Lyme Disease Task Force Unveils Proposals to Fight Illness

Noting that Delaware had the sixth-highest incidence of Lyme disease in the United States in 2013, a bipartisan group of legislators, advocates and community members unveiled Thursday a series of proposals to prevent the spread of Lyme, raise awareness and improve treatment and coverage.

In response to Delaware having a high incidence of Lyme disease, House Speaker Pete Schwartzkopf and Sen. Ernie Lopez sponsored Senate Joint Resolution 10 last year, creating the Lyme Disease Prevention Task Force, which was designed to create a unified strategy to combat Lyme disease in Delaware.

“Lyme disease is an epidemic in Delaware,” said Sen. Lopez, R-Lewes. “With new research showing the long-term problems it can cause, I’m pleased to be working in a collaborative manner to increase awareness and help eradicate this terrible disease.”

The task force, which included healthcare professionals, DNREC officials and residents suffering from Lyme, produced a report that identified several initiatives that can be undertaken to improve Lyme disease prevention, awareness, treatment and coverage. The task force’s recommendations include creating two working groups to study ways to improve insurance coverage and to research tick biology and ecology, and legislation to help better address ticks and educate medical professionals about Lyme disease.

“During our meetings, we learned how Lyme disease is not a simple illness that causes mild discomfort. It is a serious disease that carries serious health risks and problems for those who have it,” said Rep. Schwartzkopf, D-Rehoboth Beach. “The members of this task force worked tirelessly to come up with a strategy that we believe will have a real impact on Lyme disease in Delaware by helping those who suffer from it and preventing others from contracting it.”

Specifically, the proposals the task force announced Thursday are:

  • Highmark Blue Cross Blue Shield, Aetna and United Health Care will lead a working group to find ways to improve healthcare coverage for patients. Due to the limitation of the blood tests for Lyme disease, many patients do not qualify for coverage for the expensive treatments needed to respond to the serious impacts of undiagnosed Lyme disease. Coverage for initial treatment can save thousands of dollars in the long run by preventing the most severe symptoms from manifesting.
  • University of Delaware, Delaware State University and Delaware Technical & Community College will collaborate in an effort to have their students and faculty research ticks and Lyme disease in Delaware. Understating more about tick biology and ecology, and tick-borne illnesses with a Delaware-specific focus will make it easier to determine the best evidence-based solutions in disease reduction methods.
  • Legislation has been drafted that would establish a healthcare professional education oversight board. The panel would oversee the education of all types of medical professionals throughout the state to help develop balanced content for continuing education courses and seek to educate a large swath of medical professionals on Lyme disease and its prevalence in this region.
  • Another bill has been drafted that would expand the governing statute for the Department of Natural Resources to include the authority to address ticks. The prevalence of Lyme disease in Delaware is related to the large number of disease carrying ticks we have in our state. The first step to helping prevent tick-borne illness is to take a hard look at mitigation strategies for the infected ticks themselves.

Newark resident and task force member Sandy Reyes was diagnosed with Lyme disease 20 years ago after her condition worsened to the point that she was forced to resign her job as a deputy attorney general in the Department of Justice. After being diagnosed properly, she underwent treatment and was able to resume working, but the challenges of living with post-Lyme disease remain.

“I had low grade fevers, headaches, joint aches, stomach problems, back aches, extreme exhaustion and dizziness. I was misdiagnosed with fibromyalgia, sinus infections, Meniere’s disease, and IBS. After about two years, my health was deteriorating to the point that I began going to bed as soon as I arrived home from work.  I can remember one day leaving work and trying to walk to my car and being in so much pain and discomfort that I would stop and hold on to parking meters to balance myself and rest,” Ms. Reyes said.

“I still feel the stigma of Lyme disease and talk very little about my health.  Many don’t realize that, but Lyme disease has a stigma. Many people expressed their thoughts that Lyme was almost identical to the flu. My hope is that in sharing my story, too many people will not have to share in my experiences. I strongly encourage continued work and efforts to locate funding for Lyme and tick borne disease prevention, diagnosis, treatment, and education. We still have much work to do, but I am proud of the work we have started here in Delaware. I’m hopeful that our efforts have a positive impact on people’s lives.”

Lyme disease has impacted many Delawareans, including reigning WNBA MVP Elena Delle Donne, who has been forced to miss several basketball games with the Chicago Sky and while at the University of Delaware due to flare-ups of her Lyme disease. She contracted Lyme in 2008 during her senior year at Ursuline Academy.

“If you have Lyme disease, it’s something that you battle every single day,” Ms. Delle Donne said. “It’s important that the public is educated about the disease and that we take the steps to prevent people from contracting it, while also searching for a cure. It’s a tough battle and anything that can be done to help should be.”