Why Must Americans Resort to Lawsuits to Get the Truth About Their Illnesses?

And when will ME/CFS patients and advocates learn that lesson from 9/11 first responders and AIDS patients?

On this 23^rd anniversary of the terrorist attacks on September 11, 2001, there’s a minor flurry of scientific findings and newly calculated stats about how many of the first responders to the World Trade Center site are sick, dying, or dead. To get help from the Congressionally mandated World Trade Center Health Program, survivors must have diseases that are “certified” as having been caused by one or a combination of the 352 chemical toxins identified in the dust created by the collapse of the Twin Towers—which all New Yorkers inhaled some of, wherever we were in the months following—while telling other gravely ill first responders and survivors that because their diseases are not certified, they shouldn’t expect any help in the wake of what has become a national health disaster. (1)

It was announced this week that more FDNY 9/11 first responders have now died from 9/11-related diseases than the 343 who died during the attack in 2001. Respiratory diseases and cancers have stolen the most lives. (1)

The newest scientific finding is that early onset Alzheimer’s Disease has now been documented by researchers at Stony Brook University as occurring far more often in first responders and survivors of the 9/11 attacks than in the general public. “For the first time, this [study] has demonstrated that exposure to the World Trade Center dust not only caused a variety of systemic problems, such as cancer and lung disease, it also caused neurodegenerative diseases such as dementia,” Benjamin Luft, a coauthor of the dementia study and principal investigator at the Stony Brook University WTC Wellness Program, told Gothamist. (2)

Published in the Journal of the American Medical Association (JAMA), the study followed 5010 “verified WTC responders” from Long Island for five years. Study participants were 60 years of age or younger without any symptoms of cognitive disorder. (3)

Early onset dementia—in persons younger than 65—occurs at a rate of 1.19 per 1000 person-years in general population. The Stony Brook study found that “individuals in the highest exposure category had increased hazard of dementia when compared with individuals who had the lowest exposure ... [T]rend analyses further indicated that increased WTC exposure was associated with increased hazard of dementia.” The “mean risk difference” between 9/11 first responders and survivors compared to the general public was 9.74 per 1000 person-years. (3)

In June 2024, the nonprofit watchdog group 9/11 Health Watch sued New York City on behalf of survivors and first responders for “blocking the release of documents that may reveal what officials knew about the toxic air and health risks in Lower Manhattan in the months after the terror attacks.” For more than two decades, every mayor from Rudy Giuliani to current mayor Eric Adams has blocked release of documents confirming when city officials knew about the health hazards created when the Twin Towers fell. (4)

Meanwhile, people who have taken toxic anti-HIV drugs like Truvada—which is prescribed as a treatment and a preventative—are banding together in class action lawsuits. Plaintiffs are attempting to gain compensation for the incredible harm done to them by Truvada with these lawsuits that target the drug’s manufacturer, Gilead Sciences. Because the lawsuits might eventually include as many as 26,000 plaintiffs, the non-profit AIDS Health Organization has advised Gilead to establish a $10B slush fund to make sure every plaintiff in every lawsuit is compensated for the harm done to them. That harm includes loss of bone density so severe that teeth break, bones snap, and hips give way with little provocation; avascular necrosis (lack of blood supply to bones); chronic kidney disease and more. (5)

With all these lawsuits, why are people still taking such a toxic drug?  If your doctor says you need it to control your HIV levels—a questionable statement, but okay—you might feel you have no other options. But if you’re among the worried well and want to prevent yourself from becoming HIV-positive, and you take Truvada as PrEP thinking it will protect your health, you may be rewarded with broken teeth and bones.

If Truvada’s so bad, why doesn’t everyone know?  In fact, a group of AIDS activists has tried its best to conceal the frightening side effects experienced by people treated with Truvada (tenofovir or TDF) and/or who were prescribed Truvada-containing PrEP. They’ve tried to ban the books by Dr. Rebecca Culshaw, who has written extensively on this subject here on SubStack and in a book, The Truvada and PrEP Disaster. (5)

As Rebecca documents, the Gilead lawsuits assert that plaintiffs “suffered damages that include, but are not limited to, pain, suffering, mental anguish, loss of enjoyment of life, and pecuniary loss including past and future lost wages, health care bills, and other losses.”  One lawsuit stated that “hundreds of thousands of HIV-infected patients experienced serious, permanent and sometimes fatal complications that may have been avoided had the company [Gilead] been honest about the safer alternative it had in the wings.” (5)

Is either of these models that ME/CFS patients and advocates could emulate?

Since there is—40 years later—no approved treatment for ME/CFS, there’s no manufacturer to target.

So, who can be held responsible?  I think it’s pretty clear to anyone who’s studied, or suffered from, or tried to research ME/CFS that US government science agencies have been less than leaders in the field, limiting funding to ME/CFS researchers and in some egregious instances, misappropriating Congressionally mandated funds meant for ME/CFS research by transferring it to other areas.

Why isn’t there at least one class action lawsuit against government research agencies for their abject neglect—which I would call criminal negligence—of ME/CFS?

A description of The Why: The Historic ME/CFS Call to Arms by Hillary Johnson (author of Osler's Web) describes how her latest book “enumerates the harm CDC has caused sufferers, comparing the CDC's pseudo-science with 1930s eugenics. [Johnson] makes the case that in lieu of undertaking realistic disease control methods, the agency has instead mimicked techniques employed by major corporations to mislead and manipulate public opinion. Rather than admit mistakes or start anew, the agency has used corporate messaging and re-branding to mitigate damage control. It has appropriated what it calls ‘thought leader’ status in the realm of ME in the form of meaningless, science-free diagnostic criteria in what one doctor has described as ‘The most curious invention of American scientific imperialism that one could imagine.’ It's hard to arrive at the end of The Why without a clear sense that since the CDC's involvement in the disease in the mid-1980s, the health agency has done nothing to help patients and everything to hurt them.” (6)

The Centers for Disease Control and Prevention, National Institutes of Health, National Cancer Institute, Food and Drug Administration—all of these government research agencies (and more) are culpable. For 40 years, they have mistreated patients, mischaracterized the illness, misappropriated funds, and heckled serious researchers, ensuring that no cause, no test, no biomarker, and no treatment for ME/CFS will be identified or created.

Where’s the non-profit watchdog group for ME/CFS that will file lawsuits on behalf of patients?  Where are the law firms that will take on a class action lawsuit (or two) on behalf of ME/CFS patients and researchers?

Why is no one being held responsible for the 40-year-long national health disaster that is ME/CFS?  Was the die really cast forever by CDC’s bungled investigation in 1984?

In late 2001, New York didn’t have an autumn, or even much of a winter. The jet fuel from the planes that crashed into the towers burned at a temperature of 2000°F until the end of January 2002, warming the island’s environment. Returning to Midtown Manhattan one balmy day in December 2001, I stepped out of a subway station to find what appeared to be snow falling. It took a minute to register that it couldn’t be snowing when the temperature was 65—the wind had shifted, and Midtown was experiencing a shower of ash from the toxic fires burning six miles to the south. I stood in the street, watching the ash pile up on cars, feeling it in my hair and on my bags, until I realized I was breathing it and ran indoors.

Here's my point: No one can any longer consider him- or herself to be an uninterested bystander of a health tragedy like ME/CFS, AIDS, or the health fallout from the terror attacks on 9/11—we never know what new health threat is waiting around the corner.

You can find my book Ampligen: The Battle For a Promising ME/CFS Drug on Amazon.com.

BIBLIOGRAPHY
1.        Matt Katz. “More FDNY responders have died from 9/11-related illnesses than the attack itself.” Gothamist, September 5, 2024. https://gothamist.com/news/more-fdny-responders-have-died-from-911-related-illnesses-than-the-attack-itself
2.        Caroline Lewis. “9/11 responders much more likely to have early onset dementia, study finds.” Gothamist, June 13, 2024. https://gothamist.com/news/911-responders-much-more-likely-to-have-early-onset-dementia-study-funds
3.        Sean A. P. Clouston, Frank D. Mann, Jaymie Meliker, et al. “Incidence of Dementia Before Age 65 Years Among World Trade Center Attack Responders.” JAMA Netw. Open. 2024;7(6):e2416504. doi:10.1001/jamanetworkopen.2024.16504
4.        Ramsey Khalifeh. “9/11 survivor group sues NYC for documents on Ground Zero toxins.” Gothamist, June 23, 2024. https://gothamist.com/news/911-survivor-group-sues-nyc-for-documents-on-ground-zero-toxins
5.        Rebecca Culshaw Smith. The Truvada and PrEP Disaster. 2024. Available on Amazon.com
6.        Hillary Johnson. The Why: The Historic ME/CFS Call to Arms. 2023. Available on Amazon. com