2015 Federal Bills

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

AfterTheBite@gmail.com

xxxxxxxxxxxxxxxxxxx

SENATE VERSION

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?]

~~~~~

...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".]

```````````

(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.]

``````

(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!!!]

````````

(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—

• (A) to accurately determine the incidence of Lyme disease and other tick-borne diseases; [Anyone reading the research for the past 10 years or so? Most, if not all involved with reporting are trying to find ways to stop reporting partially or all together. They received millions to do the job and have failed miserably. You going to allow them to keep it up? Good money after bad? Why not take those millions and put that money towards A CURE!!! The only thing reporting has done for patients is to deny them the existence of Lyme in certain areas. It is a world wide problem. Why waste more time and money?]
• (B) to evaluate the feasibility of developing a reporting system for the collection of data on 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; [Who really cares? And what will become of all that work? Nothing.]
• (C) to evaluate the feasibility of creating a national uniform reporting system including required reporting by laboratories in each State; and [There is reporting now and it is awful. Why extend the misery? We need a cure.]
• (D) to evaluate the feasibility of creating a national monitoring system for tick populations. [Guessing the ticks don't care. Why should we? We need a cure- not more bean counters sucking up all the research funds.]
• (3) Prevention activities, including—
• (A) the provision and promotion of access to a comprehensive, up-to-date clearinghouse of peer-reviewed information on Lyme disease and other tick-borne diseases; [That info is readily available from Pub-Med and on the internet. You just type "Lyme" in the search bar. How about we get down to the real needs of patients and our doctors? Plus, I don't think the ticks are going to read it anyway so they will know what they can't and can carry and transmit.]
• (B) increased public education related to Lyme disease 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; [That's what we don't need. The CDC expanding the spread of their garbage to more readers.]
• (C) the creation of a physician education program that includes the full spectrum of scientific research related to the identification of symptoms associated with, and the diagnosis of, Lyme disease and other tick-borne diseases, and, in coordination with the Tick-Borne Diseases Advisory Committee established under section 3, the publication of an annual report that evaluates published guidelines and current research available on Lyme disease, in order to best educate health professionals on the latest research and diversity of treatment options for Lyme disease; [Really? Doctors read as little as possible. The CDC already has physician education programs- they even give credits for them- and they are as bad as it gets. We need to promote the "other" side of treatment and other options besides the CDC/IDSA treatment guidelines.]
• (D) research to understand mechanisms of tick repellents and to develop new chemical and non-chemical strategies for the control of ticks; and (E) exploring the utility and potential for the development of a safe and effective vaccine against Lyme disease and other tick-borne diseases. [They are already doing that research in the government and private sectors. Let's focus on a cure. As for a vaccine- think how many millions of dollars will be available to find a cure instead of another harmful, unsuccessful vaccine.]

(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.]

• (2) a scientifically qualified assessment of Lyme disease and other tick-borne diseases, including both acute and chronic instances, related to the broad spectrum of clinical evidence of treating physicians involved in direct patient care, as well as published peer reviewed data, that shall include recommendations for addressing interagency research gaps in tick biology and tick management, and the diagnosis, transmission, and treatment of Lyme disease and other tick-borne diseases, and an evaluation of treatment guidelines and the utilization of such guidelines; [Stop focusing on the stupid ticks. Last I heard they were still able to work and go to school, and weren't in screaming pain from being denied treatment. Cure, cure, cure.]
• (3) details regarding progress in the development of accurate diagnostic tools that are more useful in the clinical setting for both acute and chronic disease; [Just ask Paul Auwaerter, the IDSA guideline editor and spokesperson from Hopkins. Now part of the FDA, he will be denying the use of all of the tests he and his buds don't have patents on if he gets his way.]
• (4) information relating to 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; and [Again, don't give the fox the keys to the hen house.]
• (5) a copy of the most recent annual report of the Tick-Borne Diseases Advisory Committee issued under section 3(e), and an assessment of progress in achieving the recommendations included in such report. [Lyme 101- Don't send out the official "recommendations" that the CDC and other agencies control. Doing so is like them winning the lottery.]
  • Funds for the purpose of carrying out this Act may be derived from amounts appropriated to the Department of Health and Human Services and otherwise available for obligation and expenditure for each of the fiscal years 2016 through 2020. Amounts appropriated under the preceding sentence shall be used for the expenses and per diem costs incurred by the Tick-Borne Diseases Advisory Committee established under section 3 in accordance with the Federal Advisory Committee Act (5 U.S.C. App.), except that no voting member of the Tick-Borne Diseases Advisory Committee shall be a permanent salaried employee. [Permanent salaried employee of what? Any job?]
  • End of bill- Is this system suppose to be in place forever and ever? Why no sunset clause (ending date) for our protection in the event this turns sour?

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.