Readers and Tweeters Shed Light on Vaccine Trials and Bias in Health Care

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

On the ‘Subject’ of Vaccine Trial Participants

In the piece about the AstraZeneca vaccine trial subject who suffered severe spinal cord inflammation, that person was repeatedly referred to as a “patient” (“NIH ‘Very Concerned’ About Serious Side Effect in Coronavirus Vaccine Trial,” Sept. 14). Once someone is enrolled in a trial, everything that happens to them is because they are a “subject,” not a patient. A patient is someone getting health care; a subject is willingly participating to be exposed to something that has nothing to do with their health or wellness. Please use the right term so that the reader can be reminded that the person was participating in this trial. Nice piece.

— Robin Chalmers, Atlanta

https://twitter.com/ozofperception/status/1306555027905970176?s=20

— Michael Berger, Canton, Ohio

Just read the story by Arthur Allen and Liz Szabo on risk/benefit of vaccine trials where a serious illness occurs. It hit home. I took Proscar for seven years in a prostate cancer prevention trial. I was in the third cohort. At some point short of the planned 10 cohorts, the test was aborted: Benefits were so great that the placebo would be unethical. I was lucky. My little blue pill was the real thing. That earned me a spot in the selenium/vitamin E trial to see if that combo prevented prostate cancer. That trial was aborted when serious health effects were diagnosed and there was a causal link. Good. I didn’t get both but I don’t know whether I got selenium or vitamin E. No problems. I know I did not get the placebo.

Now I’m doing the Pfizer COVID-19 vaccine trial at Cincinnati Children’s Hospital/Gamble Institute. So far, two shots, no immediate problems. Ask me in two years.

It’s important to say: A trial can stop because benefits wildly outweigh risks or because harms become obvious. I’ve had every vaccine relevant to my life and work for 82 years. I’ve seen smallpox and measles in southern Africa and polio in my hometown, Minneapolis. I got a typhus jab before going out to Africa from London almost 60 years ago. I’m a believer. Thanks for your clear-headed and well-written and -edited reporting. We need it more than ever.

— Ben Kaufman, Cincinnati

https://twitter.com/ResnickLR/status/1313831390430011394?s=20

— Lindsay Resnick, Chicago

Take It (A Vaccine) From Someone Who Knows

I have no idea how you conducted the survey (“Most Adults Wary of Taking Any Vaccine Approved Before the Election,” Sept. 10), but as a 74-year-old physician, I would take any and all vaccines offered and would advise everyone I know to do the same. Ultimately, there will be several vaccines using multiple approaches. The dangers to a person taking one of every kind before the years required “to make sure” any are safe to a 0.001% certainty are tiny compared with the danger from acquiring the wild infection. Even if there are some complications beyond a sore arm, aches and even a short-lived fever, they would occur in a relatively few in comparison to the 3%, 6% or even greater death rates seen from the disease. This does not account for the long-lived or permanent heart, lung, kidney and central nervous system effects from COVID-19.

I have participated as the primary or assistant investigator in dozens of studies over 40 years and am an assistant coroner and a community doctor. Someone on the ground can have a better idea of what is necessary than the academics who are happily ensconced in ivy-covered towers who hold themselves to be experts, pontificate without truly knowing the needs of a community, and live mostly through grants, guaranteed salaries and multiple papers read by few.

— Dr. Neil Wolfson, Metairie, Louisiana

— Taylor Ross, Columbia, Missouri

A Universal Problem

I want to let Karla Monterroso from the April Dembosky piece on unconscious bias in health care (“‘All You Want Is to Be Believed’: The Impacts of Unconscious Bias in Health Care,” Oct. 19) know that I have no doubt her experience was horrific, and I do not want to, in any way, disagree or diminish that it is related to unconscious bias. However, I am a skinny, white woman (and a nurse and nurse practitioner, by the way, and therefore better able to advocate for myself), and my interface with emergency, primary care and a few specialty practices in the “health care” system during the time of COVID-19 has also been most unfortunately and horrifically similar.

I, too, am utilizing my resources to speak up and speak out, knowing that for everyone who speaks up there are hundreds if not thousands who don’t. So please convey my gratitude to her, and to KHN for publishing her story. I hope that it and Kaiser Permanente’s research shed some light, not only on unconscious bias, but also the realities of today’s medical-industrial complex.

— Christine Fasching Maphis, Harrisonburg, Virginia

The Need for Trust Between Physician and Patient

Throughout history, there has been an extreme level of mistrust between health care providers and African American communities. So in 2020, when being asked to enter a trial for a coronavirus vaccine, the answer is easily no, without hesitation (“COVID Vaccine Trials Move at Warp Speed, But Recruiting Black Volunteers Takes Time,” Sept. 16).

Misconduct and mistreatment of patients presently and in the past, such as Henrietta Lacks and the many lives lost during the Tuskegee Syphilis Study, have forever been etched in the minds of many individuals, and trust is not easily given. When strengthening the relationship between patient and provider, trust must first be built before Black communities would even consider being test subjects.

What Dr. Vladimir Berthaud has been able to provide Robert Smith and the rest of his patients with is comfort, which is developed when the care is patient-centered. Effectively communicating with patients to ensure they understand what’s going on and what’s at stake, listening to their concerns, and respecting their preferences when it comes to receiving care can affect the decision patients decide to make in this very difficult time.

With over 8 million cases of COVID-19 in the United States, Black people make up 17.6% of reported cases from states who provided data on race/ethnicity, according to the CDC. With little to no volunteers willing to enter the trial, the likelihood of finding a vaccine to build the immune systems of all citizens is becoming further from achievable and even more difficult. Representation for people of color is needed, and providers need to take the extra step to encourage the Black community to participate in the trial that affects them, just as much as any other race.

— Tre’Jenae Mack, Baltimore

— Ty Russell, Miami

Ghosting Your Friends This Year

Regarding your story about Halloween safety (“How Families Are Keeping Halloween From Turning Into a COVID Nightmare,” Sept. 23), a mother is quoted as saying she will host a small sleepover with relatives instead of trick-or-treating. Isn’t having non-household members over to spend the night considered a high-risk thing to do? I’m confused.

— Sarah Kishler, San Jose, California

Editor’s note: Indeed. With COVID cases on the rise in at least 36 states, especially in the Midwest, CDC Director Robert Redfield said recently: “What we’re seeing as the increasing threat right now is actually acquisition of infection through small household gatherings.”

— Leslie Ehrlich, New York City

A Eureka Moment on Bar Closings

I am a professor at the School of Social Work at the University of Michigan-Ann Arbor. I teach courses in policy management, leadership and community organization. I am in the “wholesale” branch of social work, not the “retail” (clinical) side.

I want to congratulate you on your recent piece on closing the bars (“Analysis: Winter Is Coming for Bars. Here’s How to Save Them. And Us,” Oct. 22). More specifically, your linking the farm program of paying farmers not to grow to paying bars not to open. Reading that I had a eureka moment — stupendous! An idea with broad applications. I have taught about “policy borrowing,” but that idea never crossed my mind — brilliant — one of those once-in-a-lifetime inspirations. The potential application of farm subsidies to other policy arenas opens a door (as in “The Secret Garden”).

I just had to find a way to tell you how intellectually exciting that is.

— John Tropman, Ann Arbor, Michigan

— Steve Morrison, Washington, D.C.

Plagued by Misinformation

Should you wear a mask? Should you stay home? Is it worse than the flu? Don’t ask the United States government because you won’t get a consistent answer (“Signs of an ‘October Vaccine Surprise’ Alarm Career Scientists,” Sept. 21). Since COVID-19 began to afflict the U.S. in early March, the Trump administration has consistently disseminated unreliable messages leading to surges in cases, mass personal protective equipment shortages and over 220,000 deaths. Inconsistent statements that contradict evidence-based recommendations from well-regarded government agencies have plagued the government’s response to the novel coronavirus.

The administration is, again, pushing controversial treatments and contradicting experts in the premature release of the COVID-19 vaccination, making it one of its most dangerous maneuvers yet. A politically charged release of a vaccine that has not been fully tested will result in low trust levels. While this cutting-corners approach may appear to increase the chance of reelection, it puts the scientific community’s reputation in jeopardy, possibly destroying confidence in vaccination, a topic scientists have been battling for decades. The U.S. is currently leading the world in cases and deaths, proving that an unclear and decentralized approach to the crisis is ineffective. It’s imperative that elected officials begin to work together and take America’s health seriously.

— Amelia Flocchini, Madison, Wisconsin

— Dr. Megan Ranney, Providence, Rhode Island

Buckling Down on Analogies

In Elisabeth Rosenthal’s “Analysis: We Follow Laws on Seat Belts and Smoking. Why Not on Masks? (Oct. 1), the seat belt analogy doesn’t quite fit. Seat belts primarily help the user. You should instead use speed limits or laws against driving drunk. Those help others primarily, like masks.

— Thomas Kahn, St. Louis

— Phelim Kine, Annapolis, Maryland

The Crisis of 911 Mental Health Calls

Reading your story about Daniel Prude, I assume this interests KHN because of the failures in mental health care (“You’re Going to Release Him When He Was Hurting Himself?” Sept. 29). The narrative seems to be that this sort of thing happens only to people of color and not that the proportion of officer-involved use-of-force incidents are far greater among those in mental health crisis than solely because of race. Take this story, for example, in which a Minnesota crisis unit was called twice, refusing first to assist, then a second time not arriving before the child was gassed out of a home where he was alone and shot 11 times on a sunny Friday morning in his own front yard. Then the district attorney used protected health information (PHI) to make a case to justify the killing.

— Don Amorosi, Wayzata, Minnesota

https://twitter.com/KodyKinsley/status/1312032166818144268?s=20

— Kody H. Kinsley, Raleigh, North Carolina

This story brought light to the serious problem of lack of access to inpatient psychiatric care. State laws are too restrictive, and hospitals are legally aware and wary. Strong Memorial Hospital clearly did not take into account the patient’s behavior that caused his family and police to act to have him hospitalized. Nevertheless, while I highly appreciate the facts this article brings to light, I am somewhat dismayed that the highlighted topic is race rather than the risk of all mentally ill patients of being denied access to inpatient care. There appears to be a trend of viewing events and news primarily through these identity lenses. My father was Hispanic and also had problems getting access to care before he committed suicide. Thank you for covering this story.

— Christina Nuñez Daw, Greenbelt, Maryland

— Kathy Staub, Manchester, New Hampshire

When Illness Leaves a Patient Little Choice

I write to expand on Laura Ungar’s Sept. 25 article, “Bill of the Month: Heartbreaking Bills, Lawsuit and Bankruptcy — Even With Insurance.” The article follows the story of a man diagnosed with a rare condition — flu-induced heart disease — who received surprise medical bills, which led to a lawsuit and his filing for bankruptcy. Ungar notes that “a hospital representative suggested [the patient] apply for financial assistance. She followed up by sending him a form, but it went to the wrong address because [the patient] was in the process of moving.”

Though nonprofit hospitals are required to provide some sort of financial aid for indigent patients — according to 26 C.F.R. §1.501(r) of the Internal Revenue Code — the statute does not define exactly how a hospital must provide that aid. For example, a hospital can offer financial assistance but require patients complete extensive documentation to discourage patients from using it. Though it is unclear in Ungar’s article whether the hospital attempted to resend the form or to contact the patient after the form went to the wrong address, it is unlikely. If the hospital was willing to pursue legal action — leading to the patient’s bankruptcy — it is possible the hospital did not attempt to contact the patient again as a tactic to avoid providing financial assistance, a tactic allowed under the IRC.

Ungar failed to mention how patients with chronic conditions would fare in similar circumstances. As someone with a chronic condition, I know firsthand that those with chronic conditions do not pick and choose when they have expensive surgeries or procedures; often, the condition makes that choice. A patient with ulcerative colitis or Crohn’s disease does not choose when he has a flare that might require an emergency colonoscopy or surgery to remove part of their intestines. A flare, by definition, occurs randomly and violently. Often, procedures and surgeries to quell such flares require expensive treatment options. Scheduling such procedures is desirable but unrealistic. Even the patient in the article — who suffered a rare acute condition — did not choose when he needed care; his health made the choice. The article should address chronic conditions but as another example to emphasize her point about how debilitating medical bills can be.

— Daniel Klapper, Pittsburgh

— Jim Eischen, San Diego

Oh, Canada Health Care!

Regardless of the platitudinous praises our health care system typically receives, Canada is the only country with a universal plan (theoretically, anyway) that doesn’t also fully cover medications (“New Laws Keep Pandemic-Weary California at Forefront of Health Policy Innovation,” Oct. 1). The bitter pill is: Many low-income outpatients cannot afford to fill their prescriptions and resultantly end up back in the hospital system, thus burdening the system far more than if those patients’ generic-brand medication was also covered. This lesson was learned and implemented by enlightened European nations with genuinely universal all-inclusive health care systems that also cover necessary medication.

Within our system are important treatments that seem to be either universally nonexistent or, more to the point, universally inaccessible, except to those with relatively high incomes and/or generous employer health insurance coverage. The only two health professions’ appointments for which I’m fully covered by the public health plan are the readily pharmaceutical-prescribing psychiatry and general practitioner health professions. Such non-pharmaceutical-prescribing mental health specialists as psychotherapists and counselors (etcetera) are not at all covered.

Logic says we cannot afford to maintain such an absurdity that costs Canada billions extra annually. It’s not coincidental that the absence of universal medication coverage also keeps the pharmaceutical industry’s profits soaring.

— Frank Sterle Jr., White Rock, British Columbia


This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

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