Fighting Lyme disease in Delaware

Delaware’s Lyme disease prevention task force released its recommendations on Thursday, about how to prevent, raise awareness and improve treatment and coverage for the disease.

Delaware had the sixth-highest incidence of Lyme disease in the country in 2013, prompting state lawmakers to create the task force last year.

House Speaker Pete Schwartzkopf and state Senator Ernie Lopez co-chaired the task force which was comprised of bipartisan legislators, healthcare professionals and community members suffering from Lyme. 

“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 produced a report that concluded there’s much work to do to increase public awareness, develop better diagnosis and treatment and reduce the impact of ticks in the state. 

Lyme disease is transmitted through the bite of an infected tick. Without prompt treatment, the infection can damage the joints, heart and central nervous system, leading to things like meningitis and some paralysis.   

“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.”

The task force’s recommendations included: 

• 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. Understanding 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 the state. The first step to helping prevent tick-borne illness is to take a hard look at mitigation strategies for the infected ticks themselves.

Living with Lyme

Task force member Sandy Reyes lives in Newark. She was diagnosed with Lyme disease 20 years ago, but was misdiagnosed initially.

“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,” Reyes said.

After two years, she said her condition worsened to the point where she was forced to resign from her job as deputy attorney general in Delaware’s Dept. of Justice.

“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,” Reyes said.

After being diagnosed properly, she underwent treatment and was able to resume working, but Reyes said  the challenges of living with post-Lyme disease remain.

“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,” Reyes said. “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.”

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.”