We, the undersigned individuals and organizations, respectfully submit this petition to the U.S. Department of Justice (DOJ) to request a formal policy review to address systemic inequities in access to medical care, insurance coverage, and government programs for individuals affected by Persistent/Chronic Lyme Disease (PLD/CLD).

The failure of federal agencies and healthcare institutions to provide equitable treatment for PLD/CLD patients has resulted in discrimination, medical neglect, and systemic barriers to essential services, constituting a violation of fundamental civil rights protections and burdening the U.S. economy with billions in healthcare and disability costs annually. As detailed in the executive summary, these inequities manifest through denied medical care, barriers to disability protections, and structural problems within federal agencies that have created patterns of discrimination requiring immediate intervention.

This petition documents how restrictive diagnostic criteria, outdated treatment guidelines, and preferential treatment of certain medical perspectives have led to widespread suffering, financial ruin, and preventable disability among patients with PLD/CLD. Through policy review and enforcement of existing civil rights protections, the DOJ has both the authority and obligation to address these injustices and ensure equal protection under the law for this marginalized patient population.

Examples of Systemic Discrimination
The systemic discrimination faced by PLD/CLD patients has devastating consequences on individual lives. The following anonymized cases illustrate the real-world impact of these policies:

Case 1: Sarah M., 42, Pennsylvania
After developing neurological symptoms following a tick bite, Sarah tested negative on the CDC-recommended two-tier test but was clinically diagnosed with Lyme disease. When her symptoms persisted after short-term antibiotic treatment, her insurance company denied coverage for continued treatment, citing the IDSA guidelines. Despite documentation from four physicians about her disability, her SSDI application was denied twice. She lost her job as a software engineer and depleted her life savings paying for treatment. Her case illustrates how restrictive guidelines directly violate her rights under the ADA to receive appropriate medical care and reasonable accommodations.

Case 2: Michael T., 55, Connecticut
Michael, a former construction worker, developed severe joint pain, fatigue, and cognitive impairment after a tick bite in 2020. Despite clear symptoms and a documented tick bite, he was denied diagnosis because he didn’t meet the surveillance case definition criteria. Three different physicians refused to treat him, citing fear of medical board investigation for prescribing extended antibiotics. His disability claim was denied because his condition was “medically unexplained” rather than recognized as PLD/CLD. He now relies on Medicaid and food stamps. This case demonstrates how the misapplication of surveillance case definitions for clinical diagnosis directly violates Section 504 protections.

Case 3: Jennifer L., 28, California
A special education teacher, Jennifer developed cardiac and neurological complications from undiagnosed Lyme disease. When she finally found a physician willing to treat her persistent symptoms, the doctor was investigated by the state medical board for treating outside IDSA guidelines. Jennifer’s university denied her reasonable accommodations for her doctoral program because her PLD/CLD diagnosis was “controversial,” constituting a violation of Title II of the ADA. She has since been unable to complete her education or return to teaching, placing her on permanent disability.

BASIS FOR REVIEW
1. Denial of Medical Care & Discrimination in Healthcare

• PLD/CLD patients often face refusal of treatment, misdiagnosis, and dismissal by healthcare providers, leading to unnecessary suffering and disability.
• Many medical professionals rely exclusively on outdated diagnostic guidelines that do not account for chronic manifestations of Lyme disease, contributing to discriminatory treatment and delayed care.[1], [2]
• This practice directly violates Title III of the ADA (42 U.S.C. § 12182), which prohibits discrimination on the basis of disability in places of public accommodation, including healthcare facilities.

2. Barriers to Government Programs & Disability Protections

• PLD/CLD patients frequently encounter denials of Social Security Disability Insurance (SSDI) and other federal benefits due to outdated policies that fail to recognize the severity of the disease.
• Under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, individuals with disabilities are entitled to protections and accommodations—yet PLD/CLD patients routinely experience discrimination in employment, education, and access to government services.
• These barriers constitute violations of 28 CFR § 35.130, which mandates that public entities provide individuals with disabilities an equal opportunity to benefit from all programs, services, and activities.

3. Health Disparities & Civil Rights Violations

• The DOJ’s Civil Rights Division has a duty to investigate disparities in healthcare access when they result in discrimination against individuals with disabilities or chronic illnesses.[3]
• The HHS Office for Civil Rights and the Centers for Medicare & Medicaid Services (CMS) must be held accountable for ensuring nondiscriminatory access to medical care and insurance coverage for PLD/CLD patients, as required by Section 1557 of the Affordable Care Act.

4. Patient Harm and Public Health Consequences

• Thousands of PLD/CLD patients are denied treatment due to widely followed clinical practice guidelines that misrepresent science and restrict access to care, leading to severe disability, unemployment, and suffering. 
• Lyme disease costs the U.S. healthcare system billions annually, with chronic cases representing a disproportionate burden. Productivity losses from disability and reduced work capacity drain the economy as patients exhaust savings and become dependent on public assistance when timely treatment could have prevented these outcomes.
• Many patients experience medical gaslighting, with physical symptoms attributed to psychological factors. This delegitimization causes distress and isolation. Meanwhile, exclusion from clinical research perpetuates ignorance about effective treatments, creating a cycle of neglect that harms patients.

REQUESTED ACTIONS
We respectfully urge the DOJ to take the following actions:

1. Conduct a Policy Review: Initiate a formal review of DOJ, HHS, and CMS policies regarding access to healthcare and disability protections for individuals with PLD/CLD. We request this review be completed within 180 days of petition acceptance, with interim guidance issued within 90 days.

2. Investigate Systemic Discrimination: Examine cases of PLD/CLD patients being denied medical treatment, federal benefits, and workplace accommodations under the ADA, Section 504 and the Affordable Care Act. Appoint a special task force dedicated to investigating patterns of discrimination against PLD/CLD patients.

3. Issue Guidance to Federal Agencies: Direct HHS, SSA, and CMS to update policies ensuring that PLD/CLD patients are provided equitable access to medical care, disability benefits, and federal protections.

4. Hold Public Hearings: Facilitate discussions with patients, healthcare professionals, legal experts, and advocacy groups to address barriers to care and potential civil rights violations associated with PLD/CLD.

5. Establish Compliance Metrics: Develop and implement specific metrics to measure improvements in PLD/CLD patient access to care, disability benefits, and accommodations following policy revisions.

6. Appoint a Special Monitor: Designate an independent special monitor to oversee implementation of policy changes and ensure compliance with civil rights laws as they pertain to PLD/CLD patients.

BACKGROUND
Chronic Lyme disease is a major public health crisis. Of the estimated 476,000 Americans who are diagnosed with Lyme disease each year, between 10 and 20 percent continue to have symptoms that seriously impact their health, finances and quality of life, despite receiving antibiotic treatment consistent with clinical practice guidelines endorsed by CDC and NIH.[4], [5], [6], [7]

CDC, NIH and many researchers refer to the chronic symptoms experienced by many Lyme disease patients as Post-Treatment Lyme Disease Syndrome (PTLDS).[8] Patients, advocates, and many physicians who specialize in treating Lyme disease[9] prefer the term “chronic Lyme disease,” which has a more comprehensive case definition that covers significantly more patients than the case definition for PTLDS.[10], [11], [12]

HHS Tick-Borne Disease Working Group Identifies Inequities with PLD/CLD
The HHS Tick-Borne Disease Working Group’s 2022 report to Congress[13] identifies the prioritization of health equity for sufferers of tick-borne diseases as a major new theme. Its Access to Care and Education Subcommittee report[14] focuses on inequities faced by patients with “persistent Lyme disease/chronic Lyme disease (PLD/CLD).”

The Subcommittee found that, “Patients with PLD/CLD encounter many barriers to accessing care, including structural barriers created by insurers and medical boards. Some cannot find local clinicians to treat them, and many report that their care is not covered by insurance.”

Health inequities faced by patients with PLD/CLD include:

• Decreased quality of life (Johnson et al., 2014; Rebman et al., 2017),
• Increased rates of disease (Fallon et al., 2021),
• Increased disease severity (Dennison et al., 2019),
• Preventable death (Congressionally Directed Medical Research Programs, 2022; Dahlgren et al., 2012; Marx et al., 2020), and
• Limited access to care (Johnson et al., 2011).

The Working Group determined that “Identifying and changing the educational, research, and administrative policies, processes, and practices that result in barriers to receiving and providing care is essential to achieving health equity for these patients.”

The Lyme Disease Controversy and Impact of the IDSA Guidelines
The diagnosis and treatment of Lyme disease have been the subject of significant controversy, particularly when the disease progresses beyond the early stage and symptoms persist. The science surrounding Lyme disease remains in its early stages, with considerable research gaps, although the evidence of persistent infection in humans, after short-term treatment, is growing. NIH funded treatment studies have produced conflicting results, and their small sample sizes limit applicability to broader patient populations.

Divergent Medical Perspectives: IDSA vs. ILADS
Two major medical organizations stand at opposing ends of this debate. The Infectious Diseases Society of America (IDSA) maintains Lyme disease can be effectively treated with short courses of antibiotics and that persistent infection is rare. Conversely, the International Lyme and Associated Diseases Society (ILADS) argues that short-course antibiotic treatments frequently fail, and recommends that “the duration of therapy be guided by clinical response rather than by an arbitrary treatment course.” [15], [16]

Misapplication of Surveillance Criteria
The IDSA guidelines are based on the narrow definition of Lyme disease, in the surveillance case definition for Lyme disease, which CDC explicitly states is “not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient's health needs.” [17]

ILADS Evidence-Based Approach to Persistent Lyme Disease
ILADS physicians and researchers have documented numerous peer-reviewed studies supporting the existence of persistent Lyme infection despite standard antibiotic treatment. Their guidelines emphasize that B. burgdorferi can evade immune detection, form biofilms, and persist in tissues even after standard antibiotic courses. ILADS cites animal studies showing that the Lyme bacterium can survive in tissues despite antibiotic treatment that meets or exceeds human protocols. Furthermore, ILADS points to studies demonstrating that longer duration antibiotic therapy can lead to improved outcomes for many patients with persistent symptoms.

The Role of Co-infections and Individual Treatment Plans
The IDSA guidelines have been criticized for not adequately addressing the complexity of tick-borne illnesses, including the impact of co-infections and other co-morbidities that often require different treatment approaches.

For example, the black-legged tick (Ixodes scapularis) often transmits Anaplasma phagocytophilum, responsible for human granulocytic anaplasmosis (HGA), and several species of Babesia, which causes babesiosis.[18]  Studies have shown that among individuals with early Lyme disease, depending on their geographic location, approximately 2–12% are co-infected with HGA, and 2–40% with babesiosis.[19]

The study, “Severity of Lyme disease with persistent symptoms. Insights from a double-blind placebo-controlled clinical trial,” [20] found that “Tickborne coinfections may increase the severity and duration of infection with B. burgdorferi.”

Patient-Centered Treatment Approaches
ILADS advocates for a patient-centered approach that recognizes the heterogeneity of Lyme disease presentations. Their guidelines emphasize shared medical decision-making, where patients are informed about treatment options, potential benefits, and risks. This approach acknowledges that treating Lyme disease often requires individualized care plans that may evolve as the patient responds to treatment.

In contrast to the more rigid IDSA protocols, the ILADS guidelines state: “In choosing between regimens, clinicians should consider the patient’s responsiveness to previous treatment for Lyme disease, whether the illness is progressing and the rate of this progression; whether untreated co-infections are present; whether the patient has impaired immune system functioning or has received immunosuppressant corticosteroids and whether other co-morbidities or conditions would impact antibiotic selection or efficacy.”

Quality of Life Considerations
ILADS guidelines incorporate quality of life measurements as important outcome indicators when evaluating treatment efficacy. This patient-centered metric acknowledges that improvement in functionality and symptoms may be meaningful even when laboratory markers don’t show complete resolution of infection. ILADS physicians point out that many well-accepted treatments for other chronic conditions are continued because they improve quality of life, even when they don't completely eliminate the underlying disease process.

The IDSA Influence Over Lyme Disease Treatment Policies
Despite scientific uncertainty, IDSA wields considerable influence over Lyme disease treatment policies. IDSA members serve as peer reviewers and editors for leading medical journals, influence antibiotic treatment protocols, and act as expert witnesses in medical board cases against physicians who do not adhere to IDSA guidelines. This level of control has led to concerns that IDSA’s guidelines function as de facto mandatory treatment protocols, restricting physician discretion and patient access to care.

In 2005, IDSA convened a panel to revise its Lyme disease treatment guidelines. However, physicians with differing viewpoints were excluded from participation, raising concerns about bias. The revised guidelines, released in 2006, further restricted treatment options, prompting nineteen U.S. Congress members to request a review. The guidelines’ impact extended beyond clinical practice, as insurance companies often denied coverage for treatments not aligned with IDSA’s recommendations.

In response to these concerns, the Connecticut Attorney General launched an antitrust investigation into IDSA’s guideline development process.[21] The investigation revealed significant flaws, including conflicts of interest and exclusion of dissenting voices. While a settlement required an independent review of the guidelines, the review process itself was compromised by a lack of impartiality.

IDSA contends that its guidelines are not mandatory, but its actions—including expert testimony against noncompliant physicians and opposition to legislation protecting alternative treatments—suggest otherwise. This controversy underscores broader issues in medical guideline development, particularly regarding conflicts of interest, the suppression of competing viewpoints, and the need for greater transparency and accountability in the establishment of treatment protocols.[22]

Consequences of the Dominance of the IDSA Guidelines
The dominance of the IDSA guidelines has had serious consequences:

• Insurance companies rely on IDSA guidelines to deny coverage for long-term treatment, leaving patients with no access to effective care.
• Many physicians refuse to diagnose or treat chronic Lyme disease due to fear of disciplinary action from medical boards.[23]
• Patients who do not meet the IDSA’s restrictive diagnostic criteria often remain undiagnosed and untreated, leading to severe, preventable disability.
• Patients and patient advocacy groups are attacked and vilified.
• Suppression of competition that favors IDSA-aligned physicians and researchers and violates the Sherman Antitrust Act.

1. Barriers to Insurance Coverage: Due to restrictions imposed by the IDSA guidelines, many insurers refuse to pay for long-term treatment.[24] This creates an enormous financial burden because patients must pay out-of-pocket for necessary treatment.[25] Even patients with positive blood tests and the tell-tale rash are frequently denied coverage. With the help of IDSA reviewers, insurance denials often include the message, “There is no evidence that this patient ever had Lyme disease,” regardless of medical evidence.

Because of the insurance quagmire, patients are unable to easily find doctors who will diagnose or treat Lyme disease, particularly when the bacterium has become entrenched. As a result, they are forced to seek help outside of traditional medical channels.

Without medical help, patients are left to wander endlessly from one specialist to another or fend for themselves outside of insurance networks just as HIV/AIDS patients did during the early years of the HIV/AIDS crisis.[26] To add to the burden of illness, Lyme disease patients are also saddled with financial hardship.

2. Doctors Targeted and Investigated: When treatment goes beyond the IDSA guidelines, doctors risk becoming the focus of medical board investigations. Good doctors who provide patients with evidence-based treatments recommended by the ILADS guidelines are targeted, while doctors who follow the IDSA guidelines and deny treatment to patients who are later proven to have Lyme face little or no repercussions.

Because of these attacks, many doctors refuse to provide evidence-based long-term treatment[27] or combination therapy to patients with persistent symptoms. This creates a critical shortage and forces many patients to travel out of state to receive treatment. Patients who cannot afford the travel either remain sick or are forced to seek out alternative treatments.

The suppression of alternative medical perspectives has led to systemic discrimination against PLD/CLD patients, violating their rights to equitable medical care and government protections.

3. Direct Harm to Patients: The restrictive IDSA guidelines cause severe harm to PLD/CLD patients by creating a systemic framework of neglect. These guidelines enable insurance companies to routinely deny coverage for necessary treatments, forcing patients into financial ruin as they pay out-of-pocket for care. By narrowly defining diagnostic criteria and treatment protocols, the IDSA guidelines effectively prevent physicians from using clinical judgment.

The resulting treatment delays cause preventable progression to serious disability, while patients exhaust savings and lose homes, careers, and financial stability. This IDSA-driven system of restricted care creates a medical poverty trap that devastates lives, when appropriate treatment could have prevented both health decline and economic hardship.

4. Patients and Advocates Vilified: In a series of public statements and in articles published in influential medical journals, authors of the IDSA guidelines have attacked and vilified patients with PLD/CLD and patient advocacy groups.

The article, “Antiscience and Ethical Concerns Associated with Advocacy of Lyme Disease,” published in Lancet Infectious Diseases[28], was co-authored by IDSA guidelines authors. The article vilifies Lyme patients and advocates and accuses them of being part of an “antiscience movement.” The article claims there is “no microbiological evidence for persistence of B. burgdorferi,” and that “Lyme disease activists have created a parallel universe of pseudoscientific practitioners, research, publications, and meetings.”

Rather than address the problem, the recurring theme is that Lyme patients and advocacy groups are the problem. Many of these very sick patients are forced to educate themselves about relevant science and newer, evidence-based treatment options. Something is wrong when large numbers of chronically ill patients struggling with a burden of sickness must conduct their own research and fund scientific discovery because widely followed medical guidelines do not provide an acceptable standard of care.

5. Legal Challenges and Continuing Inequities: A federal antitrust lawsuit[29] highlights how major health insurers have relied on the IDSA guidelines to deny coverage for evidence-based treatments, forcing patients to pay exorbitant out-of-pocket costs.

Despite the fact that the insurance company defendants settled the lawsuit, the harm from systematic inequities in access to medical care and government programs for individuals affected by PLD/CLD continues.

The most recent guideline, the IDSA/AAN/ACR 2020 Guidelines for the Prevention, Diagnosis, and Treatment of Lyme Disease15, continues to misrepresent science and restrict access to care and insurance coverage.[30]

STRUCTURAL BARRIERS WITHIN FEDERAL AGENCIES
Major structural barriers that restrict progress and contribute to misdiagnosis, denial of care, and suffering for large numbers of patients are the endorsement of unreliable diagnostic tests for Lyme disease by CDC and NIH, and use of the surveillance case definition for Lyme disease as the basis for diagnosis and as the entrance criteria and/or end point for federally funded research. Another structural barrier is preferential treatment of the IDSA Guidelines by officials, scientists and research program officers at CDC and NIH, responsible for policies, practices and publications for Lyme disease.

The failure of federal agencies to address these barriers, outlined below, has contributed to the ongoing denial of care, systemic discrimination, and unnecessary suffering for PLD/CLD patients.

1. Reliance on Unreliable Diagnostic Tests
The CDC and NIH endorse the two-tier serology test for Lyme disease, which has poor sensitivity and high false-negative rates, particularly in early infection. A meta-analysis of 20 years of published data[31] found that the test’s sensitivity is:

• 35.4% in the acute stage,
• 64.5% in the convalescent stage, and
• only 59.5% overall.

Despite these deficiencies, many physicians rely solely on these tests for diagnosis, leading to widespread misdiagnosis and lack of treatment.

Patients with Lyme disease who test negative, frequently remain undiagnosed and untreated. Untreated or insufficiently treated Lyme disease can cause neurological, musculoskeletal and cardiac damage and, occasionally, death.[32], [33]

The risk of treatment failure and development of chronic illness is significantly higher in patients who were undiagnosed or misdiagnosed during the early stages of the infection, with estimates ranging from 30 – 40% for late diagnosed cases. The limited sensitivity of standard laboratory tests means that misdiagnosis and delays in diagnosis and treatment occur frequently in the community practice of medicine.[34]

2. Misuse of Lyme Disease Surveillance Case Definition
The surveillance case definition for Lyme disease was developed for epidemiological tracking, not for clinical diagnosis. The CDC states:

“Surveillance case definitions are not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient’s health needs.” 17

However, many healthcare providers incorrectly use this definition as a diagnostic standard, excluding patients who do not meet the criteria. This results in delayed or denied treatment, worsening health outcomes, and an increased burden on disability and welfare programs.[35]

Use of the surveillance case definition as an entrance criterion for research discriminates against patients with PLD/CLD who are excluded from these studies because they fall outside the narrow definition.[36]

Clinical trials for previously treated Lyme disease often exclude over 90% of screened patients due to restrictive inclusion criteria, limiting the applicability of findings to the broader patient community.[37], [38] A study of over 17,000 individuals in the MyLymeData registry demonstrated this issue, showing that requiring a rash or positive Western blot excluded 35% of patients, and additional symptom-based criteria left only 39% eligible.[39]

The TBDWG Access to Care and Education Subcommittee determined that “Taken together, policies and processes that promote the use of Lyme disease surveillance case criteria as diagnostic and entrance criteria for research studies are structural determinants of health that perpetuate the health disparities experienced by many patients with Lyme disease.”

3. Preferential Treatment of the IDSA Guidelines
Many officials, scientists, and research program officers at CDC and NIH responsible for policies related to Lyme disease are either members of the Infectious Diseases Society of America (IDSA) or otherwise subscribe to the IDSA dogma and discount or ignore research that supports the ILADS position.

The preferential treatment of IDSA-affiliated research over competing scientific perspectives has significantly distorted the body of Lyme disease research that NIH funds, violating the fundamental principle of impartiality in research funding.

By favoring IDSA’s perspective while preventing funding for research that explores alternative views, or by aligning priorities and programs with the IDSA dogma, these employees are violating 5 C.F.R. § 2635.101(b)(8) Standards of Ethical Conduct for Employees of the Executive Branch, which states:

“Employees shall act impartially and not give preferential treatment to any private organization or individual,” and that “Employees shall endeavor to avoid any actions creating the appearance that they are violating the law or the ethical standards set forth in this part.”

This bias has led to the systematic suppression of independent, peer-reviewed research that questions IDSA’s restrictive guidelines, limiting scientific innovation and harming thousands of patients suffering from chronic Lyme disease. This has stifled scientific debate, compromised the integrity of NIH’s research grant process, and contributed to the ongoing neglect of chronic Lyme disease patients.

LEGAL FRAMEWORK
The protections afforded by Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 establish a critical legal framework for addressing the systemic inequities experienced by individuals with PLD/CLD. These laws prohibit discrimination against individuals with disabilities and ensure their equal access to federally funded programs and services.

Section 504 of the Rehabilitation Act of 1973
Section 504 mandates that no qualified individual with a disability shall be excluded from, denied benefits of, or subjected to discrimination under any program or activity receiving federal financial assistance. Many symptoms and impairments associated with PLD/CLD, including neurological dysfunction, severe fatigue, cognitive impairment, and mobility limitations, qualify these patients as individuals with disabilities under Section 504.

Despite these legal protections, many PLD/CLD patients do not have an equal opportunity to access federally funded programs, including Medicare, Medicaid, Veterans benefits, and health insurance subsidized under the Affordable Care Act. Systemic barriers, including reliance on outdated and restrictive clinical guidelines, have led to the misdiagnosis, denial of care, and exclusion from critical services that should be accessible under Section 504 protections.

The Americans with Disabilities Act of 1990
The Americans with Disabilities Act (ADA) extends protections against discrimination to all areas of public life, including healthcare, employment, education, and government services. Under the ADA, individuals with PLD/CLD who experience substantial limitations in major life activities qualify as individuals with disabilities entitled to reasonable accommodations.[40]

However, PLD/CLD patients frequently encounter systemic discrimination when seeking medical care, insurance coverage, and disability benefits. This is largely due to restrictive guidelines established by the Infectious Diseases Society of America (IDSA), the American Academy of Neurology (AAN), and the American College of Rheumatology (ACR), which define Lyme disease narrowly and do not acknowledge chronic manifestations of the illness.

The Affordable Care Act
The Patient Protection and Affordable Care Act of 2010 (ACA) provides additional legal protections that are directly relevant to PLD/CLD patients. Section 1557 of the ACA prohibits discrimination on the basis of disability in health programs or activities that receive federal financial assistance or are administered by an Executive Agency or any entity established under Title I of the ACA.

The ACA explicitly reinforces existing disability protections while expanding coverage options for individuals with pre-existing conditions. Despite these provisions, PLD/CLD patients continue to face significant barriers when seeking appropriate care:

• Insurance companies frequently deny coverage for necessary treatments based on restrictive IDSA guidelines, forcing patients to pay out-of-pocket for medically necessary care.
• The ACA’s essential health benefits requirements are undermined when insurers use outdated clinical guidelines to determine medical necessity for PLD/CLD treatments.
• While the ACA prohibits lifetime and annual limits on essential health benefits, many PLD/CLD patients are unable to access benefits due to diagnostic barriers and treatment restrictions.
• The ACA’s provisions for preventative services and chronic disease management are not being equitably applied to PLD/CLD patients, who often face exclusion from comprehensive care management programs.

The systematic denial of coverage for evidence-based PLD/CLD treatments directly contradicts the ACA’s intent to increase access to care and reduce health disparities. This constitutes discrimination against individuals with disabilities and chronic conditions that should be protected under federal law.

JURISDICTION
The U.S. Department of Justice (DOJ), Civil Rights Division, Disability Rights and Special Litigation Sections have jurisdiction over this matter because the systemic discrimination against PLD/CLD patients constitutes a violation of federal civil rights laws and disability protections.

1.  Disability Rights Section: Under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, individuals with PLD/CLD are entitled to equal access to medical care and government services. The persistent denial of treatment, insurance coverage, and disability accommodations constitutes discrimination based on disability. Federal agencies and healthcare institutions must ensure compliance with these laws.

2.  Special Litigation Section: The Special Litigation Section has the authority to investigate patterns or practices of discrimination within government agencies and public health institutions. The systemic exclusion of PLD/CLD patients from proper diagnosis and treatment, coupled with the suppression of alternative medical guidelines, demonstrates a widespread failure to uphold legal protections for affected individuals.

Given the extensive evidence of structural barriers, medical discrimination, and the violation of disability rights, the DOJ has a clear mandate to investigate and intervene in this matter to protect the civil rights of PLD/CLD patients.

ECONOMIC IMPACT
Undiagnosed, untreated, or inadequately treated Lyme disease places a significant burden on the U.S. economy, driving up costs related to unemployment, Medicaid, Medicare, disability benefits, and welfare as affected individuals lose the ability to work and perform daily activities. 

Productivity losses from disability and reduced work capacity drain the economy, but patients bear the heaviest burden. Many exhaust savings, face substantial medical bills annually, and incur costs for specialized treatment and lost wages, ultimately forcing them into dependence on public assistance when timely treatment could have prevented these outcomes.

A 2019 analysis published in BMC Public Health found that close to 2 million Americans suffer from PTLDS.[41] The number of cases is likely many times more when the case definition for chronic Lyme disease is used.11

When misdiagnosis and underreporting are factored in, the economic burden of this epidemic is likely to be much greater as undiagnosed and untreated Lyme disease patients advance to the costly specialties of neurology, rheumatology, orthopedics, and cardiology.

With an average societal burden of $2,000 per patient, for all forms of Lyme disease, according to a 2022 study published in Emerging Infectious Diseases[42], the annual burden on the U.S. economy for chronic Lyme disease is at least $4 billion and many times greater when under-reporting is taken into account.[43],  [44]

According to the HHS Tick-Borne Disease Working Group 2018 report to Congress,

“A comprehensive understanding of the full economic and societal cost [of Lyme disease] remains unknown. It is likely orders of magnitude higher and potentially a $50- to $100-billion-dollar problem for the United States, although more research is needed (Vanderhoof & Vanderhoof-Forschner, 1993; Zhang et al., 2006).” [45]

BENEFITS OF ELIMINATING SYSTEMIC INEQUITIES
Eliminating systemic inequities in access to medical care and government programs for individuals with PLD/CLD will yield significant social and economic benefits.

1. Improved Health Outcomes: Ensuring equitable access to timely and effective treatment will reduce disease progression, prevent long-term disabilities, and improve the overall well-being of affected individuals.

2. Reduced Healthcare Costs: Addressing PLD/CLD-related inequities will lower healthcare expenditures by reducing emergency room visits, hospitalizations, and costly long-term care needs that arise from untreated or mismanaged illness.

3. Increased Workforce Participation: Many PLD/CLD patients who are currently disabled due to inadequate treatment and lack of accommodations could regain functionality and return to the workforce, increasing productivity and economic contributions.

4. Lower Disability and Social Welfare Costs: Ensuring appropriate medical care will reduce dependency on Social Security Disability Insurance (SSDI), Medicaid, and other government assistance programs, leading to significant cost savings for taxpayers.

5. Greater Economic Stability for Families: Many families with members who have PLD/CLD face financial devastation due to high out-of-pocket costs for treatment, loss of income, and caregiving burdens. Equitable healthcare policies will alleviate these financial hardships and improve economic stability for affected households.

RESPONSE TO COUNTERARGUMENTS
We acknowledge several common counterarguments to our position but find them insufficient to justify the continued discrimination against PLD/CLD patients:

Counterargument 1: Extended antibiotic treatment for chronic Lyme disease lacks sufficient scientific evidence and may pose risks to patients.

Response: CDC, NIH and IDSA cite NIH-funded, double-blind, randomized, placebo-controlled trials in claiming, there is substantial risk, with little or no benefit, associated with additional antibiotic treatment for patients who have long-standing subjective symptoms.

However, a rigorous biostatistical review of the NIH trials, published in November 2012 in Contemporary Clinical Trials, determined that “long term treatment can be beneficial” and explains that “significant findings and errors may arise when disagreement and uncertainty exists in the medical community, as is the case with Lyme disease.” [46], [47], [48]

The study, “Severity of Lyme disease with persistent symptoms. Insights from a double-blind placebo-controlled clinical trial” [49]  analyzed data from a double-blind, placebo-controlled trial to assess the severity of Lyme disease in patients with persistent symptoms. The findings suggest that “Prolonged antibiotic therapy may be useful and justifiable in patients with persistent symptoms of Lyme disease and coinfection with tickborne agents” and that “Tickborne coinfections may increase the severity and duration of infection with B. burgdorferi.”

Moreover, many standard medical treatments carry risks, yet physicians and patients are allowed to weigh these risks against potential benefits in other conditions—PLD/CLD should not be singled out for different treatment.16

Counterargument 2: Allowing physicians to diagnose and treat outside established guidelines could lead to improper care.

Response: Medical practice routinely allows for clinical judgment and flexibility in treatment approaches for complex conditions with uncertain pathophysiology.17 Physicians should be permitted to exercise their professional judgment in diagnosing and treating PLD/CLD, just as they do for other complex conditions like fibromyalgia, chronic fatigue syndrome, and autoimmune disorders. The current restrictive approach uniquely discriminates against PLD/CLD patients and their physicians.

Counterargument 3: Federal agencies must rely on the best available evidence.

Response: Federal agencies have an obligation to consider the full spectrum of scientific evidence, not just that which aligns with one professional society’s perspective. The preferential treatment given to IDSA-affiliated researchers and viewpoints suggests a systematic bias that undermines scientific objectivity and progress. This bias directly harms patients and violates the principles of impartiality required of federal agencies.

CONCLUSION
For decades, individuals with PLD/CLD have suffered from systemic neglect, medical discrimination, and exclusion from essential services that other patient populations routinely access. This petition has documented how federal agencies, healthcare institutions, and insurance companies have created and perpetuated barriers that violate the civil rights of PLD/CLD patients through restrictive diagnostic criteria, biased research funding, and preferential treatment of guidelines that limit access to care.

The Department of Justice has both the authority and responsibility to address these injustices. The legal protections established by Section 504 of the Rehabilitation Act, the Americans with Disabilities Act, and the Affordable Care Act provide clear mandates against the discrimination that PLD/CLD patients routinely face. When these protections are systematically undermined, as demonstrated throughout this petition, DOJ intervention becomes not just appropriate but necessary.

Beyond the legal imperatives, addressing these inequities would yield significant social and economic benefits. The current approach forces patients into disability and financial ruin when timely treatment could restore health and productivity. With estimated annual economic costs of at least $4 billion—potentially reaching $100 billion when accounting for all impacts—resolving these barriers represents not only a moral imperative but a fiscal one.

The requested policy review, investigation of discriminatory patterns, and updated guidance to federal agencies would create a foundation for meaningful change. By ensuring that individuals with PLD/CLD receive the medical care, disability protections, and government support to which they are legally entitled, the DOJ can help transform thousands of lives while reducing the economic burden on both individuals and society.

We urge immediate action to correct these long-standing injustices and appreciate your prompt attention to this matter. The PLD/CLD community awaits your response with hope that decades of systemic discrimination will finally be addressed through decisive federal action.

We appreciate your prompt attention to this matter, and look forward to your response.

REFERENCES

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[2]. Rebman AW, Aucott JN. Post-treatment Lyme disease as a model for persistent symptoms in Lyme disease. Front Med. 2020;7:57. doi:10.3389/fmed.2020.00057

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