Failure to Fund, Part Five
During that period when I was living in Minneapolis and finishing my own reporting for Osler’s Web, I found a treasure trove of investigative journalism on July 3rd, 1992 in the Minneapolis Tribune. I did not reference it in Osler’s Web, but in any discussion of federal funding of ME at this late hour it's fascinating to contemplate. The reporting, I think, is nearly as relevant in 2018 as it was the day it was published. Although the topic was AIDS spending by NIH and CDC, the investigation has particular relevance to ME sufferers, as you will see.
The story’s headline, The AIDS Mythology: Misinformation Overstates Epidemic, Understates Funding for Research, was a contrarian stunner in an era when the word AIDS seemed to cause a hush, a mental genuflect, in casual conversation. Its author, Lou Kilzer, was a Pulitzer Prize-winning journalist who worked at the Minneapolis Tribune for just two years before moving on to other newspapers. I read, but didn't fact check, that he is now retired and living in Belize. I’ve often wondered if this gutsy story hastened his departure from the Tribune. In my view, it should have won him another Pulitzer. Of course some stories are just too dark, even for the Pulitzers, especially when they upend beloved shibboleths and challenge deeply-held beliefs.
Kilzer's story about fraud and waste at the NIH and CDC wound its way from the front page of the Trib into the interior of the paper, consuming nearly an entire section of the fat Sunday edition. There were numerous sidebars filled with statistics graphs and charts and a skeptical, at times funny, interview with controversial scientist Bob Gallo. I was riveted.
Kilzer was unafraid to burrow deep into the under-reported and never-reported regions of government and commerce as well as surgically dismantle a paradigm that people by then considered sacrosanct, thanks to federal propaganda. What was that propaganda? AIDS was out of control, an epidemic with the potential to overtake the world. Kilzer had taken nothing at face value. Most especially, his investigation proved that widely-held dismay over AIDS research under-funding was as misplaced as could be.
Certainly, his reporting outraged a lot of people in Minneapolis, including members of my own family and their friends. In the course of my ballyhoo over Kilzer's story I realized I was alone in my admiration. Though implied rather than spoken, people around me believed my illness was neither serious nor catching, unlike AIDS. “Catching” being the critical factor in the years of federal negligence that lay ahead, most especially any research that sought to identify an infectious agent in ME.
What struck me about the Minneapolis Tribune's investigation was the fact that while NIH bureaucrats insisted during my interviews with them that funding for ME would commence when the “science” merited spending money on the disease, they were simultaneously pouring astonishing sums of money into another disease--a disease that in terms of symptomatology and organic signs was eerily aligned with ME. That alignment included reactivated infections with identical viruses; abnormal B-cell/T-cell ratios; multiple signatures of inflammation; fevers and night sweats (at least in the beginning); dementia, B-cell lymphomas--including the once rare Burkitt’s lymphoma--normally seen only in the African "malarial" belt. Additionally, feeling like you were dying. And then dying.
In addition, in those very early years, the science was no more “there” in AIDS than it was in ME, which as we already know has been NIH's go-to excuse for not funding ME for years. In many instances, ME research was moving in parallel with AIDS, with identical discoveries being made in both diseases. AIDS got headlines and aroused fear and sympathy. ME got jokes about Yuppies who were too tired to tie their sweaters' sleeves around their necks, resonant of a WASPY, tennis-playing chic; inevitable, I suppose, with a disease newly named: "Chronic Fatigue Syndrome."
By the late 1980s, for instance, investigators using MRI technology had identified small white lesions in AIDS brains; when paired with neuro-cognitive testing, the findings demonstrated a condition that was identified as "AIDS dementia." HIV-positive members of the military were moved out of sensitive jobs, like flying jets, immediately. The New York Times reported these discoveries on its front page. Virtually simultaneously, the identical findings—brain lesions and abnormal neuro-cognitive tests—were being discovered and correlated in ME, but NIH refused to fund research into brain lesions and abnormal cognitive tests in ME. Commercial pilots with ME, in particular, were either ignored by their doctors and employers and continued to fly, or they grounded themselves out of a fear of crashing and killing themselves and others. For more detailed reading about the sad fate of ME-afflicted pilots and the disease's spread through the aviation industry, see Osler's Web.
By at least one measure, attempts to get help from federal health agencies, the ME rate of spread was at least as impressive as HIV in the 1980s. At CDC, daily calls from sufferers, caretakers and alarmed doctors rapidly surpassed the number of calls about AIDS by the mid-1980s. By 1990, the Atlanta agency was receiving a thousand or more calls in any 24-hour period. When an article about ME appeared in the large circulation magazine Red Book, the agency had to temporarily re-assign an entire division to respond to the letters and phone calls resulting from the publicity.
Similarly, during an interview in 1992, an NIH spokesman for Tony Fauci let me know that in time consumption, queries from Congress, doctors and citizens about ME were superseded in his division only by AIDS. Fun fact: unprompted, he added that just one scientist, Stephen Straus, was remotely interested in the disease at NIH and suggested PWME should be “grateful.”
I also interviewed staffers in Congressional offices who were receiving hundreds of letters, sometimes thousands, from constituents begging their representatives in Washington for help.
Three decades later, scientist Judy Mikovits, an experienced AIDS researcher at NIH, begin calling ME “non-HIV positive AIDS” and characterized the disease as an “acquired immune deficiency syndrome” after she began studying ME. She also called the myriad infectious agents found in ME patients “opportunistic infections.” I found it refreshing to hear these phrases from a former NIH scientist, one who wasn't remotely intimidated by the NIH or any other institution. Of course, it didn't take long before scientists at her former employer, NIH, began distancing themselves from her.
“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that ruins lives,” she told me during an interview in 2009.
Under the headline, The AIDS Mythology, Kilzer began:
“We know the story. AIDS is an exploding epidemic ravaging America. Once confined to gay men and a few other ‘high risk’ groups it has now jumped into the population as a whole to threaten gay and straight, male and female, young and old alike.
“The battle against AIDS is being fought by scientists who are severely underfunded but nevertheless have managed to make tremendous progress in understanding the disease. Special gratitude is due to the U.S. scientist who discovered the AIDS virus and to those who later determined how it kills immune system cells.
“It's a story of universal tragedy and desperate hope. It is compelling. It is frightening.
“And it is fiction. Every element is either a distortion or a lie.” (italics added)
Appearing approximately eleven years after the first case description of AIDS was published in the New England Journal of Medicine by UCLA clinician Michael Gottlieb, here are some gems from Kilzer's story (material in italics are my asides):
· “Infection risk is probably the most important issue that has been distorted by officials and activists. Throughout the 1980s, the estimates of Americans at risk have been greatly exaggerated, products more of politics than science.”
· "New infections with the AIDS virus (HIV), peaked eight years ago in the U.S. (1984) and have gone down dramatically since. The risk to heterosexuals remains small.”
· “More federal money is devoted to AIDS research than any disease except cancer, even though it doesn't rank in the top ten causes of death.”
· “AIDS is often portrayed as the abandoned stepchild of U.S. bio-medical research, strapped for funds and forever coming up short against other, less controversial diseases. In fact, the opposite is true: AIDS is the darling when it comes to research dollars. On a per patient basis, AIDS spending outstrips every other major disease by far.”
· “For each AIDS death in 1990, the government spent $53,745 on research and education, more than fifteen times the $3,241 spent per cancer death and fifty-eight times the $922 per death spent on heart research." (Cardiovascular disease continues to be the cause of one out of every three deaths in the United States. Also, compare $53,745 to the $3 or less the NIH has traditionally spent per ME patient.)
· “One mark of AIDS’ privileged status in U.S.medical research came in 1988, when scientists at the NIH begin classifying research funds as AIDS or Non-AIDS.” (The same, simplified accounting system was instituted at CDC in 1987. The result: both agencies bifurcated all medical research into two categories: “AIDS” and everything else. In 1987, during an interview with Jon Kaplan,one of two investigators dispatched to Incline Village the year before, Kaplan told me he couldn't wait to put “CFS” behind him and turn his career to retroviruses. “They’re hot!” he exclaimed. Kaplan achieved his dream soon after.)
· “Even though the Reagan Administration's budget trimming in the 1980s cost the NIH 1,100 jobs, 400 research positions were added during the same period to study AIDS.”
In the US today, twenty-six years after Kilzer wrote his AIDS fraud story, the disease ME—untreated and so far unresearched by NIH but for a nascent fishing expedition that has accumulated six patients in two years—has overwhelmed AIDS not only in terms of cases but in terms of years of productivity lost and, possibly, life lost. We would know the latter if the government demanded mandatory reporting on ME cases and deaths. Many people have been ill three or four decades. Unable to work, some patients have surrendered multi-millions in lifetime incomes during those critical decades and are living in poverty. I add to the equation the social, emotional and financial unraveling that besets patients and their families, a phenomenon that affects the larger culture in myriad ways—school absences, civil court litigation, divorce, disinheritance and other forms of abandonment, infants and children being raised by seriously disabled parents, chronic poverty, bankruptcies, medical malpractice, premature aging and death.
Add to this list the worst outcome of all: transmission of this dread disease to another person or persons.
Where would AIDS be now if its transmissibility had been lied about and the disease had gone unresearched or grants to academic scientists had been capped at $5 million per year? Or had government scientists stood idly by while AIDS patients were laughed at and called malingerers and hysterics and losers with unachievable ambitions in the mainstream press? Or if the focus of research at NIH and CDC had been on patients’ genetic susceptibility to the disease, or any number of "host factors" or "environmental" issues such as childhood sexual abuse or “allopathic loads?" (The latter being a paradigm of 'stress' and it's role in disease that I confess I've always thought of as CDC's "allopathic load of crap.") Or if no epidemiology had been conducted and no virologists had ever bothered to search for a causative pathogen because government health agencies suggested searching for Agent X was folly? Or if there had been no funding available from NIH to study AIDS?
Imagine the psychology of ME grant writing of the 1980s and 1990s applied to an AIDS grant. In this upside-down world, you could be seeking to research almost any aspect of AIDS, but you didn't stand a prayer of being funded unless you gave lip service to the fact that AIDS was potentially or likely a psychiatric disease. NIH needed to know where you stood on that. No matter what you thought, you had to lie about it on your grant application to curry favor. But in real world history, if you decided to forge a career in AIDS, you didn’t need to postulate that AIDS might turn out to be psychological in order to receive a winning grant score. Immunologists, virologists and myriad other scientific disciplines had only to mention the magic word "AIDS" in grants and reportedly even the least deserving or most inexperienced would be awarded money from NIH. Which was fine. The point was, NIH flung open its doors to grant applicants, welcoming nearly all all comers to the field, believing the disease was important enough to accommodate many minds, many ideas. Call it the AIDS Moonshot of the 1980s and 1990s.
There are currently 1.1 million HIV infected people in the US, according to the CDC. As many as 2.5 to 4 million or more are suffering from ME. The ME numbers are constantly in flux, whether up or down. The government has allowed ME numbers to morph into little more than a guessing game because it conducts no epidemiology. In the early 1990s, I asked the CDC's Keiji Fukuda if his agency had any plans to request that doctors start reporting cases of “CFS.” Then the principal investigator into “CFS,” Fukuda shook his head adamantly. “This will never be a reportable disease,” he assured me. Why, I asked. His repsonse: Asking doctors to report “CFS” would be an exercise in futility since there was no biomarker and no known cause and, Fukuda added, there never would be. Obviously, one could only say that with a straight face if one thought "CFS" wasn't a disease at all.
In the U.S. and Europe, the implications of infection with HIV have been largely resolved with antiretroviral drug therapy. Although people are still acquiring HIV, the numbers are vastly less than they were in the Eighties. In the U.S. today an HIV infected man has the identical predicted life span as any other man, which is 78.7 years. And throughout that long life, he can hold a job for decades and earn income. He is not living in poverty, nor is he from six to eighteen times more likely to commit suicide than anyone in the general population. He does not spend his days bedridden or in constant pain, nor must he be fed through a tube. HIV infected people do not on occasion starve to death in their bedrooms if they develop infections that interfere with their liquid nutrition. I suspect that if even one AIDS patient in a Western nation died such a death today, the entire federal health system of that particular country would be up in arms and word of it would rule the news cycle for days.
Nevertheless, in 2017--thirty-six years after AIDS was identified as a discrete disease--the US government spent more than $26 billion a year domestically on HIV/AIDS, even though the government also notes that, “A person living with HIV who takes HIV medicine as prescribed and gets and stays virally suppressed can stay healthy and has effectively no risk of sexually transmitting HIV to HIV-negative partners.”
The government’s $26.3 billion per year AIDS budget of 2017 includes not just bio-medical research but an array of social services available to HIV positive people including free food, drugs and free housing to many. This is a population whose numbers have dropped drastically from the 1980s. In 2014, for instance, five years ago, deaths that could be specifically attributed to AIDS totaled 6,721 (assuming the government figure is credible). In the fall of 2018, POZ magazine reported that the number of newly infected HIV people in San Francisco, once the epicenter of the AIDS epidemic, was the lowest since the epidemic began: 221 people acquired HIV in the city in 2017, data that came from the city's department of health.
Next and last of Failure to Fund: How the government manages to spend $26 billion a year on AIDS while justifying spending less than $17 million on ME.