Failure to Fund, Part Six

Hillary Johnson

Find the Fur Coat...

In my previous story, part five, I reported that, according to government reports, the U.S. health agencies' annual domestic AIDS budget was more than $26 billion, despite the fact that AIDS had become a manageable or treatable health condition in the U.S.

The "HIV.gov" website page from which this information is taken includes the sentence, "Transparency in government promotes accountability, and provides meaningful access to information so that citizens can know what their government is doing and how Federal dollars are being spent." A worthy sentiment. If you've had ME for any length of time and hoped for meaningful information from the government, especially regarding how federal dollars are being spent, you are welcome to your hearty laugh. This page also notes that "Responsibility for HIV research is led by the National Institutes of Health," pertinent to a series on the NIH's failure to fund ME.

If history is any guide, we're unlikely to get a full accounting of how much money has been spent on AIDS historically and certainly will never know the true story about how much (or how little) has been spent on ME. In the early 1990s when I was working on Osler's Web, I remember interviewing the late Claiborne Pell, the Rhode Island senator for whom the Pell grants are named. Pell told me his staff had been trying for months to learn from staff at the Centers for Disease Control how much money was being spent on ME but had been unsuccessful. In fact, his staff had given up. If a senior U.S. Senator with Pell's clout couldn't drag these critical figures out of CDC, one might conclude, no one could. A congressional investigation involving a fleet of forensic accountants might be a good start, however. I was able to learn that CDC stole at least $150 million designated by Congress for ME over a decade only because an insider helped me decipher pages of documents with nothing but numbers and letters laid out in columns. An agency employee for decades, he knew all the codes. He did me this favor only after he had retired from the agency and in the secrecy of his basement office in an Atlanta suburb. That sum, $150 million, sure sounds like peanuts today. Nevertheless, it's interesting to remember that there was a period in history when Congress was demanding that the agency perform ME research and was supplying the agency with millions of dollars for that purpose. Even if CDC subverted the will of Congress.

Forgive one more digression: when I started working at Life magazine years ago, a veteran photographer told me the magazine had dispatched him once on short notice to photograph a story in Alaska. A resident of Los Angeles who was visiting NYC, the photographer bought a fur coat when he got to Alaska. It was February. The first expense account he submitted to the magazine itemized the fur coat. Time-Life accountants returned the invoice to him unpaid, accompanied by a note letting him know he would not be reimbursed for the coat. He submitted a new expense account for the assignment. He did not add the fur coat to his invoice this time but wrote in the margin, "Find the fur coat." Notably, he was reimbursed in full. 

When contemplating government spending reports the phrase "find the fur coat" always runs through my mind. One of the fraudulent claims that my CDC mole spotted, for instance, was CDC staff's repeated inclusion of the annual salary of someone who hadn't worked at CDC for years in their annual accounting to Congress of their ME research expenditures. The CDC also reported spending $26,000 for travel one year when the only travel had been the division chief's trip to London at Christmas to see family members.

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Going forward, I will capitalize the word BILLION throughout so readers don't mistake BILLIONS for millions, a word to which people with ME have become accustomed.

And I will attempt to break down that "more than $26 BILLION" here with the certain knowledge that all numbers may be off by millions or more, may be either exaggerated or under-reported and all are political in the sense that they serve the government's interests, not the public's. They purport to be a breakdown of the government's spending on AIDS in the U.S. My point is, be aware that these are the numbers the government wants you to know about and may not be accurate.

"Some of these categories are set in stone and some are variable. Social Security, for instance, is set in stone. What you want to look at is discretionary spending. It's just huge."

HIV.gov provides two kinds of funding categories, discretionary and and non-discretionary. "Discretionary" means the government used the money for research rather than funneling it into some longstanding social program. Combined, discretionary sums within the $26 BILLION-plus AIDS budget of 2017 exceeded $9 BILLION. The non-discretionary $18.8 BILLION was dispersed to myriad programs that have existed for years to improve the lives of the HIV-positive.

Some examples of non-discretionary spending is the Ryan White Program, which provides over $2 BILLION to pay for health insurance for HIV infected people. The U.S. government also spent $356 million in 2017 on housing for HIV-infected people. (Compare that sum to $17 million for three research centers for ME the same year.) Though probably not particularly relevant, the U.S. also spends $116 million for drug rehab for HIV-positive people. (Compare to approximately $15 million for ME research in 2018.)

Medicare and Medicaid receive more than $15 BILLION annually to pay for HIV-infected people’s healthcare. Another $2 BILLION goes to Social Security Disability payments. Another $900 million per year--almost a BILLION--goes to a program called “ADAP” ("AIDS Drugs Assistance Programs”) which pays for antiretroviral drugs for people who are infected with HIV and cannot afford any of the drugs available to treat the disease and prevent its transmission. An enormous sum of money and effort has been spent on vaccine development over the years, a failed endeavor, thus far. New drugs are being developed that may be taken on a monthly basis rather than a daily basis to make therapy more convenient.

In government literature, the old acronym "PWA," is nowhere in sight. Today's politically and scientifically correct acronym is "PLWH," for "people living with HIV." 

William Mitchell, a pathologist, microbiologist and immunologist at Vanderbilt University in Nashville has been studying the activity of Ampligen in ME for several years. Not surprisingly, he takes an interest in the funding disparities between ME and other diseases, most especially AIDS. He's obviously frustrated.

"Some of these categories are set in stone and some are variable. Social Security, for instance, is set in stone. What you want to look at is discretionary spending. It's just huge," he says.

At the moment, PWME are seeking a commitment of money to support research, nothing more. They are not asking for free housing, drug rehab, free treatments or medical care.

So, looking exclusively at discretionary spending, or research dollars, the NIH, according to this website, spent

$2.6 BILLION on domestic AIDS research in 2017.

The Veterans Administration spent

$1.2 BILLION on domestic AIDS research that year.

The CDC spent

$789 million on domestic AIDS “prevention and research.”

Please send corrections to this website, but I believe the total is approximately $4.6 BILLION.

Another relevant category listed in the federal AIDS budget for 2017 is described as "Other domestic discretionary."

A footnote explains that recipients in this category are "[the] HHS Office of the Secretary; Health Resources and Services Administration; Food and Drug Administration; Indian Health Service; Agency for Healthcare Research and Quality; the DC Fund, and the Departments of Defense, Justice, and Labor."

The amount appropriated to the agencies and entities in this category was also $4.6 BILLION in 2017.

As regards this particular discretionary category, I would say, "Find the fur coat" because specific sums are not revealed on this particular web page. Vanderbilt's Mitchell suspects the largest recipient of the "other domestic discretionary" BILLIONS is the Department of Defense.

"The Army has spent significant monies in breast cancer," Mitchell notes. "What that has to do with defense is beyond me, though increasingly women are serving. [Clearly] there were lobbyists who got their way. It's all about who has the best lobbyist. CFS has never had a good lobbyist. HIV had very effective lobbyists."

Excluding the "other domestic discretionary" category, Mitchell says, “If you add all relevant governmental research funding, it is $4.6 BILLION--compared to about $15 million for ME in 2017, a thirty-fold disparity. In addition, there is financial help for drugs and housing (for AIDS) that is not available to ME patients. Lastly HIV/AIDS has been rendered a chronic disease for drug compliant patients with forty [FDA] approved anti-HIV drugs.”

Thinking about this disparity in terms of percentages might help. The $15 million awarded to ME researchers by NIH in 2018 is equivalent to .3 percent--three-tenths of one percent--of the $4.6 BILLION discretionary budget discussed above. The ME grant awards comprise .05 percent of last year's entire $26 BILLION-plus domestic AIDS budget, or one half of one tenth of a percent.

Given that 1.1 million are living with HIV in the U.S., compared to estimates of from 1 to 4 million people with ME in the U.S., and given that PLWH have access to drugs that allow a normal life-span without debilitating symptoms or any symptoms while half of ME patients are bedridden and a few are even starving to death in their beds, these are damning numbers.

One needn't rely on HIV.gov. There are scores of information sources online about AIDS funding and AIDS programs within the U.S. Government. One, published by the Office of AIDS Research (an office within the National Institutes of Health) reports that the NIH's domestic spending on HIV in 2019 will be $2,911,603, or nearly $3 BILLION. The NIH's approximately $15 million extramural awards to ME researchers in 2018 are equivalent to .5 percent of that figure, or half a percent. A stroll through this publication provides an intriguing sense of the NIH's potential to conquer a disease given time and extraordinary sums of money. By comparison, NIH's publications on ME project a kind of high-school level competency. One can't help but think while perusing the Office of AIDS Research publication, "So this is what it looks like when NIH takes a disease seriously!" Considering that a greatly admired scientist at NIH, the late Stephen Straus, was able to persuade his colleagues and the rest of the scientific world that ME wasn't worth even one scientist's time in Bethesda, one can almost understand how the obscene disparity between ME and AIDS might have occurred--initially.

It's harder to explain the thirty-five year lag. ME literature has always been available to NIH scientists to read; no one locked it away in a bank vault. The fact that at least two scientists isolated evidence of a novel virus in the disease, once in 1991 and again in 2009, should have stimulated someone inside NIH to look further instead of shutting down lines of inquiry. An impetus to fix AIDS seems to have taken on a life of its own to a degree that it obliterated another disease equally worthy of NIH's attention. Let's postulate that in 1985, there were only half a million ill with ME. Had anyone at NIH devoted enough resources to studying the epidemiology of the disease, it's quite possible ME might have been controlled just as the spread of HIV has been controlled.

Vanderbilt's Mitchell has his own view: "I can give you one reason why HIV gets so much money--there is a diagnostic assay for it...Physicians need markers."

True, but as Mitchell would be the first to agree, you won't find a diagnostic assay if you haven't any money. The NIH has starved ME researchers of appropriate funding for decades. And after all the petitions and Congressional nudging, they are still doing it.

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The largest recipient of AIDS research money by far has been Tony Fauci, the long-time director of the National Institute for Allergies and Infectious Diseases. Fauci's institute has commandeered hundreds of BILLIONS of dollars for AIDS research over the decades. Can it be coincidence that Fauci has also been the single most influential person at NIH to keep funding for ME at near zero? Anyone who has been reading this site for a while knows that history. Fauci is the Pope of AIDS, although writer and activist Larry Kramer once also called him a murderer. Fauci is historically the biggest enemy of ME in the Department of Health and Human Services. What many don't know is that Fauci mentored Stephen Straus and was his biggest supporter when it came to ME, even going so far as to throw his (Fauci's) weight at specific Congresspeople, demanding that they tell their sick constituents to end their effort to see Straus fired or reassigned.

Morgan Fairchild and Carol Head of Solve ME/CFS, ME sufferers both, went to visit Fauci in 2015 after the Institute of Medicine report came out suggesting ME was an important disease afflicting as many as 2.5 million people. Surely, they must have imagined, they had the ammunition they needed. But they misunderstood the politics of Fauci's decade's long strategy to bury ME. Fairchild and Head asked if he would consider removing ME from the the Office of Women's Health and Research where he had placed it years ago, a cynical action if ever there was one. His answer, quite predictably, was No. There is now a trans-NIH collective of institutes all of whom purport, by virtue of their membership in this group, to have some interest in the disease, presumably a good development. Nevertheless, I think the admittedly crude question remains: show us the money.

Retired NIH scientist Frank Ruscetti remarked six years ago that, in terms of scientific progress, "ME [was] where AIDS was in 1983." Is ME now where AIDS was in 1989? I don't think so and I think the NIH's decision not to fund appropriately is why. (Day Brightener: Ruscetti also claimed that Napoleon had a "Fauci complex.") What changed in 1984 for AIDS? A virus was identified in patients and named the cause of the disease. What will change the arc of history in ME? I believe it also will be the discovery of a virus that can be shown to be in nearly every or all patients. That's the missing diagnostic marker. So far, NIH and CDC have withheld money from those who might make that discovery and destroyed the careers of at least two who may have come too close. Patients and scientists who don't want ME to be a viral disease are not helping matters, but theories for other scenarios are crumbling as the years fly by.

Thirty-five or more years of spread and millions sick. The cause remains unknown and the only viable treatment, Ampligen, remains unapproved and unavailable to almost everyone. And NIH has not paid out even one BILLION in research grants yet.

 

***

 

The AIDS-industrial complex has had decades to grow and prosper. It’s deeply embedded in the NIH and CDC's accounting systems and administrations. The CDC and NIH still maintain two budgets—one for AIDS and one for everything else. How these obvious disparities between AIDS and ME and no doubt many other diseases will be unwound, if ever, is unknown. Two obvious bets are that Congress will need to intervene and/or Tony Fauci will need to leave, something he appears to have no intention of doing.

 

Any notion that the NIH methodically takes into account the kinds of considerations Dimmock and Leonard Jason delineated in their paper, “Estimating the Disease Burden of ME/CFS in the United States and its Relation to Funding,” is untenable. The authors calculated that based on factors like lost years of productivity, morbidity levels and lost quality of life, $250 million was the appropriate sum for the DHHS to spend on ME. 

Chump change.

 

When federal health administrators decide to start spending large sums of money on a disease, they appear to ask themselves, "Is the disease serious, as in, can it kill you?" But more to the point, they want to know, “Is it capable of spread?” In fact, when it comes to infectious diseases like Zika, Ebola and AIDS, the kinds of calculations Dimmock and Jason cite go out the window. Extraordinary sums of money—BILLIONS of dollars—are thrown at these problems, based on decisions made unilaterally at NIH, even if only a handful of people have fallen ill. Belabored calculations of the kind undertaken by Dimmock and Jason, things like quality of life, aren’t even factored in.

 

That’s been true of Zika, West Nile, SARS, Ebola and of course, most dramatically, AIDS. Of interest is exactly how much government money will be thrown at the polio-like Acute Flaccid Myelitis going forward if the government continues to identify more cases. This is especially true because ME is also a polio-like illness that numbers in the millions of victims. 

Last November, when cases of Acute Flaccid Myelitis rose to seventy, the CDC formed a task force for the disease comprised of infectious disease specialists and epidemiologists, exactly what they should have done when ME appeared on the scene in the mid-1980s. The NIH's Avi Nath is among the Acute Flaccid Myelitis task force members. Nath is also is in charge of the snail-paced ME study at NIH (with, after two years, six moderately ill patients signed up, one of them a former NIH press agent). Will Nath contribute the larger portion of his time to ME or to  Acute Flaccid Myelitis?  AFM qualifies as an "emerging" disease and although there has been lots of squirming around and nonsensical remarks by the government on this matter, the general consensus is that it's contagious. After 1988, ME was no longer seen as "emerging" or contagious because the CDC locked it down in a psych tomb where it lay buried for two generations. In 2019, most people think it's a malady that has been with us forever; those who can remember when it wasn't are starting to die off.

 

What is an important common denominator among the diseases named above (with the exception of ME)? They are accepted as infectious diseases. Addtionally, they aren't burdened with whacky theories. Scientists believe it is possible to tell them apart. No one is talking about “hit and run” with Ebola or AIDS, nor are they worrying about histories of childhood trauma in victims of these diseases. No one is seeking to explore genetic weirdness among victims that make them more vulnerable to, say, Zika virus, than anyone else. No one is saying any virus can trigger SARS or West Nile. No one is talking about breaking Ebola into twenty subsets, each of which must be carefully defined and separated before any sense can be made of the disease. No one is proudly identifying themselves as “lumpers” or“splitters.” No one ever said the following about any of these diseases, “There is no virus. We looked and couldn’t find any.”

Tellingly, the summer before Judy Mikovits' paper about XMRV appeared in Science in October of 2011, NIH's top AIDS scientists held a secret emergency meeting on the NIH campus in Bethesda to which Mikovits and several murine retrovirus experts were invited. Mikovits presented her data. According to several of those present, her presentation was followed by a long silence and finally, an "Oh my God," from one of those at the table. If one reads the minutes and summary of this meeting, as I did, it's quickly apparent the biggest concern at NIH was the fact that an infectious virus with the capability to cause cancer was spreading within the U.S. population. "They didn't care about ME," Mikovits told me later. "They cared about the lymphomas." The author of the minutes, NIH AIDS scientist Stuart LeGrice, sought advice from his colleagues about how best to handle the public impact of Mikovits' paper, due out the following October. He and fellow NIH-ers were nervous as cats. Soon after that meeting, several AIDS labs on the NIH's Fort Detrick campus in Maryland were immediately "re-purposed" to investigate XMRV. One take home from this episode is that NIH administrators have the ability to turn on a dime sparing no costs assuming they are sufficiently impressed an infectious virus capable of causing serious illness is on the loose.

 

Do I want ME to be infectious just so NIH will throw $26 BILLION or more its way every fiscal year? No. Do I want the government to admit what it inevitably must face? Yes. ME is an infectious disease. No other explanation holds up. We are all probably familiar with the French neurologist Jean-Martin Charcot's comment, "Disease is very old--nothing about it has changed. It is we who change as we learn to accept what was formerly imperceptible." He also asked, "Why do we have to go over the same set of symptoms twenty times before we understand them? Why does the first statement of a new fact always leave us cold?"

The fact that the government has erected every possible barrier imaginable to finding the pathogen for more than three decades surely will be viewed in coming decades as possibly the biggest health policy mistake in U.S. history.

 

I have been talking about transmission of ME since I published Osler’s Web in 1996 and received little but harassment, censorship and even a kind of terror campaign on the part of the largest patient organization of that era. I’m sorry if the topic makes people uncomfortable--but that’s part of the problem.

 

When the government starts funding virologists and epidemiologists to look for the pathogen that causes ME, when they start spending BILLIONS instead of a few million, we will know the guilty parties who launched and enforced these no-fund policies are either dead or in assisted living--or alternately, their wives or their children have been disabled by ME.

 

***

 

Ursula LeGuin’s short story The Lathe of Heaven describes a man whose dreams have the power to alter reality. She names his ability, or curse, “effective” dreaming. His subconscious mind seeks to make the world better by tackling the most stubborn human disasters through his dreams. Every dream backfires in spectacular ways. Seeking to resolve overpopulation, he dreams of a plague that kills 7 billion people. In an effort to rid the world of racism, he awakes to discover the entire planet, including everyone's skin, has turned grey. To summon world peace, he dreams of an alien invasion, a threat that unites the world but the aliens win the war.

 

As the years pass I find the ME story to be less like an Evelyn Waugh satire, especially the CDC's clueless investigation in Nevada, and more like some dream LeGuin’s hapless protagonist might have dreamed. What started as fodder for a British sit-com, beginning with EIS officers running amok in a resort town and a couple of smart doctors scratching their heads in disbelief, has become a life and death drama affecting tens of millions worldwide. Some of us know what went catastrophically wrong because we were there when it happened. Nevertheless, imagine the ME story in LeGuin’s hands. What was the original, intractable problem requiring a solution? Unequal pay for equal work? Ripping millions of women from the workforce and sending them to their beds for the rest of their lives might have been the diabolical fix--the “effective” dream predictably gone wrong, even if it also snared a minority percentage of men and boys. The sole upside for men and boys who fall ill with ME: they can legitimately claim to know what it's like to be a second class citizens. Instilling in men an abiding respect for women's human rights might just be another "effective dream" topic turned nightmare reality, were LeGuin crafting this story.

 

Like so many other natural disasters made infinitely worse by human error and abuse of power, the fate of ME victims is a spiritual dilemma I cannot resolve to my satisfaction. Fact-based philosophical interpretations of this tragedy, as well, belong to historians yet to be born. I'm leaving them my archive, a complete record of my reporting that was conducted in real time, so they will have full access to thousands of pages of transcribed interviews and correspondence with government scientists, doctors and academic scientists from all over the world on this subject. My reporting on this disease began in the mid-1980s and ended ten years later. These historians will be free to choose their own narratives and interpretations from this time-capsule journalistic effort, just as I was free to do when I created the narrative of Osler's Web. With 20-20 hindsight, they may discover rationales and good motives I somehow never saw in the moment. What I know for sure: their interpretations won't be as facile as “sexist doctors” or some Ted talk’s pretty sounding but empty, “the beauty of ‘I don't know.’” When it comes to ME in 2019, "I don't know" is as ugly as it gets.

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