Salisbury, MD – Lyme Disease Presentation
Salisbury, MD – Lyme Disease Presentation
Lyme disease has not been taken seriously, and has never received monies or recognition commensurate with its status as the most prevalent vector-borne disease in this country today and the most prevalent vector-borne bacterial disease in the world. This is one of the reasons the Lyme Disease Association decided to become a national umbrella organization with a number of Lyme groups across the country joining as affiliates and chapters. The need to do this is pressing, since anywhere from 220-240,000 Americans develop new cases of Lyme disease each year. This number is based upon the CDC’s own statistics which indicate only 1/10th of actual cases meeting the CDC criteria are reported.
The LDA has been raising monies for Lyme disease, and has raised over $2 million toward research, education, prevention, and patient support. Since LDA is all-volunteer, it is noteworthy that over 98% of those monies go directly to programs. The LDA and its affiliates have together raised over $5 million for Lyme disease research education & prevention.
We have funded research projects from coast to coast and have had our projects published in numerous peer-reviewed journals including JAMA, Psychiatric Quarterly, Infection, and Neurology. We were very excited with the publication of one of our projects in Sept 2004 in The Proceedings of the National Academy of Science, (Wei-Gang Qiu et al) on the rapid exchange of genetic material among different strains of Borrelia, a finding which can have a significant impact on the diagnosis, treatment, and prevention of Lyme disease.
These newly published results come from a genome mapping project, principal investigator, Dr Steven Schutzer, NJ Medical School, which mapped the genomes of two different strains of borrelia and compared it with the B31 strain, which was already mapped. Renowned genome experts including Dr Claire Fraser from The Institute of Genomic Research (TIGR), where the human genome & B31 were mapped in the past, and Dr. Sherwood Casjens from University of Utah School of Medicine took part in the study, the results of which were presented at our 5th annual Lyme & Other Tick-Borne Diseases conference in Rye NY, October 2004.
Also at the LDA conference, Dr Fallon and his imaging team announced the results of the $4.7 NIH-funded re-treatment study. LDA had previously funded the pilot study which produced the results Dr Fallon used to apply for the NIH grant. Patients with chronic Lyme disease retreated with 10 weeks of intravenous antibiotics showed significant improvement in cognition and other symptoms. This finding represents a huge step forward in the battle against chronic Lyme disease. Dr Fallon is working on the publication of that material now. The LDA’s DVD from that conference presentation is available for sale through the LDA website.
Another significant area of research concentration has been the Lyme Disease Association’s & its CT affiliate, Time for Lyme’s partnership with Columbia University to open an endowed research center for chronic Lyme disease. We are about $600,000 away from opening the center. It will be the first center of its kind to study chronic Lyme in the world.
Meanwhile, Columbia University Medical Center has announced the opening of a Lyme and Tick-Borne Disease Evaluation Service at Columbia, directed by Brian Fallon, MD, which focuses on patients who are still experiencing symptoms after being diagnosed and treated for Lyme disease and patients who have unexplained psychiatric symptoms that may be due to Lyme or other tick-borne diseases. The goal is to provide a comprehensive evaluation, seeking to also rule out other disorders that may cause the multi-systemic symptoms.
Another LDA funded research project was published in February 2005 in Journal of Clinical Microbiology “Evidence of Borrelia Autoimmunity-Induced Component of Lyme Carditis and Arthritis,” by Elizabeth S. Raveche, et al. Simply put, the study showed that the mice who were models of autoimmunity and who were injected with Borrelia burgdorferi, developed a higher degree of joint swelling and higher anti-Bb responses. Thus there are auto immune components to the infection but they are intensified in the presence of Borrelia.
In 2004, LDA published a unique resource book called Lyme Disease Update Science, Policy & Law, which presents a digest of the peer-reviewed literature supporting chronic Lyme disease and also gives a state-by- state breakdown of actions taken by individuals and groups to help Lyme patients and physicians. It also has a section on the types of legal cases pertinent to Lyme patients. Written by Marcus Cohen, a columnist for the Townsend Letter for Physicians and Patients, the Foreword is by Dr. Fallon of Columbia and the Preface by New York Time’s best-selling author, Amy Tan. It is a resource suited for physicians who need “evidence” before they will treat chronic disease and for patients who need to provide insurance documentation.
LDA has just released the first of its kind publication, a book for children 8-12 who have Lyme disease─Lyme Disease Is No Fun: Let’s Get Well! written by Mary Wall MEd, CCLS, a Columbia graduate student, and edited by Colleen M. Smith, a peer-review medical journal production editor─each has battled Lyme disease.
At the Philadelphia 2003 conference, LDA established LymeAid 4 Kids for anyone under 21 with no Lyme disease insurance coverage. Any physician nationwide can apply for his/her patients─up to $1,000 per child for diagnosis and treatment. Amy Tan is supporting the fund. You can find information on the fund on LDA’s newly revamped website: LymeDiseaseAssociation.org
School Leader, the official publication of New Jersey School Boards Association, published my article titled Effects of Lyme Disease on Students, Schools, and School Policy in the Sept/Oct 2004 issue. Full text is on LDA’s website. Federal News Services just published Best Practices in School Health, a binder of important issues for schools and one of the modules is on Lyme disease. They included an interview with me and also included excerpts from our ABCs of Lyme Disease pamphlet written especially for parents and educators.
Last month LDA held Literati with Lyme, educational awareness and fundraising events held in NYC with internationally acclaimed author Amy Tan, (Joy Luck Club), Megan Cabot (Princess Diaries), Jordan Fisher Smith (Nature Noir), and E Jean Carroll (Elle Magazine columnist and writer for Sat. Night Live). The authors and a publisher took the stage at NYU to discuss their Lyme disease experiences. There was also a press conference at the Princeton Club and a benefit at Amy Tan’s loft in Soho. The premise of the events was to show that very influential professional people have developed Lyme and it has interfered with their writing abilities.
I want to mention two Lyme-related publications significant to patients from the past 18 months. The first from February, 2004, International Lyme & Associated Diseases Society (ILADS), a professional medical society, published Evidence Based Guidelines for the Management of Lyme Disease in the peer-review journal Expert Review of Anti-infective Therapy. The first guidelines to include the management of chronic Lyme disease, they have been accepted for listing on the National Guideline Clearinghouse™ (NGC™), a public resource for evidence-based clinical practice guidelines. NGC is an initiative of the Agency for Healthcare Research and Quality (AHRQ), US Department of Health and Human Services. The acceptance o f these guidelines by professionals has led to the development of two standards of care for Lyme disease, a fact which must now be considered by insurance companies and medical boards.
The second publication in another vein, Lorraine Johnson, JD, MBA, executive director of California Lyme Disease Association, an LDA affiliate, and Ray Stricker, MD, president elect of ILADS, published The Treatment of Lyme Disease: A Medicolegal Assessment in the peer reviewed journal Ex. Rev. Anti-Infect. Ther. 2(4),(2004). The authors discuss the medical basis for diagnostic and therapeutic uncertainty in Lyme disease, the issues regarding the legal standard of care that apply to treating physicians and insurers, the role of evidence-based medicine, patient autonomy, patient preference, and informed consent in Lyme disease. This is another article which can be used by patients and physicians to support treatment regimens.
Speaking of ILADS, it will hold its conference for members and non-member physicians on October 29 & 30 in Philadelphia. It will be preceded on October 28 by the LDA/Columbia conference also at the Crowne Plaza in Philadelphia. The LAD conference is open to the public.
Next I will discuss Poly ticks as Dr. Ed Masters always says.
LDA has worked with the Attorney General (AG) in Connecticut providing written testimony at the first Lyme disease hearings in 1999 (LDA was attending an NIH meeting at the time and could not have personal representation, but had met with the AG at a private meeting prior to the hearings and presented a notebook detailing activities in other states). Subsequently, LDA requested, through its CT affiliate, Time for Lyme, a meeting with the AG and the then health commissioner on Lyme issues. At that meeting, LDA was able to present some preliminary potential strategies to CT officials. At a later private meeting with the Health Commissioner, LDA suggested a regional coalition of states be formed to fight the disease. The Commissioner was open to the idea. LDA would then approach New Jersey (see NJ section).
Prior to the second Connecticut Lyme hearing in 2004, LDA was invited to become a member of the Coalition of CT groups supporting the hearings. LDA was the only non-CT group invited to participate in the coalition. Subsequent to the hearing, the Coalition, including the LDA, was invited to a meeting with the new CT Commissioner of Health to address pertinent issues, particularly the removal of the mandatory lab reporting in CT which produced on paper an ~80% drop in Lyme cases in CT. In 2004, the Health Commissioner invited up to 4 LDA people to participate for free in a state sponsored program for CT employees on how to write grants.
LDA was invited in 2003 by a newly formed CT group advocating for reform in the schools for students with Lyme to meet with the Connecticut Department of Education. Along with its CT affiliate, Time for Lyme, LDA met and discussed ways in which the DOE could help students. Many of our ABCs with Lyme disease pamphlets have been distributed in the schools in Connecticut and the CT DOE referred to this meeting with LDA at the 2004 hearings as evidence they were being proactive.
LDA was also invited in 2004 by the First Selectman in Ridgefield (mayor) to present at and moderate a forum to discuss the formation of a town wide forum on Lyme disease. Many health officials from across Connecticut attended.
Through the newly formed Delaware Chapter operating in 2004, LDA has had the opportunity to meet with and educate several significant officials including the office of Colin Powell. Additionally, a member of Delaware’s Congressional delegation has invited LDA to Washington.
LDA has been advising and providing material for an advocate there who has since met with the FL Medical Society and has arranged a meeting shortly with FL Health officials in which the LDA participated by conference call.
LDA has spoken at the last two fully accredited medical conferences in KS/MO in 04 and 03 and has provided its affiliate organization there, LAGKC, with help in preparing a written educational presentation which they made to their state assembly health committee. Additionally LDA provided them with materials and a small grant to prepare packets to distribute to Kansas school nurses.
LDA was asked for input on a resolution supporting federal Lyme research and state physician education initiatives. The resolution passed both houses in 2005. Additionally, in May 2005, LDA was invited by Governor John Lynch of New Hampshire to speak at the capitol signing of the first NH resolution designating May as Lyme awareness month.
In the early 90’s, LDA (NJ) was successful in having a law passed mandating teacher inservices annually for those educators with Lyme disease students. LDA (NJ) also successfully helped pass the first state-adopted curriculum for Lyme disease. Additionally LDA (NJ) supported the vector control bill allowing tick control to be placed under the mosquito control commission. Also, LDANJ worked for the passage of legislation which established the country’s first Governor’s Lyme Disease Advisory Council in 1993. LDA (NJ) also had a mandatory insurance bill introduced that year which was subsequently altered by a senator to be patient unfriendly and thus had to be scuttled. (It has been reintroduced into both houses in 2004, and LDA has met with the sponsors educating them to the current Lyme problems of patients trying to get treatment.) In 1998, LDANJ hosted an educational forum on Lyme disease for the NJ congressional delegation. Most offices sent representatives and Congressman Robert Andrews co- sponsored the event.
LDA met with the NJ State Board of Medical Examiners (NJSBOME) and presented the issues on doctor persecutions in NJ. In late 2004, the NJSBOME contacted LDA for suggestions for Lyme literate physicians for its review panel. In 2005, all LDA suggestions were accepted by the Board. This is a major policy shift by the Board.
LDA met with then acting Commission of Health Blumenstock in 2001with a team from surrounding states to try and foster a regional alliance which LDA had proposed to then CT Commissioner of Health Garcia who was open to the idea (see CT). NJ officials were lukewarm to the idea and unfortunately, 9/11 happened, precluding future discussions in this area.
In Dec 2004, LDA met with Acting Governor Codey’s office to discuss the issues surrounding Lyme disease patients, physicians, and pending NJ legislation.
LDA brought in a Columbia physician to in-service the NY Division of Youth & Family Services nurses on Lyme disease in May 2005. This is necessary since some parents have been charged with Munchausen by proxy for having their children treated long-term for Lyme disease. Also in May, LDA made a 2-hour presentation to many of the administrators of the Rutgers Cooperative Extension Service who are at a high risk of acquiring the disease as are those who are under their supervision. They did not feel they had been given adequate training in this area so invited LDA to present.
LDA co-sponsored a lobby day in Albany NY in 2001 to help educate lawmakers, the press and the public inside the capitol. Major press covered the event which included presentations by the LDA and several physicians and another medical group. Later, NY residents met with their legislators to tell them how they had been impacted by the disease.
LDA was invited by the NY Assembly Health Care Committee to testify before that committee in Albany in 2001 and before a combined Health & Codes Committee in 2002. I presented testimony about how the patients were unable to receive treatment or reimbursement and in the joint hearing, how the NY OPMC was making decisions on treatment modalities where a scientific controversy existed, which appeared to be outside their scope. Several bills were introduced as a result of these hearings and LDA has met with a number of key legislators on these bills. Unfortunately, the OPMC reform bill we have all fought for was not brought up for a vote in the Assembly and died as a result.
However, LDA was invited many times by NYS Assemblymen to meet with representatives of Governor Pataki’s office, the latest in January 2005, to work out the issue of NY doctor persecution. LDA has just learned that a non-legislative proposal made by our team at the January meeting was accepted and has been disseminated.
LDA was twice invited to speak at press conferences in 2004 by US Senator Chuck Schumer (NY) supporting additional Lyme monies for heavily hit Hudson Valley regions of New York.
LDA has been invited to speak at several forums over the years on Lyme in PA hosted by the House Majority Caucus Administrator and by Congressman Pitts. Additionally, several years ago, LDA and its PA Chapter were invited to Harrisburg to present in the statehouse to the PA House Majority Caucus Committee. LDA and its PA Chapter also worked with Senator Santorum on the Lyme Disease Initiative bill in 1999 and participated in a press conference with Santorum and Congressman Pitts at the Chester County Courthouse in 1999.
In 2005, LDA was invited to Harrisburg by the Honorable Merle Phillips where we coordinated a presentation including several doctors and a lawyer. We presented before a dozen or so insurers and many PA State officials regarding the effects of LD on patients and treating physicians. I addressed the latter area including the impact of the CDC surveillance criteria being misused for diagnostic purposes.
On May 5, I was invited by The PA Majority Policy Committee to the Lyme Disease Summit in York PA. I was on the panel with State Reps and Health officials. Hundreds of people showed up.
The day before the event, Merle Phillips introduced the doctor protection/insurance bill again. LDA and ILADS submitted a joint letter for the passage through the House and the bill is now in the Senate Committee.
Several years ago, LDA spoke before the California Lyme Disease Advisory Committee (created in 1998 at the urging of LDA’s California affiliate, CALDA) concerning the problems of Lyme in California which were going unrecognized suggesting they learn from the experiences on the east coast where the disease had been prevalent much longer and where educational activities were taking place to prevent the disease from spreading. LDA was able to meet and interact with some of the key scientific players at this venue. Additionally, LDA has provided various letters to help support Lyme disease legislation and policy decisions backed by CALDA. CALDA has been successful in getting mandatory laboratory reporting of Lyme disease in CA through legislation and through regulation. They also achieved the first western state hearing on Lyme disease in the Senate Health Committee in 2004 and have been able to place a treating physician on the Lyme Advisory Board and on the California Medical Board Review panel. Contacts have been made with various significant federal legislators.
LDA met with the Rhode Island State Director of Health in 2001 at the capital to discuss Lyme disease issues in RI. The LDA also met with Senator Chafee’s office at that time. LDA had provided some monies to URI for tick control studies.
At the request of the newly formed Governor’s Lyme Commission on Lyme disease and Other Tick-borne Diseases, LDA helped organize hearings held in Rhode Island on Lyme disease and also presented testimony. Through people there who later became the LDA RI Chapter, and through the Governor’s Chief of Staff, LDA was asked for and provided input into the bills which later passed into law providing mandatory insurance coverage and also protection for treating physicians (2002, 2003). In 2004, thanks to Lad’s Rhode Island Chapter, a permanent bill mandating insurance coverage was passed. LDA also presented committee testimony and worked on bill passage.
In 2002, LDA was an invited speaker at a congressional forum on Lyme disease co-hosted by Congressman Lange in (RI) and Congressman Simmons (CT). LDA received a recognition award from Congressman Lange in for its educational efforts. In 2003, LDA provided an in-service to most of the RI school nurses through the RI School Nurses Association.
CHPPM─ LDA was invited to US Army Centers for Health Promotion and Preventative Medicine in Aberdeen Proving Grounds in 1999 to receive a tour of the tick research facility and receive a briefing on the work being performed by the military. LDA was shown a prototype of a handheld lab to be used in the field by soldiers to immediately test a tick that had bitten a soldier so the soldier could be treated if the tick tested positive. The military was also developing a helmet with a heads-up display which would receive data from the GPS system on tick populations and tick infectivity rates. Those populations and rates were then being collected by the military for such a purpose. The person in the helmet could then direct troops around heavily tick infested/infected areas.
CHPPM was also working on pyrethrum-impregnated uniforms at time of manufacture for troops. Those are now being used by troops worldwide that travel to heavily infested areas.
LDA suggested to Congressman Smith at this time that measures need to be put in place to ensure that the result of those technologies were made available to the general public for similar uses and that agencies needed a better coordinating process so that such technology was shared.
Military In 2002, Congressman Christopher set up a meeting for LDA in DC with about a dozen military officials from various armed services. LDA had been working with members of the military and their families who had been unable to receive treatment for their Lyme disease or compensation from their government insurance. LDA brought three physicians and a military spouse to the meeting. The doctors presented a scientific case for chronic Lyme disease. The spouse, a Colonel’s wife, spoke of her inability to get appropriate care for her Lyme. A dialogue was begun and LDA received subsequent requests from a doctor at Walter Reed for peer reviewed literature on chronic Lyme disease. The Navy began dialogue with one of the physicians. Unfortunately, the war ensued and the dialogue was interrupted.
Haskin 2003, LDA was able to get a 3 hour meeting at HHS in DC. LDA took a team including more than a dozen major state officials, doctors and advocates nationwide who presented to HHS with supporting documentation. Many of the high ranking officials from CDC and NIH were video teleconferenced into the meeting to hear the presentation. At its conclusion, the government officials were silent despite the evidence LDA had amassed about the lack of focus on the disease, the problems caused by the misuse of the CDC surveillance criteria, and woeful lack of funding provided despite increasing case numbers. Both Congressman Smith and Congressman Pitts provided representatives to the meeting. A year later, LDA received the written answers to some of its suggestions to the CDC which have been posted on the LDA website.
Another issue LDA has been concerned and presented at this meeting is the blood supply. The Army (US Army CHPPM, Centers for Health Promotion & Preventive Medicine) in their report to congress in 1999, expressed concerns about the blood supply and tick-borne illness, mentioning Ehrlichiosis and Rocky-Mt. Spotted fever. Also in 1999, the CDC in association with FDA, NIH, DoD held a workshop to discuss tick-borne diseases and the blood supply. The Red Cross was a major participant. According to a RC memo, the participants concluded that there appeared to be little evidence for transmission of Ehrlichia, RMSF or LD, and they anticipated that the FDA would use that information as a basis for future policies on TBD.
A year or two later, the RC changed its blood donor policies. Red Cross blood donor guidelines now say those with chronic Lyme disease are not eligible to donate blood. If person with Lyme disease was treated with antibiotics and completely recovered, one can donate 12 months after last antibiotic dose. Individuals who had babesiosis are also prohibited from giving blood. The American Society of Clinical Pathologists (ASCP) blood donor guidelines under “serious illness,” now say defer indefinitely babesiosis and Lyme disease. Nowhere have I seen mention of the fact that research has demonstrated that Bb has been shown to survive in routine blood banking conditions, i.e., it can survive the blood processing procedures normally applied to transfused blood.
The LDA team also presented the lack of Lyme disease funding commitment to HHS. Unfortunately, Lyme disease has not been taken seriously by the government, and has never received monies or recognition commensurate with its status as the most prevalent vector-borne disease in this country today and the most prevalent vector-borne bacterial disease in the world. Currently, the CDC spends only $5.6 million on Lyme disease and the NIH $28 million.
LDA wants that issue addressed. To that end in April 2005, we went to DC to meet with a number of key legislators.
Frist ─ LDA and TFL met with Senator Frist’s DC office and presented letters from Lyme patients in Tennessee to the Senator. Additionally, LDA brought up the problems with the CDC surveillance criteria and how it impacts patients’ diagnosis, treatment and reimbursement. Possible Lyme legislation supporting research to help stop the spread of the disease and also to help find a cure was discussed with the office.
Santorum/Dodd/Smith/Gilchrest/Kelly─LDA and TFL met with representatives of these offices to provide possible language for developing legislation which could provide balanced research funding and also a task force composed of public and government entities who would act in an advisory capacity to ensure that government agencies worked in a coordinated fashion and that the monies were appropriately addressed toward priority goals.
H.R. 2877 Introduced June 14, 2005 by Congressman Christopher Smith (NJ) ALERT Act for Education and Research and Tick-Borne Diseases