unless we force them.” – ACT Up activist protesting the FDA,1988“We’re here because this government has the resources to deal with the AIDS epidemic and they won’t do it
“I am one of the 300,000 plus annual Lyme patients being ignored by the CDC and HMOs.” – Lyme disease activist protesting online as part of the “We are the 300,000” movement, 2013
Anyone who lived through the AIDS epidemic of the early ’80s will never forget the unimaginable devastation that was inflicted upon an entire generation of people. But too many Americans younger than 40 have little knowledge of this profound chapter in American history or the revolutionary struggle waged by AIDS activists to propel the disease into the national spotlight and force government officials to address the mounting epidemic.
David France, director of How to Survive a Plague, the Academy Award-nominated documentary about AIDS activism, explains how initially the epidemic was completely ignored:
It really is hard to remember because it seems so improbable that a disease could wash into our country and be ignored politically the way this one was. One would have assumed that an apparently infectious disease would get responded to by public health authorities and politicians with some urgency and that just was not the case. And so what went from 1981 as an infection in 41 people that we knew of, since then was allowed to grow into a massive and global pandemic.
After years of government neglect of the AIDS crisis, which to this day causes almost 2 million deaths worldwide, one would think that health officials would have learned from their mistakes.
But some would say that history is repeating itself with Lyme disease. And Dr. Marc Conant – who was at the forefront of the AIDS movement – is one of those people.
Dr. Conant was one of the first physicians to identify AIDS in 1981 and is founder of the SF AIDS Foundation. He is also one of the few people from the AIDS movement to have crossed over into the Lyme disease struggle.
Dr. Conant got involved with Lyme when he began noticing that the medical establishment did not believe in “chronic Lyme disease” – a term used to describe the notion that the Lyme bacterial infection can persist past the recommended 2 to 4 weeks of antibiotic treatment. He also heard it implied that patients who believed that they had chronic Lyme disease were crazy.
Having lived through the early years of the AIDS epidemic, where patients were dismissed as criminals who were being punished for sinful behavior, Conant was primed to question notions of “crazy” patients. He began attending Lyme disease conferences and saw that there were indeed patients who continued to be very ill despite treatment – and they clearly were not crazy.
As Conant learned more about the disease, he realized that there were striking parallels between the struggle faced by AIDS patients and the battle being waged by those suffering with Lyme:
“Both diseases have introduced an unexpected paradigm into medicine. In the early ’80s, the medical establishment thought they knew everything about infectious disease, so when AIDS came along, researchers insisted that it could not be an infection. Instead, they assumed that the symptoms must be due to environmental factors such as sexual practices or recreational drugs.”
Similarly, with Lyme disease, the medical profession has been holding fast to the belief that persistent symptoms beyond the recommended treatment can’t be due to an ongoing infection. The prevailing belief is that symptoms must be the result of residual damage to the immune system or are psychosomatic.
However, just as with AIDS, where there was a parallel model for the behavior of the AIDS virus in Hepatitis B, there are multiple examples of persistent bacterial infections, such as Mycobacterium tuberculosis, Salmonella typhi and Burkholderia pseudomallei. In addition, some of these illnesses are known to require aggressive antibiotic therapy for up to 9 months.
Yet, because of the historical belief that the Lyme infection is always eradicated with a 2 to 4 week course of antibiotics, researchers have remained frozen in their stance that there is no such thing as a persistent infection. Consequently, almost none of the government-funded studies are examining the crucial question, “Can this bug really survive?”
Resistance to looking beyond traditional notions of infectious disease patterns compromised public safety back in the ’80s and is compromising public health today. While Lyme disease is not killing patients at the mass rates AIDS did, as singer Daryl Hall (Hall and Oates), who has neurological Lyme, explains, “It can make you wanna die if you’re not dead.”
Daryl Hall and Amy Tan have been two of the most outspoken celebrities with Lyme trying to get the general public to understand that everyone is at risk for this disease, which can cause crippling neurological and physical symptoms.
Tan, who has late-stage neurological Lyme, describes her case as typical. Prior to treatment, she experienced hallucinations; horrible nightmares that caused her to lash out violently; difficulty speaking; memory problems that led her to become lost in her own neighborhood; neuropathy; and severe fatigue.
Tan says that her symptoms became 85 percent better after a year of IV antibiotics – as opposed to the recommended 2-to-4-week course. She also felt it was necessary to continue treating her illness with antibiotics for many years.
Daryl Hall, whose wife and two stepchildren also suffer from the disease, feels that the lack of recognition of chronic Lyme by the Centers for Disease Control (CDC) is “almost a bad joke” to anybody living with the illness:
Right now, the prevailing “wisdom” is: Give someone [Doxycycline] and hope for the best. And that does not work. It works with some people in some cases . . . But for, I would say, probably the majority of people, that is not the answer.
Seventy-seven peer-reviewed studies from 1977 to 2012 show that the Lyme infection can persist despite the recommended antibiotic treatment. Yet, because chronic Lyme disease is not recognized by the medical establishment, insurance companies insist that it does not exist and therefore refuse to pay for long-term treatment. Like AIDS patients in the early days, many Lyme patients with persistent symptoms have to go outside the system to get medications.
Many have turned to private, “Lyme-literate” doctors who are willing to prescribe long-term antibiotics at the risk of attack from medical boards. But the cost of these treatments can be exorbitant, creating significant financial hardship for struggling patients. Lyme expert Deborah Metzger, MD, describes how the average length of long-term treatment is usually one to five years. For those who need IV antibiotics, the cost can run as high as $12,000 to $36,000 per year.
As increasing numbers are forced to travel long distances to see doctors, are too debilitated to work and are unable to afford private treatment, patients may have no other option than to employ confrontational tactics like those used by the AIDS Coalition to Unleash Power (ACT UP) to force those in power to act.
AIDS activists struggled through 10 years of fierce battles before the kind of impact they were fighting for was achieved. With the benefit of hindsight, we have the opportunity to learn from our mistakes and avoid putting Lyme patients through the same unnecessary suffering experienced by those with AIDS.
The UK can serve as a model for how to deal with the Lyme epidemic. In stark contrast to the Reagan and first Bush administrations, which did not respond with urgency to the AIDS crisis, the Thatcher government acted effectively and humanely, saving thousands of lives.
Its aggressive educational campaign involved placing advertisements in the press and sending pamphlets to every mailbox. Thatcher herself insisted that a public information film, AIDS: Don’t Die of Ignorance, be shown as widely as possible in theaters, on the BBC, and on commercial television.
The trajectory of the AIDS crisis also illustrates the importance of adequately funding research. Mark Harrington, one of the original members of ACT UP, explains how the breakthrough that AIDS activists thought was going to happen in ’88 or ’89, didn’t happen until ’96, so a lot of people died unnecessarily. Harrington believes that if Reagan had started putting money into AIDS sooner, many more people could have been saved.
Lyme research only receives $25 million a year in funding, while many of the other infectious diseases receive between $100 and $200 million annually. HIV now receives over $3 billion a year.
In addition to increased funding, Dr. Conant explains the importance of focusing research efforts on investigating the notion of a chronic Lyme infection:
“There are hundreds of thousands of people suffering from a debilitating illness which they feel is chronic Lyme disease. However, the experts dismiss their symptoms because the erroneous consensus is that ‘they’re crazy.’ The only answer to this problem is for the public health services to empanel a multidisciplinary, international group of experts without prior bias to examine this problem with new eyes to determine the scientific course of this disease.”
Failure to protect the public against contamination of the blood supply is another mistake that reflects historic amnesia. Lack of action on this front during the AIDS crisis led to 29,000 deaths. In his book, Every Last Drop, attorney George Baxter, Esq., chronicles his 6-year legal battle against the billion-dollar-a-year blood industry that conspired to delay AIDS testing to save money.
Tick-borne illnesses such as Lyme are known to be transmitted through blood transfusions. Yet, due to inaccurate diagnostic tests, we currently have no way of adequately screening people. The FDA has yet to approve any screening test for Babesia, a tick-borne malaria-like disease that can be fatal.
When we go through catastrophic tragedies like the AIDS crisis, we often say, “Never again.” The CDC has just announced that there are likely 300,000 new cases of Lyme annually. As 2014 dawns, we are faced with the choice of how we as a society, are going to deal with the Lyme disease crisis. Will we learn from our past mistakes in the public health arena, or will we let history repeat itself?