Yesterday, I had the opportunity to participate in the Center for Lyme Action Virtual Fly-In. Every year at the beginning of the appropriations process, this nonprofit organizes a day of meetings with congressional representatives from all 50 states. As an advocate, I got to sit in meetings with New York’s senators and congressmen and women. There are six programs and laws we are asking congress to fund for the 2022 fiscal year, which include:
- The Kay Hagan Tick Act
- NIH Lyme disease and other tick-borne disease research
- Congressionally Directed Medical Research Program (peer-reviewed tick-borne disease research)
- National Public Health Framework for Prevention and Control of Vector-Borne Disease in Humans
- HHS LymeX Innovation Accelerator
- Lyme and Tick-Borne Disease Chronic Disease Prevention and Health Promotion
If you know anything about Lyme and tick-borne disease, or have been following my blog, you know it is ridiculously underfunded, misdiagnosed, and marginalized. Due to this, the burden of advancement in diagnostics and treatment falls on private donations to nonprofits like the Global Lyme Alliance.
Every year almost 500,000 people are diagnosed with Lyme disease and 100,000 of those people don’t recover. These numbers make Lyme the most prevalent vector-borne disease and the third largest infectious disease in the United States. Despite these numbers, the NIH spends only $63 on each Lyme patient. In comparison, there are only 1,700 cases of Malaria, another vector-borne disease, in the U.S. each year and the spending per patient is $118,823. The numbers speak for themselves.
In 1991, the number of individuals contracting Lyme disease was 5 times lower than today; however, we are still using the same diagnostics and treatment guidelines despite testing missing up to 60% of positive Lyme cases and significant research proving suggested treatments are ineffective. The lack of research by federal agencies like the CDC and NIH delays advancement on a disease that is growing exponentially and leaving patients bedridden and disabled. Increasing funding for research will lead to better understanding of tick-borne disease among the medical community, better treatments, and more accurate diagnostics. The longer a patient’s symptoms are ignored or undiagnosed, the more difficult the disease is to treat and the higher chance the patient will become one of the 100,000 people who develop persistent Lyme disease each year.
This is why I advocated for better awareness of Lyme and tick-borne disease as well as for increased federal funding. We NEED it! Yesterday’s meetings were filled with patients who were sick and struggling to even make it through due to their symptoms or family members who bravely represented loved ones too ill to participate. To be completely honest, at the end of the fourth meeting, I was really close to passing out, and now I will spend the next 48 hours laying on the couch, napping, and going to bed at 7pm to recover. One day those who are struggling will not need to fight for appropriate funding, treatment, and recognition, but until then, there’s work to do!
If you would like to get involved on behalf of the millions of people struggling with Lyme and tick-borne disease, please see the list of opportunities below.
- The Center for Lyme Action will be doing another Fly-In next year. Visit their website to find details and ways to support the work they do. https://centerforlymeaction.org/
- Advocacy Express: This is an incredible organization created by Lyme advocate and patient, Alexandra Moresco, that focuses on sending letters to your congressional representatives on your behalf for only the cost of stamps! The reason letters from constituents are so essential is because they must be opened and cataloged by the representative’s office. When it comes time for them to vote and advocate for appropriations (money to be allocated) they look to subjects (such as Lyme) their constituents have contracted them about throughout the year. Each one of these letters pushes Lyme and tick-borne disease up the list and onto their radars. This is a great opportunity for patients who are unable to participate in more taxing efforts! https://advocacyexpress.com/our-letters
- Contact your representatives! If you have a personal story or message you would like to send to your representatives, feel free to send your own letter! Find your representatives here: https://www.usa.gov/elected-officials
The only way to move forward is together. If you would like to know more, the “Two Much Lyme” podcast I co-host will be doing an episode on Lyme advocacy soon! Check it out here: Twomuchlymepodcast.com