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Christopher Smith's Lyme Disease Bill 2557

Posted: Mon 25 Jul 2011 4:28
by RitaA
This thread is to atone for a mistake I recently made by confusing this bill with one introduced by Senator Blumenthal.

http://www.jacksonnjonline.com/2011/07/ ... e-disease/
Congressman Chris Smith introduces bill to combat Lyme Disease

By Jackson, NJ on July 19, 2011
Filed under: Community News

Congressman Chris Smith (R-NJ) announced on Monday the introduction of a bill he wrote to combat Lyme disease.

Smith is the sponsor of the measure, H.R. 2557, which would support federal efforts concerning Lyme and other tick-borne diseases through the establishment of a Tick-Borne Diseases Advisory Committee. Smith co-chairs the House Lyme Disease Caucus, along with Frank Wolf (R-VA) and Tim Holden (D-PA), who are both cosponsors of the bill.

“It seems everywhere I go, someone comes up to me to talk about how Lyme disease has severely impacted their lives or someone they know,” said Smith. “Lyme is a very prevalent disease in the U.S. today. This legislation provides a comprehensive, nationwide effort to step up the fight against this disease. New Jersey is particularly hard hit.”

The Tick-Borne Diseases Advisory Committee would ensure coordination and communication among many federal agencies, a broad range of medical professionals, and patients. The bill requires the Secretary of Health and Human Services to establish the advisory committee to advise the Secretary and the Assistant Secretary for Health on Lyme disease activities. The Committee would meet at least twice a year, and submit, through the Director of the Centers for Disease Control and Prevention and the Director of the National Institutes of Health, an annual report of the Committee’s functions to the Secretary.

While Lyme accounts for 90 percent of tick-borne diseases in the U.S., the same tick species spreads other diseases, such as anaplasmosis and babesiosis. Other tick species spread diseases, such as Rocky Mountain spotted fever and southern tick-associated illness.

Smith’s own state of New Jersey has high prevalence rates. The Lyme Disease Association (LDA), is headquartered in Jackson Township, Ocean County N.J. in Smith’s district.

“This bill represents an outstanding piece of legislation that creates a Tick-Borne Diseases Advisory Committee to address many of the pressing needs of the community. The Committee is designed to ensure interagency coordination and communication that will advance a broad spectrum of viewpoints,” said Pat Smith, president of the LDA. “It will create a forum where government agency representatives and stakeholders will work together to identify priority issues regarding Lyme and tick-borne diseases. We are grateful to Congressman Smith and his staff for their enduring commitment to improve the health of countless patients suffering from Lyme and tick-borne diseases.”

Other regions are also hit hard, including Virginia, New York, Pennsylvania, Connecticut and other states.

"As I have traveled throughout my congressional district, I have been struck by the lack of knowledge about Lyme by both patients and medical providers, even though this area has long been at the center of a Lyme epidemic,” said Congressman Frank Wolf. “I am pleased that this legislation builds on recommendations made by the Institute of Medicine in a report issued this past April and I hope that it will further efforts to increase awareness, knowledge, and transparency. Congressman Smith deserves a lot of credit for his hard work on this issue. I hope to continue my work with him, Congressman Holden, and Congressman Chris Gibson (NY-20), so that we can move closer to solutions for those infected.”

Gibson is also an original co-sponsor of the bill.

The Centers for Disease Control & Prevention (CDC) estimates that only 10 percent of Lyme cases may be reported. Lyme disease can lead to chronic illness and can affect every system in the body, including the central nervous system. Advanced symptoms include arthritis of weight-bearing joints, neurological and cardiac problems, encephalopathy and memory problems. The CDC has determined that from 1992 to 2006, the incidence of Lyme disease was highest among children aged 5 to 14 years of age.
Here's Bill HR-2557 that Mr. SMITH of New Jersey (for himself, Mr. WOLF, Mr. HOLDEN, and Mr. GIBSON) introduced (not be confused with Senator Blumenthal's Bill introduced to The Senate on July 18th) :

http://www.govtrack.us/congress/billtex ... =h112-2557
112th CONGRESS

1st Session

H. R. 2557

To provide for the establishment of the Tick-Borne Diseases Advisory Committee.

IN THE HOUSE OF REPRESENTATIVES

July 15, 2011



Mr. SMITH of New Jersey (for himself, Mr. WOLF, Mr. HOLDEN, and Mr. GIBSON) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To provide for the establishment of the Tick-Borne Diseases Advisory Committee.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. ESTABLISHMENT OF A TICK-BORNE DISEASES ADVISORY COMMITTEE.

(a) Establishment- Not later than 180 days after the date of the enactment of this Act, the Secretary of Health and Human Services (referred to in this Act as the ‘Secretary’) shall establish within the Office of the Secretary an advisory committee to be known as the Tick-Borne Diseases Advisory Committee (referred to in this section as the ‘Committee’).

(b) Duties- The Committee shall advise the Secretary and the Assistant Secretary for Health regarding the manner in which such officials can--

(1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases;

(2) identify opportunities to coordinate efforts with other Federal agencies and private organizations addressing such diseases;

(3) ensure interagency coordination and communication with constituency groups;

(4) ensure that a broad spectrum of scientific viewpoints is represented in public health policy decisions and that information disseminated to the public and physicians is balanced; and

(5) advise relevant Federal agencies on priorities related to the Lyme and tick-borne diseases.

(c) Membership-

(1) APPOINTED MEMBERS-

(A) IN GENERAL- The Secretary shall appoint the voting members of the Committee from among individuals who are not officers or employees of the Federal Government.

(B) GROUPS- The voting members of the Committee shall include the following:

(i) At least 4 members from the scientific community representing the broad spectrum of viewpoints held within the scientific community related to Lyme and other tick-borne diseases.

(ii) At least 2 representatives of tick-borne disease voluntary organizations.

(iii) At least 2 health care providers, including at least 1 full-time practicing physician, with relevant experience providing care for individuals with a broad range of acute and chronic tick-borne diseases.

(iv) At least 2 patient representatives who are individuals who have been diagnosed with a tick-borne disease or who have had an immediate family member diagnosed with such a disease.

(v) At least 2 representatives of State and local health departments and national organizations that represent State and local health professionals.

(C) DIVERSITY- In appointing members under this paragraph, the Secretary shall ensure that such members, as a group, represent a diversity of scientific perspectives relevant to the duties of the Committee.

(2) EX OFFICIO MEMBERS- The Secretary shall designate, as nonvoting, ex officio members of the Committee, representatives overseeing tick-borne disease activities from each of the following Federal agencies:

(A) The Centers for Disease Control and Prevention.

(B) The National Institutes of Health.

(C) The Agency for Healthcare Research and Quality.

(D) The Food and Drug Administration.

(E) The Office of the Assistant Secretary for Health.

(F) Such additional Federal agencies as the Secretary determines to be appropriate.

(3) CO-CHAIRPERSONS- The Secretary shall designate the Assistant Secretary for Health as the co-chairperson of the Committee. The appointed members of the Committee shall also elect a public co-chairperson. The public co-chairperson shall serve a 2-year term.

(4) TERM OF APPOINTMENT- The term of service for each member of the Committee appointed under paragraph (1) shall be 4 years.

(5) VACANCY- A vacancy in the membership of the Committee shall be filled in the same manner as the original appointment. Any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of that term. Members may serve after the expiration of their terms until their successors have taken office.

(d) Meetings- The Committee shall hold public meetings, except as otherwise determined by the Secretary, after providing notice to the public of such meetings, and shall meet at least twice a year with additional meetings subject to the call of the co-chairpersons. Agenda items with respect to such meetings may be added at the request of the members of the Committee, including the co-chairpersons. Meetings shall be conducted, and records of the proceedings shall be maintained, as required by applicable law and by regulations of the Secretary.

(e) Report- Not later than 1 year after the date of the enactment of this Act, and annually thereafter, the Committee, through the Director of the Centers for Disease Control and Prevention and the Director of the National Institutes of Health, shall submit a report to the Secretary. Each such report shall contain, at a minimum--

(1) a description of the Committee’s functions;

(2) a list of the Committee’s members and their affiliations; and

(3) a summary of the Committee’s activities and recommendations during the previous year, including any significant issues regarding the functioning of the Committee.

(f) Authorization of Appropriations- Of the amounts made available to the Department of Health and Human Services for general departmental management for fiscal years 2012 through 2016, there is authorized to be appropriated $250,000 for each of such fiscal years to carry out this Act. Amounts made available to carry out this Act shall be used for the expenses and per diem costs incurred by the Committee under this section in accordance with the Federal Advisory Committee Act, except that no voting member of the Committee shall be a permanent salaried employee
I won't clutter this thread with my personal comments in case people want to comment on the content of the bill itself.

Rita A

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Wed 27 Jul 2011 2:09
by Camp Other
Rita A said:
"I won't clutter this thread with my personal comments in case people want to comment on the content of the bill itself."
Why not? I'd like to know what you think of these bills, and how they differ from earlier bills presented to state and federal government to aid in Lyme disease awareness.

My issue with them in recent years is that I don't see enough concrete details on specific appropriations and funding for research and surveillance.

I have had more than enough awareness to last for a lifetime and advocates are doing a great job of warning people about Lyme disease, how to catch it, and what symptoms it can cause. I think the state health department, local TV stations, youtube, and newspapers should continue to spread the word and reach many people... They can educate on prevention too and do so without even touching on the controversy if that is not something they are willing to do for whatever reason.

Thirty years of this, and there has been one vaccine taken off the market, ongoing vaccine research using other Osps/ACG and tick saliva - and next to no new antibiotic R & D and little research on patients with persisting symptoms after treatment using the IDSA's guidelines.

There haven't been any new trials in years using other antibiotic (combination, longer duration, etc.) treatments - and there haven't been any trials based on treatments related to the IDSA's autoimmune hypothesis, unless I've missed something. I'd like to see a bill that addresses this issue and secures funding for new trials and more studies.

I'd like to see a bill that sets aside funding for surveillance nationwide and hires more epidemiologists with higher level educations (there have been more surveillance workers in the field with less training over the past several years and less actual surveillance being done; surveillance takes up a very small percentage of the total NIH budget).

I'd also like to see more money going into science education and creation of a web site by a diversely opinionated group of microbiologists, immunologists, and molecular biologists on their own Bb research and what they are discovering and to educate the public and patients on what is known and not known about Lyme disease and other tickborne illnesses (and provide direct citations to their work so those who are more inclined can read it themselves).

There's a lot more I'd like to see, of course, but it all takes money and it isn't clear where it's going to come from... Sometimes I'd like to rewrite the tax codes and reallocate the money myself, but that's not within my power to do (not to mention a monumental headache).

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Wed 27 Jul 2011 2:14
by Camp Other
To wit, if they're going to set aside $250,000 a year to form a committee that does the following:

(1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases;

(2) identify opportunities to coordinate efforts with other Federal agencies and private organizations addressing such diseases;

(3) ensure interagency coordination and communication with constituency groups;

(4) ensure that a broad spectrum of scientific viewpoints is represented in public health policy decisions and that information disseminated to the public and physicians is balanced; and

(5) advise relevant Federal agencies on priorities related to the Lyme and tick-borne diseases.

What exactly does this all mean?

I want specificity. Specific projects.

Frankly, I'd rather see $250,000. per annum be given to my local college microbiology department to do a GFP study on Bb in fibroblasts or some other clearly defined project than create another committee with the above vaguely outlined goals.

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Wed 27 Jul 2011 4:54
by RitaA
CO,

I'll have to return to this. I just spent close to two hours keying in a reply that ended up in cyberspace. :?

The very short version is that I'm not entirely convinced that an advisory committee will guarantee improved "coordination and communication" between existing governmental agencies.

There is, however, a need for someone or something to start coordinating national and international research efforts to ensure the best possible use of limited funds -- a growing problem in most countries.

Rita A

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Thu 28 Jul 2011 7:44
by RitaA
Just a very quick note to mention that I may not be returning to this topic as soon as I hoped. Some family matters (including positive ones like the birth of my grand-niece on Monday) need to take precedence for the next while.

Back soon (I hope),

Rita A

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Fri 29 Jul 2011 22:18
by RoselynF
It does sound like a lot of talk and no action. I know on TV I hear reports of West Nile virus being present in mosquitoes in certain areas and how to protect yourself. But I never hear stories about Lyme disease being present or on the increase in ticks in certain areas. I think building awareness among citizens could help push the government to do more in combating the disease through risk prevention and treatment research.

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Tue 20 Dec 2011 3:34
by RitaA
I'm just posting a related article for those who might be interested in the status of HR-2557:

http://fairfaxnews.com/2011/12/wolf-pus ... e-disease/
Wolf Pushes CDC on Lyme Disease

December 19, 2011 9:37 pm By: Fairfax News

As part of his ongoing effort to address the devastating impact of Lyme disease, Rep. Frank Wolf (R-VA) today announced that the annual spending bill that funds the Centers for Disease Control (CDC) calls for greater focus on the issue.

Wolf said report language accompanying the FY 2012 Labor, Health and Human Services and Education Appropriations bill approved in the House on December 15 and signed into law on December 17 encourages the CDC to:

■ Expand its activities related to developing sensitive and more accurate diagnostic tools and tests for Lyme disease, including the evaluation of emerging diagnostic methods and improving utilization of diagnostic testing to account for the multiple clinical manifestations of acute and chronic Lyme disease;

■ Expand its epidemiological research activities on tick-borne diseases to include an objective to determine the long-term course of illness for Lyme disease and to improve surveillance and reporting of Lyme and other tick-borne diseases in order to produce more accurate data;

■ Evaluate the feasibility of developing a national reporting system in Lyme disease, including laboratory reporting; and

■ Expand prevention of Lyme and tick-borne diseases through increased community-based public education and creating a physician education program that includes the full spectrum of scientific research on the diseases.

Wolf, who pushed for the language in the bill, has long been an advocate for victims of Lyme disease. He has hosted forums in the 10th District to help educate area residents about the dangers of Lyme and how to protect themselves from tick bites. In addition, he encouraged Virginia Governor Bob McDonnell to establish a Lyme disease task force to examine how Virginians can prevent and treat this illness. The panel held public hearings and meetings throughout the Commonwealth and unanimously reported its findings in June.

Earlier this year, Wolf joined with three of his House colleagues in introducing legislation requiring the secretary of Health and Human Services to create an advisory committee charged with advising federal agencies on priorities related to Lyme and tick-borne disease issues. The measure, H.R. 2557, builds on recommendations made by the Institute of Medicine in a report issued in April, and is presently before the House Energy and Commerce Committee.

“Northern Virginia and Loudoun County, in particular, are at the center of a Lyme epidemic,” Wolf said. “I know how devastating this disease can be and will continue to push for a cure and raise awareness to help people from getting it in the first place.”

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Tue 20 Dec 2011 4:49
by Spanky
"RitaA":
Wolf said report language accompanying the FY 2012 Labor, Health and Human Services and Education Appropriations bill approved in the House on December 15 and signed into law on December 17 encourages the CDC to:

■ Expand its activities related to developing sensitive and more accurate diagnostic tools and tests for Lyme disease, including the evaluation of emerging diagnostic methods and improving utilization of diagnostic testing to account for the multiple clinical manifestations of acute and chronic Lyme disease;

■ Expand its epidemiological research activities on tick-borne diseases to include an objective to determine the long-term course of illness for Lyme disease and to improve surveillance and reporting of Lyme and other tick-borne diseases in order to produce more accurate data;

■ Evaluate the feasibility of developing a national reporting system in Lyme disease, including laboratory reporting; and

■ Expand prevention of Lyme and tick-borne diseases through increased community-based public education and creating a physician education program that includes the full spectrum of scientific research on the diseases.


Generally speaking, language in an appropriations bill is merely advisory, is non-binding and does not have the force of law.
Significantly, report language and managers' statements do not have statutory force,
departments and agencies are not legally bound by their declarations. These documents
do, however, explain congressional intent, and executive branch agencies take them
seriously because they must justify their budget requests annually to the Appropriations
Committees.
http://digital.library.unt.edu/ark:/675 ... 5Jan12.pdf

In other words, nice press for Wolf, but not a lot of substance, there.

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Tue 20 Dec 2011 5:10
by RitaA
Spanky,

You wrote:
In other words, nice press for Wolf, but not a lot of substance, there.
That was my impression as well, but I wasn't aware that the language in an appropriations bill was merely advisory. Thanks for clarifying that part. :)

RitaA

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Tue 20 Dec 2011 14:12
by Henry
Legislation like this is redundant and a waste of money. Bills like this are proposed almost yearly -- and championed by the same Lyme disease activists groups-- who condemn the research results obtained by established experts on Lyme disease because they conflict with their erroneous ideas. How often does one have to waste time and spend more money to form a new advisory committee that no doubt will make the same recommendations that will not accepted by these "know-nothings" ?