H.R. 741

[LymeEnigma]

Certain groups have been trying to get this beyond the status of "introduced" for some time now, encouraging armchair activists to contact their state and federal officials regarding co-sponsoring and bringing "H.R. 741" to the next level.

The brainwashed are up in arms right now, as the IDSA recently sent a letter to the Senate strongly opposing the bill. They're turning this into another "evil IDSA is doing this to hurt chronic Lymies" issue, when there is no way the bill would ever get passed, anyway.

The real reason it will not move on: it is poorly drafted, leaving way too much room for subjective interpretation.

The following is a copy of the text. I have taken the liberty of putting emphasis on all problematic text:

HR 741 IH

110th CONGRESS

1st Session

H. R. 741

To provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.

IN THE HOUSE OF REPRESENTATIVES

January 31, 2007

Mr. SMITH of New Jersey (for himself, Mr. STUPAK, Mr. HOLDEN, Mr. GILCHREST, Mr. SHAYS, Mrs. LOWEY, Ms. DELAURO, Ms. BEAN, Mr. LANGEVIN, Mr. BAIRD, Mr. KIRK, Mr. ACKERMAN, Mr. GRIJALVA, and Mr. MCHUGH) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a 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. SHORT TITLE.

This Act may be cited as the `Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007'.

SEC. 2. FINDINGS.

Congress makes the following findings:

(1) Lyme disease is a common but frequently misunderstood illness that, if not caught early and treated properly, can cause serious health problems.

(2) Lyme disease is a bacterial infection that is transmitted by a tick bite. Early signs of infection may include a rash and flu-like symptoms such as fever, muscle aches, headaches, and fatigue.

(3) Although Lyme disease can be treated with antibiotics if caught early, the disease often goes undetected because it mimics other illnesses or may be misdiagnosed. Untreated, Lyme disease can lead to severe heart, neurological, eye, and joint problems because the bacteria can affect many different organs and organ systems.

(4) If an individual with Lyme disease does not receive treatment, such individual can develop severe heart, neurological, eye, and joint problems.

(5) Although Lyme disease accounts for 90 percent of all vector-borne infections in the United States, the ticks that spread Lyme disease also spread other diseases, such as ehrlichiosis, babesiosis, and other strains of Borrelia. All of these diseases in 1 patient makes diagnosis and treatment more difficult.

(6) Studies indicate that the actual number of tick-borne disease cases are approximately 10 times the amount reported.

(7) Persistence of symptomatology in many patients without reliable testing makes treatment of patients more difficult.

SEC. 3. 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 are 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- From among individuals who are not officers or employees of the Federal Government, the Secretary shall appoint to the Committee, as voting members, an equal number of individuals from each of the groups described in clauses (i) through (v) of subparagraph (B).

(B) GROUPS- The groups described in this subparagraph include the following:

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

(ii) Representatives of tick-borne disease voluntary organizations.

(iii) 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) 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) 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 of 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) Authorization of Appropriations- For the purpose of carrying out this section, there is authorized to be appropriated $250,000 for each of the fiscal years 2008 through 2011. Amounts appropriated under the preceding sentence 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.

SEC. 4. FEDERAL ACTIVITIES RELATED TO THE DIAGNOSIS, SURVEILLANCE, PREVENTION, AND RESEARCH OF LYME AND OTHER TICK-BORNE DISEASES.

(a) In General- The Secretary, acting as appropriate through the Director of the Centers for Disease Control and Prevention, the Director of the National Institutes of Health, the Commissioner of Food and Drugs, and the Director of the Agency for Healthcare Research and Quality, as well as additional Federal agencies as the Secretary determines to be appropriate, and in consultation with the Tick-Borne Diseases Advisory Committee, shall provide for the coordination of all Federal programs and activities related to Lyme and other tick-borne diseases, including the activities described in paragraphs (1) through (4) of subsection (b).

(b) Activities- The activities described in this subsection are the following:

(1) DEVELOPMENT OF DIAGNOSTIC TESTS- Such activities include--

(A) the development of sensitive and more accurate diagnostic tools and tests, including a direct detection test for Lyme disease capable of distinguishing active infection from past infection;

(B) improving the efficient utilization of diagnostic testing currently available to account for the multiple clinical manifestations of both acute and chronic Lyme disease; and

(C) providing for the timely evaluation of promising emerging diagnostic methods.

(2) SURVEILLANCE AND REPORTING- Such activities include surveillance and reporting of Lyme and other tick-borne diseases--

(A) to accurately determine the prevalence of Lyme and other tick-borne disease;

(B) to evaluate the feasibility of developing a reporting system for the collection of data on physician-diagnosed cases of Lyme disease that do not meet the surveillance criteria of the Centers for Disease Control and Prevention in order to more accurately gauge disease incidence; and

(C) to evaluate the feasibility of creating a national uniform reporting system including required reporting by laboratories in each State.

(3) PREVENTION- Such activities include--

(A) the provision and promotion of access to a comprehensive, up-to-date clearinghouse of peer-reviewed information on Lyme and other tick-borne disease;

(B) increased public education related to Lyme and other tick-borne diseases through the expansion of the Community Based Education Programs of the Centers for Disease Control and Prevention to include expansion of information access points to the public;

(C) the creation of a physician education program that includes the full spectrum of scientific research related to Lyme and other tick-borne diseases; and

(D) the sponsoring of scientific conferences on Lyme and other tick-borne diseases, including reporting and consideration of the full spectrum of clinically-based knowledge, with the first of such conferences to be held not later than 24 months after the date of enactment of this Act.

(4) CLINICAL OUTCOMES RESEARCH- Such activities include--

(A) the establishment of epidemiological research objectives to determine the long term course of illness for Lyme disease; and

(B) determination of the effectiveness of different treatment modalities by establishing treatment outcome objectives.

(c) Authorization of Appropriations- For the purposes of carrying out this section, and for the purposes of providing for additional research, prevention, and educational activities for Lyme and other tick-borne diseases, there is authorized to be appropriated $20,000,000 for each of the fiscal years 2008 through 2012. Such authorization is in addition to any other authorization of appropriations available for such purpose.

SEC. 5. REPORTS ON LYME AND OTHER TICK-BORNE DISEASES.

(a) In General- Not later than 18 months after the date of enactment of this Act, and annually thereafter, the Secretary shall submit to Congress a report on the activities carried out under this Act.

(b) Content- Reports under subsection (a) shall contain--

(1) significant activities or developments related to the surveillance, diagnosis, treatment, education, or prevention of Lyme or other tick-borne diseases, including suggestions for further research and education;

(2) a scientifically qualified assessment of Lyme and other tick-borne diseases, including both acute and chronic instances, related to the broad spectrum of empirical evidence of treating physicians, as well as published peer reviewed data, that shall include recommendations for addressing research gaps in diagnosis and treatment of Lyme and other tick-borne diseases and an evaluation of treatment guidelines and their utilization;

(3) progress in the development of accurate diagnostic tools that are more useful in the clinical setting for both acute and chronic disease; and

(4) the promotion of public awareness and physician education initiatives to improve the knowledge of health care providers and the public regarding clinical and surveillance practices for Lyme disease and other tick-borne diseases.
_______________________________________________________

"Studies indicate that the actual number of tick-borne disease cases are approximately 10 times the amount reported."

"Studies indicate" is not wording one puts into law.

"ensure that a broad spectrum of scientific viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced"

The vagueness of the above wording could allow one to import the idea that "balanced" includes "Applied Kinesiology" and other questionable practices falls under this "spectrum." Not good.

(1) APPOINTED MEMBERS-

(A) IN GENERAL- From among individuals who are not officers or employees of the Federal Government, the Secretary shall appoint to the Committee, as voting members, an equal number of individuals from each of the groups described in clauses (i) through (v) of subparagraph (B).

(B) GROUPS- The groups described in this subparagraph include the following:

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

(ii) Representatives of tick-borne disease voluntary organizations.

(iii) 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) 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.

The above would put LymeNuts like You Know Who on a government advisory board....

I don't think people are actually reading this bill before seeking government backing on it....

[hakutsuru]

To understand a critical problem with this bill think of the following problem:

A school board needs to decide on a history curriculum. If they are forced to take into consideration a broad spectrum of historical viewpoints then they must equally consider the view that the Holocaust never happened. Moreover the board must include input from those who have no expertise in history. It would make more sense to consider the prevailing view among historians, not ignoring the controversy surround the denial of the Holocaust but rather putting it in its correct context. Likewise, when determining public policy regarding Lyme we need to consider the prevailing view among the experts in the field. Points of controversy should be considered in the appropriate context. All views on Lyme should not be treated equally.

[LymeEnigma]

If one actually read the opposition letter sent off by the IDSA (without wearing his/her Lyme-colored glasses), one would see that the IDSA is not opposed to legislation and funding for Lyme prevention and research; it is opposed to the particular way the LDA wants to approach it.

The IDSA's letter:

www.idsociety.org/WorkArea/showcontent.aspx?id=10818

[LymeEnigma]

Topic: WEEKEND UPDATE- CONGRESS
Tincup
Frequent Contributor
Member # 5829

posted 18 April, 2008 09:50 PM

WOO HOO!! This just came in! Go LDA, GO!



Update on the Urgent Lyme Bill Alert and new info from DC

Dear Lyme Community,

Your support has been overwhelming.

You are taking the time to contact Washington and letting them know you are out there, and you will be heard.

Believe me, if they did not know before, they know now.

We have heard that 200-300 calls/hour were coming in & one office received over 2,000 calls by late Fri. afternoon.

What is DC’s response?

I was contacted today by the Energy & Commerce Committee Office and told we have incorrect information on our Urgent flyer, and we need to stop the calls, because it is unfair to committee chairs and E&C─their phone lines are tied up.

I told him if he wanted to know what unfair was, I would tell him.

I did.

I told him about IDSA preventing you from getting a diagnosis with its guidelines,

I told him about your inability to get treatment,

about children being removed form families for the crime of having them treated for Lyme by a licensed physician.

I told him the stranglehold IDSA has on this disease and how they promulgate only the science they have accepted as real and how Congress was choosing to listen to IDSA’s voice and not yours.

I said, this is America, a place where diverse views can be expressed everywhere on anything, but not on Lyme disease.

I told him how every other major disease has a patient voice in the process, Lyme does not.

I told them Lyme patients are not “uneducated” as some have attempted to portray them.

They are very smart and include people from all walks of life including professionals.

They know their disease, and they are tired of IDSA telling them they are not improving with antibiotic treatment when they know they are.

They know IDSA is trying to take away the only opportunity they have for a voice in their fight to regain control of their lives by defeating this disease.

I said these people do not need me to draw the lines for them and connect the dots.

I told them patients have lost their patience.

They sat by and waited while Congress said war was a priority, while Congress said West Nile was priority,

while Congress said the economy was priority, and “Martian Fever in Timbuktu” was a priority.

They’ve waited 10 years to have their bill heard.

They do not want to wait any more.

And like AIDS was many years ago, Lyme is now─patients are increasing in numbers, yet have few doctors willing to run the political risk of treating them.

Global warming is increasing Lyme disease cases.

People are becoming afraid to venture outdoors in many areas.

And CDC case numbers are only the tip of the iceberg.

If he were content to listen to CDC numbers, he would be sadly misinformed.

Numbers of tick-borne disease cases far surpass that.

Patients were not going away, in fact, their numbers are rising.

Public health is not doing its job concerning Lyme disease, and I said that is why I remain involved, I could not turn my back on these patients.

On the call, I was given no indication or hint of any kind that anything would be done with the bill at all.

When I asked what information on the flyer on our website was incorrect, I was told the part about “Energy & Commerce is making up a list of the only health bills to be heard NOW.”

He said that is incorrect.

I told him we were told that by someone at the office there. He said that is not true (LDA stands by its source) and that we are not helping the cause by making these phone calls.

When I asked what would help the cause, I got no answer.

He said they got the message.

I disagreed.

If they got the message, I said, they would have the bill scheduled, since we are almost a year and a half into the session and you have nothing on your Health Subcommittee agenda.

No hints or assurances that anything could or would be done were given.

Again he said I should tell patients to stop the calls.

I said I could not do that, patients have heard all over the Hill that E&C refuses to schedule a hearing due to IDSA pressure.

He never responded to that nor made any reference to that as being incorrect on our flyer (Flyer says “IDSA is dictating public policy and your health. Because of its interference, we cannot get a hearing on the Lyme bill.”)

We had a lengthy discussion.

He said my comments would be relayed back, and I said I would tell everyone what he said about the information on the flyer being incorrect and that I would also say we heard differently, but that I would not tell patients they had to stop calling.

They want action and have been patient for the 10 years bills have been in Congress, and I have no right to tell them they should stop calling because some offices were inconvenienced.

Try living with Lyme for 20 years or caring for a family member with the disease.

Bottom line, for me, a healthy person in the fight for 20 years, I would not tell patients something I did not feel was justified, nor would I desert or mislead Lyme patients fighting for their rights and their lives.


Pat Smith, LDA President

--------------------
If you get the choice to sit it out or dance...

-

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Help stomp the IDSA- right away!

tinyurl.com/5tnzky
Posts: 5967 | From: The Moon | Registered: Jun 2004 | IP: Logged
flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=8;t=001087
___________________________________________________________

LE comment: NOW, not only do government officials in every state find us nutty, hysterical, and dogmatic ... they also find us annoying and ill-informed....

As usual, way to go in furthering the Lyme hysteria hysteria, LDA....

Cluck, cluck, cluck....

[LymeEnigma]

But, of course, they plan on doing even more damage:
flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=8;t=001088

Good God, people....

[LymeEnigma]

So, I remembered to mention it at LNE, so I thought I'd put it here, too: did anyone catch the "Although Lyme disease accounts for 90 percent of all vector-borne infections in the United States, the ticks that spread Lyme disease also spread other diseases, such as ehrlichiosis, babesiosis, and other strains of Borrelia" train wreck-waiting-to-be?

If 90% of all tick-borne illnesses are caused by Lyme, then only 10% of patients can possibly be co-infected....

The bill is crap, crap, CRAP!!!

*edited to add:

Oh ... it's even worse....

We're not talking only tick-borne illnesses ... we're talking all vector-borne illnesses. I bet that would make the babesia, erlichiosis, bartonella pool look EVEN SMALLER....

Do we really want mainstream doctors to have written law to back their stance that the above co-infections are rarer than gold in a 21st century California river...?

[LymeEnigma]

I know there is not much I can say to dissuade those set on protesting the government's refusal to reconsider the above bill ... but I must reiterate: it is worse to pass a poorly written bill than it is to pass a bill that may help in some areas, but will potentially cause just as much harm. Once the bill is voted in, it cannot be altered, and we are stuck with whatever sloppy wording is there.

The bill must be rewritten. It is dangerous to all of us as it stands. Please, please, please pick your battles wisely....

[cobweb2]

LE-I'm afraid all this information only confuses me.

I saw this in the post by TC-in a nutshell-
"REMEMBER: HR 741 THE LYME & TICK-BORNE DISEASES BILL

Provides money, focus and an advisory committee on Lyme & tick-borne diseases. A hearing on the bill enables scientists & doctors to educate Congress about Lyme issues."

Are you saying the money provided would go to the wrong hands and the advisory committee would be biased(towards diminishing the impact of Lyme disease)?

Wish I could fully understand all this.

[LymeEnigma]

The funding and all that would be great ... what is wrong with the bill is the potential for misuse of those funds, given the wording of the text. We could use $20 million devoted to research and information dissemination ... but this bill also would create a number of vague government seats, not to mention putting the above noted problematic text into law.

We need a good Lyme bill ... a well-written one that no one, IDSA or ILADS alike, might potentially be able to abuse in the future. H.R. 741 is NOT that bill....

[LymeEnigma]

I have coined a new term: "martyr makers."

It is my humble opinion that H.R. 741, and proposed bills like them, are martyr makers. Written so poorly that no House in their right mind would pass them, martyr makers are tools which hysteria peddlers might use to continue to wag the dog and keep their lackeys angry, ready for a fight.

Martyr makers might allow for dialog such as "the politicians are against us," and the good old stand-by, "the evil IDSA is somehow behind this, as well," calling for unity, blind faith, and extraneous calls to action within our unorganized and neurotic "community."

Cluck, cluck, cluck....

[LymeEnigma]

Time is ticking away for Lyme bill to be heard
Those affected by the disease angered over congressman's inaction
BY JENNIFER AMATO Staff Writer

"Every year we have more and more [patients] and we have less physicians [willing to treat them]," said Smith, who has had the disease for 22 years.

Full article: hub.gmnews.com/news/2008/0619/Front_page/018.html

Now it's Smith, herself, who has had Lyme for over twenty years, and not her two daughters (who no one ever hears about)? Which one is it, Pat?