Letters on Sonya Massey’s death, vaccine injuries, and much more

First Opinion is STAT’s platform for interesting, illuminating, and maybe even provocative articles about the life sciences writ large, written by biotech insiders, health care workers, researchers, and others.

To encourage robust, good-faith discussion about issues raised in First Opinion essays, STAT publishes selected Letters to the Editor received in response to them. You can submit a Letter to the Editor here, or find the submission form at the end of any First Opinion essay.

“Sonya Massey’s death: How to prevent more killings of defenseless Black women,” by Onyeka T. Otugo and Adaira I. Landry

Sonya Massey should still be alive. The police officers who entered her home in Illinois were not sufficiently prepared to respond to an individual experiencing a mental health crisis. As a member of an organization that has been supporting New Yorkers with mental health concerns for the last 50 years, I can tell you that this has also been the case in New York, where far too many people of color have been killed in encounters with the police. Since 2015, 20 New Yorkers have been killed, 17 of whom were BIPOC.

No amount of crisis intervention training can correct a law enforcement culture where “command and control” tactics are so deeply embedded.

The op-ed by Dr. Otugo and Dr. Landry rightly pointed out that there are people in many other occupations who are better equipped to respond in a way that does not escalate the situation and avoids deadly harm in situations like Sonya Massey’s. In 2021, New York City established a Behavioral Health Emergency Assistance Response Division pilot, or B-HEARD, which responds to 911 mental health calls in select precincts throughout the city with EMTs and mental health professionals rather than police. But even as New York City has taken some steps in the right direction, critical elements are missing from their approach. Trained peers, people with lived mental health experience, can play a key role in forming connections and meeting people in crisis where they are — lowering the temperature of potentially volatile situations.

There are now more than 100 alternate crisis response units operating in cities across the U.S. Many of them learning from the decades of successful interventions by the CAHOOTS program in Eugene, Oregon, where a non-police response — peers paired with EMTs — are dispatched to help individuals in crisis. If such a team had been available in Springfield on the night when Sonya Massey called the police, she might still be alive. Until more municipalities recognize the urgent need for more diverse crisis intervention response systems — and implement non-police responses effectively and meaningfully — more people living with mental health concerns will be killed in police encounters. We cannot accept this status quo and demand better from our systems of care.

— Cal Hedigan, CommunityAccess.org

“Empathy should guide responses to reported vaccine injuries,” by Kizzmekia S. Corbett-Helaire

This discussion should include “shoulder injury related to vaccine administration” (SIRVA). According to the literature, SIRVA is an underrecognized, underreported, and highly preventable injury causing any combination of soreness, stiffness, losses of strength and range of motion, numbness, and tingling. Injuries can be temporary (days, weeks, or months) or permanent. SIRVA can result from the injection being too high on the upper arm.

I learned about SIRVA from personal experience after a Covid vaccination was administered noticeably high on my arm by a well-intentioned young nurse who obviously hadn’t learned about SIRVA. I only learned about it when the typical one- to two-day soreness did not subside and other symptoms appeared.

I’ve since talked with doctors, nurses, and an epidemiologist who didn’t know about SIRVA. Some M.D.s and nurses did know about it. One M.D. said she had wondered why her own arm was stiff and sore for five months after a fairly recent vaccination. I was fortunate my symptoms lasted “only” four months.

A quick online search generates peer-reviewed articles available from the National Institutes of Health and credible journals. The Centers for Disease Control and Prevention has a Clinical Immunization Safety Assessment Project. The Health Resources and Services Administration has a National Vaccine Injury Compensation Program.

Everyone who administers vaccines should have initial and recurrent training about SIRVA, and people are advised to place three fingers at the top of their arm (this measure may vary with the length of one’s arm) and to speak up about SIRVA before injections to ensure vaccinations are safely in the right place. I’m not a clinician, but from published diagrams, the proper injection site appears to be in the center of the inverted triangle-shaped deltoid muscle.

— Skip Grieser, Colorado State University

“Functional neurological disorder is not an appropriate diagnosis for people with long Covid,” by David Tuller, Mady Hornig, and David Putrino

At first, I was confused by this article, since the statement that LC and FND are different diagnoses is obvious to anyone who treats them. However, it was disconcerting to realize the intention of the article was seemingly to give validity to the long Covid diagnosis by diminishing the validity of the functional neurological disorder diagnosis. Both are common debilitating disorders and seen from the view of a patient suffering from FND or caring for them, this article reads as a hit piece. It is also very misleading scientifically.

Of course they are different, but not for the reasons listed. Like common migraine and FND, post-infectious neurocognitive disorders like long Covid involve a lot of brain network dysfunction. Arguably major depression has more consistent biomarkers than any of the others. And just like diabetes, all of the above are affected by adverse childhood events (trauma), all involve psychological components, and all are best treated with a variety of medical and behavioral health interventions.

Long Covid and FND are obviously different and anyone confusing them doesn’t understand the topic. If someone heuristically simplifies all cognitive affective conditions into a simplistic paradigm of “mood stuff” I could understand their confusion. The biggest difference between long Covid and FND isn’t the neurophysiology or the validity as diagnoses, it is the stigma associated with them and this article definitely acts to widen that divide.

— Joshua Claunch

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I agree with this well-reasoned argument that FND is misapplied to patients with nonspecific symptoms who present diagnostic dilemmas to their doctors. I am an autonomic specialist, and see many patients with chronic orthostatic intolerance related to the triad of dysautonomia spectrum disorder — (inappropriate sinus tachycardia and postural orthostatic tachycardia syndrome, mast cell activation syndrome, and hypermobile spectrum disorders). It is common for these patients to have long lists of symptoms, often in excess of 30, related to this triad of disorders as well as comorbid migraine, irritable bowel, generalized pain, small fiber neuropathy, fibromyalgia and other disorders often referred to as central sensitization syndromes. This “symptom snowball” is too often interpreted as being entirely due to a functional neurologic disorder. There is often a biologic trigger that is being missed: excessive venous pooling from collagen laxity, vascular extravasation from chronic allergy/inflammation from mast cell activation, environmental triggers including food intolerances, medication excipients, mold toxicity, and infections.

My approach has been to acknowledge both the presence of an as-yet unidentified biologic trigger as well as the psychophysiologic disorder that attends any chronic unexplained illness. When a biologic trigger occurs, the brain begins to work to solve the problem. If the symptoms remain unexplained, the brain may become a symptom generator.

While reassuring patients that we will continue to search for the biologic trigger, I counsel them to reduce the cognitive misfiring through symptom reprocessing therapy, 4-7-8 breathing techniques, and amygdala retraining (Guptaprogram.com or the book “The Way Out” by Alan Gordon, and others). When presented in a compassionate manner, patients are far more likely to embrace these strategies while awaiting further investigation and treatment.

— Laurence Kinsella, adjunct professor, neurology, SSM Health St Louis University

“Mark Cuban’s company won’t fix drug costs, but it can still help rectify America’s drug shortages,” by Ezekiel J. Emanuel and John Connolly

Thanks for publishing the essay, which is substantially accurate. I take exception to one widely-circulated falsehood, namely; “…excessively low prices incentivize companies to outsource to Chinese and Indian manufacturers which lack stellar track records when it comes to quality.”

Page 5 of FDA’s FY 2023 report on the State of Pharmaceutical Quality regarding satisfactory FDA inspections of manufacturing sites from China (95%), India (89%) and the U.S. (94%) do not bear out this false claim. It is promoted by certain U.S.-based insiders seeking government subsidies to “reshore” production.

— Vincent Andolina

“Medtech compliance — not regulation — is stifling innovation,” by Erez Kaminski

As a former FDA associate commissioner, I can attest to the dangers of “White Oak Syndrome” — regulated companies trying to out FDA the FDA. In many instances (and not just for medical device companies), corporate compliance departments restrain their own colleagues from actions that drive important innovations because of their own overly conservative reading of FDA regulations. When it comes to guiding their own firms, they rely on one-dimensional readings of the regs rather than a more three-dimensional view of what’s there between the lines. Such practices act as sea anchors to innovation and the results shouldn’t be blamed on the FDA but rather on the lack of internal risk tolerance. Lastly, at least in my experience over the last 20+ years, corporate compliance departments behave as though they are secret societies, regularly refusing to discuss and debate their positions with their R&D, marketing, and other corporate colleagues. Boldness is considered recklessness — but these terms are not synonyms. There is a distinction with a difference.

— Peter Pitts, Center for Medicine in the Public Interest

“Sponsored genetic testing programs are under fire, further complicating life for people with rare diseases,” by Emil D. Kakkis

The situation is more perverse. Often drugs to treat a rare genetic disease are not included in the formulary of a health insurance plan’s pharmacy benefit and are not covered. To obtain coverage, a physician needs to demonstrate the medical necessity of the drug for which a genetic test finding would provide that support. By insurers restricting coverage of the genetic test, in fact what is being restricted is access to the medicine which treats the genetic disease.

— Douglas Dachille

“The ‘Risky Research Review Act’ would do more harm than good,” by David Gillum, Rebecca Moritz, and Gregory D. Koblentz

Any time I see a proposal to bring scientific research under the control of politicians, alarm bells start ringing. How many politicians have sufficient education to understand what is being researched? How many are letting their religious beliefs stand in the way of proper research?

— Linda-Claire Steager

“To get a fair deal on Wegovy, buying Novo Nordisk might not be Medicare’s worst option,” by Melissa Barber, Joseph S. Ross, and Reshma Ramachandran

I like the fact that serious public policy researchers are identifying options such as public manufacturing of pharmaceuticals that normally are deemed too far off the charts. But there are several weaknesses in the article, the most obvious being that Denmark is unlikely to allow a foreign takeover of Novo Nordisk, whose market value exceeds that of the country’s entire GDP and which contributes the most to its corporate tax revenues.

Another problem is that Novo Nordisk is the dominant global supplier of both insulin and GLP-1s and for countries which need these drugs a Novo replacement subject to the public policy whims of a foreign government would likely be a nightmare.

And finally, the authors approach the subject of a Medicare takeover of Novo Nordisk with a relatively narrow economic lens, bypassing any consideration of non-pharmaceutical interventions or even other drug treatment options. This is surprising since a key contributor to obesity is poverty and developing a more upstream, public health response to the consequences of that — poor nutrition and dietary education, stress, etc. — might significantly reduce the number of people who would require GLP-1s. This approach would be preferable not just because of cost, but also because of the known side effects of this class of drug — not to mention the unknown, potential long-term side effects.

A discussion of public manufacturing is needed, but we also need to talk about social determinants which are contributing to poorer health generally, including obesity and type 2 diabetes.

— Colleen Fuller

“Why aren’t philanthropists stepping up to make nursing education free?” by Tracy R. Vitale and Caroline Dorsen

Despite recent high-profile gifts and the heightened awareness of the nursing crisis during the Covid-19 pandemic, private giving for the nursing profession remains alarmingly low, with only one penny of every dollar donated for health care directed towards nursing. This glaring disparity in philanthropic priorities undermines the central role nurses play in advancing health care quality and equity.

Nurses are uniquely positioned to drive health care improvements due to their direct patient connections, extensive expertise, and wide range of responsibilities. Their firsthand knowledge of patient needs and outcomes makes them ideal partners for funders seeking to transform the health care system to serve everyone better. Investing in nursing is not merely an investment in individuals but a strategic move towards more cost-effective, higher-quality, and more equitable health care for all.

One of the most critical areas for philanthropic support is the transition of internationally educated nurses (IENs) into the U.S. health care system, a cause fervently championed by the Filipino Nursing Diaspora Network. IENs bring invaluable diversity, representing various nations and offering cultural and linguistic affinities with foreign-born patients. These nurses often face significant challenges when transitioning to practice in the U.S. due to differences in culture, language, and health care systems. However, their contributions are immense and transformative.

Research shows that units with more internationally trained nurses not only have higher levels of education—often due to the requirement of a baccalaureate degree for U.S. licensure—but also exhibit lower turnover rates. This stability fosters collaborative environments among nurses, ultimately contributing to improved health outcomes and reduced recruiting and hiring expenses. Supporting IENs can significantly enhance patient care quality and workforce stability. Moreover, their diverse perspectives and experiences enrich the health care environment, making it more inclusive and responsive to the needs of a multicultural patient population.

A shining example of the power of philanthropic support is the transformational gift by Dr. Nancy Atmospera-Walch, a Filipino nurse leader, to her alma mater, the University of Hawaii Manoa School of Nursing, in 2022. This contribution not only underscores her commitment to nursing education but also elevates the pride and recognition of IENs and Filipino nurses in the diaspora. Hawaii, home to many Filipino nurses and a significant number of IENs, stands to benefit enormously from this bold investment.

Dr. Atmospera-Walch’s gift focuses on four critical areas: improving school health for Hawaii’s keiki (children), addressing the state’s nursing workforce shortage, supporting future nurses, and developing early-career nursing faculty. This comprehensive approach ensures that nursing students and faculty will benefit from her generosity for many years, fostering a robust and capable nursing workforce and elevating the School of Nursing on both local and national stages. Her philanthropy exemplifies the profound impact of targeted support on the nursing profession and the broader health care system.

By directing philanthropic resources towards nursing, particularly in supporting IENs and educational institutions, we can create a more stable, educated, and effective nursing workforce. This, in turn, will lead to better patient outcomes, reduced health care costs, and a more equitable health care system. Investing in nursing, especially in the support of IENs, is a strategic imperative that promises substantial returns in health care quality and equity, benefiting society as a whole. Dr. Nancy Atmospera-Walch’s transformative gift serves as a powerful example of the impact and importance of such investments.

— Jerome Babate, Filipino Nursing Diaspora Network