Sadly, another federal bill has been introduced by Congressman Gibson of NY that has the ability to tie the hands of patients and treating doctors, deny needed medical treatment, open doctors up for more prosecution by medical boards and solidify the IDSA guidelines as the guidelines of record nationwide.
To make matters worse, this federal Lyme bill was just tossed in with a huge dumpster of a bill (21st Century Cures) that in itself should be of great concern to patients everywhere, those with Lyme and those with other illnesses. Containing over 3oo pages it basically puts the CDC, NIH, IDSA and its allies in charge of medical guidelines, both their development and distribution- something we have fought for a couple of decades. It is a sad and dangerous bill, however, few are bothering to read the 300 plus pages to understand its dire consequences.
UPDATE- June 2015- A companion bill to Congressman Gibson's bill- with different wording- has just been introduced in the Senate by Senator Blumenthal*. Bill text- click here. Scroll down to see breakdown of the Senate bill. It is riddled with problems.
*Joining Blumenthal and Senator Kelly Ayotte (R-NH) as co-sponsors are U.S. Senators Charles E. Schumer (D-N.Y.), Kirsten Gillibrand (D-N.Y.), Christopher Coons (D-Del.), Jack Reed (D-R.I.), Sheldon Whitehouse (D-R.I.), Amy Klobuchar (D-Minn.), and Bob Casey (D-Penn.).
HOUSE BILL INFORMATION
UPDATE- July 2015. Seems no one bothered to tell you about this assault on women's rights, but I think you should know. By passing the House Lyme bill- that was stuffed in with the garbage can Cures 21st Century Act (HR 6)- those who supported it, and those who voted for it just delivered a blow to a women's right to choose.
Congresswomen Barbara Lee from California introduced an amendment to try to correct that situation, but the wording stayed in the bill and it was passed.
Read more about the Hyde Amendment and Lee Amendment here and perhaps next time before you decide to support a Lyme bill you will pay more attention- even read the bill yourself- and hopefully think about the problems that could be damaging to others. Some of our legislators are sneaky and they have been known to lie. By just seeing the supporters of this bill, the same ones who have been fighting us for years, you might figure if they suddenly supported a Lyme bill- there must be something wrong with it. There is a lot wrong with it. https://sites.google.com/site/lymelegislation/cures-21st-century/hyde-amendment--womens-right-to-choose
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See how your representative in the House voted
Regarding the Lyme bill, people are missing the elephant in the room...
If the IDSA, CDC, NIH and the same legislators who have worked for decades fighting us to the death (often literally) are suddenly allowing Gibson`s bill to go thru the Committee and House Floor without objections, HINT HINT, there is something wrong with the bill.
Oops! Big Oops! There is no designation in this bill to distinguish between voting and non-voting members, as was in previous bills introduced by Congressman Smith over the years. This distinction is extremely important and absolutely necessary to keep the Lyme community representatives on the Committee from being out voted on every issue that arises.
Example...
The way the bill reads, the CDC, NIH, FDA, Health Departments, IDSA doctors and IDSA friendly researchers will have ten to twelve of the seats at the Committee table. The Lyme community, if we are very lucky, will be given two to four seats for people to represent us.
Let`s say a motion is brought up, such as making the IDSA guidelines mandatory across the country because they are science based medicine, blah, blah, blah, which is the CDC`s and IDSA`s ultimate goal.
A big fight ensues, everyone scrambles and then a vote is called.
Our best representatives on their best days, even with the whole world watching and the power of the Attorney General behind them, and loads of science on their side, have not been able to make the IDSA open its mind, see the light or change its ways.
If they had been able to change policy, or even make a dent in it, we would`t be in this pickle right now and facing what are sure to be even worse and more restrictive medical guidelines than we`ve seen in the past.
If the new Committee members representing us manage to sway some of the government members to our side, for the first time in THREE decades, it still wouldn't allow our side to prevail when it comes time to take a vote.
This is why we need to have a distinction between nonvoting federal members and nonfederal voting members.
The worst part is once it comes to voting without the distinction in the bill, we are done. And we can't unwet our pants.
Wording is critical...
Although the bill mentions chronic Lyme in another section it is not used in the description of the Committee members listed below.
Although the bill mentions the government should be fair, when have we ever seen that happen with Lyme disease issues.
Missing the word chronic in the description makes a big difference and changes the entire meaning and intent.
Bill wording... My Comments are in RED Caps...
The Committee shall have...
FEDERAL MEMBERS- Seven Federal members, consisting of one or more representatives of each of--
`(i) the Office of the Assistant Secretary for Health;
`(ii) the Food and Drug Administration;
`(iii) the Centers for Disease Control and Prevention;
`(iv) the National Institutes of Health; and
`(v) such other agencies and offices of the Department of Health
and Human Services as the Secretary determines appropriate.
`(B) NON-FEDERAL PUBLIC MEMBERS- Seven non-Federal public members, consisting of representatives of the following categories:
`(i) Physicians and other medical providers with experience in diagnosing and treating Lyme disease and other tick-borne diseases.
THIS ALLOWS IDSA GUIDELINE AUTHORS OR IDSA MEMBERS TO FILL THESE SEATS, IT IS MISSING THE WORD CHRONIC
`(ii) Scientists or researchers with expertise.
AGAIN, THIS ALLOWS IDSA GUIDELINE AUTHORS & FRIENDS TO FILL THESE SEATS, MISSING THE WORDS LYME & CHRONIC
`(iii) Patients and their family members.
WITH LYME OR NOT... CURED IN 3 WEEKS OR NOT... MISSING THE WORDS LYME & CHRONIC
`(iv) Nonprofit organizations that advocate for patients with respect to Lyme disease and other tick-borne diseases.
MISSING THE WORD CHRONIC... WE CAN BE STUCK WITH IDSA AFFILIATES, LIKE THE WICKED ALDF
`(v) Other individuals whose expertise is determined by the
Secretary to be beneficial to the functioning of the Working Group.
WILL BE FILLED WITH IDSA MINDED MEMBERS
We have seen it happen before... another trick. Line number ~~ v.~~ (5) in Gibson`s bill, under federal and non-federal members, is where the IDSA & CDC will load up the Committee with their comrades and the Lyme community will not be allowed to add members because they must first be approved by the HHS, the same ones we are fighting. The members on the IDSA side will wiggle and giggle their way through this, as they have done before.
You saw who the IDSA picked for a patient representative on its new guidelines committee. It was someone who never had Lyme disease and didn't know anyone with Lyme. Do you think IDSA & CDC will suddenly start playing fair now?
Another Elephant...
Bill Wording-- `Not later than 3 years after the date of enactment of this section, and every 5 years thereafter, the Secretary shall submit to the Congress a strategic plan, informed by the most recent summary under section 399OO-1(b)(1), for the conduct and support of Lyme disease and tick-borne disease research, including--
`(5) a plan to disseminate each summary under section 399OO-1(b)(1) and other relevant information developed by the Working Group to the public, including health care providers, public health departments, and other relevant medical groups.'.
In other words, the IDSA Lyme Disease Guidelines or its updated equilivant will be sent to medical groups, doctors, health departments, etc. nationwide by way of this bill, officially sanctioning them as THE guidelines and THE position. Oh say can you see the insurance companies and medical boards now? They are dancing in the streets!
The five year designation in the bill for disseminating the updated summary is exactly the same period of time the IDSA has to update its guidelines to keep them on the national Guideline Clearing House anyway. Just like they wrongly used the public review of their old guidelines as their update to extend their miserable 2oo6 guidelines for another 5 years, this is a win, win for them.
The wording above is similar to the wording the IDSA had in an education bill in Maryland by way of a legislator pretending to be on our side, but who was influenced by the IDSA, Hopkins and the Maryland DHMH, who she now, by the way, works for. When she was told of the problem with the wording, she agreed to have it changed, and was lying to us the entire time.
After all that work we had to kill the bill to protect our doctors, give patients a choice of treatment options, and prevent the IDSA guidelines from becoming the law of the land.
It is an old trick we can't afford to fall for!
Another missing item...
If the bill is passed and the Committee is filled with people as specified, we will need a way out and as far as I know it is still illegal to shoot people. All the complaining and begging in the world won't help us after the bill is passed, and wasting time trying to fix it allows bad things to happen in the meantime.
Don't be fooled. The last thing legislators want to do is change their own bill. It admits they made a mistake. They and those who support it will make promises to us to change it or address it later, promise to stick with us no matter what and not let anything bad happen, give us the impression they can control a bill once it leaves their hands, but they lie. We`ve seen it happen repeatedly.
MISSING... There is no sunset provision or clause. A sunset clause provides that the law shall cease to have effect after a certain date unless further legislative action is taken to extend it.
Currently the bill has no clause or end date, and no matter how bad or good it is, it will continue on and on till the end of eternity.
A sunset clause won't undo the damage that can be done with just one report from this totally unbalanced Committee. But, it would allow the Lyme community to pick themselves up once again and start over from scratch at some point years down the road, after another couple of million people have become infected.
Conclusion...
These are critical oversights, making this a very dangerous bill. Gibson, his staff and the bill supporters missed them, or did not think through the consequences, or they knew about them and are not sharing that information with you.
A handful of Lyme groups should not be pushing politicians to pass dangerous federal bills or any bills for that matter, and should not continue to play politics with our lives hanging in the balance when it is done is such a sloppy and haphazard manner. Their last bill was passed with the NY Governors signature on it, let`s all rah rah rah, but it was missing an entire section of the wording, too be announced later.
That missing wording, we were assured, would be good for us. No problem. It will be ok we were told, just trust us and trust the politicians, they love us, they care about us. Hooey.
It was not good for us. And the promoters are not addressing these problems for they have already had their day of glory.
In fact, why are the previous Lyme related bills NOT being followed up on? What happened to all the money and things that were going to be done to make things better for all of us? Take a look at the Appropriations Bill and ask yourselves, do we really need another bill? Are we actually benefitting from them?
This move to let the Governor sign a bill into law without all the wording in place was the same as handing someone a blank check with your signature on it. YOU DON`T DO THAT!!! But they did. If they can't even use common sense, get them out of the arena!
The fact that those trying to push this new federal bill had not planned to fix the problems within and did not plan to tell you about them, in my opinion, is not only totally wrong, misleading and dangerous, it is disgusting. You deserve better.
Unless you want the IDSA guidelines to be THE standard of care guidelines across the country, don`t push this bill.
And if my explanation doesn't convince you, look behind the curtain and you will see the insurance company executives drooling with anticipation.
Lucy Barnes
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Some of the items/wording included in this new Senate version- not found in any other Lyme related bill versions, and/or are of concern include the following (my notes in purple and bracketed):
spirochaetes [spelling]
...because the bacteria can affect many different organs and organ systems. [Not worded as a Congressional bill would/should be worded.]
(E) exploring the utility and potential for the development of a safe and effective vaccine against Lyme disease and other tick-borne diseases. [So we are now encouraging more failed vaccine research, clinical trials and its promotion which has already cost us billions of dollars and years of wasted time, not to mention the physical and mental harm it caused the victims before it was pulled off the market? Do the bill writers not know this? And, as research stalls who will be in there filing for more patents? Plus, this bill wording puts the carriage in front of the horse. Are we really suppose to agree to MORE vaccine research that is based on Lyme tests that remain unreliable and inaccurate? How can you produce a good vaccine under those circumstances? And we are to leave all this in the hands of those who took charge of this money-maker activity in the past and failed miserably? Why not just give them a nice Christmas basket instead and let it be? Can anyone guess how many decades they have been researching and trying to develop a vaccine for Rocky Mountain Spotted Fever? And how many millions were spent on that already and continue to be wasted?]
If an individual with Lyme disease does not receive treatment, such individual can develop severe heart, neurological, and joint problems. [They can also develop those problems if treated- needs to be removed, or clarified.]
(iii) a detailed statement of the costs to the Federal Government, including—
(I) the cost of any food or bev- erages;
(II) the cost of any audio-visual services;
(III) the cost of employee or contractor travel to and from the conference; and
(IV) a discussion of the methodology used to determine which costs relate to the conference; and... [It appears we have people mixed up in this bill who are planning to be involved with and/or on the Committee already- and who want to be sure in advance their expenses are paid. Never had this wording in any of the Lyme-related bills in the past. We were more concerned with getting patients help.]
(iv) a description of the contracting procedures used in coordinating the con- ference, including—
(I) whether contracts were awarded on a competitive basis; and
(II) a discussion of any cost com- parison conducted by the depart- mental component or office in evalu- ating potential contractors for the conference. [Totally not needed.]
Congress makes the following findings:
...the ticks that spread Lyme disease also spread other diseases, such as anaplasmosis and babesiosis, and carry other strains of Borrelia burgdorferi. [Did they forget ehrlichiosis, bartonella, Q-fever, RMSF, tularemia, additional spotted fevers-rickettsia, parasites and other known and unknown organisms that are still being identified? Any why just one type of tick mentioned? Just because the IDSA/CDC ignores research doesn't mean Congress must play along. Use a "B" for Babesiosis, not a "b"- named after a person.]
Other tick species, such as the aggressive lone star tick, spread ehrlichiosis, Rocky Mountain spotted fever, and southern tick-associated rash illness (STARI). [Not worded as a bill would/should be worded. Copied from the CDC website? See comments above.]
Multiple diseases in 1 patient make diagnosis and treatment more difficult. [One (1). Add the word "can" make diagnosis...]
According to the Centers for Disease Control and Prevention, from 1992 to 2006, the incidence of Lyme disease was highest among children 5 to 14 years of age. [Data extracted from information approximately 10 to 25 years old. Need more recent numbers, which are available.]
Persistence of symptomatology in many patients without reliable testing makes diagnosis and treatment of patients more difficult. [Doesn't make sense.]
In the absence of a safe and effective human vaccine, reducing exposure to ticks is the best defense against Lyme disease, Rocky Mountain spotted fever, and other tick-borne diseases. [STOP encouraging and mentioning a previously failed money pit that can and has harmed many people- Lyme vaccine- and focus on a cure. Bills are being passed in many states to make vaccines mandatory for adults and children, with the CDC and its allies deciding who must get what- opening a new market and profit for the Lyme vaccine. What about sexual transmission?]
Entomology-based approaches to prevent tick-borne diseases include the use and development of insect repellent, prompt tick removal, application of pesticides, and reduction of tick habitat. [Do we really want to give the federal agencies we have been fighting an open door to have their buddies sucking down even more research money and developing new insect repellents? They've had 30 years to do it and failed miserably- let's move on. And how do we reduce "tick habitat"? Concrete anyone?]
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...advise the Secretary and the Assistant Secretary for Health regarding the manner in which such officials can— [Did it occur to anyone that there is no Assistant Secretary of Health? What if a really bad one is appointed? And why add more federal agencies to this mix? That office oversees the Vaccine programs- opening more bad doors. The current "acting" assistant is also in charge of the technical operations- computer based programs, etc.- that collects your personal medical data, amongst other duties. Just saying that may not be an optimal situation for us, or in an attempt to protect our doctors.]
(A) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases; [Both "A" and "C" have the same statement.]
(C) ensure interagency coordination and communication with constituency groups; [Both "A" and "C" have the same statement.]
(D) ensure that a broad spectrum of scientific viewpoints are considered in public health policy decisions and that information disseminated to the public and physicians is based on the best available science and is appropriately balanced; and [First, not "considered". This needs stronger and more definitive language. Second, if information is disseminated by the CDC and other agencies- based on the "best available science"- it becomes the law of the land. Remember- the IDSA/AAN/ACR new guidelines will be published right in time to be sent to all doctors. Bye-bye doctors trying to treat Lyme disease outside the "official" guidelines of the nation. That one statement is THE perfect one the IDSA/CDC wants in the law- so they can send out IDSA guidelines and say the law made them do it, and keeping them in charge of Lyme related everything. This is an old trick that should have been noted in the drafting of the bill, but it was missed.]
(2) in coordination with relevant agencies within the Department of Health and Human Services, regularly review published public and private treatment guidelines and evaluate such guidelines for effective representation of a wide diversity of views. [So our piddling few reps are going to sit with highly educated and credentialed reps from all the federal agencies with an outcome of what? The IDSA won't change their guidelines based on anything negative this Committee would say. And the CDC and Secretary of Health won't support our few reps going up against their own leaders. Anyone thinking otherwise might want to look back on the other attempts being made on our behalf that all failed to make changes.]
(i) Not fewer than 4 members from the scientific community representing the broad spectrum of viewpoints held within the scientific community related to Lyme disease and other tick-borne diseases, including experts in the areas of—
(I) medicine, epidemiology, and public health; [How many on our side can fit in this category and will volunteer to do this? Yet there are many who don't have our best interests at heart that would.]
(II) veterinary medicine and animal health; [We already have vets in charge of human health in the state and local health departments- and how is that working for us? Right, not good! Get rid of this category.]
(III) entomology and pest management; and [As with A & B above, these people can submit reports, and will be represented on the federal agencies side already. They don't need to be on the Committee representing our side and taking what few positions we may have. They don't advance our primary agenda, which is totally missed in this bill- having access to treatment and finding a cure.]
(IV) microbiology. [See note above.]
(ii) Not fewer than 2 representatives of tick-borne disease voluntary advocacy organizations, which may include 1 representative of a patient-supported tick- borne disease advocacy organization. [HUH? First, what is the difference? This again appears as if someone is trying to make the language fit themselves so they can get a seat at the table, to the exclusion of others. It doesn't become them at all. Second, HUH? Let's try making some sense here.]
(iii) Not fewer than 2 health care providers, including not fewer than 1 physi- cian involved in direct patient care, with relevant experience providing care for individuals with a broad range of acute and chronic Lyme disease and other tick-borne diseases. [Hello Dr. Wormser- glad you are here on this federal Committee to represent all the patients who have been denied treatment based on your worn out theories and mean tactics. In fact, I'd thought you'd be too busy sucking down our research funds and trying to turn a profit to take part in this project. And who is that you have tagging along? Oh, Dr. Auwaerter from Johns Hopkins, and Dr. Dattwyler, and is that Dr. Bumsteere too? Well, we certainly are depending on you all to do us right for us. Need I say more?]
(iv) Not fewer than 2 patient representatives who are individuals who have been diagnosed with Lyme disease or another tick-borne disease or who have had an immediate family member diagnosed with such a disease. [Hello Joe. So you took 2 weeks of antibiotics for Lyme disease and you were cured! Wow! And who is that with you? Oh, it's Susan. Are you over that mild case of Ehrlichiosis already? Wonderful! Oh, so you are friends of Mr. Jump-out-of-the-NIH's-bed and-into-the IDSA-bed-Baker, the one with the American Lyme Disease Foundation? How is that old snake doing? He hasn't tried censoring our Lyme documentary or kicking our butts in journals much lately. So how is his massive collection of horrible articles doing? Safe and sound I hope? Need I say more?]
(v) Not fewer than 2 representatives of State and local health departments and national organizations that represent State and local health professionals who investigate or treat patients with Lyme disease or other tick-borne diseases. [This just gets worse as we go along. Wording and grammar extremely bad. There are already a bucket load of these people representing the other side, so what need do we have for them? We don't. Who "treats" patients- doctors or health departments? Are there any "State and local health departments" that are also "national organizations"? Do "national organizations" actually "treat" patients?]
(B) 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. [How can Lyme patients off the street- IF we were to get them- and/or members of Lyme organizations- IF we were to get them- "represent a diversity of scientific perspectives"? Most are not scientists. Get rid of the word "scientific".]
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(C) The Agency for Healthcare Research and Quality. [This is suppose to be a good thing? It isn't. Why are they listed? Their main goal is dealing with "evidence-based guidelines", exactly what we've been fighting for 20 years, and saving money. There goes the research funding, our treatment options and our doctors- and our lives.
"Evidence-based research provides the basis for sound clinical practice guidelines and recommendations. The database of guidelines available from the National Guideline Clearinghouse and the recommendations of the U.S. Preventive Services Task Force are especially useful." Link Here. ]
(E) The Office of the Assistant Secretary for Health. [Remember from notes above- there isn't one.]
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(3) CO-CHAIRPERSONS.—The Committee shall be headed by the following co-chairpersons:
(A) The Assistant Secretary of Health. [Oh, it's you again Dr. Wormser. Blah, blah, blah.]
Members may serve after the expiration of their terms until their successors have taken office. [If this has to be in there- it doesn't, but I am trying to play nice- how about a time limit so we don't have a 6 month- or 6 year- delay while the non-existent Assistant Secretary of Health finds a replacement? Wheels tend to turn very slowly in the government.]
(d) MEETINGS.—The Committee shall hold public meetings 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. [Any private meetings?]
(e) REPORT.—Not later than 1 year after the date of enactment of this Act and annually thereafter, the Committee, acting through the members representing the Centers for Disease Control and Prevention and the National Institutes of Health, shall submit a report to the Secretary. [Hey Joe, here is that report. Can you hand it to the other folks on down the line? You can use interagency mail since we are all one tight-knit bunch. Where is the accountability? What's the purpose of passing around a report that those who get it are the same ones preparing it? And where is a provision that minority views can be submitted? Who settles the disputes that arise?]
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. [That's it? Come on!!!]
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(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, the Director of the Agency for Healthcare Research and Quality, the Chief of the Forest Service, or other Federal agencies as the Secretary determines appropriate, and in consultation with the Tick-Borne Diseases Advisory Committee, shall— [Beware of those in high places carrying fancy titles. They aren't typically your friends. The "Yes" men are not usually willing to step out of the box (they want to keep their cushy jobs), even though their folks are working outdoors and becoming chronically ill, disabled and/or are dying.]
(b) ACTIVITIES.—The activities described in this subsection are the following:
(1) The development of diagnostic tests, including— [So, the Committee is going to develop new tests? Reword.]
(B) improving the efficient utilization of diagnostic tests that have been adequately validated clinically available to account for the multiple clinical manifestations of both acute and chronic Lyme disease; [Remember Paul Auwaerter from Johns Hopkins- the IDSA guideline editor and IDSA spokesperson? He has been appointed to the FDA Committee. Currently he is going after our labs. Why not tie this section in a pretty bow and give it to him next Easter.]
(C) providing for the timely evaluation of promising emerging diagnostic methods; and [Huh?]
(D) the development of quantitative assays for the detection of tick-borne pathogens in ticks. [Let's just write a signed blank check for the IDSA and the same old researchers.]
(2) Surveillance and reporting of Lyme disease and other tick-borne diseases—
(4) Sponsoring scientific conferences on Lyme disease and other tick-borne diseases, including reporting in accordance with subsection (c) and con- sideration of the full spectrum of clinically based knowledge, with the first of such conferences to be held not later than 2 years after the date of enactment of this Act. [IF this has to be in here- it doesn't- see notes above- reword it so it makes sense.]
(5) Clinical outcomes research, including—
(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. [How about throwing some money their way so we can get a cure? We need actions, not words.]
(c) SCIENTIFIC CONFERENCES.—
(1) SENSE OF CONGRESS.—It is the sense of Congress that participation in or sponsorship of scientific conferences and meetings is essential to the mission of the Department of Health and Human Services in addressing Lyme disease and other tick- borne diseases. [The government agencies are already paying for conferences and meetings using YOUR tax dollars. That isn't going too well now, is it? So what makes this a better idea or gives it a need to be in a bill? And who does this cut out when implemented- the LDA and ILADS- who are much more patient friendly with their conferences than the CDC/NIH, etc.? The Lyme organizations use the money generated from scientific conferences for supporting their organizations. Wouldn't the conference money being spent, according to this bill, be better spent on treatment issues and research for a cure? Don't cut off the LDA and ILADS main sources of income.]
(2) CONFERENCE REPORTING.—
(A) IN GENERAL.—The Secretary shall submit to Congress an annual report regarding the costs and contracting procedures related to conferences with respect to addressing Lyme disease and other tick-borne diseases that are organized by the Federal Government or attended by representatives of the Federal Government, for which the cost to the Federal Government was more than $100,000. [Conferences and the public is not invited? Can't the CDC employees be given an orange and cup of coffee and call it good? They are already being paid to be there and have expense accounts for meals and gas.]
Other concerns:
Are the "meetings" of the Committee always public? It doesn't have anything in the bill stating otherwise. Someone may need to discuss all these conferences and who is doing all that work, and budgets, reports, etc.
If the bill is passed and the Committee meetings and conferences actually take place- the expenses are only covered for 2016- 2020. The term for a member is only 4 years. Is it over at the end of four years? No wording in then bill to cover that situation.
Opinion- This Lyme bill, especially when coupled with the Cures 21st Century Act, is possibly the worst when it comes to wording and affect that I've ever seen.