevent it.⁷¹

ADVOCATE FOR ADDITIONAL RESOURCES AND POLICY CHANGES

11. Increase NIH funding for Parkinson’s disease.

The National Institutes of Health (NIH) is the largest public funder of biomedical research in the world. It spends $37 billion a year on research “to enhance health, lengthen life, and reduce illness and disability.”⁷² However, at the same time that the burden of Parkinson’s is increasing, the NIH’s support for Parkinson’s research is lagging. More broadly, the US share of global research funding is also decreasing.⁷⁴

FIGURE 1. Concussion rates among high school athletes by sport per 10,000 athletic exposures, 2008–2010.⁷³ An athletic exposure is one player participating in one practice or game.

More NIH funding is needed, and more NIH money needs to go toward Parkinson’s research. The pie can also be expanded through strategic partnerships. Some of this work is starting. In 2018, a public-private partnership was formed to advance new treatments for Parkinson’s. The NIH, multiple pharmaceutical companies, and The Michael J. Fox Foundation agreed to form the Accelerating Medicines Partnership and to invest $24 million over five years to identify promising biological markers of Parkinson’s disease.⁷⁵

Increased funding could help identify ways to reduce our risk of Parkinson’s. First, we need a better understanding of the risks themselves. How widespread are these environmental risks? What level of exposure, if any, is safe? We must also figure out how to assess this exposure in people. Can we measure these chemicals in the blood, urine, hair, nose, gut, or brain to help determine risk? Another key step will be determining how environmental and genetic risk factors interact. Are those who carry certain genetic mutations at greater risk of developing Parkinson’s when exposed to certain pesticides, chemicals, or head trauma? Should these individuals be even more vigilant? Two centuries after Dr. Parkinson described the condition, we still have many unanswered questions that could help prevent this debilitating disease.

12. Listen up, Big Pharma—this is a great business opportunity.

The exploding numbers of people with Parkinson’s represent an enormous unmet need—and opportunity. Alzheimer’s and Parkinson’s together affect at least 6 million Americans, a number that is projected to double in the next generation.⁷⁶ There is money to be made from treatments that can help them. The best treatment for Parkinson’s is over fifty years old, only partially alleviates its enormous disability, and—this is key—does not address the underlying causes of the disease. Pharmaceutical companies should therefore be eager to develop new medications.

In 2018, the world’s third-largest pharmaceutical company, Pfizer, announced that it was ending drug development for both conditions.⁷⁷ With this announcement, Pfizer eliminated three hundred positions from its neurodiscovery unit. Fortunately, a new spin-off company called Cerevel Therapeutics was formed to help advance treatments for Parkinson’s and Alzheimer’s, which also lacks effective treatments, and more companies are starting to stream back toward neurodegenerative diseases.⁷⁸ The field needs more investment from the large pharmaceutical companies, which, along with medical device companies, account for 60% of biomedical research funding in this country.⁷⁹

13. Donate to organizations that invest in important research and care.

Tens of millions of dollars have been raised by organizations in the United States, such as The Michael J. Fox Foundation and the Parkinson’s Foundation, and outside its borders—Parkinson’s UK, the Cure Parkinson’s Trust, and the European Parkinson’s Disease Association. The funding has enabled research that has led to a better understanding of the disease, the discovery of genes, identification of drug targets, testing of new treatments, development of devices, and regulatory approval of new therapies. Money is a limiting factor for how far we can go and how fast we will get there.

The Michael J. Fox Foundation has had a large impact. The organization has no endowment and spends almost all the money it raises annually. Since its founding in 2000, it has invested over $900 million in research programs. In 2018, it spent approximately $100 million on research—more than half of what the NIH spent on Parkinson’s.

More financial support remains critical, and other foundations like the American Parkinson Disease Association, the Brian Grant Foundation, the Davis Phinney Foundation, and the Parkinson’s Foundation together spend more than $30 million annually. The American Parkinson Disease Association is the largest grassroots network dedicated to fighting Parkinson’s and has invested nearly $200 million in patient services, educational programs, public awareness efforts, and research since 1961.⁸⁰ The Brian Grant Foundation provides exercise and nutritional resources for people with Parkinson’s.⁸¹ The Davis Phinney Foundation organizes Victory Summits around the country and around the world that educate and inspire those with Parkinson’s disease to live well today. The Parkinson’s Foundation and its predecessors have raised over $300 million for research and care, and the foundation now operates over forty centers of excellence worldwide that provide expert care to people with Parkinson’s.⁸² Many more Parkinson’s disease organizations in the United States and around the world are contributing money to improve care and advance research.

A “march of dimes” funded polio research. Pink ribbons have raised millions for breast cancer. An Ice Bucket Challenge did the same for amyotrophic lateral sclerosis.⁸³ We need similar efforts that will translate to tangible progress for Parkinson’s.

14. Be loud.

No voice is more powerful or harder to ignore than that of those affected by the condition. The Parkinson’s community has been relatively quiet and patient. It has yet to find a way to demand accountability from doctors for improved care, researchers for scientific progress, pharmaceutical companies for drug development, and legislators for public health protection in a way that cannot be ignored. The HIV community was and is loud and persistent. At times, it was unsettling. Its activists even occupied the FDA’s building. However, the spirit of the HIV community and its passionate drive for change drove progress.

Maybe the time has come for a Parkinson’s version of ACT UP. Defined as “a diverse, non-partisan group of individuals united in anger and committed to direct action to end the AIDS crisis,” the group’s motto is “We advise. We demonstrate. WE ARE NOT SILENT.”⁸⁴

15. Organize.

If all the people with Parkinson’s disease flooded the National Mall in Washington, DC, they would exceed the number of people at most Presidential inaugurations. If we counted up everyone who either has the disease or loves someone who has it, our numbers would be an undeniable force. The power is there if we use it, but we must organize ourselves to be effective. All the efforts listed here and many others will require unprecedented activism.

For every one person with Parkinson’s, one hundred more do not have the disease. We need to engage and organize more than just patients and care partners. We need their children and siblings, friends and neighbors, clinicians and aides to participate. All their voices need to be heard.

Many valuable Parkinson’s disease organizations exist, but their impact and reach can all be increased. The March of Dimes, ACT UP, and Susan G. Komen Race for the Cure have their roots in broad, engaged, and sustained activism. That activism includes engaging those without the disease and, in particular, younger generations. These individuals have the most to gain from a cleaner environment and from ending Parkinson’s.

CARE FOR ALL THOSE WHO ARE AFFECTED

16. Train more specialists and educate clinicians.

We have enough neurologists in the United States to care for people with Parkinson’s. But we have few Parkinson’s disease specialists. Care from this latter group, whose members devote additional training to those with the condition, can address the complex needs of many with the disease, help improve care, and advance new therapies. As more people develop Parkinson’s, more such doctors will be needed. The Michael J. Fox Foundation and the Edmond J. Safra Foundation have partnered to increase the number of Parkinson’s specialists primarily in the United States and Europe. The Parkinson’s Foundation and its network of expert care centers has joined with the American Academy of Neurology to train more Parkinson’s disease neurologists too. Despite these efforts, fewer than fifty Parkinson’s specialists, on average, are trained each year in the United States. Outside the United States, the needs are far greater, particularly in middle- and low-income nations.

And we need specialists in many other professional disciplines as well. People with Parkinson’s benefit from care provided by a team of specifically trained experts, including physical, occupational, and speech therapists. Dedicated Parkinson’s nurses are also critically important. Specific training for these other disciplines is offered by various organizations around the world, including the International Parkinson and Movement Disorder Society, Parkinson’s UK, the Parkinson’s Foundation, and the Dutch ParkinsonNet. But much work remains to ensure that patients around the world have access to such experts.

We also need to train clinicians of all varieties to become more familiar with Parkinson’s so people can be diagnosed more quickly—and receive treatment sooner. Raising public awareness also helps both patients and clinicians recognize symptoms earlier. And let’s face it, doctors miss things all the time, even specialists like us. So people need to make sure they are persisting, pushing for answers, and receiving multiple opinions if they know that something is wrong.

17. Expand access to care.

Today, we are failing to take proper care of people with Parkinson’s. The way we provide care now restricts access to a fortunate few and is overly burdensome to patients and their caregivers. We can and must do better.

ParkinsonNet in the Netherlands, the network of specially trained experts in Parkinson’s, offers an excellent example of how to expand access to care.⁸⁵ That model is now spreading to other countries in Europe and even to the United States but is still not available to all.

Other ways to take better care of patients are also emerging. For example, the “Service and Science” hub at the University of Florida, headed up by Dr. Michael Okun, one of our authors, provides one-stop shopping for patients—medical attention, support, and the ability to participate in clinical studies all in one location.⁸⁶ This model could be replicated at many locations both inside and outside the United States, but large-scale funding remains sparse.

Another model is Project ECHO, which uses remote specialists to train and support local clinicians. Even though the model is low-cost and builds local capacity, it is not currently covered by most insurers.⁸⁷

18. Lobby to change insurance and Medicare.

Decisions by health insurers and Medicare about which services they are willing to cover determine what kind of care we receive. For people with Parkinson’s, Medicare will pay for institutional care—hospital stays, nursing homes—but very little home care. This is despite the fact that most people would rather stay in their own homes and that home care is far cheaper.

One way to ensure that Medicare’s policies are consistent with the interests of its beneficiaries is to expand the physician-only advisory committee to include patients. Giving them a voice will help ensure closer alignment of Medicare’s financial incentives with the interests of those who stand to gain and lose the most. People from the Parkinson’s community need a seat at the table.

19. Enable individuals with Parkinson’s to live at home.

Several services can help people live at home and postpone or minimize the need for a nursing home. The first is house calls, which can be delivered in person or via videoconferencing. Another is in-home exercise programs that are taught or led by Parkinson’s trained therapists, which can improve function for people with the disease. For example, people can now ride a stationary bicycle at home with remote supervision by an exercise coach.⁸⁸ A third is a novel program that dispatches a nurse, an occupational therapist, and a handyman to the homes of older adults. There they provide assistive devices and repair and modify homes. This simple intervention reduces depression and increases the independence of older adults.⁸⁹ The obvious hurdle to widespread adoption of these and similar programs is the lack of Medicare and Medicaid reimbursement. If we can make policy changes, the savings in cost and heartache could be billions of dollars and millions of lives.

The demand for programs like these will only grow as more people live with advanced Parkinson’s disease. Currently, 2 million Medicare beneficiaries are homebound, leaving their home less than once a week, often only to see a doctor. Of these 2 million, tens of thousands likely have Parkinson’s.⁹⁰ For people who are homebound, Medicare may provide home health coverage. However, the rules are complex, and the care does not always cover the needed services. However, for the vast majority of individuals with Parkinson’s who are not homebound, Medicare’s coverage is limited.⁹¹ Spouses and other loved ones end up having to perform this monumental and stressful job.

20. Use technology to increase access to care.

While most individuals lack ready access to a neurologist globally, 90% of them have a mobile phone, and 70% have a smartphone.⁹² Because mobile phone ownership is high even in low-income nations, these devices can help extend care. Coupling this technology with remote support through telemedicine links can extend appropriate care to almost anyone anywhere. This is already happening in India, where physicians are seeing patients with Parkinson’s disease through a smartphone.

Much more is possible. In the near future, smartphones with their embedded sensors will facilitate remote diagnoses and monitoring.⁹³ The same devices that have transformed communication can now transform care.

TREAT PARKINSON’S DISEASE WITH EFFECTIVE THERAPIES

21. Make dopamine-replacement therapy more widely available.

Though levodopa is inexpensive in high-income nations, infrastructure and bureaucratic issues keep this generic drug from reaching people in many parts of the world. The World Health Organization includes levodopa on its list of essential medicines, yet access is largely limited to high-income nations.⁹⁴ There is no excuse for this. President George W. Bush championed providing HIV drugs to people in Africa despite the fact that these drugs are far more expensive than simple dopamine replacements. We need similar leadership for levodopa and Parkinson’s disease.

22. Participate in clinical trials.

Promising therapies are in the pipeline for Parkinson’s. However, all these therapies require extensive evaluation in clinical trials, and almost 80% of these studies fail to meet their targets for recruitment.⁹⁵ We cannot get closer to having better therapies or finding a cure without broad and enthusiastic participation from the Parkinson’s community.

We should seek to identify potentially eligible participants before a clinical trial even begins. The community can do this by signing up for observational research studies that track individuals with a genetic mutation, for example, before gene-directed trials start. Other resources, such as Fox Trial Finder, can readily match individuals with Parkinson’s to clinical studies in which they can participate.⁹⁶ The faster trials complete enrollment, the quicker they are finished, the sooner the results are known, and the closer we get to new treatments.

23. Take research studies to participants.

Clinical trials depend on people who are willing to donate their time and energy, to share their body fluids, and to expose themselves to known and unknown health risks. Yet we burden these volunteers with traveling to research sites in order to participate. We can invert this model and take the research to participants. Doing so will lessen the strain on the people already grappling with a disease, and science would benefit.

Currently, only 10% of people with Parkinson’s participate in research. Extending the reach to underrepresented populations will enhance the generalizability of findings and ultimately benefit more people.⁹⁷ And the larger the numbers of participants, the stronger the evidence.

Early studies indicate that there is interest in this novel approach to doing research. A study that allowed people to sign up on their smartphones enrolled 15,000 participants, including people from every state.⁹⁸ That is a huge number, and it was because the participants did not have to travel anywhere.

More recently, The Michael J. Fox Foundation created Fox Insight, an online research platform that enables individuals to participate in research without ever having to leave their home.⁹⁹ To date, over 40,000 individuals have enrolled.

24. Study people with early disease symptoms and those who are at greatest risk.

By the time Parkinson’s is diagnosed, much of the damage is largely done—two-thirds of the dopamine-producing nerve cells in the brain are already lost. We need to study people earlier in the course of Parkinson’s. This is critical to learning how the disease progresses in its earliest stages and what might stop it.

We should be reaching out to people who are experiencing very early symptoms, such as loss of smell, but who have not yet been diagnosed. The International Parkinson and Movement Disorder Society has developed a tool that can help identify such individuals.¹⁰⁰ We can also look at populations who are at high risk because of genetic factors or environmental exposures. Some of this work is already underway, and our understanding will greatly benefit from enrolling many more people in these early-stage efforts.

25. Provide reasonable pricing of Parkinson’s drugs.

In Europe, government agencies pay for therapies based on their value.¹⁰¹ While the United States lacks such regulatory bodies, we should also be tying price to effectiveness. For example, new models in cancer are beginning to emerge that require insurers to pay for expensive drugs only if patients respond to treatment.¹⁰²

While high-income nations may be able to afford expensive therapies, middle- and low-income nations cannot. For some of these countries, the price may have to be less than the cost to manufacture drugs. Such an approach for people with HIV/AIDS has saved millions of lives and, overall, has made billions for pharmaceutical companies. A similar model could be developed for Parkinson’s.¹⁰³

These actions are achievable. Most have little, if any, cost. Most have little, if any, downside. They all have enormous benefits. If we pursue this prescription, fewer of us will live our last decades with a debilitating disease or spend years caring for someone with Parkinson’s.

TO A GREAT EXTENT, PARKINSON’S MAY BE MAN-MADE. PESTICIDES, chemicals, air pollution, head trauma, and lack of exercise are all fueling the rise of the disease and putting us all at risk. Just as humans contributed to the rise of Parkinson’s in the nineteenth and twentieth centuries, we can now work to eradicate the disease.

Previous generations have eliminated infectious diseases like smallpox and polio. As a result, we no longer fear or even think about the scars, paralysis, and death that these viruses wrought.

And we have kept fighting ever since. The greatest medical advance of the last generation was the transformation of HIV/AIDS from an unknown, fatal condition into a preventable and treatable one. That shift was not easy; it never is. But we now know it’s possible, and we know what it takes. People had to throw out the status quo, end their silence, and act.

It’s now on us to do the same for Parkinson’s disease. If we succeed, future generations will not have to confront the hardship and disability that Parkinson’s brings. If we fail, a needless pandemic will be our legacy.

What will be our story?