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

Don't worry about Trump rushing a #vaccine. Worry about pharma companies hiding data from the FDA and NIH.https://t.co/BoxSZILoyx

— Mike's Hard Left Turn🏴 🏴‍☠️ (@ozofperception) September 17, 2020

— 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

Regardless of widespread distrust caused by @realDonaldTrump ‘too many cooks’ syndrome on vaccine vetting has scientists saying such plans by individual states could backfire, confusing public & eroding confidence in any eventual #coronavirus vaccine. https://t.co/gCufRJ2FjJ

— Lindsay Resnick (@ResnickLR) October 7, 2020

— Lindsay Resnick, Chicago

Racial sensitivity training is essential. The healthcare system is not made to support people of color. Providers should not be another obstacle to receiving equitable healthcare #MedTwitter

Unconscious Bias Crops Up In Health Care, Even During A Pandemic https://t.co/tDwkCOO6qH

— Taylor Ross (@taycraye) October 21, 2020

— 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. 21) 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

(Today is day 1 for me. An hour until vaccine or placebo) As COVID-19 Vaccine Trials Move At Warp Speed, Recruiting Black Volunteers Takes Time https://t.co/T4zkkUJ7qZ

— Ty Russell (@TRussellCBS4) September 29, 2020

— 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.”

Such a good way to put it: We pay farmers not to plant. Shouldn’t we pay bars to stay closed? via @NYTOpinion https://t.co/vQWww4B6r0

— leslie ehrlich (@leslieehrlich) October 22, 2020

— 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

⁦@RosenthalHealth⁩ It’s not just bars that are a central problem in creating “heterogenous” explosive outbreaks. It is bar owners, banded together fiercely opposing reasonable temporary controls. Witness the tavern league in Wisconsin. https://t.co/QQd8qoWVHM

— Steve Morrison (@MorrisonCSIS) October 22, 2020

— 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

This is a terrifying scenario. If it comes to this, I promise to actually (gulp) speak up against vaccines. I hope and pray we don't go down this road.

(In the meantime: existing, approved #VaccinesWork… Go get your flu shot!) https://t.co/ypIl3LojjP

— Megan Ranney MD MPH 🗽 (@meganranney) September 21, 2020

— 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

@gavin4annapolis Useful article given the large number of non-mask wearing scofflaws I routinely see down at the harbor. There is police "presence" but no obvious enforcement efforts. https://t.co/bneoV3WHzN

— Phelim Kine “老 康“ (@PhelimKine) September 30, 2020

— 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

As we focus more on the intersection of the justice system & racial equity, how we approach mental healthcare is – & should be – part of the discussion. The tragic circumstances of Daniel Prude’s death in Rochester shines a spotlight on this. https://t.co/CIt9AGCgxB

— Kody H. Kinsley 😷 (@KodyKinsley) October 2, 2020

— 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

Heartbreaking Bills, Lawsuit and Bankruptcy — Even With Insurance https://t.co/Ws6dNPfMsJ via @khnews In any other developed country in the world, he would have been taken care of. #Medicare4All now

— Kathy Staub (@mrsstaub) September 25, 2020

— 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

1. Why the “Breaking Bad” plot line (cooking meth to cover cancer treatment costs) is an “only in America” story; 2. Why patient investment in high-connection wellness/care solutions has an ROI given US healthcare system costs. https://t.co/TxWjpYUGqe

— Jim Eischen (@JimEischenEsq) September 25, 2020

— 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

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Telemedicine or In-Person Visit? Pros and Cons

As COVID-19 took hold in March, U.S. doctors limited in-person appointments — and many patients avoided them — for fear of infection. The result was a huge increase in the volume of remote medical and behavioral health visits.

Doctors, hospitals and mental health providers across the country reported a 50- to 175-fold rise in the number of virtual visits, according to a report released in May by the consulting firm McKinsey & Co.

The COVID-fueled surge has tapered off as patients venture back to doctors’ offices. But medical professionals and health experts predict that when the pandemic is over, telehealth will still play a much larger role than before.

Studies show patient satisfaction with telehealth is high. And for physicians who previously were skeptical of remote care, necessity has been the mother of invention.

“There are still a few doubting Thomases, but now that we’ve run our practices this way for three months, people have learned that it’s pretty useful,” says Dr. Joseph Kvedar, president of the American Telemedicine Association and a practicing dermatologist who teaches at Harvard Medical School in Boston.

For patients, the advantages of telemedicine are clear: You typically can get an appointment sooner, in the safety of your own home or workplace, saving time and money on gas and parking — in some cases, even avoiding a loss in wages for missing work.

James Wolfrom, a 69-year-old retired postal executive in San Francisco, has had mostly virtual health care appointments since the pandemic started. He particularly appreciates the video visits.

“It’s just like I’m in the room with the doctor, with all of the benefits and none of the disadvantages of having to haul my body over to the facility,” says Wolfrom, who has Type 2 diabetes. “Even after the pandemic, I’m going to prefer doing the video conferencing over having to go there.”

Telemedicine also provides care for people in rural areas who live far from medical facilities.

The growth of virtual care has been facilitated by Medicare rule changes for the COVID-19 emergency, including one that reimburses doctors for telemedicine at the same rate as in-person care for an expanded list of services. State regulators and commercial health plans also loosened their telehealth policies.

In California, the Department of Managed Health Care, which regulates health plans covering the vast majority of the state’s insured residents, requires commercial plans and most Medi-Cal managed care plans during the pandemic to pay providers for telehealth at parity with regular appointments and limit cost sharing by patients to no more than what they would pay for in-person visits. Starting Jan. 1, a state law — AB-744 — will make that permanent for commercial plans.

Five other states — Delaware, Georgia, Hawaii, Minnesota and New Mexico — have pay-parity laws already in effect, according to Mei Wa Kwong, executive director of the Center for Connected Health Policy. Washington state has one that also will begin Jan. 1.

If you are planning a telehealth appointment, be sure to ask your health plan if it is covered and how much the copay or coinsurance will be. The appointment may be through your in-network provider or a telehealth company your insurer contracts with, such as Teladoc, Doctor On Demand or MD Live.

You can also contact one of those companies directly for a medical consultation if you don’t have insurance, and pay between $75 and $82 for a regular doctor visit.

If you are one of the 13 million Californians enrolled in Medi-Cal, the state’s Medicaid program, you can get telehealth services at little to no cost.

Large medical offices and health systems usually have their own telemedicine platforms. In other cases, your provider may use a publicly available platform such as FaceTime, Skype or Zoom. Either way, you will need access to a laptop, tablet or smartphone — though, for a phone conversation, a landline or simple cellphone will suffice.

Smartphones with good cameras can be particularly useful in telemedicine because high-resolution photos can help doctors see certain medical problems more clearly. For example, a photo from a good smartphone camera usually provides enough detail for a dermatologist to determine whether a mole requires further attention, Kvedar said.

Relatively inexpensive apps and at-home tools enable you to measure your own blood pressure, pulse rate, oxygen saturation level and blood sugar. It’s a good idea to monitor your vitals and have the numbers ready before you start a virtual visit.

Be aware that a remote visit is not right for every situation. In the case of serious injury, severe chest pain or a drug overdose, for example, you should call 911 or get to the ER as quickly as possible.

Virtual visits also are not recommended in other cases for which the doctor needs to lay hands on you.

Wolfrom has had only a few in-person health visits this year, one of them with a podiatrist who checks his feet every six to 12 months for diabetes-related neuropathy. “That can only be done when you are in the room and the podiatrist is touching and feeling your feet,” Wolfrom says.

Face-to-face visits are generally better for young children. Kids often require vaccinations, and it’s easier for doctors to monitor their growth and development in person, says Dr. Dan Vostrejs, a pediatrician at Santa Clara Valley Medical Center in San Jose.

In general, telemedicine is effective in cases that would typically send you to an urgent care clinic, such as minor injuries or flu-like symptoms, including fever, cough and sore throat.

It is also increasingly used for post-surgical follow-ups. Telemedicine can be a godsend for geriatric or disabled patients with reduced mobility. And it’s a no-brainer for mental health care, which is mostly talking anyway.

Among the top telehealth adopters are medical specialists who treat chronic illnesses such as diabetes, hypertension, cardiovascular disease and asthma, says Dr. Peter Alperin, a San Francisco internist and vice president of product at Doximity, a kind of LinkedIn for medical professionals.

Providers can monitor patients’ vitals remotely and discuss lab results, diet, medications and any symptoms in a video chat or a phone conversation. “If you happen to see something that’s awry, you can bring them into your office,” Alperin says, adding it’s “a better form of triage.”

But telemedicine has some serious disadvantages. For one thing, the less formal setting can allow some routine medical practices to slip through the cracks.

In the second quarter of this year, blood pressure was recorded in 70% of doctor office visits compared with about 10% of telemedicine visits, according to a study published early this month.

Elsa Pearson, a resident of Dedham, Massachusetts, had a medical appointment scheduled in March, which was switched to a telephone call because of the pandemic-induced lockdown.

“It was honestly the most efficient appointment I’ve had in my life,” says Pearson, 30. But, “I must admit, without the push of having the labs right there when you leave the appointment, I’ve yet to get them done.”

Perhaps the biggest pitfall in telehealth is the loss of a more intimate and valuable doctor-patient relationship.

In a recent essay, Dr. Paul Hyman, a Maine physician, reflected on the times when an unexpected discovery during an in-person examination had possibly saved a patient’s life: “A discovery of an irregular mole, a soft tissue mass, or a new murmur — I do not forget these cases, and I do not think the patients do either.”

This KHN story first published on California Healthline, a service of the California Health Care Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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North Carolina Treasurer Took On the Hospitals. Now He’s Paying Political Price.

Cartel is a term frequently associated with illegal narcotics syndicates. In North Carolina, it has become the favored word of State Treasurer Dale Folwell to describe the state’s hospital industry, the antagonist in his quest to lower health care prices for state employees.

The treasurer manages the state employees’ health plan, which insures about 727,000 teachers, police officers, current and retired state workers and dependents. Folwell, a Republican, has tried to persuade hospitals to accept lower payments, but he has struggled to discover the existing rates the plan pays each hospital.

“These organizations’ business model is secrecy,” Folwell said, “from the billing all the way up to the way these hospitals’ organizations receive their tax-exempt status.”

Now, as Folwell, 62, seeks a second four-year term, the state’s hospitals are coming after him.

The North Carolina Healthcare Association, the hospital trade group, has endorsed Folwell’s Democratic challenger. It is a rare instance of a health care lobby seeking to topple an incumbent. Over 26 years, North Carolina’s hospital association donated $2.1 million to sitting officeholders but bestowed just $29,700 to challengers, according to a tally from the National Institute on Money in Politics, a Montana-based nonprofit. All donations made this year will not be fully disclosed until after the election.

In many states, hospital associations are political powerhouses, with stables of lobbyists and the influence that comes with often being the largest employer in many legislative districts. In the previous election cycle of 2018, the hospital industry across the country donated $71 million to local and state candidates, political parties and ballot initiatives, according to the Money in Politics data. That amounted to a fifth of all spending by the health care industry and nearly three times that spent by pharmaceuticals and health products companies.

“The hospitals have very strong political clout in North Carolina, and increasingly so as they get bigger,” said Aaron McKethan, a resident scholar at the Margolis Center for Health Policy at Duke University’s Fuqua School of Business. “They are huge sources of employment. If anything, COVID has reinforced and strengthened them — the job of wagging your finger at hospitals over their prices has gotten harder.”

Nationally, hospitals account for a third of health care spending. The prices hospitals charge private insurers including the state health plan are driving much of the increase in health care premiums. In North Carolina, hospital inpatient prices for private insurers rose by 10% from 2014 to 2018, according to the Health Care Cost Institute.

Folwell’s critics complain that, despite his verbal provocations about hospital power, his efforts to transform health care pricing have mostly fizzled. They also lament that he has made no effort to try to persuade the legislature to expand Medicaid, which would help shore up hospital finances.

“The treasurer has, for some reason, insisted on taking a ‘my way or the highway’ approach, rather than engage in honest conversations and negotiations,” Cynthia Charles, the hospital association’s spokesperson, said in an email. “As we have repeatedly said, we are willing to work together to redesign the plan in a manner to advance goals for cost reductions, price transparency and provider inclusion.”

Folwell’s Democratic challenger, Ronnie Chatterji, and the hospital industry insist a better way to bring health costs under control would be to tie payments to the quality of care, an approach Blue Cross and Blue Shield of North Carolina has begun experimenting with. With blunt cuts, “you’re just going to put people’s health care access in jeopardy,” said Chatterji, an economist at the Fuqua School who served on former President Barack Obama’s Council of Economic Advisers.

The bad blood between Folwell and North Carolina hospitals primarily traces back to 2018, when the treasurer told hospitals, doctors and other medical providers that to avoid having to ask the legislature for more money or raise employee contributions, he wanted to reduce by $300 million the amount the $3.3 billion health plan paid medical providers each year.

Folwell proposed to base prices on Medicare rates, an approach known as reference pricing. His plan offered to pay most hospitals 175% of what Medicare reimbursed them for inpatient services and 225% for outpatient services, on average. Rural hospitals, which tend to be in worse financial shape, would have received more, but their rates would also have been pegged to Medicare.

The plan would have amounted to a pay cut for most hospitals. A recent Rand Corp. study of hospital prices found that North Carolina hospitals in 2018 were paid on average 221% of Medicare rates for inpatient services and 334% of Medicare rates for outpatient services — well above what the treasurer was proposing.

The state’s two big nonprofit systems, Atrium Health and Novant Health, earned substantially more, according to the Rand data. For example, Atrium Health Mercy hospital in Charlotte collected 423% of Medicare outpatient prices. Forsyth Medical Center in Winston-Salem, owned by Novant, collected 377% of what Medicare paid for outpatient services.

In its newsletter, the hospital association told its members that it tried to negotiate with the treasurer but that “Folwell has responded with disinterest and hostility towards these overtures and is instead engaging in a public campaign to malign hospitals.”

The hospitals warned customers that if no agreement could be reached with the state plan, the hospitals would be classified as out-of-network providers and state employees would end up having to pay far more for their services.

Those arguments about financial penury obscured the fact that North Carolina’s major hospital systems run huge surpluses in most years. Financial disclosure documents show that Atrium, which owns 36 hospitals in the state, ended 2019 with a $370 million surplus, a 6% margin. Novant, which owns 12 hospitals in North Carolina, that year earned $155 million, a 3% margin.

UNC Health, which amassed $271 million — a 6.4% margin — in its 2019 fiscal year, said in a statement that the treasurer’s plan would have cost it $47 million in its 2020 fiscal year and “jeopardized the financial viability of some of our rural hospitals.”

“We’re overpaying for no reason but to build multimillion reserves for these hospital corporations,” said Ardis Watkins, executive director of the State Employees Association of North Carolina.

Ultimately, the hospitals maintained a solid wall of opposition. Only three of North Carolina’s 108 hospitals signed on to the treasurer’s plan.

Duke’s McKethan said it was “predictable” that the hospitals would refuse to give up the negotiating advantages they held. “On the diagnosis of the problem — we’ve got these opaque prices that vary — he’s on solid ground,” he said about Folwell. “But when a good idea runs into the disadvantageous structure of the health care market, it doesn’t go anywhere.”

Apart from hospitals, the treasurer had some success in persuading about 25,000 of the state’s 60,000 doctors, therapists and other medical providers to accept the new payment system, which he named the Clear Pricing Project. Dr. Dale Owen, CEO of Tryon Medical Partners, a large independent physicians’ group based in Charlotte, said his group’s reimbursements will come out about the same under the plan.

“Quite honestly, even if it had been a tiny loss, no big deal because it was the right thing to do for everybody,” said Owen, who formed his group with fellow physicians who seceded from Atrium. “What he’s doing is, he’s opening a sore and a problem that people have not been willing to deal with and pushed under the rug.”

The Clear Pricing Project has yet to demonstrate the ability to save the state money. In fact, the effort may be costing the state more because many of the providers that signed on — such as primary care doctors and behavioral health specialists — are getting higher reimbursements than they had been while those that would have lost money, like hospitals, have stayed away.

Asked why he thought the hospitals would volunteer to forgo higher payments, Folwell said he had hoped they would realize that their long-term survival is endangered by the unsustainable increase in health care costs.

“I thought they would want to be partnering with a solution instead of the same old way,” he said in an interview. “I don’t think they accept the notion that they’re going to be on the wrong side of history.”

The hospital industry has been taking steps to try to make Folwell and his proposal history. During his attempt to get hospitals to agree to the pricing plan, the industry’s allies in the legislature introduced a bill that would have blocked the state health plan from instituting any reference pricing plan through 2021. That effort ultimately died.

Folwell has continued to rankle the hospitals with his opposition to further concentration of hospital ownership. He has opposed the pending sale of a county-owned hospital based in Wilmington, which Novant is purchasing. That followed his 2018 attempt to challenge an ultimately unsuccessful merger of Atrium and UNC Health by requesting a $1 billion performance bond if the deal ultimately raised prices for the state health plan.

Last month, the hospital association gave Chatterji its endorsement with a clear swipe at Folwell. The association’s president, Steve Lawler, said in the statement that “it is apparent that Mr. Chatterji genuinely wants to collaborate.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Déjà Vu for California Voters on Dialysis

SACRAMENTO, Calif. — The survival of California’s dialysis clinics is in the hands of its voters this November.

Sound familiar?

Voters heard the same dire campaign claim two years ago, when the dialysis industry spent a record $111 million to defeat a statewide ballot measure that would have limited clinic revenues.

Industry giants DaVita and Fresenius Medical Care are back on the defense again this year with their checkbooks open, flooding voters’ mailboxes and screens with political ads highlighted by heartfelt testimonials from patients against Proposition 23. With just a week left before Election Day, the industry is on track to break its own spending record.

This time, the measure’s sponsor, the Service Employees International Union-United Healthcare Workers West, which represents more than 95,000 health care workers in California, focused the ballot measure less on dialysis clinic profits and more on patient safety.

The union, which has tried but failed to organize dialysis clinic workers, has been the driving force behind both ballot measures, putting voters squarely in the middle of a long-running brawl — and forcing them to make decisions that could affect the health of tens of thousands of Californians.

“There’s no reasonable evidence that this would improve patient health,” said Erin Trish, associate director of the University of Southern California’s Leonard D. Schaeffer Center for Health Policy & Economics. “It seems largely to be driven by retaliation by SEIU-United Healthcare Workers West, who are mad the dialysis facilities wouldn’t let their workers unionize.”

Proposition 23 would require dialysis clinics to have a licensed physician on-site during all dialysis treatments, but that doctor wouldn’t need to be a nephrologist, a kidney specialist. Clinics would have to report infection data every three months to the California Department of Public Health, and those that plan to close would need state approval.

About 80,000 patients visit the state’s 600 licensed chronic dialysis clinics, three-quarters of which are owned or operated by DaVita or Fresenius, the largest dialysis companies in the country, according to a report by the nonpartisan state Legislative Analyst’s Office.

Patients with kidney failure often need a dialysis machine to filter toxins and remove excess fluid from their blood when their kidneys can no longer do the job. The treatment is arduous, taking roughly four hours at least three times a week.

Dialysis patients are susceptible to infection for a variety of reasons: Their immune systems are already compromised by their kidney failure, they are around other sick patients while receiving treatment, they require catheters to access their veins, and their blood is cycled through a machine.

Even though mortality rates have dropped among outpatient dialysis patients nationwide, infections remain a leading cause of death. In California, about one-third of outpatient clinics have fallen short of federal performance standards so far this year, resulting in lower Medicare payments to those clinics, according to federal payment records.

“With this initiative, we’ll make sure that they put more of those huge profits back into the clinics to improve safety and improve care,” said Steve Trossman, spokesperson for the union.

Dialysis clinics are once again threatening to close if the measure passes and they’re faced with higher operating costs.

Shama Aslam, 50, spoke at the behest of the union. Aslam, who visits a dialysis clinic in Stockton three times a week, described swatting fruit flies off her face and arms for hours while hooked up to a dialysis machine. She has polycystic kidney disease and has been waiting three years for a kidney transplant.

“It was really bad today,” Aslam said on a recent October afternoon. “It’s very uncomfortable. And because we’re dealing with blood all the time, we don’t want any infection. That’s a huge thing, at least for me.”

Aslam wishes she could see a doctor more than once a month. Nephrologists oversee their patients’ dialysis care, but clinic staff members administer the treatments. Federal regulations require a medical director, who is a board-certified physician, to oversee every dialysis clinic in the country. But there is no requirement that those directors remain physically present at the clinic when it is open. That’s what the California ballot measure would mandate.

Rick Barnett, chief executive officer and president of Satellite Healthcare, which operates 80 dialysis clinics in Texas, Tennessee, New Jersey and California, including Aslam’s clinic, said he had not heard of fruit flies at that Stockton facility. Medicare has not penalized that clinic this year, according to the payment database.

Many nonprofits like San Jose-based Satellite Healthcare could not afford to hire on-site doctors if Proposition 23 passes, Barnett said. Currently, medical directors often oversee multiple clinics in addition to their other job responsibilities.

The Legislative Analyst’s Office estimated it would cost each clinic several hundred thousand dollars a year, while the industry says $600,000 a year. Each clinic likely would have to hire more than one doctor to cover all hours.

Barnett estimates Satellite would close up to 40% of its 67 clinics in California should the ballot measure pass.

“It comes down to an attack on the industry,” he said. “This is one of the few sectors of health care they haven’t organized.”

Trossman vehemently disagreed that the union is trying to punish the dialysis companies over its failed unionization effort, saying the union invests in improving people’s lives.

“In terms of the idea that we would spend millions of dollars because essentially we’re ticked off is just ludicrous,” he said. “We don’t spend money that way.”

The California Medical Association, which represents physicians, opposes the measure, saying it would exacerbate the state’s doctor shortage by diverting physicians into dialysis clinics.

“This will bring physicians who are not trained in kidney disease or dialysis to just be present without any role or purpose, or even a clear path to any intervention because they won’t know what to do,” said Dr. Edgard Vera, a nephrologist and the medical director of DaVita dialysis clinics in Southern California’s High Desert towns of Hesperia and Victorville.

Critical emergencies, such as wild swings in blood pressure, already are handled by technicians and nurses certified in dialysis care, Vera said. Should a patient go into cardiac arrest, “if a physician is there, they are going to call the ambulance anyway,” he said.

DaVita alone had given nearly $67 million to the “No on 23” campaign as of Wednesday, more than half of the $105 million raised so far by the industry, according to campaign finance reports filed with the California secretary of state. The campaign’s other contributors include Fresenius, Satellite Healthcare, U.S. Renal Care and Dialysis Clinic Inc.

The “Yes on 23” campaign has reported just a fraction of that, with nearly $9 million in contributions. SEIU-United Healthcare Workers West gave the bulk of the money, with the rest — about $40,000 — coming from non-monetary donations from the California Democratic Party.

Proposition 23 follows an uneven record of wins and losses for the union on dialysis issues in California. The union tried but failed to organize dialysis workers three years ago, arguing that they needed safer working conditions and job protection. It also lost its 2018 ballot initiative that would have capped dialysis clinic profits.

But, last year, the union helped persuade state lawmakers to adopt a bill that aimed to stop a billing practice dialysis companies use to get higher insurance reimbursements for some low-income patients. A federal judge in January temporarily blocked the law from taking effect while the court considers its constitutionality.

“It’s not unusual for us to be voting on similar issues over and over again if they’re backed by powerful enough interests,” said Danielle Joesten Martin, associate professor of political science at California State University-Sacramento, pointing to other repeat ballot measures on the November ballot, such as the Realtor-backed Proposition 19. That measure would give Californians over 55 years old a property tax break when buying a new home.

They’re “powerful interest groups who didn’t get what they wanted the last time around.”

This KHN story first published on California Healthline, a service of the California Health Care Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Workers Fired, Penalized for Reporting COVID Safety Violations

When COVID-19 began making headlines in March, Charles Collins pulled out a protective face mask from the supply at the manufacturing company in Rockaway, New Jersey, where he was the shop foreman and put it on. The dozen or so other workers at the facility followed suit. There was no way to maintain a safe distance from one another on the shop floor, where they made safety mats for machines, and a few of the men had been out sick with flu-like symptoms. Better safe than sorry.

Management was not pleased. Collins got a text message from one of his supervisors saying masks were to be used to protect workers from wood chips, metal particles and other occupational safety hazards. “We don’t provide or for that matter have enough masks to protect anybody from CORVID-19 [sic]!” If workers didn’t stop using the masks for that purpose, the supervisor texted, “we’ll have to store them away just like the candy!”

“I was shocked,” said Collins, 38. “They weren’t taking it seriously.”

Shortly after that, Collins left for a planned vacation. When he returned a week later, the company told him to quarantine at home for two weeks because he’d been traveling.

But when the quarantine ended, Collins didn’t want to go back to work. Co-workers, he said, told him that recommended safety measures such as wearing masks and maintaining social distancing hadn’t been implemented. When he told human resources that he feared becoming infected and endangering his mother and his 8-year-old nephew who live with him, he said, he got an ultimatum: Return to work or resign.

Collins stayed home and says he was fired. He hired a lawyer and filed a complaint in the Superior Court of New Jersey under the state’s whistleblower law, the Conscientious Employee Protection Act. The law prohibits employers from firing, demoting or otherwise retaliating against workers who refuse to take part in activities they believe are incompatible with public health and safety mandates.

As many employers, with the strong encouragement of the Trump administration, move to bring employees back, a growing number of workers are resisting what they feel are unsafe, unhealthy conditions. In recent months, a few states have passed laws specifically aimed at protecting workers who face COVID-related safety risks and retaliation for speaking up about them. Some states, like New Jersey, have whistleblower protection laws already. But advocates say stronger federal protections are needed.

The Occupational Safety and Health Administration, part of the U.S. Department of Labor, is responsible for enforcing 23 federal whistleblower statutes that protect workers from retaliation if they report workplace safety violations, among other problems.

But according to a new analysis, the agency isn’t up to the task. The National Employment Law Project, a workers’ advocacy and research group, found that of 1,744 COVID-related retaliation complaints filed with OSHA between April and mid-August, 20% were docketed for investigation and 2% were resolved. More than half were dismissed or closed without investigation.

“Even before COVID, workers had a really bad track record of getting any justice for their concerns if they were retaliated against,” said Debbie Berkowitz, director of the worker health and safety program at the National Employment Law Project and a former senior OSHA official.

The numbers are growing. Whistleblower complaints filed with OSHA increased by 30% between February and May, to 4,101, according to an August report by the Department of Labor’s Office of the Inspector General that criticized the agency’s handling of the complaints.

Nearly 40% of the complaints — 1,618 — were related to COVID-19, the report found, filed primarily by workers who claimed they were punished for reporting workplace safety violations. Those could include, for example, not having appropriate personal protective equipment or sanitation materials, or a lack of social distancing on the job.

While complaints rose, the number of whistleblower investigators decreased from the previous year, according to the report. The average time it took to close an investigation at the end of March was roughly nine months.

Worker whistleblower protections under the Occupational Safety and Health law are “incredibly weak” compared with whistleblower statutes that protect employees who report other types of wrongdoing, Berkowitz said. If OSHA dismisses a complaint, workers have no right to appeal the decision, and once they file a complaint with OSHA they aren’t permitted to take their case to court on their own, she said.

Consumer advocates would like to see those provisions changed.

Advocates have urged OSHA to adopt mandatory COVID safety standards for workplaces, but the agency has declined to do so, maintaining that its “general duty clause,” which requires employers to maintain a workplace free from hazards likely to cause death or physical harm, is sufficient.

“The Administration has remained committed to providing the Whistleblower Protection program with the resources it needs to fulfill its mission,” a spokesperson for the Department of Labor wrote in an email to KHN. “In fiscal year 2020, OSHA asked for and received five new full-time employees and requested an additional ten in the President’s budget for fiscal year 2021.”

If workers don’t pursue a whistleblower complaint through OSHA, they can file a state lawsuit claiming “wrongful discharge” or use a state’s whistleblower law, as Collins did.

According to a COVID employment litigation tracker by Fisher Phillips, an employment law firm, since the beginning of the year 169 retaliation/whistleblower lawsuits have been filed across the country — the second-biggest category, behind suits related to remote work/leave, with 206 cases. An additional 27 lawsuits have been filed for wrongful discharge.

Juan Carlos Fernandez, the Morristown, New Jersey, attorney representing Charles Collins, said he’s seen a significant uptick in inquiries from workers about safety concerns in recent months. Before the pandemic began, he typically received one or two such calls per month. Now, he gets three or four a day.

Many callers say they were terminated after they asked for protective equipment on the job, Fernandez said. Others had asked for time off to care for a family member or a child whose school had closed because of COVID-19 and then were told not to come back to work.

In addition to reporting safety violations, Collins’ lawsuit claims, he was fired for asking to take time off. Under the federal Families First Coronavirus Response Act, employees are generally entitled to two weeks’ paid leave if they’re quarantined, and another two weeks’ paid sick leave at two-thirds pay to care for a child whose school has closed, as well as expanded family and medical leave. Collins has cared for his nephew since his sister died two years ago in a car accident. His nephew’s school closed in March because of COVID-19.

Collins said his employer, ASO Safety Solutions, paid him for only the first week of his company-ordered quarantine. Any additional time off would come out of his accrued sick and vacation time, he was told.

ASO Safety Solutions didn’t respond to requests for comment, nor did the law firm representing the company.

In his response to the complaint submitted to the court, the lawyer representing the company denied that ASO had retaliated against Collins for whistleblowing, asserting he had resigned. The response, by John Olsen, with Ferdinand IP Law Group, also said that the provisions of the Families First Coronavirus Response Act do not apply to the company. The lawyers have exchanged requests for discovery, Fernandez said, which should be answered in the next several weeks.

A few states and cities have stepped in to help whistleblowers. Virginia was the first to put in place statewide workplace safety standards related to COVID-19, spurred by concerns from workers in poultry plants, said Rachel McFarland, a staff attorney at the Legal Aid Justice Center in Charlottesville. The standards include specific provisions protecting workers from retaliation for raising safety concerns or refusing to work in a location they believe is unsafe.

Colorado and the cities of Philadelphia and Chicago likewise passed laws prohibiting employers from retaliating against workers who raise COVID-related safety concerns, refuse to work in unsafe conditions or take time off to minimize the transmission of the virus.

But these laws are the exceptions, said Brent Newell, a senior attorney at Public Justice in Oakland, California, who has represented the interests of workers in meatpacking plants. “Many states haven’t done that and won’t do that,” he said. “For the federal government to put it on the states to protect workers is wholly and fundamentally inadequate.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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UVA Health Still Squeezing Money From Patients — By Seizing Their Home Equity

Doris Hutchinson wanted to use money from the sale of her late mother’s house to help her grandchildren go to college.

Then she learned the University of Virginia Health System was taking $38,000 of the proceeds because a 13-year-old medical bill owed by her deceased brother had somehow turned into a lien on the property.

“It was a mess,” she said. “There are bills I could pay with that money. I could pay off my car, for one thing.”

Property liens are the hidden icebergs of patient medical debt, legal experts say, lying unseen, often for decades, before they surface to claim hard-won family savings or inheritance proceeds.

An ongoing examination by KHN into hospital billing and collections in Virginia shows just how widespread and destructive they can be. KHN reported a year ago that UVA Health had sued patients 36,000 times over six years for more than $100 million, often for amounts far higher than what an insurer would have paid for their care. In response to the articles, the system temporarily suspended patient lawsuits and wage garnishments, increased discounts for the uninsured and broadened financial assistance, including for cases dating to 2017.

Those changes were “a first step” in reforming billing and collection practices, university officials said at the time.

However, UVA Health continues to rely on thousands of property liens to collect old bills, in contrast to VCU Health, another huge, state-owned medical system examined by KHN. VCU Health pledged in March to stop seizing patients’ wages over unpaid bills and to remove all property liens, which are created after a creditor wins a court judgment.

Working courthouse-by-courthouse, VCU Health now says it has discovered and released 45,000 property liens filed against patients just in Richmond, its home city, some dating to the 1990s. There are an estimated 35,000 more in other parts of the state. Fifteen thousand of those have been canceled and they are working on the rest, officials said. These figures have not been previously reported. The system is part of Virginia Commonwealth University.

VCU Health’s total caseload is “a huge number” but perhaps not astonishing given the energy with which many hospital systems sue their patients, said Carolyn Carter, deputy director of the National Consumer Law Center.

Despite having suspended patient lawsuits, UVA Health has continued to create property liens based on older court cases, court records show. The number of new liens is “small,” said UVA Health spokesperson Eric Swensen.

An advisory council of UVA Health officials and community leaders is expected to deliver new recommendations by the end of October, Swensen said. The council, whose schedule has been slowed by the coronavirus crisis, has discussed property liens, Don Gathers, an activist and council member, said in an interview this summer.

Nobody knows how many old or new UVA Health liens are scattered through scores of Virginia courthouses. The health system, which has sued patients in almost every county and city in the state, has failed to respond to repeated requests over two years to disclose the number and value of its property liens.

But in Albemarle County alone, which surrounds the university’s Charlottesville home, “there are thousands” of UVA Health judgments filed in the land records, which creates a lien, said Circuit Court Clerk Jon Zug.

Not just Virginia homes are at risk. UVA Health lawyers search the nation for property or other assets owned by patients with outstanding bills and have filed liens in Maryland, West Virginia, Ohio and Florida, court records show.

The system put a lien on a Nevada vacation condo owned by Veronica Musie’s family a decade ago over a $30,600 hospital bill, said Musie, who lives in northern Virginia. The family has since paid the debt.

Virginia property liens expire after 20 years. But UVA Health often renews them. Since 2017, just in Albemarle County, it has renewed more than three dozen liens. That means the medical system could seize families’ home equity until 2039 for bills dating to the last century.

UVA Health and other medical systems rarely force the sale of a home to claim money. Instead, they wait for families to refinance or sell, taking their cut at the settlement table. But with 6% simple interest accumulating year after year after the court judgment, as allowed by Virginia law, the final amount owed can be much more than the original charges.

UVA Health treated Hutchinson’s brother for heart disease in the early 2000s. The unpaid bill was $24,868. The system laid claim to their mother’s home because he was one of her heirs. The claim is up to $38,000 now, she said, because of interest charges. Hutchinson has been disputing it for more than a year.

VCU Health and its MCV Physicians affiliate estimate that eliminating two decades of property liens in courthouses across the state, which they began to do last year after KHN published its reports, won’t be finished until spring.

Richmond was especially problematic. Because releasing 40,000 Richmond liens by hand would have been impractical, VCU Health got a judge’s permission to do it with computer code.

Creditors such as UVA and VCU don’t need addresses to create liens. All they have to do is file a judgment in county or city land records. If debtors own any property there, title companies won’t approve a sale until the debt is paid, often with home equity.

Often owners don’t know debts exist until paralegals unearth them when homes are sold, property pros say. Old debts can create liens on newly acquired real estate.

“It could be your grandmother’s house, and as soon as you’ve inherited it, and you’ve got judgments, those [liens] are now attached,” said Richmond Court Clerk Edward Jewett.

Frequently debtors own no property, so judgments in the land records expire without hospitals or other creditors getting anything.

VCU and MCV had no idea how many liens they had placed across the state until they began investigating last year after KHN’s inquiries, officials said.

“It’s an incredibly manual process” to cancel the claims, partly because computer systems at many courthouses prohibit an easy tech solution, said Melinda Hancock, VCU Health’s chief administrative and financial officer. But it’s worth it to remove a burden on patients, she said, adding, “This is an outdated collections practice whose time has come and gone.”

But many medical systems still do it, consumer debt experts say, noting that obtaining a complete picture of hospital property liens is impossible.

Land and judgment records are held by thousands of local court clerks, often using separate computer systems. Records are difficult or impossible to obtain in bulk.

“There is not a good nationwide study that I know of that looks at how widespread this is, how many consumers are affected, what’s the average size of a lien,” said Erin Fuse Brown, a law professor at Georgia State University who studies hospital billing.

Mike Miller and Kitt Klein are among those hoping UVA Health follows VCU Health in canceling thousands of property liens. They fear a $129,000 judgment won by UVA in 2017 against Miller will cost them the equity in their home in Quicksburg, Virginia.

They make about $25,000 a year. Miller, a house painter, was insured but received out-of-network radiation at UVA that doctors said was necessary to treat his lung cancer.

After KHN wrote about his case a year ago, benefits firm WellRithms analyzed his UVA bill and found that a commercial insurer would have paid a little more than $13,000, not $129,000, for the treatment.

“We know all [health care] providers bill a lot, but usually ‘a lot’ is three to six times what reasonable prices would be,” said Jordan Weintraub, vice president of claims for WellRithms. Trying to collect 10 times as much, she said, “is really out there.”

UVA Health does not comment on individual patient cases, Swensen said.

KHN found last year that UVA frequently sued patients for far more than what the system could have collected from insurance.

Early this year Miller and Klein emailed UVA President James Ryan, asking for help in reducing or eliminating the judgment. His office phoned in February, saying it would review the case.

“I became very emotional, filled with gratitude,” Klein said. “I couldn’t talk.”

Months went by with no contact. Recently a lawyer from the office of Virginia Attorney General Mark Herring offered to settle the case for $120,000, Klein said, reducing the bill by only $9,000. They don’t have the money. Miller’s cancer has returned. Interest is mounting at 6%.

University officials do not comment on legal matters or individual cases, a Ryan spokesperson said. Herring’s office did not respond to requests for comment.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Most Home Health Aides ‘Can’t Afford Not to Work’ — Even When Lacking PPE

In March, Sue Williams-Ward took a new job, with a $1-an-hour raise.

The employer, a home health care agency called Together We Can, was paying a premium — $13 an hour — after it started losing aides when COVID-19 safety concerns mounted.

Williams-Ward, a 68-year-old Indianapolis native, was a devoted caregiver who bathed, dressed and fed clients as if they were family. She was known to entertain clients with some of her own 26 grandchildren, even inviting her clients along on charitable deliveries of Thanksgiving turkeys and Christmas hams.

Without her, the city’s most vulnerable would have been “lost, alone or mistreated,” said her husband, Royal Davis.

Despite her husband’s fears for her health, Williams-Ward reported to work on March 16 at an apartment with three elderly women. One was blind, one was wheelchair-bound, and the third had a severe mental illness. None had been diagnosed with COVID-19 but, Williams-Ward confided in Davis, at least one had symptoms of fatigue and shortness of breath, now associated with the virus.

Even after a colleague on the night shift developed pneumonia, Williams-Ward tended to her patients — without protective equipment, which she told her husband she’d repeatedly requested from the agency. Together We Can did not respond to multiple phone and email requests for comment about the PPE available to its workers.

Still, Davis said, “Sue did all the little, unseen, everyday things that allowed them to maintain their liberty, dignity and freedom.”

He said that within three days Williams-Ward was coughing, too. After six weeks in a hospital and weeks on a ventilator, she died of COVID-19. Hers is one of more than 1,200 health worker COVID deaths that KHN and The Guardian are investigating, including those of dozens of home health aides.

During the pandemic, home health aides have buttressed the U.S. health care system by keeping the most vulnerable patients — seniors, the disabled, the infirm — out of hospitals. Yet even as they’ve put themselves at risk, this workforce of 2.3 million — of whom 9 in 10 are women, nearly two-thirds are minorities and almost one-third are foreign-born — has largely been overlooked.

Home health providers scavenged for their own face masks and other protective equipment, blended disinfectant and fabricated sanitizing wipes amid widespread shortages. They’ve often done it all on poverty wages, without overtime pay, hazard pay, sick leave and health insurance. And they’ve gotten sick and died — leaving little to their survivors.

Speaking out about their work conditions during the pandemic has triggered retaliation by employers, according to representatives of the Service Employees International Union in Massachusetts, California and Virginia. “It’s been shocking, egregious and unethical,” said David Broder, president of SEIU Virginia 512.

The pandemic has laid bare deeply ingrained inequities among health workers, as Broder puts it: “This is exactly what structural racism looks like today in our health care system.”

Every worker who spoke with KHN for this article said they felt intimidated by the prospect of voicing their concerns. All have seen colleagues fired for doing so. They agreed to talk candidly about their work environments on the condition their full names not be used.

***

Tina, a home health provider, said she has faced these challenges in Springfield, Massachusetts, one of the nation’s poorest cities.

Like many of her colleagues — 82%, according to a survey by the National Domestic Workers Alliance — Tina has lacked protective equipment throughout the pandemic. Her employer is a family-owned company that gave her one surgical mask and two pairs of latex gloves a week to clean body fluids, change wound dressings and administer medications to incontinent or bedridden clients.

When Tina received the company’s do-it-yourself blueprints — to make masks from hole-punched sheets of paper towel reinforced with tongue depressors and gloves from garbage bags looped with rubber bands — she balked. “It felt like I was in a Third World country,” she said.

The home health agencies that Tina and others in this article work for declined to comment on work conditions during the pandemic.

In other workplaces — hospitals, mines, factories — employers are responsible for the conditions in which their employees operate. Understanding the plight of home health providers begins with American labor law.

The Fair Labor Standards Act, which forms the basis of protections in the American workplace, was passed in an era dually marked by President Franklin Delano Roosevelt’s New Deal changes and marred by the barriers of the Jim Crow era. The act excluded domestic care workers — including maids, butlers and home health providers — from protections such as overtime pay, sick leave, hazard pay and insurance. Likewise, standards set by the Occupational Safety and Health Administration three decades later carved out “domestic household employment activities in private residences.”

“A deliberate decision was made to discriminate against colored people — mostly women — to unburden distinguished elderly white folks from the responsibility of employment,” said Ruqaiijah Yearby, a law professor at St. Louis University.

In 2015, several of these exceptions were eliminated, and protections for home health providers became “very well regulated on paper,” said Nina Kohn, a professor specializing in civil rights law at Syracuse University. “But the reality is, noncompliance is a norm and the penalties for noncompliance are toothless.”

Burkett McInturff, a civil rights lawyer working on behalf of home health workers, said, “The law itself is very clear. The problem lies in the ability to hold these companies accountable.”

The Occupational Safety and Health Administration has “abdicated its responsibility for protecting workers” in the pandemic, said Debbie Berkowitz, director of the National Employment Law Project. Berkowitz is also a former OSHA chief. In her view, political and financial decisions in recent years have hollowed out the agency: It now has the fewest inspectors and conducts the fewest inspections per year in its history.

Furthermore, some home health care agencies have classified home health providers as contractors, akin to gig workers such as Uber drivers. This loophole protects them from the responsibilities of employers, said Seema Mohapatra, an Indiana University associate professor of law. Furthermore, she said, “these workers are rarely in a position to question, or advocate or lobby for themselves.”

Should workers contract COVID-19, they are unlikely to receive remuneration or damages.

Demonstrating causality — that a person caught the coronavirus on the job — for workers’ compensation has been extremely difficult, Berkowitz said. As with other health care jobs, employers have been quick to point out that workers might have caught the virus at the gas station, grocery store or home.

Many home health providers care for multiple patients, who also bear the consequences of their work conditions. “If you think about perfect vectors for transmission, unprotected individuals going from house to house have to rank at the top of list,” Kohn said. “Even if someone didn’t care at all about these workers, we need to fix this to keep Grandma and Grandpa safe.”

Nonetheless, caregivers like Samira, in Richmond, Virginia, have little choice but to work. Samira — who makes $8.25 an hour with one client and $9.44 an hour with another, and owes tens of thousands of dollars in hospital bills from previous work injuries — has no other option but to risk getting sick.

“I can’t afford not to work. And my clients, they don’t have anybody but me,” she said. “So I just pray every day I don’t get it.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Stigma Against D.O.s Had Been Dissipating Until Trump’s Doctor Took the Spotlight

Dr. Katherine Pannel was initially thrilled to see President Donald Trump’s physician is a doctor of osteopathic medicine. A practicing D.O. herself, she loved seeing another glass ceiling broken for the type of doctor representing 11% of practicing physicians in the U.S. and now 1 in 4 medical students in the country.

But then, as Dr. Sean Conley issued public updates on his treatment of Trump’s COVID-19, the questions and the insults about his qualifications rolled in.

“How many times will Trump’s doctor, who is actually not an MD, have to change his statements?” MSNBC’s Lawrence O’Donnell tweeted.

“It all came falling down when we had people questioning why the president was being seen by someone that wasn’t even a doctor,” Pannel said.

The osteopathic medical field has had high-profile doctors before, good and bad. Dr. Murray Goldstein was the first D.O. to serve as a director of an institute at the National Institutes of Health, and Dr. Ronald R. Blanck was the surgeon general of the U.S. Army. Former Vice President Joe Biden, challenging Trump for the presidency, also sees a doctor who is a D.O. But another now former D.O., Larry Nassar, who was the doctor for USA Gymnastics, was convicted of serial sexual assault.

Still, with this latest example, Dr. Kevin Klauer, CEO of the American Osteopathic Association, said he’s heard from many fellow osteopathic physicians outraged that Conley — and by extension, they, too — are not considered real doctors.

“You may or may not like that physician, but you don’t have the right to completely disqualify an entire profession,” Klauer said.

For years, doctors of osteopathic medicine have been growing in number alongside the better-known doctors of medicine, who are sometimes called allopathic doctors and use the M.D. after their names.

According to the American Osteopathic Association, the number of osteopathic doctors grew 63% in the past decade and nearly 300% over the past three decades. Still, many Americans don’t know much about osteopathic doctors, if they know the term at all.

“There are probably a lot of people who have D.O.s as their primary [care doctor] and never realized it,” said Brian Castrucci, president and CEO of the de Beaumont Foundation, a philanthropic group focused on community health.

So What Is the Difference?

Both types of physicians can prescribe medicine and treat patients in similar ways.

Although osteopathic doctors take a different licensing exam, the curriculum for their medical training — four years of osteopathic medical school — is converging with M.D. training as holistic and preventive medicine becomes more mainstream. And starting this year, both M.D.s and D.O.s were placed into one accreditation pool to compete for the same residency training slots.

But two major principles guiding osteopathic medical curriculum distinguish it from the more well-known medical school route: the 200-plus hours of training on the musculoskeletal system and the holistic look at medicine as a discipline that serves the mind, body and spirit.

The roots of the profession date to the 19th century and musculoskeletal manipulation. Pannel was quick to point out the common misconception that their manipulation of the musculoskeletal system makes them chiropractors. It’s much more involved than that, she said. Dr. Ryan Seals, who has a D.O. degree and serves as a senior associate dean at the University of North Texas Health Science Center in Fort Worth, said that osteopathic physicians have a deeper understanding than allopathic doctors of the range of motion and what a muscle and bone feel like through touch.

That said, many osteopathic doctors don’t use that part of their training at all: A 2003 Ohio study said approximately 75% of them did not or rarely practiced osteopathic manipulative treatments.

The osteopathic focus on preventive medicine also means such physicians were considering a patient’s whole life and how social factors affect health outcomes long before the pandemic began, Klauer said. This may explain why 57% of osteopathic doctors pursue primary care fields, as opposed to nearly a third of those with doctorates of medicine, according to the American Medical Association.

Pannel pointed out that she’s proud that 42% of actively practicing osteopathic doctors are women, as opposed to 36% of doctors overall. She chose the profession as she felt it better embraced the whole person, and emphasized the importance of care for the underserved, including rural areas. She and her husband, also a doctor of osteopathic medicine, treat rural Mississippi patients in general and child psychiatry.

Given osteopathic doctors’ likelihood of practicing in rural communities and of pursuing careers in primary care, Health Affairs reported in 2017, they are on track to play an increasingly important role in ensuring access to care nationwide, including for the most vulnerable populations.

Stigma Remains

To be sure, even though the physicians end up with similar training and compete for the same residencies, some residency programs have often preferred M.D.s, Seals said.

Traditional medical schools have held more esteem than schools of osteopathic medicine because of their longevity and name recognition. Most D.O. schools have been around for only decades and often are in Midwestern and rural areas.

While admission to the nation’s 37 osteopathic medical schools is competitive amid a surge of applicants, the grade-point average and Medical College Admission Test scores are slightly higher for the 155 U.S. allopathic medical schools: The average MCAT was 506.1 out of 528 for allopathic medical school applicants over a three-year period, compared with 503.8 for osteopathic applicants for 2018.

Seals said prospective medical students ask the most questions about which path is better, worrying they may be at a disadvantage if they choose the D.O. route.

“I’ve never felt that my career has been hindered in any way by the degree,” Seals said, noting that he had the opportunity to attend either type of medical school, and osteopathic medicine aligned better with the philosophy, beliefs and type of doctor he wanted to be.

Many medical doctors came to the defense of Conley and their osteopathic colleagues, including Dr. John Morrison, an M.D. practicing primary care outside of Seattle. He was disturbed by the elitism on display on social media, citing the skills of the many doctors of osteopathic medicine he’d worked with over the years.

“There are plenty of things you can criticize him for, but being a D.O. isn’t one of them,” Morrison said.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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Does the Federal Health Information Privacy Law Protect President Trump?

Within one day, President Donald Trump announced his COVID diagnosis and was admitted to Walter Reed National Military Medical Center for treatment. The flurry of events was stunning, confusing and triggered many questions. What was his prognosis? When was he last tested for COVID-19? What is his viral load?

The answers were elusive.

Picture the scene on Oct. 5. White House physician Dr. Sean Conley, flanked by other members of Trump’s medical team, met with reporters outside the hospital. But Conley would not disclose the results of the president’s lung scans and other vital information, invoking a federal law he said allows him to selectively provide intel on the president’s health.

“There are HIPAA rules and regulations that restrict me in sharing certain things for his safety and his own health,” he told the reporters.

The law he’s referring to, HIPAA, is the Health Insurance Portability and Accountability Act of 1996, which includes privacy protections designed to shield personal health information from disclosure without a patient’s consent.

Because this is likely to remain an issue, we decided to take a look. In what cases does HIPAA restrict the sharing of information — and is the president covered by it?

Experts agreed that he is, but several noted there are exceptions to its protections — stirring debate over the airwaves and on Twitter regarding what information about the president’s health should be released.

Explaining the Protections

HIPAA and the rules for its implementation apply to medical providers — such as doctors, dentists, pharmacists, hospitals — and most health plans that either provide or pay for medical care.

In some cases, the law permits the sharing of medical information without specific consent, such as when needed for treatment purposes or billing. Examples include doctors or hospitals sharing information with other physicians or facilities involved in the patient’s care, or information shared about tests, drugs or other medical care so bills can be sent to patients.

Other than that, without specific patient consent, the law is clear.

“The default rule under HIPAA is that health care providers may not disclose a patient’s health information. Period,” said Joy Pritts, a consultant in Washington, D.C., and a former privacy official in the Obama administration.

The experts we consulted all agreed that Trump’s doctors are bound by HIPAA. Since he is their patient, they cannot share his medical information without his consent.

Patients can allow some information to be released while demanding that other bits be withheld.

That may be why the public has been given only select details about Trump’s COVID-19 status, such as when Conley discussed the president’s blood pressure reading but not the results of his lung scans.

Trump “can pick and choose what he wants to disclose,” Pritts said.

So it is up to Trump to give his doctors the green light to report to the public on his condition.

“HIPAA does not prevent the president of the United States from authorizing the disclosure of all publicly relevant information,” said Lawrence Gostin, a professor of global health law at Georgetown University. “He can share it if he wanted to and he can tell his doctors to share it.”

Elizabeth Gray, a teaching assistant professor of health policy and management at George Washington University, said that because Conley shared some medically private information with the American public, there must have been a conversation between the president and his doctors about what was OK to include in their press briefings.

“He would have had to have given his authorization,” said Gray. In other words, Trump OK’d the details his doctors mentioned, but when follow-up questions were asked, she said, HIPAA was “a shield” because “the president hadn’t authorized the release of anything else.”

Still, beyond HIPAA, other factors could lead to less-than-complete disclosure of the president’s health.

For starters, Trump is the commander in chief, and his personal physician is a member of the military.

“If your commander in chief says, ‘I’m giving you a command — forget about HIPAA,’” said Thomas Miller, a resident fellow with the American Enterprise Institute.

Pritts and others also said the president’s physician may not be covered by HIPAA if his care is provided by the White House medical unit, which does not bill for its services or involve health insurance.

But, “whether covered by HIPAA or not, a physician has an ethical obligation to maintain patient confidentiality,” Pritts said.

And Leaks?

It’s also important to note that HIPAA applies only to health care professionals and related entities working within that sphere.

So, when Sean Spicer, former White House press secretary, tweeted on Oct. 5 that a journalist had violated HIPAA (he misspelled it as “HIPPA”) by reporting that a member of the White House press shop had COVID-19, he was wrong, said the experts.

“Journalists are not bound by HIPAA,” said Gostin.

Gray likened HIPAA in that way to a door.

“Behind that door is health care information. Hypothetically, only doctors have access to that information, and HIPAA prevents health care providers from unlocking that door,” she said. “But, once the info gets out of that door, then HIPAA no longer applies.”

And the information is likely to come out — sooner or later, said Miller. “Leaking will take care of most reporting and disclosure” about the president’s health, he said.

The Exceptions

Within HIPAA are a couple of exceptions identifying when health information can be disclosed without the authorization of the patient.

For example, the law does allow for disclosure if it “is necessary to prevent or lessen a serious and imminent threat to the health or safety of a person or the public.”

Might that apply here, given that Trump took a ride around Walter Reed in a government SUV with Secret Service agents, or returned to a White House filled with other employees?

Jonathan Turley, a professor of public interest law at George Washington University Law School, said he doesn’t think the public health exemption would apply in this case.

“If a patient is contagious and noncompliant, doctors can make disclosure in the interest of public health,” Turley wrote in an email. “However, the team of doctors stated that they felt that it was appropriate to send President Trump back to the White House to continue to recover.”

Moreover, Turley noted that nothing was withheld that would have qualified for this exception. “The world knows that the president is COVID-positive and still likely contagious,” he wrote. “It is unclear what further information would do in order to put the world on notice.”

Some experts, however, expressed a different view. They argued that the details of when the president last tested positive would provide insight into who may have been exposed and how long he should be considered infectious and asked to isolate. Even so, the law’s public health exemption is usually interpreted to mean such information would be shared only with state and local health officials.

There are two HIPAA exceptions that apply specifically to the president, said Gray.

“They could make that disclosure to people who need to know, to the Secret Service or the vice president, but it is essentially only to protect [the president],” said Gray. “There is also an armed forces exception, but disclosures are in regards to carrying out a military mission, which doesn’t apply here.”

What about national security?

Miller, at AEI, said concerns about national security could be among the reasons for more disclosure, such as questioning a president’s ability to carry out duties. But HIPAA wasn’t designed to address this point.

Some argue that because the president is not just an average citizen, he should waive his right to medical privacy.

“The president is not just an individual; the president is the chief executive,” said Charles Stevenson, an adjunct lecturer on American foreign policy at Johns Hopkins University. “The president loses a lot of privacy because our political system, our governmental system demands it. The president always has to be available to the military and that means the state of his health is a matter of national security.”

Historical precedent

Trump is one in a long line of presidents who have not been completely transparent in sharing their medical information.

“There’s a pretty strong tradition of these things being obscured,” said John Barry, an adjunct faculty member at the Tulane University School of Public Health and Tropical Medicine. And no federal law requires a president to provide this information.

One of the most notable examples is President Woodrow Wilson, said Barry.

Wilson likely caught the so-called Spanish influenza in 1919, which was kept secret. Later that year, he had a severe stroke that disabled him, the gravity of which was also hidden from the public.

President John F. Kennedy used painkillers and other medications while in office, which wasn’t made public until years after his death.

And when President Ronald Reagan was shot in 1981, he was much closer to death than his White House spokesperson described to the public. There were also questions about Reagan’s mental acuity while in his final years in office. He was diagnosed with Alzheimer’s disease five years after his final term.

Why would White Houses want to obscure health information of presidents?

“Every White House wants the public to think the president is healthy, strong and capable of leading the country,” said Barry. “That’s consistent across parties and presidencies.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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