Vermont Lyme Doctor Protection Bill Signed Into Law
Over vehement objections by the Vermont Board of medical practice and others, Vermont Governor Shumlin signed Act 134 (Click here to read Act 134) into law on May 22, 2014. The law directs the Board to adopt a policy statement stating they will not discipline licensees based solely on their long-term antibiotic treatment practices in accordance with Lyme guidelines issued by the International Lyme & Associated Diseases Society (ILADS). Shortly after the law was signed, the Board complied by issuing a Board Policy (Click here to read Board Policy) which included language on what the licensee may be disciplined for while practicing within those guidelines.
US Senate Bill 2013
Click on the Cosponsor link to see if your Senator is already signed onto the bill. If he/she is not, click here to contact them today.
Sample letter / phone blurb
S.719 : Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2013
Sponsor: Sen Blumenthal, Richard [CT] (introduced 4/11/2013) Cosponsors (10)
Committees: Senate Health, Education, Labor, and Pensions
Latest Major Action: 4/11/2013 Referred to Senate committee. Status: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2013 – Requires the Secretary of Health and Human Services (HHS) to establish the Tick-Borne Diseases Advisory Committee. Requires the Committee to 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 heath policy decisions and that information disseminated to the public and physicians is balanced; and (5) advise relevant federal agencies on priorities related to Lyme and other tick-borne diseases. Directs the Committee to regularly review published public and private treatment guidelines and evaluate such guidelines for effective representation of a wide variety of views.
Requires the Secretary, acting as appropriate through various federal officials, to provide for the coordination of all federal programs and activities related to Lyme and other tick-borne diseases and the conduct or support of specified activities, including: (1) developing sensitive and accurate diagnostic tools and tests, (2) improving the efficient utilization of diagnostic testing currently available, (3) surveillance and reporting of Lyme and other tick-borne diseases, (4) providing and promoting access to a clearinghouse of information on such diseases, (5) increasing public education related to such diseases, (6) creating a physician education program to educate health professionals on the latest research and diversity of treatment options for Lyme disease, (7) establishing epidemiological research objectives, and (8) determining the effectiveness of different treatment modalities.
Thanks largely to the efforts of MaineLyme, a non –profit, and primary sponsor Representative Sheryl Briggs, on June 24, 2013, Main Governor LePage signed the Lyme bills into law (Chapter 340). In April, the LDA wrote in support of the bills and requested inclusion as a resource on the Maine website. The law now includes the Lyme Disease Association website as a resource. Some of law text below:
1. Lyme disease may be difficult to diagnose and treat; 2. Some patients seem not to respond to the usual antibiotics used for treating Lyme disease and seem to have post-treatment Lyme disease syndrome. There are some doctors who believe that longer doses of antibiotics may sometimes be helpful. Some patients believe that they have benefited from extended treatments of antibiotics; 3. Antibiotics can be lifesaving medications but can have serious side effects, such as the development of drug-resistant organisms. A patient who contracts an infection from a drug-resistant organism may never fully recover; 4. A negative result for a Lyme disease test does not necessarily mean that Lyme disease is not present and if symptoms continue, the patient should contact a health care provider and inquire about the appropriateness of retesting or additional treatment; and 5. Information on treatment alternatives for treating Lyme disease is available through Internet websites of organizations, including, but not limited to, MaineLyme, Lyme Disease Association, the Mayo Clinic, the National Institutes of Health and WebMD.
(L to R) Rep. Sanderson, Bill Whitten (lobbyist and patient) Sally Jordan 12 yr, Lisa Jordan, Susan Holmes, Governor LePage, Happy Dickey RN, Rep. Sheryl Briggs (original Sponsor) Diane Farnum, Rhonda Buker, (both initiators of the bill), Rep. and Rep. Johnson (patient). Dr. Beatrice Szantyr is missing from this picture but was a huge factor in bill’s success. Photo Courtesy MaineLyme.org.
Appropriations Bill Status
The passage of language including “chronic Lyme diseasae” and “persistent infection” can help patients get the care that they require.
“Fiscal Year 2010 Labor, Health & Human Services, Education Appropriations Bill”
December 2009 President Obama signed this Appropriations Committtee bil into law with the report language
On July 30, 2009, the Senate Appropriations Committee passed Lyme disease language contained in the Fiscal Year 2010 Labor, Health & Human Services, Education Appropriations bill. The vote was 29 to 1. Senator Christopher Dodd (CT-D), and Appropriations Subcommittee Chair, Tom Harkin (IA-D) were instrumental in passage of the language. The next step is a vote on the Appropriations bill by the entire Senate expected this week.
On July 24, 2009, the full House passed Lyme disease language contained in the Fiscal Year 2010 Labor, Health & Human Services, Education Appropriations bill (HR 3293). The vote was 264 to153. Congressman Christopher Smith (NJ-R), author of the language; House Appropriations Committee Chair, David Obey (WI-D); and U.S. House Appropriations Committee Members Frank Wolf (VA-R) and Nita Lowey (NY-D) were instrumental in its inclusion.
Rep. Chris Smith (NJ) Introduces Lyme Bill
July 17, 2011. The all volunteer national Lyme Disease Association (LDA) is pleased to announce the introduction of a bill and proposed legislative actions that focus attention on the growing concerns surrounding Lyme and tick borne diseases.
Congressman Christopher Smith (R-NJ) introduced HR-2557, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2011, on Friday, July 15, 2011, along with cosponsors Frank Wolf (VA), Tim Holden (PA), and Chris Gibson (NY).
Congressman Smith’s bill, HR-2557, requires the Secretary of Health and Human Services to establish a Tick-Borne Diseases Advisory Committee to address a variety of important issues. The Committee will be charged with advising Federal agencies on priorities related to Lyme and tick-borne disease issues and will be composed of scientists, representatives from government agencies, health care providers and patient representatives. The Committee is charged with ensuring that a broad spectrum of scientific and stake-holder viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced.
Congressman Smith, Chairman of the Congressional Lyme Disease Caucus for the past seven years, has worked diligently to foster greater knowledge about tick-borne diseases over the years. Amongst his many Lyme-related endeavors, he hosted a Lyme and Tick-Borne Diseases Forum last summer in Wall Township, NJ, for health officials, medical professionals and the public, with over 300 people in attendance. Pat Smith of the LDA was one of the guest speakers.
Senator Richard Blumenthal (D-CT) has plans to highlight legislation to combat the spread of Lyme disease. He will meet with volunteer patient advocates from the Connecticut based Lyme disease group, Time for Lyme (TFL), an affiliate of the Lyme Disease Association, at the Connecticut Agricultural Experiment Station in New Haven on Monday, July 18, 2011.
Senator Blumenthal, who served an unprecedented five terms as Attorney General in Connecticut, is known for his efforts to make real and lasting difference in the lives of the people. He has been a long-time public defender of Lyme disease patients rights.
The Lyme Disease Association (LDA), an organization that seeks to eliminate tick-borne diseases by funding research, educating the public, and providing scientific conferences for doctors, is grateful to Congressman Smith, Senator Blumenthal, the bill cosponsors and staff for their enduring commitment to improve the health of countless patients suffering from Lyme and tick-borne diseases.
For more information please visit the LDA website www.LymeDiseaseAssociation.org
Contact: Pat Smith, President, Lyme Disease Association, Inc. PO Box 1438, Jackson, NJ 08527. Toll free information line: 888-366-6611. Fax 732-938-7215. Email president@LymeDiseaseAssociation.org
Connecticut Doctor Protection Bill for Lyme signed by Governor Rell. HB 6200 contains language that will protect CT licensed Lyme treating physicians from prosecution by the State of Connecticut Medical Examining Board solely on the basis of a clinical diagnosis and /or for treatment of long-term Lyme disease.
from Pat Smith, President, Lyme Disease Association, Inc. (LDA)
CONNECTICUT DOCTOR PROTECTION BILL FOR LYME
SIGNED BY GOVERNOR RELL
Newtown, CT, JUNE 21, 2009 − Patient groups across Connecticut and the nation are elated by the June 21 announcement by Connecticut Governor Jodi Rell that she has signed the Lyme disease doctor protection bill, following its recent unanimous passage in both houses of the Connecticut General Assembly.
HB 6200 contains language that will protect Connecticut licensed Lyme treating physicians from prosecution by the State of Connecticut Medical Examining Board solely on the basis of a clinical diagnosis and /or for treatment of long-term Lyme disease. The bill provides the definition for Lyme disease which includes “the presence in a patient of signs and symptoms compatible with acute infection with Borrelia burgdorferi; or with late stage or persistent or chronic infection with Borrelia burgdorferi, or with complications related to such an infection.” It also defines clinical diagnosis as determined by a physician “…that is based on knowledge obtained through the medical history and physical examination alone, or in conjunction with the testing that provides supportive data for such clinical diagnosis.” In addition, it provides for updating the Lyme disease definition if other strains are found to cause Lyme disease.
This law resulted from months of negotiations between Legislative Leaders, the Connecticut Department of Public Health and the undersigned patient Groups. According to Maggie Shaw, Newtown Lyme Disease Task Force, who has been a leader in the Connecticut effort, “This law will be a relief to the families in CT who will finally be able to receive care in their own communities and their own state. One of the burdens of Lyme disease, finding treatment, will be lifted from their shoulders, as this law offers hope to residents that more physicians who are knowledgeable about Lyme disease will be encouraged to practice within the State of Connecticut.”
Pat Smith, president of the national Lyme Disease Association, who has been working and meeting with legislators in Hartford to secure passage, commented on the new law: “Justice has been served. Human health has finally triumphed over vested interest in the Lyme capital of the world. Lyme patients and treating physicians in Connecticut can breathe a collective sigh of relief. For years, they have not only been battling the disease but also battling the politics which have prevented patients from getting treatment and physicians from treating. Governor Rell and the Legislature have come down on the side of the people.”
The Groups extend their gratitude to Governor Jodi Rell and the General Assembly, and in particular, Representatives Jason Bartlett, Kim Fawcett, Chris Lyddy, and Peggy Reeves, and Senator Jonathan Harris and Representative Betsy Ritter, Co-Chairs of the Joint Public Health Committee. The support of patients, families, members of the Lyme community, the Connecticut Medical Society, Association of American Physicians and Surgeons, and the International Lyme & Associated Diseases Society was invaluable.
Connecticut becomes the third state in the nation to have a law that protects physicians who treat Lyme disease long term.
Doctors, Scientists from broad spectrum of viewpoints
Patients, Volunteer Organizations
Government members – non-voting
Authorizes appropriations of $20 million a year for each of 5 years in addition to any other authorization of appropriations for such purposes
Research (gold standard diagnostic tests, clinical outcomes research)
Examine current surveillance & reporting
Physician & public education
House Floor Debate On Lyme bill – 2008
Lyme Disease Controversy made it to the house floor for a heated debate between Congressman Smith (NJ), Congressman Wolf (VA) and Congressman Pallone (NJ).
House Floor Debate on Lyme Bill in 2008 Congress September 27, 2008 On US House Floor in Washington, DC
Congressmen Frank Wolf (VA) and Christopher Smith (NJ) interact on the House floor with Congressman Pallone (NJ), Chair of the Energy & Commerce Health Subcommittee. Questions arose about why Mr. Pallone boxed the Lyme bill up in his Committee and prevented a hearing on the bill. Mr. Pallone agreed that he would have a hearing in the upcoming 2009 session.
Congressman Christopher Smith (NJ), Bill Sponsor
This video clip addresses the controversy surrounding Lyme and tick-borne diseases. Provides details covering the recent IDSA guidelines and the CT Attorney General’s findings of major conflicts of interest and bias towards chronic Lyme. Points out, the bill is not about treatment but about allowing all points of views to be considered and all science included within the Lyme Advisory Committee that is created in the Lyme bill. Congressman Smith states that he believes there is a coverup surrounding Lyme disease.
To view 7 min. video clip from C-Span
To view 5 min. video clip from C-Span
To view below the written excerpts of Congressman Smith’s Debate
*when you get get to C-Span it might take a short period of time for the video to appear.
Congressman Frank Wolf (VA), Bill Co-Sponsor
This video clip addresses the Lyme disease epidemic and he adamantly demands why Congressman Pallone is holding the Lyme bill from going forward in his health subcommittee. He discusses the suffering of patients in his State of VA and along the East Coast and asks why nothing is being done to help reduce this epidemic. He demands a hearing early next year and Pallone agrees the topic is controversal and says he will hold a hearing next year.
To view 7 min. video clip from C-Span
*when you get get to C-Span it might take a short period of time for the video to appear.
Excerpts from Smith Statements on Lyme Disease Bill
Washington, Sep 27, 2008 –
Mr. SMITH of New Jersey.
Let me just say, to clarify the record, this legislation, which would seek to lay bare the science about Lyme disease, the fact that I believe we do have an epidemic, the fact that Lyme often go misdiagnosed, underdiagnosed. It is called “the great pretender” because so many people have it and don’t know it. It often masquerades as other kinds of anomalies manifesting in a person’s body. And it is not until it gets to a chronic state—very often causing severe disability, including neurological damage—that people finally realize that they have Lyme disease.
There has been, unfortunately, a significant, I believe, cover up of the fact that chronic Lyme exists. The gentleman knows, we have asked him repeatedly, the gentleman from New Jersey, my good friend, Mr. PALLONE, this legislation has been pending in his subcommittee. He told Pat Smith—no relation to me—who runs a Lyme disease association, that this would get a hearing and would be marked up. It has not been marked up. And meanwhile, this epidemic is growing—it is exploding.
Now, let me just say for the enlightenment of my colleagues; the Infectious
Disease Society of America, which creates—and often does a very laudable job—the definitions, the parameters of what constitutes a certain disease, has looked at Lyme and said that chronic Lyme does not exist. Many of us have raised serious concerns about that because of what we believe to be conflicts of interest on the part of the panel members that made up the Lyme panel.
I would note parenthetically that CHRIS DODD is the prime sponsor of the comparison legislation that I’ve introduced on the House side. We have worked cooperatively on the legislation, so we have a companion bill on the Senate side. The legislation has over 110—I think it’s 112—cosponsors, totally bipartisan, Democrats and Republicans alike rallying around this legislation.
The problem with the Infectious Disease Society of America is that these conflicts of interest, we believe, resulted in the conclusion that chronic Lyme doesn’t exist. We don’t know absolutely if that’s the truth, but Attorney General Richard Blumenthal from Connecticut finally took a look at this and came back with a scathing insightful report that there were conflicts of interest. The red flag should go up everywhere.
What does my legislation do? As Mr. PALLONE knows, the legislation does not prescribe a protocol, as he has suggested. It simply calls for an advisory committee that would take a good, long look at Lyme disease and determine what is fact and fiction, and finally, for the sake of all of those who are suffering immensely from this disease and their families, say what we need to be doing to mitigate and hopefully stop the spread of Lyme, whether it be long-term and very heavy antibiotic treatment—which I believe probably is the case based on clinical practitioners who have suggested that to be the case—but we want an honest look.
As Mr. PALLONE knows, we did not get an honest look from the Infectious Disease Society of America. And I find that appalling. Conflict of interest with insurance companies has no place in modern medicine. And regrettably, and it has been—again, the full weight of the Attorney General’s report clearly suggests, Richard Blumenthal of Connecticut, that there were significant conflicts of interest on the part of the panel members.
Our legislation says let’s go where the science takes us. If the science says chronic Lyme exists, then all those patients and the insurance companies which need to be providing the coverage, to get the medicines and the like, like antibiotics—because what has happened, as my friend knows, because of this exclusion of chronic Lyme due to a problem in definition, the insurance companies say we don’t have to pay. So when a patient presents with a bill of $100,000 or some excessive amount of money, the insurance companies say, not us, tough luck, we’re not going to pay for it. And they go right back to what I believe to be a false definition that precludes chronic Lyme as a condition.
Now, you might think that chronic Lyme doesn’t exist, I say to my friend, the chairman, but let’s go where the science takes us. We need this advisory committee and we need it now. All points of view, as our legislation clearly suggests, has to be a part of this group. We want a robust debate, not something that is engineered by insurance companies.
Finally, the legislation would authorize $100 million over 5 years, $20 million each year. Frankly, if that drops off due to opposition to new authorization, and is only an authorization, I would like to see it go forward nevertheless, know this however, we’re not spending enough on Lyme.
And Lyme is, as Mr. WOLF said so aptly, growing exponentially. CDC admits we are missing most of the cases. As many as 90 percent of the cases go unreported. Our state, Mr. PALLONE, as you know, is number three in prevalence according to CDC numbers, and even that is probably very much understated in terms of the actual prevalence of Lyme disease.
So I would make the appeal again, as I have made to my friend from New Jersey, as I have made to Mr. DINGELL, as I have made to Mr. BARTON and everyone else, this legislation ought to be on this floor and it ought to be on the floor today. It is truly bipartisan. There ought to be a consensus to go where the science takes us. And again, an advisory committee, a Blue Ribbon panel that would be configured under this legislation would finally end, hopefully, this contentious debate and tell us what it is and what it is not.
I have known dozens of people who have had chronic Lyme. Now, you might say it doesn’t exist, the Infectious Disease Society says it doesn’t exist. These victims suffer from the spirochete, and have suffered neurological damage, severe joint damage, and many, many other problems.
There is a new book called “Cure Unknown” that I would recommend to the House. I read it in one sitting because it is so incisive in finally breaking through the fog on this disease. People are walking around with Lyme and they don’t even know it.
We need to bring the forces to bear of the U.S. Government that an advisory committee of this kind would do a Blue Ribbon panel, a 9/11-type panel of scientists, of the best people we can put together to say, put aside the egregiously flawed Infectious Diseases Society of America’s finding, which Blumenthal said was riddled with conflict of interest—and I urge Members to read Blumenthal’s opinion, I will put it in the RECORD so Members can read it—his findings were, ‘‘atrocious, conflict of interest everywhere.’’
This legislation ought to be on the floor and it ought to be on the floor today.
Mr. Speaker, again, I didn’t get a chance when Mr. PALLONE was here to correct the Record. I—we—did contact Congressman FRANK PALLONE and NATHAN DEAL by way of letter on May 18, 2007, and wrote at the time as co-chairs of the Congressional Lyme and Disease Caucus, ‘‘we are writing to respectfully request that you mark up and report H.R. 741.
“H.R. 741, the ‘Lyme and Tick-borne Disease Prevention, Education and Research Act of 2007’ would work toward goals for the prevention, accurate diagnosis, and effective treatment of Lyme disease.”
Then we went on to explain the bill. We pointed out that at the time we had 77 cosponsors. That is now 112 and it is totally bipartisan and includes majority leader STENY HOYER. We also pointed out that Lyme is the most prevalent vector-borne disease in the United States today. More than 220,000 Americans develop Lyme each year. According to the CDC, only 10 percent of the cases that meet its surveillance criteria are reported. Cases that fall outside of the surveillance criteria are not even considered anywhere statistically.
If not diagnosed and treated early, Lyme disease can lead to chronic illness and can affect every system in the body, including the central nervous system and cardiac system. Later symptoms of Lyme disease include arthritis, neurological problems such as facial paralysis, memory problems, extreme weaknesses of the extremities, seizures, heart block and inflammation and even blindness.
So we sent that back in May 18, 2007. And I say that with respect to my colleague.
Let me also point out, and I just will read a very small portion of the statement of Attorney General Richard Blumenthal, the attorney general of Connecticut. And this is his statement.
“Attorney General Richard Blumenthal today announced,” and this is May 1, 2008, “that his antitrust investigation has uncovered serious flaws in the Infectious Disease Society of America’s process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.”
“The IDSA guidelines have sweeping,” this is Blumenthal speaking, “have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence treatment decisions by physicians.
“Insurance companies have denied coverage for long-term antibiotic treatment, relying on those guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.”
Blumenthal goes on to say: “This agreement vindicates my investigation finding undisclosed financial interests and forcing a reassessment of IDSA’s guidelines.”
Blumenthal said: “My office uncovered undisclosed financial interests held by several,” several, “of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science. The IDSA’s Lyme disease guideline process lacked important procedural safeguards requiring complete reevaluation of its 06 Lyme disease guideline, in effect a comprehensive reassessment through a new panel.”
Blumenthal, and I will put this in the RECORD, talks about the conflicts of interest with the insurance companies. Again, I would think this Congress would want to get to the science, find out does chronic Lyme exists, and whether or not this is indeed a coverup.