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President's Blog
LDA President’s Blog – LDA & Duke U. Law Students Join Forces to Educate on Lyme

Pat Smith, LDA President
Pat Smith, LDA President

Initial Outreach by Duke U Student
When the Lyme Disease Association Inc. (LDA) was contacted by a student at Duke Law who wanted to organize a group of students in a Lyme disease pro bono project, I was very excited about the possibilities. As a former teacher, parent-teacher organization president, and board of education president, I had always been involved in spreading knowledge, providing input into what that knowledge should consist of, and overseeing its delivery.

History of LDA & President on Lyme
Later, when my life took an unexpected turn─ Lyme disease devastating my area and family─ I discerned I still had the same goals, but different topic in different venues. My focus was now on a disease topic that I initially knew nothing about, nor did most professionals. I really did not want to know about Lyme, but it was a huge problem few wanted to tackle. I intimately saw the devastation it produced in the school district and in families, my own and my friends’. I told our school superintendent we needed to provide information to parents and staff who were impacted, yet we had nothing to provide. If you get it, we’ll provide it, he said. In my quest, I discovered a two-pager from a naval base endemic with Lyme. My life always had the same bottom line: Education is the key! I tackled the issue in the district and then moved on to other areas of society through LDA. I never looked back. Forty-seven years after the disease was first discovered by a mom, Polly Murray, there is still not enough information on Lyme disease, and much of it is incorrect or incomplete. Few are willing, able, and have the time to educate. Along with many other advocates, I have traveled across the US to not only educate but to catch the interest of those at every level of government: in our nation’s capital, dozens of state capitals, county seats, and school boards. They generally controlled the purse strings. Educating did not stop with elected officials but encompassed doctors, nurses, researchers, public health officials, businesses and employees, teachers and administrators, celebrities, children in schools, and the general public.

Seeking Credibility to Achieve Goals
I had to be credible as the face of the LDA to achieve the desired results, as did the LDA team. That credibility requires facts. It was a hands-on learning process for me. Still, with the help of the entire LDA team over decades, LDA’s had much success in shaping public policy, educating all audiences, providing research grants─60 published in peer review to date─ and providing 21 CME conferences for physicians, most partnering with Columbia University. Never forgetting patients, LDA’s provided families funds through LymeAid4Kids and printed brochures for S&H cost. It’s been a daunting job for many volunteers and some consultants (many sick with Lyme) to handle, but it’s still not enough to stop Lyme.

Politics of Lyme Requires Collaboration: Chronic Lyme
Lyme is not just a disease but a political nightmare. The need for this collaboration specifically stems from the controversial nature of Lyme. Up to 20% or more of patients develop long-term symptoms after the short courses of antibiotics recommended by the Infectious Disease Society of America (IDSA) Lyme Treatment Guidelines. IDSA does not believe in chronic Lyme─ their guidelines reflect that stance. The government follows suit. Patients, advocates, and treating physicians have been repeatedly hammered for advocating a differing viewpoint─ longer-term treatment when the physician feels it is medically necessary.

Motivated, Dedicated Students Provide Research Expertise
When Lucas contacted the LDA, I knew this was an opportunity to have some of the brightest and most motivated of our youth tackle this epidemic, which has grown exponentially in the US, says CDC─ 476,000+ people diagnosed/treated annually. Children 0-19 years constitute 29% of reported Lyme cases, so it’s no surprise that Duke Law’s Madison, who has joined this project this semester, got Lyme during those childhood years, and Lucas got it a bit outside of that age range. Many of their peers have probably had their earlier and current lives disrupted by Lyme disease. Those students can also become educated from the project findings and perhaps use the knowledge in their stated profession.

LDA Provides “In the Trenches” Experience on Lyme Including the Politics
The LDA provides topics and questions to the Lyme Disease Advocacy Project including: relationship between Council of State & Territorial Epidemiologists (CSTE) and CDC in constructing Lyme disease surveillance criteria, the NIH Lyme grant review process, OspA based Lyme vaccines, and government website policies on Lyme. The Project provides sophisticated, in-depth, factual research supported by peer review and/or governmental laws, policies, and regulations on the issues LDA provides.

Bottom Line
The questions surrounding Lyme help create the political morass which has engulfed patients and prevented them from getting appropriate care. Factual data from these dedicated law students might uncover the basis as to why Lyme is presented as a simple disease with a simple cure rather than a disease caused by a complex organism which continues to devastate so many lives. The findings can be disseminated and used to empower patients, families, physicians, politicians, and researchers to unravel the secrets surrounding Lyme and provide solutions for Lyme and other tick-borne diseases across the globe.


Lucas MearsDuke University School of Law Lucas Mears
Duke University School of Law

Duke Law:

Lyme Disease Pro Bono Advocacy Project

Madison PinckneyDuke University School of Law Madison Pinckney
Duke University School of Law

 

The ability to use the skills we are gaining in law school to improve a cause we care so much about has been an incredibly rewarding experience. We formed the Lyme Disease Advocacy Project in February of 2022 after our experiences contracting and combatting Lyme disease. Our hope for the project was multifaceted. We sought to provide legal research and writing for the Lyme Disease Association, Inc. (LDA) hoping to answer legal questions as they lobbied for increased resources and better treatment for Lyme disease. Beyond that, we sought to provide students an opportunity to learn more about the disease, learn about the stigma and obstacles that those who contracted it face, and give students an opportunity to gain experience in advocating and legislating.

The project gained formal recognition in the summer of 2022. Before that, the Lyme Disease Advocacy Project ran as an independent pro bono project for the spring 2022 semester. Duke University was fully supportive of transforming the project into a formal pro bono group. In the spring semester, with a late start and only becoming a project in February, we were able to have ten student volunteers working on different projects surrounding legal issues and questions about Lyme disease. It felt great to know that these students were not only given an opportunity to assist the Lyme Disease Association answer important questions, but also that all of these students were able to learn more about the disease.

After the success of the project in spring of 2022 and becoming a formal pro bono group in the summer of 2022, the project is excited to continue to work with the Lyme Disease Association and make tangible contributions to advocating for improving the lives of Lyme patients. The project will continue to work on legal research for the association, answering important questions that will allow it to better advocate and lobby for change. Not only that, but the project is hoping to branch out as an educational resource as well, providing student volunteers with the opportunity to learn more about the disease while also hosting other events and speakers at the law school to discuss the problems that exist surrounding Lyme disease.

There are always a few odd looks when the name of the group is said. Is that not a super specific issue to have a whole project focused on? Is there that much interest in Lyme disease? How much legal work could really be done for Lyme disease? Those who get involved in the project get their questions answered very quickly as they learn more about the disease. More than anything, it has been an incredibly satisfying feeling to be able to contribute to an issue that has affected both of us. You don’t need a medical degree to help the Lyme disease community- everyone has something to contribute.

 

GUEST BLOGGERS:

Luke Mears is a second-year law student at Duke University School of Law.  Luke contracted Lyme disease in the summer of 2020, right at the onset of the Covid 19 pandemic where medical attention was difficult to obtain.  After recovering, Luke wanted to become involved in advocating for better legislation and resources around Lyme disease, and as a result co-founded and now co-directs Duke University School of Law’s Lyme Disease Advocacy Project.  The project focuses on answering legislative and legal questions that the Lyme Disease Association has to allow the organization to better advocate and lobby for Lyme disease resources.

Madison Pinckney is a second-year law student at Duke University School of Law. Madison contracted Lyme and other tick-borne diseases when she was nine years old but wasn’t diagnosed until she was 19. While working to heal from the long-term effects of delayed diagnosis, Madison decided to attend law school to make tangible change in the Lyme and chronic illness communities. At Duke, she co-founded and co-directs the Lyme Disease Advocacy Project, answering the Lyme Disease Association’s legislative and legal questions to help it better advocate and lobby for change in the treatment of Lyme disease.