How Long Will Empty Promises Placate the Lyme Community?

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How Long Will Empty Promises Placate the Lyme Community?

Jenna Luché-Thayer. May 30, 2022

Government accountability to those caring for and those living with Lyme and tickborne diseases (Lyme/TBD) is within reach. The success of HIV/AIDS activism identifies those underexploited opportunities and a pathway to achieving government accountability for the Lyme/TBD community. ?

This pathway includes the establishment of government performance measurements, expanding Lyme/TBD education to include rights education, and ensuring research dollars are spent on infection control.

Introduction

I have been advocating for marginalized groups since the 1980s. At that time, my principal area of advocacy was gender equality, political empowerment of women and efforts to address violence against women. I also supported HIV/AIDS activism during the early days of the Dallas Buyers Club; a time when many were denied care and many women infected with HIV were not recognized as having AIDS under the government’s restrictive case definition for the disease.

Over the next two decades I worked to improve access to healthcare, economic opportunity, education and political representation for many marginalized groups in developing nations and food security in poor areas of the United States.?My career advising the US government and the United Nations was then disrupted by ever increasing and mysterious waves of debilitating illness that made it impossible to work and then to even function.

After being misdiagnosed with lupus, multiple sclerosis and other grave conditions for a decade, I was finally correctly diagnosed with Lyme disease and other tickborne diseases (TBD).?Following many months of antimicrobial treatment, I began to recover some quality of life and capacity to resume work.

While undertaking my initial treatment, I learned it was very common for Lyme/TBD patients to be misdiagnosed for years. Then, when finally diagnosed correctly, they are often denied access to the months of antimicrobial treatment needed to control the broadly disseminated and central nervous system infection common to late stage Lyme. And it was often the case, that those who were able to access this care, found the costs of their care were then denied by insurance.

These circumstances led me to advocating for access to diagnosis and treatment for the Lyme disease patient community. Much of my own professional success has been gained by learning from others' successes. In the case of Lyme advocacy, I decided the many successes of HIV/AIDS activism would be very relevant.

HIV/AIDS Activism: A Pathway to Success

In the United States, the Lyme disease community and HIV/AIDS community share a common history. Lyme Disease and HIV/AIDS were both “discovered” in 1981.?Both diseases can disable, kill and be passed from mother to child. Every year, approximately 50,000 persons living in the United States are infected with HIV while more than 470,000 persons are infected by the bacterial infection that causes Lyme disease. Without treatment, both diseases can disable and kill.

Both those living with HIV/AIDS and those living with Lyme/TBDs have been medically marginalized and socially stigmatized. In the 1980s, the HIV/AIDS community in the US was largely stigmatized through messaging that encouraged hateful homophobia; this messaging continued in the1990s even after it was known the HIV virus commonly infects heterosexual women.???

The US-based stigmatizing of the Lyme/TBD community has been less overtly hateful but no less successful. Researchers funded by the National Institutes of Health (NIH) have wrongly stated the majority of those suffering from chronic Lyme complications were neurotic well-to-do white women seeking attention by claiming they and their children suffered from unverifiable but serious debilitations.

In addition to funding overt sexism, the NIH has funded multiple articles that broadly impugn the integrity of all those living with chronic Lyme/TBD, wrongly dismiss their illness as only somatic/hypochondriacal in nature and have even claimed that this debilitated enfeebled patient group are a dangerous physical threat to medical and scientific persons.

Despite messaging that encouraged homophobia and other attempts at scapegoating, HIV/AIDS activists have succeeded in securing broad government support that has resulted in:

—a greatly expanded case definition that encompasses the complexity of the disease as found among differing subgroups within their patient community

—more accurate diagnostic testing, improved treatments, preventative care, and improved access to diagnosis, preventions and treatment care

—influential patient representation in critical governmental decision processes regarding HIV/AIDS policy

—antidiscrimination/enforcement of civil rights protections regarding employment, housing and healthcare

Many of the strategies and practices implemented by the HIV/AIDS activists would also enable the Lyme disease community and Lyme disease advocacy organizations (LAOs) to meet certain challenging goals.

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Lyme Disease and Decades of Broken Promises

In 2000,?Congress reported, “For over 10 years, two components of the Department of Health and Human Services (HHS)—Centers for Disease Prevention and control (CDC) and the National Institutes of Health (NIH)—have conducted programs to study Lyme disease and educate the public and professionals about this disease. Some practitioners, patients, patient organizations, and researchers in the Lyme disease community are concerned about the pace and direction of the research, including studies of chronic Lyme disease.”?

Congress asked the United States General Accounting Office (GAO) to investigate “(1) What activities have the CDC and NIH Lyme disease programs been engaged in, and to what extent have they initiated responses to the recommendations of outside experts and congressional appropriations committees? (2) What funds and other resources have CDC and NIH devoted to Lyme disease?”

The resulting 2001 GAO Report to Congressional Requesters on Lyme Disease details a broad and comprehensive list of research topics to yield practical results.

Over decades, the same research topics are repeated again and again and in many official documents, including the:?

?—2011 Institute of Medicine (US) Committee on Lyme Disease and Other Tick-Borne Diseases: The State of the Science. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases.??

—2018 Tick-Borne Disease Working Group (TBDWG) Report to Congress

—October 2019 NIH Strategic Plan for Tick-Borne Disease Research

?—2020 TBDWG Report to Congress

This repetition indicates government funded research efforts have not improved the lives of those living with Lyme/TBD. Investments of many millions of dollars over decades have failed to advance improved diagnostics and treatments. Pronouncements made regarding breakthroughs in diagnostic tests and treatments fade from collective memory with no evidence of change.

For example:

The 2001 GAO report states “20 percent of National Institute of Allergy and Infectious Diseases (NIAID) Lyme disease grants to nonfederal researchers have been devoted to research on diagnostic methods” “only about 30 percent [of infected persons] are positive in the first weeks of infection using the CDC-recommended two-step [diagnostic] approach”,?notes the “committee to develop a comprehensive definition that addresses the issue of the growing population with the classic Lyme disease symptoms and negative blood tests” had not completed their work, and the 1996 recommendation to incorporation of a “test for the detection of antigens in urine” had not been done (nor has it been done to date).

In 2018, the TBD-Serochip “promised to revolutionize” TBD and Lyme diagnostics. NIH stated the TBD-Serochip received FDA approval in 2021; the TBD-Serochip is still not available to the public as of May 28, 2022.?

How can we break this cycle of government funding of empty promises?

First of all, the Lyme/TBD community and LAOs can break the cycle. It has been done by HIV/AIDS activists and it has been done by many others representing the marginalized.

The Power of Federal Agency Performance Measurements

During my time as an advisor to the US Federal government, I had many different responsibilities. For example, my work might focus on ensuring rural women have adequate access to healthcare, or unemployed youth access to jobs with living wages, or ensuring illiterate farmers have access to capital to buy seeds. The Federal Agency I worked for had many policies to support these kinds of programs. One of the challenges, however, was showing progress in meeting these goals.

These performance metrics are tied to budget allocations and considered ‘contractual’ in nature. Over time it became very clear that programs with inadequate performance measurements could lose political and budgetary support and even be eliminated. I therefore involved myself in learning, then leading, efforts to determine and report on performance metrics that showed tangible results. ?

This was not always a smooth process. At times I faced considerable pushback by colleagues who did not want to be fully accountable regarding certain challenging goals, e.g., gender equality, violence against women, radicalization of youth. For example, they might want to limit official commitment to descriptive phrases that did not quantify results, or only count the number of workshops done on the topic of youth radicalization and stay away from promising to show a reduction in the number of youths radicalized.

When I faced these kinds of internal Agency obstacles, I would head up to Capitol Hill. I would share my frustrations with certain allies who played a role in reviewing the Appropriations Bills that fund Federal Agencies, as well as Federal Agency Strategic Plans, Annual Performance Plans and Reports.

These allies were in a position to write commentary and recommendations for changes to these documents — documents that describe how tax dollar allocations will show tangible results that benefit the American people. I would help my allies by providing them the specific language and performance measurements needed to realize my Agency‘s policy goals regarding marginalized groups.

These kinds of collaborations are commonplace among those who work effectively within government. They are also common among nongovernmental groups, e.g., HIV/AIDS activists, who succeed in holding government accountable.

Some LAOs have successfully enlisted members of the Senate and Congress to add language to the Federal Appropriations Bills to ensure the needs of the Lyme/TBD community are met. Congressional directives alone, however, are insufficient for ensuring Federal Agency obligations.

For example, the 2001 GAO Report states that thirty years ago, in 1992, Congress directed the NIH to “give high priority to Lyme disease.”?

Government accountability, however, is codified into Federal law and understanding how to make use of these laws could greatly benefit the Lyme/TBD community. For example, the CDC holds responsibility for preventing Lyme/TBD, but the only Lyme-related achievement they measured and reported to Congress was the establishment of “tick centers”.?

Tick centers are broadly described as ‘for the collection and study of ticks’. Persons who have been bitten by ticks often want to know where they can send the ticks to be tested for disease and the CDC recommends this be done. These tick centers, however, generally do not accept ticks for disease evaluation from members of the public. It is rather mysterious how these centers serve those bitten by ticks or help prevent health complications from Lyme/TBD. ?

Understanding the role of performance measurements can help LAOs require HHS, NIH, and CDC prioritize programs and activities that improve the lives of Lyme/TBD patients. For example, the CDC can be required to demonstrate how tick centers prevent Lyme/TBD or be asked to implement activities that are more effective for Lyme/TBD prevention. ??

Certain requirements for accountability are well articulated in the Government Performance and Results Act (GPRA) of 1993 Pub. L. 103-62 , the GPRA Modernization Act of 2010 Pub. L. 111-352 and the 31 U.S. Code § 1115 . This standing legislation frames and details how Federal Government must make hard commitments, with elaborated performance metrics, that demonstrate how tax dollars provide tangible results and overall progress toward each Federal Government performance goal.

Federal Agency Performance Plans and Reports must establish and use objective, quantifiable, and measurable performance goals to define the level of performance to be achieved. This includes description of how the performance goals are to be achieved, such as operational processes, training, skills and technology, information, and other resources, clearly defined milestones, and identification of organizations, program activities, regulations, policies, and other activities that contribute to each performance goal.

The Plans must establish a balanced set of performance indicators for measuring or assessing progress toward each performance goal, including “customer service”, efficiency, output and outcome indicators, and provide a basis for comparing actual program results with the established performance goals.

Performance measurements for program activity follow specific activities or projects listed in the program. For example, under the NIH tick borne disease research program, an NIH research project might be funded to develop an improved Lyme diagnostic tool. The new diagnostic tool is an "output measure" showing the project fulfilled its intended purpose.

Related "milestones" could be the Lyme diagnostic is developed by August 2022, undergoes final review in September 2022 and is submitted for approval to the FDA in October 2022.?A possible “outcome measure” is the diagnostic accuracy is increased by 30 percent for males and 40 percent for females.

Agencies are required to ensure the accuracy and reliability of the data used to measure progress towards its performance goals, including means verify and validate measured values; data sources, required level of data accuracy, how the Agency will compensate for data accuracy limitations. "Program evaluations" make use of data to determine if the activities and projects are contributing to reaching program goals. For example, ‘reducing disability from Lyme/TBDs’ under the strategic goal of ‘reducing the health burden of vector borne diseases’.?

The following table provides examples of how the HIV/AIDS activists secured performance measurements for their priorities.?

Many in the Lyme/TBD community have been greatly encouraged by the content of the 2019 NIH Strategic Plan for Tick-borne Disease Research.?Much of the content, however, of the Strategic Plan repeats the content of prior documents.

Both the prior documents and the Strategic Plan made no hard commitments regarding performance measurements, deliverables, outcomes and other measures of results. Nor do subsequent NIH or HHS Performance Reports to Congress articulate metrics that show performance regarding this Strategic Plan.

These omissions mean there is no hard commitment that anything in the Strategic Plan must be done. Nor are the selected activities required to benefit the Lyme/TBD community in any tangible fashion. Furthermore, the NIH will not be penalized in any way if they do not achieve anything noted in the Strategic Plan.

HIV/AIDS activists have been able to secure allies within government. Their allies embrace both policies and performance measurements that uphold the civil rights and access to medical care for those living with HIV/AIDS. Activists have also found allies on Capitol Hill who reinforce Federal Agency accountability to those living with HIV/AIDS.

Some LAOs already have Capitol Hill allies — allies that support increasing government federal spending on Lyme/TBD research, inserting Congressional Lyme/TBD directives into Appropriations Bills (government funding), and Lyme/TBD legislation. These Capitol Hill alliances need to include those willing to ensure federal Lyme/TBD efforts have performance measurements that will improve patient lives. Furthermore, LAOs’ allies in Federal Agencies, in consultation with the Lyme/TBD community, need to establish performance metrics in Annual Performance Plans and program, project, research and activity descriptions.??

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Additional Institutionalized Government Supports for HIV/AIDS

HHS, NIH and other relevant agencies have many transparent performance metrics that hold them accountable to making improvements in the lives of those living with HIV/AIDS and to prevent HIV/AIDS. They also have additional institutionalized supports to ensure these goals are achieved.

These include: ?

—The Office of Infectious Disease and HIV/AIDS?Policy

—HHS National Action Plans to prevent infectious diseases related to HIV/AIDs, vaccines, viral hepatitis, and blood and tissue safety and availability.?

—The Office of Infectious Disease and HIV/AIDS Policy (OIDP) is responsible for coordinating HHS activities related to blood and tissue safety and availability.

—The Presidential Advisory Council on HIV/AIDS (PACHA) provides "advice, information, and recommendations to the Secretary of Health and Human Services regarding programs, policies, and research to promote effective treatment, prevention and cure of HIV disease and AIDS, including considering common co-morbidities of those infected with HIV as needed to promote effective HIV prevention and treatment and quality services to persons living with HIV disease and AIDS.

—HIV Workgroup with Lead Federal Agencies including: “Office of Infectious Disease and HIV/AIDS Policy, Office of the Assistant Secretary for Planning and Evaluation, Office of Minority Health, CDC, Health Resources and Services Administration, Office of the Assistant Secretary for Health, Office of Disease Prevention and Health Promotion, National Center for Health Statistics. Members of the HIV Workgroup have expertise in areas including HIV, health care, disparities, epidemiology, program evaluation, data analysis, data dissemination, and cost-effectiveness. They developed the objectives related to HIV, and they’ll provide data to track progress toward achieving these objectives throughout the decade.” ?

The HIV Workgroup Objectives are all performance based and measurable: “Reduce the number of new HIV infections; Increase knowledge of HIV status; Reduce the number of new HIV diagnoses; Increase linkage to HIV medical care; Increase viral suppression; Reduce the rate of mother-to-child HIV transmission” ?

—A government HIV/AIDS blog webpage that provides ongoing updates regarding government activities to address HIV/AIDS

There is no equivalent level of institutionalized government supports for those living with Lyme/TBD, or to prevent Lyme/TBD infection.

There is a DOD funded group for tickborne disease research.?Since the 1990s, Congress has repeatedly asked the DOD to address the numerous Lyme/TBDs issues affecting military personnel; the same requests were made in the 2018 TBDWG Report to Congress.

The 1998 Congressional Record states?”long term [Lyme] treatment expenses can exceed $100,000 per person [approximately $178.560 in 2022]?—a phenomenal cost to society”. It was then recommended to expand Department of Defense's research into preventing and treating Lyme Disease and other tick-borne illnesses as these infections are recognized as a threat to military readiness (Congressional record below).

There is an HHS LymeX program that promotes collaboration with the Lyme/TBD community and interested stakeholders. Unlike the government-funded institutionalized structures for HIV/AIDS, LymeX activities are mostly funded by external nongovernmental donors.??

There are LAO efforts to establish multiple institutionalized government supports for those living with Lyme/TBD. These should be government funded, patient-oriented and incorporate performance metrics.

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The Importance of Integrating Rights Education and Knowledge of ICD-11

The chronic Lyme patient group has been Federally recognized as having a chronic illness and/or pre-existing condition and, according to Federal law, has rights to healthcare coverage, employment accommodations and other disability benefits.

These rights and government protections are elaborated in and provided by Federal law as described in the Americans With Disabilities Act (ADA), the ADA’s Job Accommodation Network (ADA/JAN) and the Affordable Care Act (ACA).?The ADA/JAN lists Lyme disease and details the range of ADA protections in terms of employee accommodations for Lyme-related disability. ?

The JAN website provides comprehensive guidance on how to secure disability status and accommodations for those living with chronic Lyme/TBD disabilities. JAN also provides counselors to help those living with Lyme/TBD secure their protected rights and benefits.

The ACA also recognizes that Lyme/TBDs can be a chronic condition and protects access to extended and repeated antimicrobial treatment for the infection. As part of their responsibility to the ACA, the Centers for Medicare and Medicaid Services (CMS) validated the essential health benefits (EHB) for persons living with Lyme. The CMS maintains a publicly accessible record that states Lyme has EBH that is “covered” “has no quantitative limit on service” and has “no additional limitations or restrictions”

The CMS record also notes that “disabling or life-threatening chronic diseases (eg as documented with Lyme disease) has no additional limitations or restrictions regarding off label use of FDA approved prescription drugs”.

There is evidence that when Lyme/TBD patients understand they have protected rights, they are more able to secure care and other benefits.?

An ongoing lawsuit, Case 5:17-cv-00190-RWS, brought by 24 Lyme disease patients focuses on the wrongful denial of insurance coverage for longer courses of antibiotics. The lawsuit contends that “chronic Lyme disease patients who do not respond to short-term antibiotic treatment, and do not receive long-term antibiotic treatment, will suffer debilitating symptoms, will be in constant pain, will be unable to function or live a normal life, and will eventually die from Lyme disease.”

All named insurance defendants settled in favor of the patients, they include Blue Cross Blue Shield Association, Anthem, Blue Cross And Blue Shield Of Texas, Aetna, Cigna Corporation, Kaiser Permanente, United Healthcare Services and United Healthcare Group. ?

Other information relevant for gaining access to Lyme diagnosis and treatments is the World Health Organization’s updated and greatly expanded medical codes for Lyme disease. ?These codes, referred to as the International Classification of Diseases (ICD) codes are found in the ICD-11. ICD-11 has been ratified for adoption in 194 countries to help diagnose illness, tighten infection surveillance and strengthen reporting by public health authorities.

For the first time in 25 years, the ICD recognizes many chronic and recurring Lyme complications that cause severe disability and can result in death.

Source: ICD-11 for Mortality and Morbidity Statistics (Version : 02/2022)

ICD-11: 1C1G Lyme borreliosis. 1C1G.0?Early cutaneous Lyme borreliosis. 1C1G.1 Disseminated Lyme borreliosis. 1C1G.10 Lyme Neuroborreliosis. 1C1G.11 Lyme Carditis. 1C1G.12 Ophthalmic Lyme borreliosis. 1C1G.13 Lyme arthritis. 1C1G.14 Late cutaneous Lyme borreliosis. 1C1G.1Y Other specified disseminated Lyme borreliosis. 1C1G.1Z Disseminated Lyme borreliosis, unspecified. 1C1GY?Other specified Lyme borreliosis. 6D85.Y Dementia due to other specified diseases classified elsewhere; Dementia due to Lyme Disease. 9C20.1 Infectious panuveitis; Infectious panuveitis in Lyme disease. 9B66.1?Infectious intermediate Choroiditis; Infectious intermediate uveitis in Lyme disease. 8A45.0Y Other Specified white matter disorders due to infections; Central Nervous System demyelination due to Lyme borreliosis. “KA6Y Other specified infections of the fetus or newborn” can be coordinated with “XN13C Borrelia Burgdorferi” to represent Congenital Lyme.

It will take some time for the new ICD-11 to be fully integrated into the US healthcare system.?Patients, however, have reported they have already used the ICD-11 Lyme codes to negotiate access to treatment and diagnosis.?And advocates in other nations have used the new codes to gain political support for access to care and have integrated knowledge of these codes into medical training modules for practitioners.

Many US-based LAOs have not routinely made effort to provide the Lyme/TBD community information regarding: the relevance of the new Lyme codes; existing rights and government protections — rights and government protections that have helped informed patients secure covered care and other benefits. Nor has this information been integrated not TBDWG Reports to Congress chapters on “access to care”.

The omission of this critically relevant information could be, in part, due the under-representation of Lyme patients and advocates in the TBDWG. Federal Working Groups, such as TBDWG, are created in compliance with The Federal Advisory Committee Act (FACA). FACA Federal Working Groups are created “to ensure that advice by the various advisory committees formed over the years is objective and accessible to the public”.

FACA also opens up opportunities for having nongovernmental stakeholders, e.g., patient advocacy groups, inform government policy, research and response. These kinds of Federal working groups normally have a preponderance of nongovernmental stakeholders compared to government members. This is well demonstrated by the HIV/AIDs Working Groups and the Working Group for ME/CFS Research established under FACA.

In contrast, the composition of the TBDWG membership is atypical and under-represents patients and their priorities. To date, the Federal government has not equally supported representation and collaboration for those living with Lyme, as compared to those living with HIV/AIDS. ?

How did the HIV/AIDS activists secure these comprehensive achievements?

First and foremost, HIV/AIDS activists organized themselves politically to demand representation in all policy decisions related to their care and their fundamental rights.

Secondly, in order to save their own lives, they were willing to implement good trouble, be disruptive, proudly visible, loud, demanding and insistently persistent.??

Thirdly, they demanded equality and protections of their civil rights in all spheres of life, not only medical care. This is because they understood how the lack of disability, employment and housing protections could result in members of their community falling?through the cracks, losing access to medical services and death.

HIV/AIDS activists demanded and achieved protections for financially covered access to diagnosis and treatment options. This has not been achieved for the majority of those in the chronic Lyme/TBD patient community.?

Prioritize, Focus Resources, Save Lives

For 40 years, the Lyme/TBD patient community have faced the same three challenges regarding access to care:

(1) securing a timely diagnosis before the infection disseminates to cause debilitation, disability and/or death;

(2) arbitrarily limited access to extended antimicrobial treatment; and

(3) insurance coverage for physician recommended months of antimicrobial treatment is often denied.

LAOs are very familiar with these access obstacles; many of their websites feature stories of patients who describe these situations. Many LAOs generally speak of the need for improved diagnosis and treatment but have not prioritized improving patient access to affordable or covered diagnosis and treatment.

Many LAOs give reference links to medical practitioners who treat this complex illness. Most of these practitioners, however, treat through private clinics that do not accept insurance and too many Lyme/TBD patients are unable to afford their out-of-pocket services.?

Apart from these care references, most LAOs focus the majority of their efforts on Lyme/TBD education. Their effective education then results in hundreds of thousands of persons grateful to learn they may have Lyme disease and deeply discouraged if they are unable to pay out of pocket for diagnosis and treatment.?As of May 26, 2022, there are over 450,000 GoFundMe sites asking for donations to treat Lyme/TBDs.

Some LAOs have organized successfully to pass state-level laws that protect practitioners’ rights to give a clinical diagnosis and provide the option of extended treatment. In two states, insurance company policies cite the state law that support practitioner option of extended treatment following clinical diagnosis.

These state level efforts, however, have not yet translated into widespread improvements in practitioner awareness and actions regarding Lyme diagnosis and treatment. Furthermore, many insurers still try to evade covering extended treatment and deny the ACA’s protected right of chronically ill to be treated off label with FDA-approved drugs.?Despite earnest effort on the part of LAOs, the Lyme/TBD community is still characterized by individual battles for access to treatment for infection.

Some well-endowed LAOs have spent significant research dollars on studies that prioritize the treatment of complications and ignore the underlying systemic infection driving?complications that can occur and proliferate in any bodily system when infection is insufficiently controlled. A few well-endowed LAOs have secured research funding for research to improve diagnostic testing and treatments.

There have been recent indications the Federal government is more open to collaborating on?patient-oriented Lyme/TBD research. Millions more in private donations have been contributed to these efforts. Will these millions of Lyme/TBD research dollars improve patient lives? They certainly can if the research embeds performance measurements that demonstrate these goals are being met.

The Federal government has also recently revised the case definition for Lyme disease and apparently without patient input. Some Lyme advocates have noted that parameters for the new Lyme case definition use outdated data, complicated decision-trees and do not encourage diagnoses in “low incidence” areas, even though people are known to be infected throughout the US. This may lead to more under-diagnosing of the infection…and more related disability and death.

For decades, HIV/AIDS activists have participated in government discussions regarding their case definition. HIV/AIDS activists have consistently demanded accessible, affordable or covered treatment options to prevent and control HIV infection. ?

HIV/AIDS activists’ focus on expanding the case definition to encompass the complexity of the disease, and access to viable infection prevention and control has yielded amazing results. Those living with HIV/AIDS can prevent the passing of their infection to others, they can lead “normal lives” and have normal life expectancy.?

For the Lyme/TBD advocates, is any goal more worthy than:

—establishing a standard where infections are prevented and when they occur, are quickly diagnosed;

?—treatment options that control infection, restore quality of life, wellbeing and health of those living with Lyme and tickborne diseases;?

—ensuring all persons living with Lyme/TBD have access to covered diagnosis and effective treatment options?

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Jenna Luché-Thayer. 35+ years working globally on the rights of the marginalized. Former Senior Advisor to the United Nations and the US Government.