And the Band Plays On is a resource website for Lyme and associated diseases.
The name of this website is a reference to the bestselling book by Randy Shilts and popular HBO dramatization And the Band Played On: Politics, People, and the AIDS Epidemic. Shilts was a reporter for the San Francisco Chronicle and one of the first journalists to report on the HIV/AIDS epidemic as it emerged in the early 1980s.
Wikipedia summarizes And the Band Played On as placing a special emphasis on:
…government indifference and political infighting—specifically in the United States—to what was then perceived as a specifically gay disease. Shilts’ premise is that AIDS was allowed to happen: while AIDS is caused by a biological agent, incompetence and apathy toward those who were initially affected by AIDS allowed the spread of the disease to become much worse.
Though the pathologies of the HIV virus and Lyme and associated diseases are not at all similar, the Lyme disease community—that is, Lyme disease patients, specialists who treat Lyme, and a community of advocates fighting for Lyme disease parity in the American healthcare system—perceives government indifference and political infighting as a primary obstacle to a sound scientific understanding of Lyme and other tickborne infections through federally supported research, the development of reliable diagnostic tests, and a healthcare system that receives and treats Lyme disease patients with respect and care in their best interest.
In the view of this site, the only consensus about Lyme and associated diseases is that there is no consensus of understanding. A great deal of research about whether and how Borrelia burgdorferi bacteria persists exists, but more studies are needed, including replication studies to determine veracity of findings. Not a great deal of research about whether and how persisting Borrelia species exist within the human body and whether or how to best treat these “persister” strains of Borrelia bacteria. A great number of unknowns complicate today’s understanding of Lyme disease.
What is most challenging is that evidence of persisting Lyme disease has been consistently challenged by select individuals and organizations within the medical sector, and the resulting fallout has been devastating to Lyme disease sufferers. Articles on this site will examine this phenomenon, occasionally in the context of And the Band Played On and the historic political complications that contributed to the explosive tragedy of the HIV/AIDS epidemic in the 1980s and 1990s.
This website also will present and comment on news media coverage of Lyme and other tickborne diseases, which in many cases plainly reveal the partisan nature of the Lyme disease conversation. Overall, news media in Lyme-endemic regions appear to present more patient-focused stories, while it appears that the majority of national media tend to report more variably. Specifically, while interviewing high-profile individuals who tell harrowing stories of their experiences with Lyme disease, it appears that most reporting takes a straightforward human-interest approach. However, when reporting on the Lyme disease “controversy,” many news organizations tend to quote individuals who are affiliated with the organizations that oppose investing in Lyme disease research and oppose supporting patient-focused care without, in the opinion of this website’s author, upholding standards of journalistic ethics by conducting due research to determine whether or not the claims made by the quoted individuals are indeed substantiated by research, and whether they indeed represent the “scientific consensus”—which is how these individuals tend to represent their opinions.
Anyone who claims that “the consensus” has made a definite determination about Lyme disease pathology, diagnosis or treatment is making a false claim. Anyone who makes this claim should be regarded with a level of doubt and with recognition that he or she is using a rhetorical technique of supporting his or her opinion with a broad and false suggestion that this individual’s or organization’s opinion is “the consensus.”
Much more research is required before any consensus will be reached to support either side of the Lyme disease argument. In the meantime, patient-focused care is the only ethically sound means of medical practice for individuals who are in many cases fully or partially disabled and suffering to an extreme degree.
To date, a great number of articles published in peer-reviewed journals arguing against Lyme disease treatment are authored by a small number of select individuals, and these are all opinion-editorial articles, and not research studies. Further, the majority of such opinion pieces disclose serious conflicts of interest on the part of these authors, including paid participation as expert witnesses in Lyme disease legal trials and financial support by pharmaceutical and medical device-manufacturing companies, some of which create marketable products that treat symptoms of progressive Lyme disease and therefore have a financial stake in not finding a permanent cure for Lyme disease. Further, the authors typically have direct affiliations with the Infectious Diseases Society of America (IDSA), an organization which denies that chronic Lyme disease exists, which has been investigated and found to have a number of financial conflicts of interest among its board of directors and other leaders, and which recommends against further research funding to gain a better understanding of the disease. Any medical society that discourages further investigation into any poorly understood (or for that matter, any well understood) medical condition should be questioned and should have to answer those questions.
Imagine that this year is 1984, and the national society that represents infectious disease doctors discouraged further research into HIV/AIDS. Imagine the increased devastation that would follow over the coming decades. Applying this approach to Lyme disease is misguided and dangerous, and the time has come to address Lyme and associated diseases as a public health threat and accept that it is not an imagined phenomenon. The disease is spreading rapidly and it must be quelled through intentional, cooperative efforts on the part of medical associations and policymakers.