Hailed as heroes, 9/11 first responders still haven't gotten their due

Good evening, readers.

There’s a simple fact that’s been gnawing at me as the nation observes the 20th anniversary of the 9/11 terrorist attacks this Saturday: Nearly eight times as many first responders have died since that seismic day as the 412 who were slain during the attacks themselves, according to an examination of the World Trade Center Health Program (WTCHP) and health records. It’s a figure that surpasses the nearly 3,000-person death toll on the day of the attacks.

“A total of 80,745 responders were enrolled in the WTCHP as of March 2021: 62,773 were classified as general responders; 17,023 were Fire Department of New York (FDNY) responders; and 989 were Pentagon and Shanksville responders,” wrote researchers from Western Australia’s Edith Cowan University School of Medical and Health Sciences in a new report published last week. “Of the total responders in the program, 3,439 are now deceased.”

9/11-related illnesses span the gamut from cancers to mental health disorders to, most commonly, diseases that afflict the airways and upper respiratory tract. But while first responders and EMTs were held up as models for the country and personal sacrifice, America has still struggled to repay this nationwide debt in full. The heroes we collectively praised still face bizarre obstacles to receiving medical treatment (for instance, hospitals which won’t sign on to receive federal funds meant for their treatment) and work critical jobs that require long hours for measly pay. And that’s despite the $8 billion paid out through the 9/11 survivors’ compensation fund over the past 20 years.

The path to even securing permanent funding for the compensation fund was a protracted legislative drama in and of itself that left thousands of people grappling with 9/11-related illnesses in limbo. Former President Donald Trump signed legislation meant to address those disparities in 2019, pledging that America would fulfill the promise it made to the firefighters, police, and emergency medical technicians who were deployed during the attacks.

But that game of legislative catchup can’t fix fundamental health issues related to 9/11 and left to fester. One of the most concerning trends highlighted by the previously mentioned study is that about 40% of first responders with reported medical issues are between 45- and 64-years old. That’s a relatively youthful cohort of sick and dying Americans.

And then, as with everything during the COVID pandemic, the outbreak has underscored longstanding pay disparities and exacerbated employee burnout. Fault lines exist even within the ranks of first responders, with New York’s EMTs struggling with skyrocketing demand for their services without an accompanying boost in personnel. The EMT profession, for instance, is slated for 11% growth in workforce over the course of the next decade, according to the Bureau of Labor Statistics (BLS). But median pay in the profession is just $36,650 per year, significantly lower than that of firefighters and police officers and just over the national median across all sectors.

There are no easy answers when addressing complex health and economic policy issues to reduce the financial burden on individuals while creating a stronger, properly compensated labor force. But one thing is clear from the ongoing travails of these American heroes: It’s easy to look at bravery and sacrifice in the wake of tragedy and extol the virtues of prioritizing the needs of the vulnerable. Emulating that bravery collectively has proved considerably more difficult.

Read on for the news before this day of remembrance. And see you again next Thursday.

Sy Mukherjee
sy.mukherjee@fortune.com
@the_sy_guy

DIGITAL HEALTH

Could synthetic brains be the key to brain disease drug R&D? Singaporean researchers have a novel idea for tackling Parkinson's disease: Build a brain to spur more studies and drug development. Literally. The scientists were able to create a synthetic midbrain through stem cells that had been modified to mimic the genetic risk factors for a brain disease like Parkinson's. That's not just cool science for bragging rights. Brain disease drug development is notoriously complex and difficult since it's difficult to access the brain directly, and studies done on conventional mouse models for research purposes are limited by the fact that they're being done on mice and not humans (and consequently don't manifest diseases like Parkinson's the same way we do). The researchers hope that by aping the real thing, we'll be able to better see the progression of brain disorders and create new treatments for Parkinson's disease and beyond. (Fortune)

INDICATIONS

Biogen's Alzheimer's drug rollout isn't going as planned. Pharma giant Biogen has hit a few snags while rolling out its highly controversial Alzheimer's drug Aduhelm (the first ever to be FDA-approved for the underlying disease rather than just its symptoms), its chief executive said during the Morgan Stanley Healthcare Conference on Thursday. Axios reports that Michel Vounatsos cited "near-term challenges" following slower-than-expected uptake of the treatment. A lot of those challenges center on reimbursements for the drug, as major insurers and government programs like Medicare debate whether or not the pricey treatment provides enough of a benefit to be worth covering. (Axios)

Pharma balks at White House drug pricing proposals. On Thursday, the Biden administration unveiled proposals for cutting prescription drug prices that includes popular initiatives such as allowing the government to negotiate treatment costs. The pharmaceutical industry responded with fervent enthusiasm, by which of course I mean that it was out in full force slamming the proposals as innovation game-killers. PhRMA CEO Steve Ubl had this to say about it: “A laundry list of old partisan ideas and not a serious plan to address what patients pay out of pocket for prescription drugs.” PhRMA acting chair and Eli Lilly chief David Ricks added this: "We cannot and will not support policies that also restrict patient access and destroy our ability to develop the next generation of innovative new products." As usual in U.S. healthcare, the blame apparently lies with every industry other than your own, with benefits managers, health insurers, and hospitals drawing drug makers' ire. The White House proposal's prospects are up in the air, but corporate opposition to reforms seem destined to persist. (Fortune)

THE BIG PICTURE

President Biden signs order requiring employers to mandate COVID shots. Will they listen? President Joe Biden on Thursday signed an executive order that would require large employers with 100 or more workers to mandate vaccinations for their employees or require weekly COVID tests. The psychology of the carrot-versus-stick approach to vaccine compliance aside, one open question is whether or not such an order will have an effective enforcement mechanism. And surveys suggest employers are moving far less aggressively than what the White House is calling for in its new rule. "Yet despite a rise in vaccine mandates, corporations lack universal enforcement of those requirements. Nearly half of employers, 48%, report that they allow for religious exemptions, and 47% allow exemptions for health reasons," writes my colleague Megan Leonhardt. "Even fewer companies are willing to terminate employees over these policies. Only about 7% of companies reported they would fire an employee who refused to get a COVID-19 vaccine." (Fortune)

The young leaders reshaping health care. Fortune's 2021 40 Under 40 list of young entrepreneurs and leaders who are on the rise is officially up. I encourage you to peruse the entire list of fascinating honorees, but this being a health care newsletter, I'd like to call attention to the likes of medical drone delivery startup Zipline CEO Keller Rinaudo and Hamilton Bennett of Moderna, who was critical to the company's rapid creation of a COVID vaccine. (Fortune)