Many holidays are heartwarming—days of rest to spend time with family and friends, to relax. Others are referred to as “shopping holidays”—they’re the ones that give us a day off work, but which we don’t really do anything to celebrate or acknowledge for the most part. You know what I’m talking about.
Today isn’t a holiday, but it is a special day. It’s a day, frankly, with a far greater immediate significance to many of us than most reflective holidays. Most of us don’t make plans on Memorial Day, for example, to visit memorials—be honest. You don’t do that.
But every year on December 1, the world takes notice of World AIDS Day. Stories are published about all facets of the disease, domestic and global, from past to present to projections of how well we will be able to weather it in the future.
Today, HIV is manageable for most people who have access to medications that treat it. That’s a blessing. In the gay community, the introduction of PrEP—pre-exposure prophylactic medications—have given countless gay men a feeling of invulnerability to the infection and as a result a cavalier attitude toward sex without physical protection is becoming the norm in many circles. That’s disturbing to me as someone who was born in 1978 and whose life as a young gay man was colored by horror stories of death and degradation by AIDS; having lived through that, nothing is worth the risk, however small it may be. A new study from Stellenbosch University in South Africa shows that the HIV virus even as a new infection affects the brain, suggesting that despite many effective treatments, damage is still being done by new HIV infections. From Science Daily:
"Our research shows that HIV does have an impact on the brain and that these low-grade cognitive symptoms are likely not just function loss due to patients feeling sick, tired or depressed," says Dr Stéfan du Plessis, lead author of a series of articles about the research published in AIDS and other international journals., and that “cognitive symptoms are likely not just function loss due to patients feeling sick, tired or depressed.”
Although the White House Office of National AIDS Policy is shockingly barren—entirely blank, save for its heading, without even a link to information from the CDC or NIH—the United States still prioritizes HIV/AIDS research, allocating $3 billion per year (until next year, when an estimated half billion dollars will be cut) to the National Institutes of Health to fund ongoing research. HIV and AIDS are still threats.
HIV holds a special place in American and world history. This history was documented in real time by a remarkable author who wrote a remarkable book called And the Band Played On, which became a popular phenomenon when it was translated into an HBO production.
Today, on World AIDS Day, I am republishing a piece I wrote about the legacy of HIV/AIDS, and the effect the fear of it has had on my life as a gay man, as well as the non-effect it has had on waking up our nation and the world to the very real threat of new and emerging pandemics. In particular, Lyme disease and other illnesses that ticks are spreading to human beings.
This may seem like a non-sequitur, or it may seem forced. I don’t know how to convince those who are unwilling to listen; however, as a preface to the essay from a couple of years ago, I will offer a few recent developments that I would encourage anyone who regards the impact of HIV/AIDS on humanity as important to consider the facts, or at the very least to read about Fred Verdult, a Dutch man who lives with HIV and who has been celebrated for his outstanding HIV/AIDS advocacy—and who recently contracted Lyme disease during a bike ride in the Alps and has been met with resistance for raising awareness about Lyme, rather than having been celebrated for it.
If you care about the devastation caused by HIV/AIDS, then you really should take in the information below.
- You should read this. Just a few weeks ago, 28 patients filed a federal antitrust lawsuit against the Infectious Diseases Society of America, eight health insurance companies, and seven medical doctors, Courthouse News reported yesterday, “because health insurers are denying coverage with bogus guidelines established by their paid consultants, who falsely say the disease can always be cured with a month of antibiotics.” The suit alleges that infectious disease specialists—including some of whom who are credited with having created the guidelines used by most doctors to diagnose and treat Lyme disease—have significant financial incentives for denying diagnosis and treatment of Lyme disease among patients, even some who are gravely ill.
- The guidelines created in part by the above-mentioned doctors were the subject of a prior antitrust lawsuit by the Attorney General of Connecticut, who found a long list of alleged conflicts of interest. As a result the guidelines were reviewed voluntarily by the organization that created it—and were determined by that organization to be sound.
- Ten years later, in February of 2016, the federal National Guidelines Clearinghouse (NGC, a national database of clinical treatment guidelines) removed the 2006 IDSA guidelines from its database, for failing to comply with federal requirements by not updating its guidelines against the most current science. The Poughkeepsie Journal reported that “The clearinghouse sets a five-year limit for guidelines, after which they must be updated or removed. That should have happened in 2011, Lyme-care advocates argued.”
- The CDC—a federal public health agency that falls under the Department of Health and Human Services—continues to endorse the IDSA guidelines, despite having been determined by the Agency for Healthcare Research and Quality (AHRQ, publisher of the NGC, also a federal public health agency that falls under the Department of Health and Human Services) to be outdated and not reflective of current science.
- In 2014, the Canadian Parliament passed legislation called the Federal Framework on Lyme Disease Act that states in no uncertain terms that “...practices for dealing with, Lyme disease are no longer sufficient or in line with emerging evidence of how the disease operates...” and “...the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness.” As a result, the parliament ordered that Canada cease following the recommendations of the United States Centers for Disease Control and Prevention (CDC) as it has done historically and, breaking from that historic precedent, create its own guidelines so as not to abandon its own sick people with a treatable illness.
- Prominent physicians and other healthcare specialists have been speaking out more and more recently about Lyme disease as “a human rights concern” because patients with severe, degrading illnesses are being turned away by and sometimes even laughed at by doctors.
- According to the CDC, over 300,000 Americans are estimated to contract Lyme disease every year. The average number of new HIV infections in the U.S. hovers around 40,000. And yet, the federal government invests about $25 million in researching Lyme disease every year, and $3 billion in researching HIV.
- Randy Shilts, author of And the Band Plays On, criticized the federal government and the news media for ignoring the HIV/AIDS crisis as it was devastating lives. You won’t believe this, but the band is playing on...but this time it’s Lyme disease. With exceptions that are mostly local news networks and newspapers, news media depictions of Lyme disease are limited, are almost never investigative as they must be, and even major news organizations that are trusted imminently by their readers including the Washington Post, VICE News and others are reporting with extraordinary bias and zero critical or objective reporting. And there is absolutely no way to convince them otherwise. I have tried, appealing to editors and news producers with deference and respect even as I’ve questioned their objectivity. (The only editors who have ever responded to my inquiries were from The New York Times, who wanted to listen to a reader’s concerns—a testament to the organization’s commitment to journalism with integrity—and the Washington Post editor who told me that the newspaper will happily rest on the laurels of its award-winning editor without further conversation, thankyouveddymuch.)
- One example: the author of this 2012 Slate story that calls people who contract Lyme disease and don’t recover quickly from it “delusional” and “conspiracy theorists”; she goes on to attempt to politicize the disease by suggesting that Lyme patients are Mitt Romney voters (??!); and most alarmingly, she admits to “disregarding my own advice about not taking an anecdote as data,” posthumously un-diagnosing one of her brother’s deceased acquaintance’s Lyme disease to suggest that had the woman been simply given antidepressants for her delusional illness, she would be alive today. She proclaims that Lyme disease is “...much more likely to be depression, and depression is treatable.” This person is now health, science and environment editor at the Washington Post. I requested a meeting with her or with other WaPo editors to discuss my personal experiences with Lyme disease, what I’ve learned from having met hundreds of others in a similar situation, and current scientific evidence. The only reply I received was from a deputy national editor, who told me that this editor has a “stellar career” and that “a five-year-old tweet isn’t proof” of bias. The bizarre tweet, which calls people with Lyme disease “truthers” and sarcastically suggests that people with Lyme should vote for Mitt Romney is proof of bias, as is the article the tweet links to, and most strangely of all—something I cannot wrap my brain around and which I desperately want an explanation for—is what would compel a health editor to politicize a disease while at the same time mocking patients (as disrespectfully, I must add, as was done to AIDS patients in the early 1980s), and then in an article independently determine that a deceased individual was living with depression and not the disease with which she was diagnosed by an actual medical doctor.
How is any of this justifiable or dismissable?
This is how: Lyme disease is a direct correlate in many ways to the early days of the AIDS crisis. If you were alive in the 80s, you’ll remember the indifference, derision and even mockery with which many AIDS patients were treated—yes, even on national television programs.
At this time, 7.5 times more American people are estimated to contract Lyme disease every year than HIV—and with the exception of the unlucky 300,000 and their loved ones, no one cares.
World AIDS Day hits me every year like a punch in the gut because I grew up as a child and then a young gay man at the height of the HIV/AIDS crisis. I paid close attention to what science I could glean and particularly to the cruel, inhumane treatment afforded to AIDS patients in the 1980s. My prayer on this World AIDS Day is that people will soon wake up and realize that the lesson of the HIV/AIDS epidemic is not disease specific. It’s a lesson, too, about consciousness, about being aware of imminent and present threats, and about empathy and compassion.
And the Band Plays On...
I’ve got a book in front of me: According to the cover, it’s the “20th Anniversary Edition of the Classic Bestseller.” The book is called And The Band Played On: Politics, People, and the AIDS Epidemic.
It was written by Randy Shilts, who in the book’s acknowledgments states, “I would not have been able to write this book if I had not been a reporter at the San Francisco Chronicle, the only daily newspaper in the United States that did not need a movie star to come down with AIDS before it considered the epidemic a legitimate news story deserving thorough coverage.”
It’s a striking statement, isn’t it, with the benefit of hindsight? What Shilts in 1987 described an epidemic we now know to be a pandemic, a global massacre by infectious disease. According to AIDS.gov, 36.9 million people currently live with HIV/AIDS and, “Even today, despite advances in our scientific understanding of HIV and its prevention and treatment as well as years of significant effort by the global health community and leading government and civil society organizations, most people living with HIV or at risk for HIV do not have access to prevention, care, and treatment, and there is still no cure.” Thirty-four million people have died from AIDS to date.
Shilts understood what others did not because, as a reporter in San Francisco, he saw the devastation in a way most didn’t. He also acquired HIV himself. His health crisis and the roadblocks that the medical community put before him as a result motivated him to investigate.
A couple of important selections from Shilts’s prologue:
Acquired Immune Deficiency Syndrome had seemed a comfortably distant threat to most of those who had heard of it before, the misfortune of people who fit into rather distinct classes of outcasts and social pariahs. But suddenly, in the summer of 1985, when a movie star was diagnosed with the disease and the newspapers couldn’t stop talking about it, the AIDS epidemic suddenly became palpable and the threat loomed everywhere.
Eventually, Shilts wrote, “there was a threat to the nation’s public health that could no longer be ignored.” But:
By the time America paid attention to the disease, it was too late to do anything about it. The virus was already a pandemic in the nation, having spread to every corner of the North American continent. The AIDS epidemic, of course, did not arise full grown from the biological landscape; the problem had been festering throughout the decade. There had been a time when much of this suffering could have been prevented, but by 1985 that time had passed. Indeed, by the time we learned that Rock Hudson was stricken ... hundreds of thousands were infected with the virus that causes the disease.
It’s late May. May is Lyme Disease Awareness Month. Unlike World AIDS Day, which even Google has indexed on its calendar, and likewise unlike Breast Cancer Awareness Month, Lyme disease awareness activities don’t get much publicity. A lot of people work hard to raise awareness, but sadly it’s mostly among themselves — as was the case before Randy Shilts began to publicly document the HIV/AIDS crisis and, more significantly even in Shilts’s admission, before celebrities began to contract HIV or act out in support of AIDS patients. Elizabeth Taylor alone fast-forwarded recognition of the reality of HIV/AIDS by years and saved countless lives in doing so.
I don’t know how to make this plainer: Lyme disease is the AIDS of our time. We are, right now, where Randy Shilts was when he wrote And the Band Played On. Yet only 30 years later, the public still can’t see what’s right in front of them. Health Scares of the Week, from Ebola to West Nile to SARS to bird flu to swine flu come and go and thus far have affected few Americans; meanwhile, one in every 100 Americans each year contracts Lyme, and many of them develop multiple sclerosis-like conditions following prescribed treatment. Patients are desperate, many going bankrupt trying to find help for their disabling condition. They are met with silence. Sometimes even with laughs.
The very title of Shilts’s book refers to the obliviousness and disinterest of, well, everyone when the AIDS crisis was emerging — there was an explosion of illness. The band played on, undisturbed and uninterrupted.
The band is playing on now, as I write this.
The CDC estimates that over 300,000 Americans are diagnosed with Lyme disease each year. The CDC unfortunately also insists that Lyme can be easily diagnosed and easily cured, permanently. So strange for a public health crisis of the sheer magnitude of Lyme disease, relatively little — $24 million per year — is invested in researching the disease pathology, diagnostic tests, and treatment.
As with AIDS and Rock Hudson, respectful Lyme disease stories have made the news most often when a celebrity who has Lyme was involved. Avril Lavigne was put on the cover of PEOPLE, and she told NBC’s Today that, “This is what they do to a lot of people that have Lyme disease. They don’t have an answer for them, so they tell them ... ‘You’re crazy.’”
And the band played on. My experience was the same: The first neurologist I saw gave me thousands of dollars of tests (some of which my insurance did not cover, including an MRI I paid out of pocket for) and then concluded, “I wouldn’t be surprised if a nice, long beach vacation didn’t make all your symptoms go away.” A year later, after my leg was going intermittently paralyzed and I had double vision, I saw another neurologist. Two years and dozens of labs later, he concluded that the many lab anomalies, some of which were “very concerning,” didn’t add up to multiple sclerosis or any other known condition. “Something is definitely going on with you,” he said. “Something neurological. But unfortunately, we have no idea what it is.” And without a diagnosis, I was dismissed — that was all they could do. He told me to come back if two of the following three things happen:
- Double vision for longer than one week, in consecutive days with no break.
- Paralysis of a limb for longer than one week, in consecutive days with no break.
- Incontinence. That is, losing all control of my bowels.
Otherwise, it was essentially, “We tried. We looked. We have no idea. Try to take your mind off of it because, unfortunately, that’s all that can be done at this time.” I appreciated the honesty, frankly.
And I was surprised and disappointed to discover that so many medical doctors today are one hundred percent dependent on existing laboratory tests to determine whether or not anything is wrong. Even if a patient is falling apart, in excruciating pain, even with paralysis, most doctor do not investigate once labs come back inconclusive. In my mind, this lack of medical investigation is a perfect recipe for cultivating a new epidemic such as HIV/AIDS. We now know that AIDS victims may not be symptomatic for 10-15 years, and during its incubation period, those infected can unwittingly transmit it to countless people. Within a decade, the contagion is exponential before anyone even knows the disease exists. This happened prior to the known emergence of the AIDS crisis and the HIV virus in the 80s, and it is bound to happen again if medical professionals refuse to investigate prevalent, consistently presenting medical issues about which not much is known.
Ally Hilfiger, daughter of designer Tommy Hilfiger, has been making the rounds with Bite Me: How Lyme Disease Made Me Crazy, Stole My Childhood, and Almost Killed Me, a memoir of her disastrous young life with Lyme disease. She told New York magazine: “I sat down at my computer and decided one day. I said, ‘Listen, enough is enough, I’m going to sit down and write this.’ And I started writing. There was something outside of me that was propelling me. It was my duty, and I did it,” she added.
Hilfiger said about another prominent case of Lyme, that of Yolanda Hadid (formerly Foster), a star of The Real Housewives of Beverly Hills whose devastating illness has been dismissed as a mental illness such as Munchausen’s by proxy, “It’s very sad what they’re going through, the Hadids, because nobody should ever be questioned about a disease that they’re going through, or what they’re telling people that they’re feeling ... Nobody should question a disease.”
And yet they do. I don’t have the space to go into it here, but in an important series of articles called “Deconstructing Lyme Disease — Room for Debate“ (from 2013, and in desperate need of an updated take based on newer science), The New York Timesdiscusses the Lyme disease controversy from multiple perspectives. This includes, of course, a high-profile person — Amy Tan, author of The Joy Luck Club, who describes a horrific Lyme experience that closely reflects my own. She wrote:
Many members of the medical establishment who dictate the official criteria for Lyme diagnosis, treatment and insurance coverage still maintain that Lyme is easy to diagnose. They discount research that shows Lyme bacteria can evade detection by standard blood tests. And they play down late-stage cases like mine, which require intensive, long-term treatment, insisting the disease is always cured with a simple round of antibiotics.
Above, top: A slide used by the U.S. Centers for Disease Control and Prevention (CDC) during a May 24, 2016 conference call for medical professionals about Lyme disease, stating that the CDC-recommended Lyme disease blood tests are 100 percent sensitive in late-stage Lyme disease. Above, bottom: 8 discrete studies published in peer-reviewed journals concluding that these tests are 18 to 67 percent sensitive. CDC did not cite sources for its 100 percent sensitivity claim, and did not respond to a request for citation.
This is reality. There is a Lyme Disease Awareness Month because the band keeps playing on. We all know that celebrities and well-respected known people have access to special treatment — yet in this truly inexplicable trend, even they are told, when they present with devastating health issues, that they are not ill — Avril Lavigne was lazy, Ally Hilfiger was crazy, Yolanda Hadid has Munchausen by proxy, Amy Tan was told that Lyme is rare and while something may be wrong—something that can’t be diagnosed — it is not Lyme. I was told the same. She started antibiotic treatment and her health improved. So did mine. So did Ally Hilfiger’s, so did Avril Lavigne’s. If you knew someone to whom this was happening, it would blow your mind. Well, brace yourself, because based upon the sheer prevalence of Lyme, the third most common infectious disease in the country and the fastest-spreading bacterial disease, you’ll know someone soon if you don’t already. And you will wish that someone had done more about it before it happened to that person, who could be you or your child. While we fondly reminisce about those SARS and swine flu scares, Lyme disease is approaching from the horizon like a tsunami — a tsunami coming at us from all sides.
The band plays on while countless people go through this same ordeal. Those I mentioned are only a few of the high-profile people who went through this. There’s your celebrity. Pay attention. And then there’s little old me — not known to anyone, but screaming out into the world for people to connect the dots because the downplaying of the emerging AIDS virus of the 80s and the emergence of Lyme and associated tickborne infectious diseases.
The band plays on. Randy Shilts wrote that by the time the public caught on to the prevalence and severity of HIV/AIDS, it was “too late.” I hate to say this, but the same is true of Lyme. Except that, as we saw with HIV/AIDS, it’s not too late to invest in research. It’s not too late to develop diagnostic tests that work. It’s not too late to support researchers so that they can figure out how this bizarre, misunderstood and miscommunicated disease works and then find a way to manage or cure it.
Silencing conversations about epidemics is extraordinarily dangerous. Yet that is what is happening right now. A reporter from a Salisbury, Maryland news station asked the Centers for Disease Control and prevention to speak with her about Lyme disease, given that it is Lyme Disease Awareness Month. She was told:
At this time, we respectfully decline your request for an on camera interview.
She posted the correspondence on the WMDT47/ABC News website, and it’s telling of the way this disease is being handled. Over 300,000 cases per year, dismissed as insignificant and warranting $24 million in NIH funding, in favor of Zika’s emergency status (like SARS, swine and bird flus, Ebola), which is the top priority at CDC and to which Congress is considering dedicating $622 million to $1.1 billion in response to the White House’s request for $1.9 billion.
CDC Director Tom Friedman was quoted in the New York Times as saying: “Three months is an eternity for control of an outbreak,” he said, adding: “There is a narrow window of opportunity here and it’s closing. Every day that passes makes it harder to stop Zika.”
“This is no way to fight an epidemic,” Friedman said.
To date, Zika has affected 544 Americans, not one of whom contracted it domestically.
Annually, over 300,000 Americans contract Lyme disease in this country. Think about those numbers. You can count to 544. Try counting to 300,000.
Denying funding, refusing to revise medical guidelines that are not working, denying media interviews about Lyme disease... This is no way to fight an epidemic, I say.
I have to tell you, thinking and talking about Lyme disease brings tears to my eyes. Not only because of the terror it has brought to my life. Not only because I’ve now met hundreds of people who are going through similar stories. Not only because, despite so many high-profile cases making the news as blips that come and then are forgotten. But because this has happened before, and histories like this should not repeat.
From And the Band Played On:
Because of their efforts, the story of politics, people, and the AIDS epidemic is, ultimately, a tale of courage as well as cowardice, compassion as well as bigotry, inspiration as well as venality, and redemption as well as despair. It is a tale that bears telling, so that it will never happen again, to any people, anywhere.
Shilts wrote this in 1987. He died from AIDS in 1994.
Find me, say hi, argue with me on Twitter @Artistlike.
If you’d like to see more in-depth research about Lyme and associated tickborne diseases, visit And The Band Plays On.