Lasala-Wood: end government lip service on Lyme disease policy

Time is ticking away for victims of chronic Lyme disease, and Congress has failed to pass legislation establishing a policy on this public health crisis. 

House Resolution 5900 would force the creation of a national strategy to overcome Lyme and other tick-borne diseases, but the bill appears to be in cardiac arrest. Unless the bill is resuscitated, the outlook for chronic Lyme patients appears bleak. They will remain stuck between the terrible symptoms of their disease and a medical community reluctant to provide treatment.

According to the Centers for Disease Control and Prevention, Lyme is the fastest growing tick-borne infectious disease in the country.

Around 300,000 cases are diagnosed each year, and the results can be devastating. Estimates of the annual cost of caring for Lyme patients already range from $712 million to $1.3 billion.

Lyme disease is most often the result of being bitten by an infected tick native to the Northeast and Midwest regions of the country. The formal name of the offending little creature is Ixodes scapularis, but most people simply refer to them as deer ticks or blacklegged ticks.

They can carry a dangerous bacterium named Borrelia burgdorferi, the root cause of Lyme. The first sign of infection is frequently a skin rash in the shape of a bullseye, usually occurring at the site of the tick bite. Other symptoms can include headache, fever, fatigue, and muscle aches.

These are often mild and go away with early diagnosis and treatment. In other cases, symptoms can be more severe. Examples include severe joint pain, headaches, neck tenderness, myalgia, and even palsy, neuropathy, and cognitive dysfunction. If left untreated, the infection can eventually spread to the joints, heart, and nervous system.

There’s more bad news. Symptoms can flare or worsen long after the tick bite, and many can mimic other medical ailments. Even if diagnosed as Lyme, patients find themselves caught in the middle of intense debates in the medical community and government over how to treat chronic cases. The CDC and the International Lyme and Associated Disease Society offer medical practitioners treatment guidelines for early stages of the infection, but for chronic cases where longer treatments are needed, no such protocols exist.

Disagreements rage, for instance, regarding benefits versus risks from long-term use of antibiotics. Without accepted guidelines and protocols for chronic cases, medical providers are understandably reluctant to accept these patients. Until something happens to break the gridlock, patients remain confused, angry, and increasingly demanding action from the government.

Congress started to take notice earlier this year. The co-chairs of the Congressional Lyme Disease Caucus introduced a bill to the United States House of Representatives in May. H.R. 5900 would require the Secretary of the Department of Health and Human Services (HHS) to establish an Office of Oversight and Coordination for Tick-Borne Diseases.

Key responsibilities include: a) creating and updating a national strategy to overcome Lyme disease and other tick-borne diseases, and b) overseeing and coordinating Lyme disease and other tick-borne disease programs and activities.

Example objectives would include: 1) expanded and improved research, 2) expanded and improved surveillance and reporting, 3) development of effective diagnostic tests and treatments, 4) design and conduct of clinical trials, 5) systematic documentation of the experiences of health care professionals in diagnosing and treating tick-borne disease, and 6) inclusion of chronic Lyme patients in clinical research.

Disappointingly, however, the bill is languishing in the proverbial committee; specifically the House Committee on Energy and Commerce. The prognosis is not good. H.R. 5900 has only a 2 percent chance of being passed into law according to Skopos Labs ( Opponents cite the already rising cost of health care and a desire for avoiding unnecessary dictates to the medical community. They fear added bureaucracy could hinder progress in developing treatments and treatment guidelines.

While valid concerns, H.R. 5900 was authored in a bipartisan manner to ensure focus remains on resolving the current gridlock facing patients and their medical providers. A national strategy developed and overseen by a single organization accountable for producing results will actually cut through red tape and focus existing resources on tangible outcomes.

Without intervention, lawmakers will have once again served up a big dose of lip service to an important health issue, only to sit by idly as meaningful policy legislation slips into a silent death. It’s time to demand that Congress grab a crash cart and start CPR on this important bill. Don’t wait; contact your Representative today. Tell them to breathe life back into H.R. 5900.

For more about Lyme disease, visit the CDC website. For the full text and status of H.R. 5900, visit the website and enter H.R. 5900 in the search field.

Editor’s note: Ms. LaSala-Wood is a board-certified Family Nurse Practitioner and owns Sunset Clinic Family Medical Practice in Scottsdale.

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