Paraquat Gets EPA Thumbs Up: Advocates Get The Agency’s Middle Finger

Commentary by Larry Gifford

U.S. Environmental Protection Agency

The recent EPA endorsement of paraquat, despite mounting evidence linking it to Parkinson's disease (PD), is a profound betrayal of public trust. This decision, seemingly driven by corporate interests, disregards the health and well-being of communities across the nation, fueling an intensified wave of outrage and disappointment.

The EPA's report, touting the benefits of paraquat for crop production, is a stark slap in the face to those who tirelessly advocate for environmental safety.

The EPA ruling reads, “After a thorough review of the relevant studies, the Agency concluded that the weight of evidence was insufficient to link paraquat exposure from pesticidal use of U.S. registered paraquat products to PD in humans.”

Despite acknowledging the potential link between paraquat and PD, the agency's assertion that benefits outweigh risks feels like a callous dismissal of the suffering and harm inflicted on individuals and families affected by this debilitating disease.

The ruling continues, “Although Parkinson’s Disease (PD) is not an expected result of the pesticidal use of paraquat, a connection has been hypothesized throughout the scientific literature, and so out of an abundance of caution, the Agency conducted a systematic review to assess the relationship between paraquat exposure and PD.”

Well, thank goodness they did a “systematic review” — cue the exaggerated eye-roll. But, unfortunately, the agency must not have read the article which noted exposure to paraquat within 1,600 feet of a home increases risk of developing Parkinson’s disease by 75%, or the University of California, Los Angeles, and the University of Southern California study which found that people exposed to paraquat at a younger age -- in their teen or young adult years -- had an increased Parkinson's risk of 100 to 500 percent, depending on overall exposure. Hmmm… surely The Michael J Fox Foundation included them among the studies and 107,000 signature petition pleading the EPA to ban paraquat.

Golly, I think I know what happened. This is funny. Well, it’s funny, not-funny. Sad, really. Actually a bit embarrassing for the EPA.

The agency didn’t read it.

You read that correctly. They didn’t get around to it. The agency admits it failed to fully consider scientific studies and testimony submitted by the Michael J. Fox Foundation and Earthjustice.

The ruling reads, “First, EPA recognizes that the Michael J. Fox Foundation and Earthjustice submitted letters to EPA on August 4, 2023, along with information that they believe is relevant to EPA’s consideration of paraquat’s health risks. This information consisted of approximately 90 submissions including scientific studies, as well as testimony filed in an ongoing state lawsuit concerning paraquat. While the Agency has started reviewing that material, it was unable to complete that review prior to the issuance of this document.”

The EPA's decision reflects a deeply flawed regulatory process that prioritizes profit over public health. By downplaying the significant risks associated with paraquat exposure, the agency not only undermines its own credibility but also perpetuates a system of injustice that disproportionately impacts vulnerable communities.

More than 10,000,000 pounds of Paraquat is used on U.S. crops each year. Paraquat is the deadliest pesticide used in U.S. agriculture, capable of killing a human with just a sip, as the U.S. Environmental Protection Agency (EPA) warns. For the record, it’s also used in Australia.

Despite the growing body of research linking paraquat to PD, the EPA's insistence on insufficient evidence is a blatant disregard for scientific consensus and the lived experiences of those affected. This dismissal of legitimate concerns only serves to amplify the outrage and disappointment felt by communities who expected better from their government.

In the end, the EPA's approval of paraquat is not just a failure of regulatory oversight but a betrayal of the fundamental duty to protect public health. Until meaningful action is taken to address the risks associated with paraquat exposure, the cycle of outrage and disappointment will persist, leaving communities vulnerable and disillusioned.

Thank you to The Michael J. Fox Foundation for including and representing PD Avengers and other organizations in the Unified Parkinson's Advocacy Council in the EPA filing.

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Countries where paraquat is banned or severely restricted

1. .Austria

2. Belgium

3. Belize

4. Benin

5. Brazil

6. Bulgaria

7. Burkini Faso

8. Cambodia

9. Canada

10. Caribbean

11. Chad

12. Chile 

13. China

14. Columbia

15. Cote d’Ivoire

16. Croatia

17. Cyprus

18. Czech Republic

19. Denmark

20. Dominican Republic

21. England

22. Estonia

23. Finland

24. France

25. Gambia

26. Germany

27. Greece

28. Guinea

29. Guinea-Bissau

30. Hungary

31. Iceland

32. Indonesia 

33. Ireland

34. Italy

35. Kuwait

36. Latvia

37. Lithuania

38. Luxembourg

39. Malaysia

40. Mali

41. Malta

42. Morocco

43. Mozambique

44. Netherlands

45. Niger

46. Northern Ireland

47. Norway

48. Oman

49. Peru

50. Philippines

51. Poland

52. Portugal

53. Romania

54. Saudi Arabia

55. Scotland

56. Senegal

57. Slovakia

58. Slovenia

59. South Korea

60. Spain

61. Sweden

62. Switzerland 

63. Taiwan

64. Togo

65. Wales

Spark of Change: Igniting Parkinson's Advocacy

by Kristi LaMonica PhD.

I live about a 20-minute drive north of New York's state capital Troy. This area has become quite the epicenter for Parkinson's advocacy, and I'm fully on board. Last year, Representative Paul Tonko (D-NY), was bipartisan co-sponsor of the National Plan to End Parkinson’s Act. I'm lucky to live right in the district of Representative Tonko. The only downside was that the plan didn't make it to the voting floor in 2022. But hey, the sponsors were true to their word –brought it back in 2023. And once again, Representative Tonko stood strong as a bipartisan co-sponsor.

Following the national plan closely through my PD Avengers connection and the Michael J. Fox Foundation (MJFF), I jumped at advocacy opportunities. My debut was at the end of March when I became part of a small group asked to meet with a staffer from Senator Kirsten Gillibrand's team (D-NY). I was given just three minutes to share my story. The goal was to sway Senator Gillibrand into co-sponsoring the national plan – and she did.

Fast forward a bit, earlier this month, MJFF contacted me again. I was invited to a "Faces of Parkinson’s" roundtable discussion with Senator Tonko and other local advocates. The day kicked off with me on a little parking adventure – street parking can be quite a puzzle. Flustered, I made it to Representative Tonko's office and was relieved to be greeted by familiar faces.

(Kristi LaMonica is third from left sitting next to Congressman Paul Tonko. Photo Credit: Samantha Simmons

Representative Tonko kicked things off by discussing how support for a National Plan to End Alzheimer’s has done wonders for research and drug pipelines. During this discussion, my dyskinesia acted up and I couldn’t sit still. Honestly, I took it as a good sign. When people with Parkinson’s advocate, we often look too put-together. I believe when we look too good, it works against our cause. It makes it more difficult for people to justify more funding for Parkinson’s. To that point, none of us in the room exactly fit the traditional image of someone with Parkinson's – you know, the stooped, white-haired, elderly man shuffling about.

We covered a lot of ground – from research to medications and nearly everything in between. Talking about the number of diagnoses created the perfect segue into discussing young onset Parkinson’s disease (YOPD), the unique challenges we face and for a request the YOPD community not be forgotten in the National Plan. The struggle to get disability support was brought up, and the research gap concerning women and hormones got its moment in the spotlight. I made sure to let Representative Tonko know that data from the PD Avengers and Fox Insight Experiences of Women with PD survey is open access via Fox Den. For researchers, it's like a treasure trove of preliminary data for grants. Overall, our meeting was a success. We didn't have to convince Representative Tonko to stand with us, but we did manage to introduce him to some new aspects.

Yesterday, another email from MJFF landed in my inbox. I'm in for a meeting with Senator Chuck Schumer's staffers (D-NY) on September 5th. It syncs perfectly with my teaching schedule, so of course, I'm saying yes!

MJFF public policy advocate and person living with young onset Parkinson’s Krisit LaMonica, PhD, of Troy, New York shared her Parkinson’s journey with New York lawmakers and the impact a PD Registry would have on research. Photo Credit: New York State Senate

In addition to advocating for the National Plan, I was invited to speak at a press event at the state capital to support a state registry for people with Parkinson’s. I was not feeling my best that day. I was off. And I wasn’t on by the time I had to leave. It was the first time I had to ask my husband to drive me anywhere. On the way to the event, I ditched my prepared speech and just spoke from the heart about the challenges Parkinson’s gave me that day. The bill unanimously passed the state senate but unfortunately the New York State Assembly did not take up the bill.

I implore each of you to reach out to state lawmakers in support of state registries across the country for Parkinson’s disease.

EDITOR’S NOTES: There is not a national registry for Parkinson’s in the United States. But there is a plan afoot. The goal is for each state to establish its own registry and feed the data into the Center for Disease Control's National Neuro-logical Conditions Surveillance System, which tracks the incidence and prevalence of many neurologic disorders, including Parkinson's.

If you would like to learn more about state government relations and how you can be involved in advancing work toward a cure for Parkinson’s, please register for the second annual State of the States webinar: 50 States, 50 Legislatures, and Thousands of Pieces of Legislation. Join the Michael J. Fox Foundation Policy Team on Wednesday, August 30 for a discussion on legislative wins, losses, and lessons learned along the way in state legislatures across the U.S. You can register for the webinar here. 

Kristi LaMonica’s Advocacy Journey: Insights for All

We can learn valuable lessons from Kristi LaMonica's adventures in advocacy.

Local Impact Matters: Living near Troy, New York's capital, taught Kristi the power of local advocacy. Change begins at home and radiates outward, creating tangible impact.

Resilience Brings Results: Despite delays, the National Plan to End Parkinson's Act's reintroduction in 2023 reflects the strength of persistence in advocacy.

Brevity Packs Punch: In her first speech to Senator Gillibrand's staffer, Kristi learned the might of concise, heartfelt messages to spur action.

Authenticity Over Perfection: Participating in a "Faces of Parkinson’s" discussion highlighted authenticity's power. Openness, not challenges, strengthens advocacy.

Inclusion is Vital: Advocating for the entire Parkinson's community, especially young onset patients, ensures equitable attention and boosts advocacy.

Stories Leave Impact: Sharing personal experiences, from accessing disability support to women's research gaps, enriches advocacy conversations.

Diverse Strategies Succeed: Engaging with officials in various contexts underscores the versatility of advocacy approaches.

Seize Opportunities: Amid personal challenges, speaking for a state registry showcased authenticity's resonance.

Collaboration Amplifies: Working with PD Avengers and Michael J. Fox Foundation emphasizes collective advocacy strength.

Incremental Steps Matter: State senate bill success proves small actions accumulate to significant change.

As Kristi LaMonica PhD. readies for Senator Schumer's staff discussion, her journey underscores every voice's importance and the impact of any contribution, no matter its size. Authenticity, seizing moments, and collaboration fuel her impactful advocacy.

Suggested Reading: Big wins and Next Steps in State Advocacy

Global Bonds and Personal Growth: Reflections on the World Parkinson Congress 2023

by Tim Hague Sr.

Panelists on Activism and Advocacy at WPC2023 in Barcelona, Left to Right, Maria de Leon, Sharon Krischer “Twitchy Woman”, Larry Gifford, Tim Hague Sr., Omotola Thomas, Fulvio Capitanio, Sara Riggare — not shown Richelle Flannigan .

My first World Parkinson Congress was back in 2013 square on the heels of the momentous event of my year; my and my son’s win of The Amazing Race Canada. I tell you this to help you understand why I remember almost nothing of that congress except the people. You see my head was already in a completely overwhelmed state and the congress was a dizzying, bombardment of information and all things Parkinson’s from around the globe. I knew nothing of this event before attending. All I really knew when I arrived was that I would be speaking on the main stage for five minutes to some three thousand folks with connections to PD.

Third from left is Eli Pollard, Executive Director of World Parkinson Congress

That event and those five minutes changed my life.

My doctor and his team were there which totally surprised me as I had no idea why they would all be at the same conference as patients. Eli Pollard (of course!) left a lasting impression as this super woman who managed to put on a massive event like this nigh on single hand idly. Now, after four such events I remain mesmerized by her super human talents! There was Bob Kuhn, fellow PWP and of Parky the raccoon fame, who shared the stage with me that year. There was Jillian Carson physiotherapist, advocate and founder of the Parkinson Wellness Project out in Victoria, British Columbia, Canada. And so many more that could and should be remembered if time and space allowed.

My point here is that it’s always about the people. This congress it was about the friends, yes friends, from all over the globe whom I do believe I could drop in for a beer or a coffee should I have the good fortune to be in their country. Countries like India, Uganda, United Kingdom, France, across the USA, Canada, Norway, Germany, Nigeria, New Zealand, Australia, Ireland, Spain, South Africa, Scotland, Japan and, well, I think you get the picture. These many and varied people have inspired me, humbled me and provided the context forme to see and better understand this disease. Ultimately, they help me live better for having known them and a bit of their journey with PD.

There’s a little pizza commercial that says what makes their particular pizza so special is that it’s “all about the sauce”. In this case “it’s all about the people” it’s the incredible people I’ve met over these past twelve years that will keep me coming back again and again for as long as I am able. If we missed each other in Barcelona let’s make sure we do that coffee in, well, wherever next time is! I’ll look forward to hearing where the next congress will be and to seeing you there.

Live Your Best!

Tim