Asbury Park Press article on Smith's Efforts on Lyme disease:'Rep. Chris Smith on Lyme disease 'cultural of denial''
'A Q&A with the congressman, who has crusaded for Lyme disease research and formal recognition of chronic Lyme'
U.S. Representative Chris Smith (R-4th) recently had a guest in his office to discuss human trafficking legislation, and during the course of their conversation, Lyme disease came up.
It’s a subject Smith knows all too well. For decades he has pushed for advances in research and treatment of the condition, which is widespread in New Jersey. So when the guest said she suffered from a chronic case of Lyme and struggled to find proper care, Smith understood her frustration.
“Her doctor doesn’t believe in chronic Lyme,” Smith told Gannett New Jersey in a phone interview last week. “That’s still the modus operandi of many in the medical profession. They say (chronic) Lyme disease is all in your head and is just the echo chamber of a former disease. But people are still suffering.”
Lyme disease affects 300,000 people per year in the U.S. For many who are diagnosed promptly, the standard month-long course of antibiotics mitigates the illness. But detection is difficult, and for thousands of folks, the symptoms continue for months or years.
“They give you one month of antibiotics and say, ‘Have a nice life,’” Smith said. “That is far from the reality of what Lyme disease patients are experiencing. That’s been the fight since I got involved with this in 1992.”
To date, the influential Infectious Diseases Society of America has declined to recognize chronic Lyme in its clinical practice guidelines. Chronic Lyme advocates say that omission has caused a domino effect of needless suffering.
“The insurance companies take that greatly flawed definition and say, ‘Your chronic Lyme disease is non-existent. It’s all in your head,’” Smith said. “That’s why I have been absolutely dogged all these years in trying to change this. We’re on the threshold of doing that.”
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Last July, Smith supported the 21st Century Cures Act, which would establish an Interagency Lyme and Tick-Borne Disease Working Group. It passed the House of Representatives, but a counterpart bill in the Senate did not address Lyme.
“I remain hopeful that a resolution of these two initiatives can be passed before the end of this Congress, with Lyme and other tick-borne diseases included,” Smith wrote in a detailed email exchange that took place before the phone interview.
Below are more excerpts from Gannett New Jersey’s conversation with Smith on the issue.
Q. What has driven you to champion the victims of Lyme disease and research for solutions?
A. In 1992, Pat Smith, of the Lyme Disease Association, came to my town hall meeting in Wall Township. She asked me to get involved and I did. On September 28, 1993 I offered an amendment to establish a Lyme Disease Program through the Environmental Hygiene Agency of the U.S. Department of the Army. It passed and became law.
Since then, I have met with scores of constituents and patients who have been impacted by Lyme disease and I have been dismayed and angered by the stories I have heard from patients who have suffered at length because of the unwillingness of some to take a fresh, comprehensive look at this insidious disease.
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Because of the very real impact this disease is having on my constituents, I have been working to address the needs of the Lyme disease community through comprehensive legislation since 1998, when I introduced the Lyme Disease Initiative Act of 1998 to establish a program to provide for a reduction in the incidence and prevalence of Lyme disease, with the goal of ensuring that patients, advocates, and scientists with diverse viewpoints would be fairly represented in public health policy decisions affecting Lyme.
Q. What have been the biggest obstacles to passing legislation to help Lyme sufferers and promote more research?
A. During my time in Congress, I have seen firsthand the culture of denial that exists surrounding the prevalence and toxicity of Lyme -- exacerbated by the fact that the Infectious Disease Society of America (IDSA) definition precludes chronic Lyme, contrary to significant evidence, patient experience, and clinician testimonials.
Q. During your time in Congress, how has public perception moved or changed concerning Lyme disease?
A. When I first became involved in the Lyme disease community, the vast prevalence of Lyme was unknown and unacknowledged, and there was no acknowledgement of chronic Lyme disease and the issue of persistence. While individuals who suffer from chronic Lyme still have an uphill battle, in recent years, I have seen the beginning of a sea change in the attitudes of the federal officials who are responsible for coordinating the Lyme disease initiative and I am encouraged by the current leadership.
Last week, I met with Dr. Benjamin Beard, the Chief of the Bacterial Diseases Branch at the CDC’s Division of Vector-Borne Diseases in Fort Collins, Colorado. I was greatly encouraged by Dr. Beard’s update on the state of Lyme disease research at the CDC and look forward to working with Dr. Beard in the future.
Q. What kind of feedback have you gotten from Lyme sufferers and their families?
A, The overwhelming feedback I have received from my constituents is that of frustration and desperation. Lyme disease patients who are not initially treated by Lyme literate doctors can face a series of incorrect diagnoses — causing their symptoms to become more serious as they are left untreated.
Further, for chronic Lyme patients who continue to suffer after their initial round of antibiotics and are told that their condition, chronic Lyme, doesn’t exist, the situation can be even worse. The treatment they receive from many in the medical community who deny their disease is demoralizing and many face daunting medical cost — as outdated IDSA guidelines promulgated by the Department of Health and Human Services (HHS) have steered many insurance companies away from covering vital treatments for chronic Lyme.
Q. From your vantage point, why does it seem like the medical profession has been slow to acknowledge long-term Lyme disease?
A. The continued dissemination of outdated guidelines, initially drafted by the IDSA, and promulgated through the National Guideline Clearinghouse (NGC), has contributed to medical community’s denial of chronic Lyme disease and the denial of coverage by insurance companies of treatments for chronic Lyme disease. The mission of the NGC, an initiative of HHS, is to serve as a source to the public of accessible “objective, detailed information on clinical practice guidelines.”
While the NGC inclusion criteria require that all guidelines represented in the NGC database have been “developed, reviewed or revised within the last five years,” Lyme guidelines put forward by IDSA in 2006 were still posted through the NGC far past the five-year mark. I worked for several years to get answers on why the outdated guidelines continued to be promulgated by NGC and to have them removed.
In February 2016, the NGC finally removed these flawed guidelines from its website. Currently, IDSA is working on drafting new guidelines and I will continue to monitor the process and provide extensive feedback once the draft proposal is available for public comment.
Q. What's next on the horizon for Lyme disease legislation?
A. As the CDC now acknowledges that there are 300,000 new cases of Lyme disease each year, I am working to introduce new legislation to fund federal initiatives on research, surveillance and better diagnostics – with provisions to improve transparency and accountability throughout the process.
This article by staff writer Jerry Carino was originally published in the May 31, 2016 print edition of the Asbury Park Press on Page D1 at: http://www.app.com/story/life/wellness/2016/05/31/rep-chris-smith-lyme-disease-culture-denial/84893764/