Yesterday, the United States Department of Health and Human Services convened the first of a two-day preliminary meeting of a new Tick Borne Disease Working Group. (Read more about the Working Group here.)
I have written extensively about Lyme disease for a couple of years now, beginning with a three-part series of articles that asked “Is Lyme Disease the New AIDS?” At the time, I wrote primarily LGBT- and entertainment-related stories for this blog, and I frankly suspected the essay would be sent off into the ether and not very widely read, given that my readership historically has been members of the LGBT community.
Within a couple of hours, I received an email from Raphael Stricker, a former president of the International Lyme and Associated Diseases Society (ILADS), who back in 2010 co-authored an article with LymeDisease.org’s Lorraine Johnson called “Lyme disease diagnosis and treatment: Lessons from the AIDS epidemic” in the English/Italian medical journal Minerva Medica. In 2014, Stricker and Johnson published a similarly themed article, “Lyme Disease: Call for a ‘Manhattan Project’ to Combat the Epidemic,” in the medical journal PLOS Pathogens.
After Stricker’s message came a trickle and then a veritable flood of messages about Lyme disease. The response overwhelmed me. I felt exposed because so much of what I had written related to my lifelong fears as a gay man who grew up in the 80s and 90s of the haunting Boogie Man of HIV/AIDS. In response to the story, I believe I received three complaints from HIV-positive people who felt that comparing anything to HIV was in poor taste, and especially something as minor (in their regards) as Lyme disease. I engaged in a lengthy debate with the most adamant of these people, and at the conclusion of our respectful conversation, she acknowledged that she knew little about Lyme disease, having extrapolated from the news stories she had read that it is a rare, easily cured illness, and that she would read more about it. That was more than enough for me; the only reason I wrote anything about Lyme disease at all was to draw attention to how harrowing it can be.
All the other responses—literally several hundred within a 72-hour period—came from severely ill people who begged me for help. Well, what could I do? I’m not a doctor. I’m not a medical researcher. I’m not a policymaker. I’m a writer and someone who has shared the surreal experience of late-stage Lyme disease. While I couldn’t provide any direct service to any of these people, I resolved to investigate and write about Lyme disease.
To say that the legacy of the AIDS epidemic was the pink paisley elephant in the room at yesterday’s Tick Borne Disease Working Group meeting would be an unthinkable understatement. Here’s a quick inventory of HIV/AIDS references:
- The Working Group is organized by the HHS Office of HIV/AIDS and Infectious Disease Policy, Office of the Assistant Secretary for Health.
- The Working Group’s designated federal officer, Richard Wolitski, “has worked for three decades as a manager, supervisor, and researcher studying HIV, STD and viral hepatitis risks and prevention.” Included with his biography among meeting handouts is a quote from Wolitski: “As someone living with HIV who experienced the early days of the epidemic before effective treatment existed, I empathize with many of these issues and ways that tick-borne disease has affected people and their families.”
- During the meeting, expert presentations and public comments were facilitated by Dazon Dixon Diallo, president and CEO of SisterLove, Inc, a women’s AIDS and reproductive justice nonprofit. Throughout her comments, Dixon Diallo repeatedly invoked the AIDS crisis and explained her involvement with the ACT UP organization responsible for making noise about HIV/AIDS devastation that it could no longer be ignored. She told meeting attendees that Lyme patients need the same level of self-advocacy.
- Present at the meeting was the well-known Lyme disease doctor Joseph Jemsek, a former HIV/AIDS specialist who changed his specialty from HIV/AIDS to Lyme disease because of the great number of patients who came to him after having been abandoned by other doctors. In part through being profiled in the feature documentary Under Our Skin and its sequel, Under Our Skin: Resurgence, Jemsek’s legacy is famous and famously controversial, as the North Carolina board of medicine and medical insurers have accused him of unprofessional conduct for providing individualized patient care involving prolonged courses of antibiotics rather than strictly observing CDC-endorsed Lyme disease treatment guidelines from the Infectious Diseases Society of America (IDSA), which mandates no antibiotics beyond 28 days. (Note: The CDC removed the IDSA guidelines endorsement from its website on December 1, 2017, explaining via email that “It has been over a decade since the IDSA guidelines, developed in 2006, were published. Additional published research further informs Lyme disease treatment. As a result, we’ve updated our website with treatment information that is more immediately helpful to health care providers and people with Lyme disease.” Federal regulations require that all medical guidelines must be reviewed against current scientific literature at least every five years. The federal National Guidelines Clearinghouse, which like CDC falls under the Department of Health and Human Services, un-listed the IDSA guidelines nearly two years ago because they were at the time five years overdue for review; when asked, the CDC offered no explanation for why it waited an additional two years to cease explicitly endorsing the IDSA guidelines.)
- Among remote viewers far and wide was Fred Verdult, a Dutch HIV/AIDS and Lyme disease activist, who has told me that at this time his HIV is managed by a single pill, whereas he has to take about 40 pills to manage, as best as can be done today, Lyme disease. Verdult has been a prominent HIV/AIDS activist in Europe since the 1990s, and he has told me that he has encountered a great deal more resistance to Lyme disease activism than activism on behalf of HIV/AIDS patients.
A couple of years ago, comparing the phenomenon of Lyme disease to that of HIV/AIDS felt taboo—particularly as a gay man who was indoctrinated through public school, public service campaigns and media depictions to believe that AIDS was an almost certain death sentence to all gay men—or at least an omnipresent assassin who would betray every intimate relationship.
Today, incredibly, the HIV/AIDS crisis is the foundation upon which both Lyme disease denial and Lyme disease activism are building. To archive the stories I publish here and elsewhere, I co-opted a name recognizable to veritably everyone of a certain age, calling my web presence And the Band Plays On. (Sadly, And the Band Played On author Randy Shilts titled his book in past tense, assuming that the worst was behind us, and writing in his book’s introduction that the purpose of his written documentary was to prevent similar needless suffering from ever happening again. He succeeded in documenting the AIDS crisis, which has been a gift to us all; tragically, lessons have been taken from his history only selectively.)
HIV and Lyme disease are entirely different etiologically: HIV is a virus that suppresses the immune system over time, and Lyme is associated with one specific syphilis-like bacterium, Borrelia burgdorferi, that for some infected individuals is easily curable and for others—for reasons not at all to poorly understood, depending whom one asks—persists for years, decades or potentially indefinitely. HIV is best know as a sexually transmitted infection, but it can also be transmitted via shared needles, blood transfusion, and from mother to child. Lyme is known primarily to be transmitted by ticks—crucially, and usually overlooked, this transmission occurs often but at unknown rates along with one or more other potentially life-threatening tickborne infections—but some evidence has shown it also can be transmitted from mother to child, and many people have concerns that it potentially may be transmittable via sexual contact or blood transfusions...officials say that this has not been documented, and there appears to be little to no interest on the part of public health agencies in investigating Lyme disease pathology more intensively.
So biologically speaking, Lyme and HIV really have almost nothing in common.
AIDS is the result of infection by the HIV virus that has gone untreated for many years. AIDS results when the immune system is severely compromised, and in most cases when opportunistic infections do serious damage to the body. AIDS patients experience a nightmarish physical decomposition of their bodies. People who live with Lyme disease that has been undiagnosed and therefore not treated, or for whom treatment for unknown reasons was not successful, likewise find themselves inside of bodies that suddenly or slowly stop working properly, in many cases with neurological and even severe psychiatric manifestations. AIDS and late-stage or chronic Lyme do share some general commonalities—the specifics from a medical standpoint may differ greatly, but the patient toll can be similar.
People who develop AIDS generally die from AIDS.
People who develop late-stage or chronic Lyme most often do not die as a direct result (with exceptions)—yet suicide rates among these patients are high due to pain, suffering, disability, and common rejection by medical doctors, who insist that these people are either mentally ill or simply attention seeking.
Those of us who are old enough to remember the early 1980s will remember that AIDS jokes for a time were somewhat in vogue, thought to be in poor taste but nevertheless common before the pandemic scared the bejeezus out of the world. Lyme disease patients remain the subjects of derision and the punchlines of jokes, perhaps especially as told by those in the medical and public health professions.
The Poughkeepsie Journal, for example, in 2013 published a story disclosing internal emails from the National Institutes of Health officer responsible for overseeing clinical trials associated with Lyme disease in which he described Lyme disease patients to his CDC colleagues as “the Lyme loonies.”
Lyme patient and cartoonist David Skidmore turned the sour insult into lemonade (Yes, I resisted the lyme-ade pun!) by publishing Lyme Loonies, a collection of Far Side-style single-panel comics that illustrate the surreal absurdity of living with Lyme disease.
As with most of Skidmore’s illustrations, the above comic is an “inside joke” that many people who live with Lyme will get and few others would. In 2013, the CDC released a revision of its estimate of annual Lyme disease infections within the United States. Prior to 2013, the CDC stated that approximately 30,000 new cases of Lyme disease were acquired within the U.S. each year, based upon reports. In August of 2013, the CDC stated that it had reason to believe that Lyme is underreported at an estimated tenfold rate, with suspected actual infections numbering upwards of 300,000 per year. This “breaking of the dam” reflected Lyme patients’ realities and unleashed a tidal wave of cries for additional support.
Indeed, a rate of 30,000 annual infections classified Lyme as a “rare disease.” The estimate from 2013 instead classifies Lyme as one of the most common infectious diseases. One might expect this tremendous public health risk to be reflected in funding, but as Lorraine Johnson of LymeDisease.org presented to the Working Group yesterday, the “rare disease” legacy has stuck with Lyme, and Lyme disease is “funding orphaned.” CDC estimates fewer than 40,000 newly acquired HIV cases each year, and the NIH has invested $3 billion per year in researching HIV for many years; in stark contrast, CDC estimates over 300,000 newly acquired Lyme cases each year, and HIV invests an average of $25 million per year in researching Lyme. According to the analysis provided by Johnson, this funding level is reflective of “rare disease” status, which was once thought to apply to Lyme disease—but not for nearly five years now.
The first day of the Working Group made clear that parallels between the barely visible Lyme pandemic and the world-rocking AIDS pandemic are undeniable. It remains to be seen whether the Working Group’s deliberations and recommendations will significantly improve response by federal agencies including the CDC, responsible for control and prevention of all threatening diseases, and the NIH, responsible for funding research into all health issues.
People all over the world are watching and documenting these deliberations as they unfold. Chalk it up to another historic event brought to us by the year 2017. As the year winds down, I retain hope that human decency will help federal officials to do what is right for all people.