https://www.linkedin.com/pulse/cdc-sabotages-state-laws-protecting-lyme-patients-jenna-luche-thayer?trk=v feed&lipi=urn%3Ali%3Apage%3Ap_flagship3_feed%3BUDHCBk0s9W%2BA1GLOF69nqg%3D%3D by Jenna Luche-Thayer, July 4, 2017
The United States (US) Constitution states that ‘all men are created equal.’ However, American history has shown time and again that human nature and cultural beliefs have led to widely accepted discrimination against certain groups. In almost every case, these marginalized groups have had to organize and demand their rights under the Constitution in order to overturn practices of discrimination.
When one reviews US history, it appears that the federal government takes leadership over state government regarding the rights of marginalized groups. In such cases, the federal government and Supreme Court has intervened to extend active protection for groups living under discriminatory state laws. Classic examples of federal protection of marginalized groups include the federal enforcement of desegregation in the nation’s public school system.
In current times, the US Lyme epidemic has created many thousands of patients debilitated and disabled by the disease and its coinfections. In contrast to historic trends, there are significantly more state-level commitments to the protection of this vulnerable group than there are federal commitments. In fact, the federal government has done nothing to protect many who make up this vulnerable group.
The numbers of state actions to protect and serve Lyme patients is directly linked to the increasing national impact of the Lyme epidemic. To put it simply, more and more state officials and legislators have family members, friends and constituents who are suffering significant and enduring debilitations, disability and financial ruin from Lyme, chronic Lyme, and complications from coinfections. In some cases, the state officials and legislators themselves have Lyme, chronic Lyme or Lyme and coinfections.
As it stands, more than 25 state laws have been passed to provide some measure of protections for Lyme patients and/or practitioners who treat Lyme patients. There are 15 states that have such legislation and more are pending. There are ‘Lyme disease awareness’ laws in 14 states and more are pending.[i] Furthermore, there are increasing numbers of grassroots Lyme advocates that have gained the support of state officials, legislators, medical and other community leaders to quietly make changes that advance access to Lyme treatment options for state staff and other workers at risk of tick-borne diseases including those in construction, landscaping, forestry, brush clearing, land surveying, farming, railroad work, oil field work, utility line work, park or wildlife management, and migrant workers. This is driven by concern for staff wellbeing and economic considerations, e.g. the importance of having a healthy workforce and the desire to reduce costs driven by absenteeism, ill health and disability claims.[ii]
There are over 70 active and enduring nonprofit Lyme organizations throughout the US. Many are openly working with legislators and other state officials to advance Lyme awareness and protections for Lyme patients and their practitioners. Such nonprofit organizations are informing the public and health practitioners that Lyme disease can be complex, dangerous and life altering, that current diagnostic tests are highly inaccurate and a month of antibiotics is often insufficient treatment. Nonprofit Lyme groups in Michigan, Alabama, Florida, Georgia, Massachusetts, South Carolina, and Wisconsin have put up Lyme Awareness billboards. [iii] Such Lyme awareness activities differ dramatically from those of the federal government and particularly that of the Centers for Disease Control and Prevention (CDC).
Not only has the federal government done little to protect or serve Lyme patients, there is a federal agency that is actively sabotaging the State laws protecting Lyme patients. This federal agency is the CDC. This may well the only case in US History where the federal government is actively undermining state laws that protect a specific group of suffering medical patients – many of whom are debilitated, disabled and financially ruined from illness. [iv]
Furthermore, the CDC Lyme Corps program may well be the only public health education program in US history to serve this cruel objective by exploiting the energy of American youth who wish to serve their communities.
It appears that the CDC Lyme Corps program is a national public health education program. From 2013 to 2016, the CDC website provided no information regarding Lyme Corps. In mid-May 2016, the CDC website posted a few sentences that provide meager information regarding Lyme Corps. In a clear departure from normal federal transparency practices regarding public access to unclassified program information, the CDC has made Lyme Corps’ basic program information largely unavailable.
Internet research has found some information regarding Lyme Corps. According to a conference poster, the CDC Lyme Corps program is a “new means of educating health care providers (HCPs) and the public about Lyme disease because: 1) recent surveys indicate that provider practices are often inconsistent with current Guidelines and 2) inaccurate information about Lyme disease is disseminated broadly through internet forums, social media, and traditional media. Pairing these needs with the desire for a “hands on” approach, we developed Lyme Corps. Lyme Corps trains students pursuing health care degrees… to provide Lyme disease education and outreach to both HCPs and the public. Participants’ primary responsibilities include: 1) educating colleagues; 2) educating HCPs via clinic visits and material dissemination; and 3) increasing public knowledge in-person and online.” [v]
As noted, the CDC appears to be concerned that “provider practices are often inconsistent with current guidelines”. The ‘current guidelines’ referred to are the 2006 Lyme Guidelines written by the Infectious Diseases Society of America (IDSA).
To be clear, the CDC is using Lyme Corps to tell health practitioners the only valid treatment for Lyme, chronic Lyme and complications from coinfections are found in the 2006 IDSA Lyme Guidelines. However, key science institutions and federal agencies would not support this objective.
For example, the federal Agency for Healthcare Research and Quality (AHRQ) is charged with improving the safety and quality of America’s health care system. AHRQ develops the knowledge, tools and data needed to improve the health care system and help Americans, health care professionals and policymakers make informed health decisions. The federal National Guideline Clearinghouse (NGC) provides summaries regarding evidence-based clinical practice guidelines, including their development and implementation. AHRQ sponsors the NGC database and website for information on evidence-based clinical practice guidelines. The 2006 IDSA Lyme Guidelines were removed from the NGC in February 2016 because they failed to meet federal standards evidence-based clinical practice Guidelines.
The IDSA Lyme Guidelines have also failed the prestigious Institute of Medicine’s (IOM) Standards for Developing Trustworthy Clinical Practice Guidelines and the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Working Group system for grading the quality of evidence and strength of recommendations. [vi]
The CDC Lyme Corps was initiated in 2013 prior to the NGC delisting of the IDSA Lyme Guidelines. Nevertheless, as of July 4, 2016, the IDSA and the CDC Lyme policy and programs, including Lyme Corps continue to promote these outdated notions and noncompliant Guidelines.
In 2014, CDC Vector-Borne Disease Branch (VBDB) official Christina Nelson enlisted Lyme Corps members from professional staff in the Vermont Department of Health and students at University of Vermont (UVM). UVM Students shared their altruistic reasons for joining Lyme Corps in the University of Vermont medicine blog Joining Lyme Corps to Raise Awareness in Vermont posted June 11, 2015:
In the fall of 2014, “Dr. Christina Nelson, a medical epidemiologist at the CDC in Fort Collins, Colorado…described a program called Lyme Corps, a CDC-sponsored, interdisciplinary program consisting of medical students, public health students, and residents from the University of Vermont. We were immediately interested in joining the effort. Here’s why…
[Student 1] I grew up in a community in Maine where there is a high incidence of Lyme disease. I have known many individuals who have been affected by this disease and when I volunteered in my local pediatrician’s office three years ago, I got to see first-hand how families can be impacted by this tick-borne illness. I decided to participate in Lyme Corps because I wanted to help teach both my community here in Vermont and back in Maine more about this condition through increased awareness and prevention.
[Student 2] As medical students, there is some straightforward and important information we can relay to patients to help combat misinformation and confusion about Lyme disease.”
The CDC’s initiation of the Vermont Lyme Corps program followed the passing of a Vermont bill that protects Lyme patients and health practitioners who treat Lyme patients. The H. 123 bill has been effective as of July 1, 2014.
According to the July 14, 2014 Providence Journal article New Vt. law aims to aid in treatment of Lyme disease as cases soar by Lisa Rathke, “Vermont lawmakers passed a bill that they hope will help with treating the [Lyme] symptoms. The new law makes doctors and other health professionals immune from professional conduct charges if they prescribe a course of long-term antibiotics to treat Lyme disease…Vermont joined Connecticut, Massachusetts, Rhode Island and California in protecting doctors if they prescribe antibiotics for more than a month to people with the disease.” [vii]
The Vermont H. 123 bill states:
- Lyme disease, caused by one or more Borrelia species of spirochete bacteria…has become endemic in the State.
- Lyme disease may be successfully treated with a short-term course of antibiotics if diagnosed early; however, for patients whose Lyme disease is not identified early, complex and ongoing symptoms may require more aggressive treatment as acknowledged by the CDC and the International Lyme and Associated Diseases Society (ILADS).
- Treatment of Lyme disease needs to be tailored to the individual patient, and there is a range of opinions within the medical community regarding proper treatment of Lyme disease.
- Coinfection by other tick-borne illnesses may complicate and lengthen the course of treatment.
- The purpose of this act is to ensure that patients have access to treatment for Lyme disease and other tick-borne illnesses in accordance with their needs and the clinical judgment of their physicians.
- The Board [Vermont State Board of Medical Practice] shall not pursue disciplinary action against a physician, physician assistant, or nurse practitioner, as appropriate, solely for the use of medical care recognized by the Guidelines of the CDC, IDSA or ILADS for the treatment of a patient’s symptoms when the patient is clinically diagnosed with Lyme disease or other tick-borne illness.
It should be noted that, in contrast to the IDSA, the ILADS Lyme Guidelines are federally sanctioned by AHRQ and are posted on the NGC. ILADS Lyme Guidelines have also met the IOM Standards for Developing Trustworthy Clinical Practice Guidelines and the GRADE Working Group system for grading the quality of evidence and strength of recommendations.
The CDC Vermont Lyme Corps disseminates public education messages that subvert the patient protections stated in the Vermont H. 123 bill. These include the outdated CDC and IDSA claims that Lyme is hard-to-contract-and-easy-to-diagnose-and-cure. These messages are detailed in UVM blog The Ticks Are Out! Get the Facts About Lyme Disease In Vermont and The Medical Students’ News Publication of the American Academy of Pediatrics (AAP) – Section on Medical Students, Residents & Fellowship Trainees Issue 28, Winter 2016 (pages 5 and 6). [viii] [ix]
- The existence of patients with persistent infection is denied.
- Complications from coinfections are minimized and trivialized.
- The public and practitioners are denied information regarding the range of opinions within the medical community regarding proper treatment of Lyme disease.
- There is little to no message regarding how Lyme treatment needs to be tailored to the individual patient.
- The federally non-compliant IDSA Lyme treatment protocols are advanced as the only treatment option for all patients.
- Practitioners’ clinical diagnoses are suggested to be less valid than the 1995 two-tiered test designed for surveillance purposes.
In addition to promoting the outdated and noncompliant 2006 IDSA Lyme Guidelines, the CDC has trained its Vermont Lyme Corps student members to disseminate misinformation to practitioners and the public. These Lyme Corps messages undermine the core purpose of the Vermont bill “to ensure that patients have access to treatment for Lyme disease and other tick-borne illnesses in accordance with their needs and the clinical judgment of their physicians.” These transgressions can be categorized as explicit misinformation, the denial of patient rights to federally sanctioned treatment options and a neglect of patient centered care.
Apparently, Lyme Corps has also been quite active in Pennsylvania. In 2013, CDC recruited “10 Lyme Corps team members in partnership with Drexel University and the Philadelphia Department of Public Health. Participants attended a 2-day training workshop on clinical and public health management of Lyme disease. Participants kept detailed logs of activities, participated in monthly conference calls, consulted with CDC organizers regularly. From April-May 2013, participants distributed over 1500 printed materials to schools, clinics, parks, etc. They gave 23 presentations to clinical staff at medical practices (average practice size 1,800 patients). Participants also presented to public health officials and a wide variety of adult and children’s groups from the general public. Total direct reach was 917 persons. Participants answered over 200 Lyme disease-related questions on health forums.”[x]
Pennsylvania also has a law regarding Lyme. According to Newsworks July 10 2014article, New Pa. Lyme disease law focuses on education, lacks mandatory tick registry by Jessica McDonald, BILL No.177 is aimed at providing Lyme disease “information to both the public and healthcare providers” and “created a task force to work on prevention and treatment.” [xi] The Pennsylvania Lyme bill also provides some measure of protection in the way Lyme and coinfections are defined and diagnosed. The bill language describing the illness is very current compared to the outdated Lyme misinformation disseminated by IDSA, CDC and Lyme Corps on July 4, 2016.
BILL No.177 defines Lyme disease as a
- clinical diagnosis of a patient by a licensed physician or certified registered nurse practitioner of the presence of signs or symptoms compatible with acute, late-stage, persistent infection with Borrelia burgdorferi”
- “complications related to such infection” and “other acute and persistent manifestations of such an infection”
- or with such “other strains of Borrelia that are recognized by the CDC as a cause of Lyme disease” – this would include Borrelia mayonii and other Borrelia.
- The bill recognizes “Bartonella, babesiosis/piroplasmosis, anaplasmosis, ehrlichiosis or other tick-transmissible illness” – this would include Rocky Mountain Spotted Fever, Southern Tick-Associated Rash Illness, Tick-Borne Relapsing Fever, Tularemia, Anaplasmosis, Colorado tick fever, Powassan encephalitis, Q fever and so forth.
In summary, Bill No.177 acknowledges and recognizes the need to treat persistent or chronic Lyme infection and related complications and coinfections. It also reinforces the right of physicians to make a clinical diagnosis independent of the CDC’s preference for the 1995 two-tiered tests developed for disease surveillance. [xii]
CDC Lyme Corps activities have also been confirmed in Maryland and Virginia. As in Vermont and Pennsylvania, Lyme Corps has disseminated the message that the 1995 two-tiered test designed for surveillance purposes – a test that is 50% inaccurate [xiii] – is needed to validate a clinical diagnosis by a health practitioner.
Both Maryland and Virginia have passed laws whereby any patient who has this outdated two-tiered test must be informed by their practitioner that ‘a negative test does not mean they do not have Lyme.’ The Lyme Corps message insisting on the validity of the two-tiered test undermines the purpose of these laws and endangers the public.
False negative test results often lead to delayed diagnosis and full systemic complications. These complications may include serious heart, nervous system and immune impairments, organ dysfunction, life-altering damage and death. Officials in many states have engaged with Lyme patients who have suffered devastating health, social and financial consequences from false-negative Lyme test results.
According to the CDC, “Lyme Corps is…dedicated to developing a talented, committed team of students and residents who provide Lyme disease education and outreach to both health care providers and the public…Lyme Corps is community-based… members facilitate Lyme disease education in …schools, and community events (farmers’ markets, trail runs, etc.).” [xiv] However, the CDC trains its Lyme Corps members to champion federally noncompliant IDSA Lyme Guidelines. Such members, regardless of talent and commitment, will fail to provide their communities relevant Lyme disease education.
There are other CDC activities that threaten Lyme patients’ legal protections. For example, the CDC Lyme website recently posted an advance publication of the Medscape Volume 22, Number 7—July 2016 Continuing Medical Education (CME) Activity, Current Guidelines, Common Clinical Pitfalls, and Future Directions for Laboratory Diagnosis of Lyme Disease, United States. Four of the article’s five authors are CDC’s DVBD staff and one of them is Lyme Corps’ C. Nelson. Like Lyme Corps, and the CDC/IDSA Lyme Guidelines themselves, the information provided in this CME activity appears to be limited to outdated information.
Therefore, this CME also subverts the Lyme protections detailed in nearly 1/3 of the country. There are additional legal conflicts surrounding the Lyme CME. For example, any state official or health practitioner would be well within their rights to refuse to participate in this CME on the grounds the content contradicts their state protections for Lyme patients and practitioners.
Such state officials and health practitioners should be exempt from this requirement without repercussions to their professional standing or promotions. In almost 1/3 of the country, there are an array of similar legal concerns regarding the adoption of most of the Lyme material currently being disseminated by the CDC.
As previously noted, the CDC Lyme policy and all its programs give singular preference to the noncompliant IDSA Lyme Guidelines. There are four IDSA members – intimately involved with 2006 and pending IDSA Lyme guidelines – who also generate income by acting as expert witnesses on behalf of health insurance companies to deny patients non IDSA treatment protocols and they assist members of medical boards affiliated with the IDSA to sanction doctors who treat patients for chronic Lyme and Lyme with coinfections. [xv]
The IDSA has also taken numerous actions against Lyme patients’ and practitioners’ protections. One such IDSA website post State-Level Lyme Disease Advocacy Efforts openly admits to undermining Lyme patient rights in: California, Connecticut, Maine, Maryland, Massachusetts, Minnesota, Nebraska, New Hampshire, New Jersey, New York, Ohio, Oregon, Pennsylvania, Rhode Island, Texas, Vermont, Virginia, West Virginia and Wisconsin. [xvi] Another such IDSA web announcement is the IDSA’s Lyme Disease Advocacy Efforts. [xvii] The ‘anti-protections’ advocacy letters are detailed.
03/13/2013 – IDSA objects to a Virginia law that requires physicians to provide patients with a written notice explaining the uncertainty of test results for Lyme disease. The Society supports better diagnostics and public education, but the specific communication mandated in the law doesn’t take into account ongoing scientific advances.
04/05/2011 – IDSA has urged lawmakers not to support bills that would restrict the State Board of Medicine from disciplining physicians who prescribe dangerous therapy for Lyme disease.
06/25/2009 – In a letter on the proposed Lyme and Tick-Borne Disease Prevention, Education, and Research Act, IDSA raised concerns about patients being improperly diagnosed with “chronic” Lyme disease and receiving dangerous treatments.
08/07/2007 – IDSA sent a letter to the National Governors Association and National Conference of State Legislatures opposing the prolonged usage of antibiotics in the treatment of “chronic” Lyme disease as well as urging the inclusion of board-certified infectious disease physicians in public hearings on Lyme disease.
As noted, Lyme Corps and other CDC Lyme programs wrongfully subvert state laws that protect Lyme patients and their practitioners. Such programs are the direct responsibility of certain CDC officials. These CDC officials are disregarding a number of federal laws in order to promote the CDC Lyme policy and programs. These violations include the following: [xxii] [xxiii] [xxiv] [xxv] [xxvi] [xxvii]
A breach of public trust by the CDC Directors responsible for protecting the public health and welfare against Lyme epidemic – all these CDC officials are members of IDSA and there are no non-IDSA members among the Directors responsible for CDC’s Lyme policy and programs. [xxviii]
This group of CDC officials show continuous and singular “preferential treatment” for the ‘Lyme product’ of a private medical society, the IDSA. The product is the IDSA Lyme Guidelines; these Guidelines have failed federal criteria for evidence-based medicine.
The promotion of these federally noncompliant IDSA Guidelines make waste of tax dollars and misinform the public. Such actions run contrary to protecting the health and welfare of the public against the Lyme epidemic and they show a strong a lack of “honest effort in the performance of their duties.”
These same officials (employees) show a clear pattern of discrimination against patients handicapped by persistent Lyme infection and Lyme and coinfections and in this regard “do not adhere to all laws and regulations that provide equal opportunity for all Americans regardless of race, color, religion, sex, national origin, age, or handicap.” The term equal opportunity includes equal access to federally sanctioned Lyme treatments. Furthermore, they have created, enforced and/or implemented a series of policies and programs that actively restrict treatment options for Lyme patients and dismiss and trivialize their pain and suffering.
Through Lyme Corps and other activities, and in close partnership with the IDSA, these CDC officials have “misused their own time, misused the time of state officials and subordinates and misused government property” to advance programs and policies that misinform and endanger the public and discriminate against Lyme patients and practitioners who treat Lyme patients.
These behaviors are being undertaken by handful of CDC officials. However, these actions are affecting Lyme patients nationwide. Furthermore, there are now chronic Lyme patients among the government officials found in state and federal agencies. There are now presidential advisers who have chronic Lyme, members of Congress and the Senate who have Lyme and staffers suffering from chronic Lyme. According to one staffer living in Virginia, a recent poll showed Lyme disease to be the number one concern of residences in Northern Virginia.[xxix] Such residents are not concerned about the CDC’s version of Lyme, a simple nuisance illness that is hard-to-contract-and-easy-to-diagnose-and-cure; they are concerned about the complex life-altering illness that is disabling and bankrupting their friends, neighbors and family members.
Residents of Northern Virginia, like many residents in Virginia, Maryland, Vermont, Massachusetts, Ohio, New Jersey, Rhode Island, Pennsylvania, New York, New Hampshire, Minnesota, Maine, Delaware, Connecticut and California have not sat idly by waiting for the federal government to address the Lyme epidemic and take care of Lyme patients. These states’ legislators and citizens have passed laws to take care of this marginalized and vulnerable patient group.
Regrettably, the CDC is making history by undermining state laws that protect Lyme patients, many of whom are debilitated, disabled and financially ruined from illness. CDC discrimination against Lyme patients is resulting in such patients being denied access to federally sanctioned treatments. On July 4th 2016, the rule of law does not appear to apply to CDC Lyme policy and programs.
Bio – Jenna Luché-Thayer’s expertise includes government transparency and accountability and the integration of marginalized groups. Luché-Thayer is informed by three decades of professional policy and grassroots experience in 40 countries. She has extensive experience in congressional relations, testimony and legislation. She has worked with governments, the United Nations, nonprofits and the corporate world and has over 65 sponsored publications. Luché-Thayer received the International Woman’s Day Award for Exemplary Dedication and Contributions to Improving the Political and Legal Status of Women (US government) and built the Highest Ranking Technical Area in Accomplishment, Innovation & Comparative Advantage for United Nations Capital Development Fund.
[i] Sources include Lyme Disease Association and Lyme Disease Organization – two nonprofit organizations that advocate for improved testing, treatments and Lyme awareness.
[ii] This information has been gathered from interviews and the sources will not be disclosed.
[iv] There is federal and state controversy over medical marijuana – medical marijuana is used by many different patients groups to reduce nausea and pain.
[vi] IOM is now the Health and Medicine Divisions (HMD)
[xii] The Council of State and Territorial Epidemiologists (CSTE) is the organization responsible for providing CDC with disease surveillance guidance. In 2011, CSTE redefined the surveillance case definition for Lyme disease. They stated that the two-tiered test is to be used only for surveillance purposes and not for diagnosis. https://wwwn.cdc.gov/nndss/conditions/lyme-disease/case-definition/2011/
[xv] See under Disclosures in article Unorthodox Alternative Therapies Marketed to Treat Lyme Disease http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4490322/
[xxiii] PART 2635 – STANDARDS OF ETHICAL CONDUCT FOR EMPLOYEES OF THE EXECUTIVE BRANCH SUBPART A – GENERAL PROVISIONS § 2635.101 Basic obligation of public service.
[xxiv] Reference : 5 C.F.R. Part 2635 As amended at 76 FR 38547 (July 1, 2011) – Page 55 SUBPART G – MISUSE OF POSITION § 2635.701
[xxv] Page 57 (d) Performance of official duties affecting a private interest.
[xxvi] Page 59 § 2635.704 Use of Government property.
[xxvii] Page 60 § 2635.705 Use of official time. (b) Use of a subordinate’s time.
[xxviii] This is the chain of command: DVBD L. Petersen reports to B. Bell à National Center for Emerging and Zoonotic Infectious Diseases Director B. Bell reports to R. Khabbaz à Infectious Diseases Director R. Khabbaz reports to CDC Director. Furthermore, C. Nelson, the DVBD official responsible for implementation of Lyme Corps joined the American Academy of Pediatrics (AAP) in 2014. In 2015, the AAP was selected as one of the key IDSA collaborators to develop the new Lyme Guidelines.
[xxix] Information provided during May 2016 meeting by staffer representing member on the Science Subcommittee on Oversight