Tick-Borne Disease Research Accountability and Transparency Act of 2014

Floor Speech

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Mr. Speaker, I thank my good friend from Texas, the distinguished subcommittee leader, chair, and doctor.

Mr. Speaker, I rise in very strong support today of the Tick-Borne Disease Research Accountability and Transparency Act of 2014, an historic bill offered by my good friend and distinguished colleague, Chris Gibson.

From all those who suffer from this hideous disease, thank you, CHRIS.

I would also like to extend my very special thanks to Chairmen Fred Upton and Joe Pitts, as well as their staff, for their tireless efforts to ensure the final bill brought before the floor today establishes a means to address huge gaps that exist and the great unmet need in the Lyme community.

Mr. Speaker, in 1992 I met with the two top medical officials at the National Institutes of Health and the Centers for Disease Control working on Lyme and an extraordinary woman named Pat Smith. We laid out a case. She did most of the talking. They listened. They were responsive. However, 22 years later, far too little has been accomplished.

I raised, as did she, the apparent ineffectiveness of a month-long antibiotic treatment for a sizable percentage of people. The CDC says between 15 to 20 percent of the people suffering from this disease don't seem to get better. We call it chronic Lyme.

Dr. Richard Horowitz notes in his bestselling book, ``Why Can't I Get Better?'':

A patient's journey typically begins with a primary care physician or a family doctor. A maximum of 30 days of antibiotics is the accepted standard of care for Lyme disease. If patients report back that they are not getting better, they are likely diagnosed as having ``post-Lyme syndrome,'' chronic fatigue syndrome, or fibromyalgia.

He then described how children are treated for other diseases or disorders, and continues:

This may help some of the symptoms yet fail to address the root problem.

Unfortunately, without better information on chronic Lyme and how to treat it, we will continue to ``fail to address the root of the problem'' and, in so doing, fail to assist patients in need.

Mr. Speaker, I fully understand that there are concerns about the prolonged use of antibiotics. I chair the Global Health Committee and have chaired numerous hearings on multidrug-resistant tuberculosis and many other diseases that increasingly are being treated with antibiotics with less effectiveness. Yet the ISDA, in their final report of the Lyme Disease Review Panel, found:

There has yet to be a study that demonstrates comparable benefits to prolonged antibiotic therapy beyond 1 month.

There have been far too few studies. There is an engraved invitation. I say to my colleagues, there needs to be those studies. You can fit on half a page the number of studies that have been done over these many years.

However, in that same report, they went on to say:

This conclusion was reached despite the large volumes of case reports, case series, anecdotes, and patient testimonials reviewed that attest to perceived clinical improvement during antibiotic therapy.

Large volumes are just dismissed and laid aside as if they were trivial. It was dismissed and didn't make it into the final report, except for that sentence.

Dr. Horowitz has said that:

In fact, increasing the dose of antibiotics and/or extending the length of treatment clearly did help a certain percentage of my patients. Their fatigue, headaches, joint and muscle pain, and cognitive symptoms improved.

Among clinicians--and I have met with dozens of them--Dr. Horowitz is not alone at all in those findings.

So, Mr. Speaker, we need scientifically-based answers and a comprehensive probe that goes wherever the data suggests. And this is especially important for my own constituents. In New Jersey, over the last 15 years, about 55,000 people have had cases of Lyme.

This bill before us accelerates the process of helping Lyme patients by establishing an interagency working group on Lyme disease with diverse opinions--which is very important--in a transparent and open manner and creates a strategic plan to guide existing Federal Lyme disease research and treatment programs.

Of particular significance, the House bill that we will vote on today for the first time identifies and seeks to address chronic Lyme disease.

Mr. Speaker, the CDC says:

Approximately 10 to 20 percent of patients treated for Lyme disease with a recommended 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, or join and muscle aches.

I would respectfully submit that they are symptoms of something that has a root cause.

The CDC refers to chronic Lyme as ``Post-treatment Lyme Disease Syndrome,'' and many people have been dismissed and told, Oh, you are a hypochondriac. And yet there are so many cases, it can't be dismissed.

This bill is a great step forward for chronic Lyme patients, especially those who have suffered for decades with this debilitating disease, again, only to be told that their illness does not exist.

Again, I want to thank my good friend, Chris Gibson, for his leadership and for the leadership of our House Republicans and our friends on the other side of the aisle. This is a bipartisan bill, and I do hope Members will support it robustly.

Mr. BURGESS. Mr. Speaker, I yield back the balance of my time.

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