Lyme activist Sue Ferrara watched the July 17 Lyme hearing and wrote this summary.

Oversight Hearing

Global Challenges in Diagnosing and Managing Lyme Disease—Closing Knowledge Gaps

July 17, 2012-

Subcommittee on Africa, Global Health, and Human Rights
Chaired by Christopher H. Smith (R-NJ)

Prepared remarks of witnesses available here.

Chairman Chris Smith opened the session with the observation that in 1998, he introduced two nearly alike bills—one addressed Lyme disease, the other addressed Autism.  The Autism bill has since passed, but his Lyme efforts languish.  He referred to the 1990s as The Missed Decade on Lyme. He noted cases of Lyme have been reported in 49/50 US states—the exception is Hawaii.  He also noted Lyme has become endemic to the Amazon region of Brazil.

Here is the text of the 1998 bill  HR3795:

To establish a program to provide for a reduction in the incidence and prevalence of Lyme disease. (Click here to read bill.)

The bill died in committee in 1998 and has been resubmitted several times, most recently in 2011.

Congressman Christopher Smith (R-NJ) introduced HR-2557, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2011, on Friday, July 15, 2011, along with cosponsors Frank Wolf (VA), Tim Holden (PA), and Chris Gibson (NY).

H.R.2557—The Establishment Of The Tick-Borne Diseases Advisory Committee

On July 14, 2011, Representative Chris Smith (R-NJ) introduced H.R. 2557, to provide for the establishment of the Tick-Borne Diseases Advisory Committee. Provisions would require the Secretary of Health and Human Services to establish a Tick-Borne Diseases Advisory Committee to (1) advise the Secretary and the Assistant Secretary for Health, (2) ensure interagency coordination and communication, minimize overlap, identify opportunities to coordinate with other Federal agencies and private organizations addressing such diseases, (3) ensure interagency coordination and communication with constituency groups, and (4) representatives of a broad spectrum of scientific viewpoints, and (5) advise relevant Federal agencies on priorities regarding Lyme and other tick-borne diseases. The Directors of NIH, CDC, and AHRQ; the Administrator of the U.S. Food and Drug Administration (FDA); and representatives from the Office of the Assistant Secretary for Health and other Federal agencies would serve as ex officio members of the Committee.

Not later than one year after enactment, the Committee, acting through the Directors of the NIH and CDC would be required to submit a report to the Secretary. Authorized would be $250,000 for Fiscal Years 2012 through 2016. These provisions are almost identical to those included in bills introduced by Representative Smith over the past several Congresses. H.R. 2557 was referred to the House Committee on Energy and Commerce. (Click here to read bill.) That bill is still in committee.

Congressman Smith also noted Lyme is becoming a growing problem in Australia and Canada.  Lyme is the 6^th most common reportable disease in US; and, it is the 2^nd largest disease reported in Northeast.

Noticeably absent from today’s witness list were any representatives from the CDC, NIH or IDSA (Infectious Disease Society of America).  Congressman Smith said invitations to each of these organizations remains open and he hoped witnesses would come before the committee.

Congressman Smith acknowledged the existence of “two distinct views” of Lyme.  He noted that members of IDSA maintained Lyme was “hard to catch, but easy to cure.”

The other side of the debate comes from the members of ILADS (International Lyme and Associated Diseases Society) maintains “the science [on Lyme]  is too unsettled to be definitive.”

Congressman Smith lamented that this back and forth is perceived as people being “. . . more interested in winning arguments than in moving forward.”

The hearing was barely attended by committee members.  Congressman Karen Bass (CA-33) spoke briefly and left.  Congressman Frank Wolf (VA-10) while not a committee member, spoke telling those gathered that “for the longest time [he and his constituents] have been the lone voice crying in the wilderness.”  He also left.

The only other Congressman to stay and hear testimony with Congressman Smith was Congressman Chris Gibson (NY-20) whose district lies along the eastern border of upstate NY, and includes areas of the Adirondacks and the Catskills.  Cong. Gibson is also not a committee member, but has been holding meetings on the topic of Lyme in his district.

This [attention to Lyme disease] has been constituent driven.  There are so many people in Upstate NY suffering from this affliction and they are confused.

Gibson noted that Congress had appropriated money in the past for further research only to end up with the same results.

The witnesses relayed information that many in the Lyme community already know and understand.

Stephen Barthold, PhD told the committee that something unique is going on with these Lyme infections and further investigation is needed.  He spoke about the persistence of the bacteria.

It was interesting to learn that Raphael Stricker, MD- Vice President of ILADS has over 2,000 patients in his practice from all over the US and around the world.  Many of the patients have been ill for years, and come with no diagnosis; or have a Lyme infection but cannot find a doctor who will treat the illness.

Dr. Stricker called Lyme the most common tick-born disease in the world today.

He noted the State of California has enacted a Health Care Protection Law for practitioners to be able to treat Lyme patients.

Dr. Stricker also called on NIH and the CDC to abandon their failed Lyme programs.

Mark Eshoo, PhD who works for Abbott’s Ibis Bio Sciences division  said his company is working on refining lab tests.

At the moment, Abbott has developed an assay with 8 independent tests.  The tests look at a large volume of blood.  And, the company uses a technique to increase presence of bacteria in the blood stream.

Dr. Eshoo called Lyme the most common vector born disease in North America.  In Africa, Dr. Eshoo said, Babesiosis often mistaken for malaria.

He added that in lab studies, mice don’t die but become chronically infected because if the mammalian host died, the bacteria would die.  Dr. Eshoo also noted that Lyme bacteria infect places where it is hardest for the immune system to respond to its presence—like joints.

Patricia Smith, President of the Lyme Disease Association, talked about the toll Lyme takes not only on the patient, but family members and advocates.  She spoke about the name calling, how Lyme was referred to as the Yuppie disease, or the Housewive’s disease.  She noted how advocates have been portrayed as crazed know-nothings.

Ms. Smith talked about the huge impact the negative response to Lyme has on children.  She noted her own experiences of being told that her children were “faking” their illness to get out of school.  She talked about the suicide attempts among children with Lyme—some even going beyond attempts to success.  She spoke about parents losing children to social service agencies because the view was the parent was making the child sick.

She noted children with Lyme infections often experience a 22 pt. drop in IQ.

Evan White was 11-years old when he fell ill.  He told the committee at one point he was essentially a vegetable—unable to communicate, read and confined to a wheel chair.  His said his parents eventually found a doctor to treat his Lyme infection; and is now living, as he said “a fulfilled life.”  He and his wife just had their first child.  He has a law practice.

His strongest warning to the committee:  The net effect of the current guidelines, restricting the treatment of Lyme patients, deprives so many, if not all, from receiving long term treatment.

Mr. White and several other witnesses condemned the two-tiered guidelines that were designed for surveillance and not treatment.

The last witness, Ms. Stella Huyshe-Shires testified from her home in the UK.  She was featured in a May 11, 2011 article about her own trials with Lyme.

Ms. Huyshe-Shires noted that the long arm of IDSA reaches into the guidelines overseas in Britain.  She said the problem as she sees it is trying to come to an agreement on the uncertainty of the current situation.

There is reluctance [on the part of some people] to climb out of an entrenched position, she said.

Adequate treatment usually means the treatment conforms to guidelines, she noted. The worst is when doctors do not believe you; or when they tell you your symptoms are all in your head.

There was mention of a study out of the London School of Hygiene and Tropical Medicine, but the reference was not cited completely.  This may be the study:

http://www.euro.who.int/__data/assets/pdf_file/0006/96819/E89522.pdf

In closing the hearing, Congressman Smith said he was shocked and dismayed by his inability to get Lyme legislation passed.  There is this inability to say “welcome all sides” so we can get to the bottom of this, said Congressman Smith.

In closing, Dr. Stricker thanked Cong. Smith for organizing the hearing.  We need better studies.  We need better clinical trials, he said. 

Ms Smith said she wanted to address the agencies in abstentia—patients are fighting for their very lives, she said. There comes a point in time when they have to … look at the reality. She note advocates and patients should not be adversaries. Sit with us, said Ms. Smith to the absent CDC, NIH and IDSA, and let’s move forward.

Dr. Eshoo told the committee good science will help bring people together.

Dr. Barthold said he was very saddened by the contentiousness involved with this disease. We need to have open dialogue with everybody.  We often have the same goals.

Ms. Huyshe-Shires stressed, we do need to work together.  We need to come out of any entrenched positions.  There is a lot to learn about Lyme disease.

Former patient, no lawyer and Lyme advocate Evan White had the final say.  It’s time for everyone to get together and act in the best interest [Lyme patients].  I don’t understand this contentiousness when so many people are being harmed at this point.

The hearing lasted for about 2 hours.