Prescription for Action; From Passivity to Progress
Since 2010, the Michael J Fox Foundation has been running the Parkinson's Progressive Markers Initiative, and after thirteen years of pokes, prods, tests and spinal taps, scientists have discovered a biomarker in spinal fluid for Parkinson's. Without the selflessness of more than one-thousand volunteers, it would not have been possible.
Volunteers in the Parkinson's community are remarkable people who embody generosity, compassion, and kindness by giving their time, skills, body fluids and big hearts to make a difference in the lives of people with Parkinson's disease.
In March 2020, the book Ending Parkinson’s Disease: A Prescription for Action was released. The book offers a clear pathway forward. The first of 25 action items is to ban Paraquat, the second is to ban Trichlorethylene.
“I am only one, but I am one. I can’t do everything, but I can do something. The something I ought to do, I can do. And by the grace of God, I will.”
Thanks to volunteer advocates who wrote the White House in 2021 during the PD Avengers and Ending Parkinson’s Disease book authors “red letter campaign,” change is underway. 50,000 people asked the Biden-Harris Administration’s EPA to ban the insecticide Chlorpyrifos (read the Intercept investigation), the herbicide Paraquat (read The Guardian investigation) and the toxic chemical Trichlorethylene (read investigation by Newsday).
Since that campaign, the use of Chlorpyrifos has been banned on all edible crops. Scientific research has been documenting the harms of chlorpyrifos for decades. Yet it was the lived experience, community expertise, and community organizing of farmworkers and their families that galvanized momentum at the local, regional, and state levels that led to the federal chlorpyrifos ban. For decades, chlorpyrifos has been widely sprayed on Washington apples, pears, Christmas trees and other crops including soybeans, fruit and nut trees, broccoli, and cauliflower.
Due in part to years of effort by Parkinson’s advocates nationwide — including amassing more than 100,000 signatures on a petition to the Environmental Protection Agency (EPA) and logging tens of thousands of emails and phone calls to Congress — the EPA has agreed to reconsider the evidence that Paraquat causes brain damage and other harm. This could lead to the chemical being banned in the United States, as it already has been in more than 50 other countries. Additionally, The Michael J. Fox Foundation has started to petition individual states to ban Paraquat. And several groups, including the Michael J. Fox Foundation for Parkinson's Research, filed a lawsuit against the US Environmental Protection Agency (EPA) over its decision to renew approval for the herbicide paraquat.
Trichlorethylene (TCE) has been deemed an unreasonable risk of injury to human health by the U.S. EPA. The main use of trichloroethylene is in the vapor degreasing of metal parts. TCE is also used as an extraction solvent for greases, oils, fats, waxes, and tars, a chemical intermediate in the production of other chemicals, and as a refrigerant. Trichloroethylene is used in consumer products such as typewriter correction fluids, paint removers/strippers, adhesives, spot removers, and rug-cleaning fluids. Trichloroethylene was used in the past as a general anesthetic, as an inhaled obstetrical analgesic in millions of patients, When it was first widely produced in the 1920s, trichloroethylene's major use was to extract vegetable oils from plant materials such as soy, coconut, and palm. Other uses in the food industry included coffee decaffeination and the preparation of flavoring extracts from hops and spices. It has also been used for removing residual water in the production of 100% ethanol.
Of the 25 action items outlined in the Ending Parkinson’s Disease book there is much work to be done, however there seems be some movement in most of the 25 action items. What will you tackle next?
GREEN THUMB = FORWARD MOMENTUM | YELLOW THUMB = NO MOVEMENT | RED THUMB = BACKWARDS MOMENTUM
PREVENT THE DIESEASE
Ban Paraquat and other toxic herbicides and pesticides. Paraquat has been banned in over 50 countries, with nearly 20 additional countries joining the list since publishing the book. In 2023, Canada became the latest country to ban Paraquat when the manufacturer discontinued the last remaining product containing Paraquat permitted for distribution. As a result, Paraquat products are no longer in use in Canada.
Ban Trichlorethylene. Two states, Minnesota and New York, have banned TCE since the publication of the book. In Europe, Trichlorethylene (TRI, Trike) has been classified as a class 2 carcinogen since 2016 and has been banned, with a few exceptions. The largest global consumer of TCE, accounting for almost half of the annual consumption of 151 kilo tons, is East Asia, mainly China.
Accelerate the clean up of contaminated sites. Cleanup durations have increased over time. In 1984, it took 2.4 years; by 1996, it was 10.6 years. The US National Priorities List had 1,346 contaminated sites in 2018, reducing slightly to 1,336 by March 2023. The Biden-Harris Administration invested $3.5 billion in the Superfund Remedial Program, restored Superfund chemical excise taxes, and updated the list biannually, making it one of the most significant investments in US history to address legacy pollution.
Use a water filter. To safeguard your health while we wait for water clean-up, consider using a water filter. Carbon filters that can be attached to your faucets or water pitchers are a cost-effective option, but it's important to replace them regularly. Keep in mind that while they can help remove some contaminants, they may not extract every chemical from the water. Helpful resources: EPA Safe Drinking Water EWG’s Tap Water Database
Advocate for the CDC’s National Neurological Conditions Surveillance System. The CDC’s timeline was disrupted by COVID, but is finishing stage 2 of 3. It has been working on establishing and strengthening partnerships with professional and non-profit organizations to ensure representation of the needs and perspectives of PD and MS patients and caregivers. They have also collaborated with various organizations to catalog existing registries and data collection efforts that could be involved in research and improving prevention and patient care based on NNCSS findings. The CDC has also expanded its scientific expertise by engaging with experts from national institutes and establishing fellowship mechanisms to secure specialist expertise for PD and MS. The CDC has produced surveillance estimates for MS and PD by assessing the state of science and selecting the most useful and accurate definitions for identifying cases of PD and MS. They have also proposed approaches for maintaining and extending NNCSS to include surveillance for other neurological conditions. Explore the CDC’s NNCSS website here.
***Last Updated on April 19, 2023***
Protect Coworkers.
Eat like the Greeks.
Minimize your consumption of pesticides.
Sweat.
Avoid activities with high risk of head trauma.
ADVOCATE FOR ADDITIONAL RESOURCES AND POLICY CHANGES
Increase NIH funding for Parkinson’s disease.
Listen up, Big Pharma — this is a great business opportunity.
Donate to organizations that invest in important research and care.
Be loud.
Organize.
CARE FOR ALL THOSE WHO ARE AFFECTED
Train more specialists and educate clinicians.
Expand access to care.
Lobby to change insurance and Medicare.
Enable individuals with Parkinson’s to live at home.
Use technology to increase access to care.
TREAT PARKINSON’S DISEASE WITH EFFECTIVE THERAPIES
Make dopamine-replacement therapy more widely available.
Participate in clinical trials.
Take research studies to participants.
Study people with early disease symptoms and those who are at greater risk.
Provide reasonable price of Parkinson’s drugs.
VIDEO: Is Trichlorethylene an
Invisible Cause of Parkinson’s?
Professor Ray Dorsey, MD
and Larry Gifford, PD Avengers