Category: From California Healthline.org

President Donald Trump entered office seeking a massive overhaul of the Medicaid program, which had just experienced the biggest growth spurt in its 50-year history.

His administration supported repealing the Affordable Care Act’s Medicaid expansion, which has added millions of adults to the federal-state health program for lower-income Americans. He also wanted states to require certain enrollees to work. He sought to discontinue the open-ended federal funding that keeps pace with rising Medicaid enrollment and costs.

He has achieved none of these ambitious goals.

Although Congress and the courts blocked a Medicaid overhaul, the Trump administration has left its mark on the nation’s largest government-run health program as it has sought to make states more responsible for assessing its impact and improving the health of enrollees.

One notable achievement: The Trump administration pushed some states to be more aggressive in weeding out ineligible recipients — an initiative that led to a drop in enrollment of children in several states, including Missouri and Tennessee. About half of those enrolled in Medicaid are children.

A recent report from the Georgetown University Center for Children and Families found that the number of uninsured children rose by more than 700,000 to 4.4 million from 2017 through 2019. The increase of uncovered children stands out since uninsured rates typically drop during periods of economic growth, such as the one occurring from 2017 to 2019.

Advocates for the poor say the administration’s efforts contributed to an increase in the number of uninsured children, after years of decline. “The administration has not succeeded on any of its goals in any meaningful way,” said Joan Alker, executive director of the Georgetown center. “But they still have inflicted some damaging changes to the program.”

“The administration has not prioritized the health of children,” said Bruce Lesley, president of the child advocacy group First Focus on Children.

Alker attributes the rise in uninsured children to federal officials’ decision to slash outreach funding for the Obamacare insurance exchanges — through which families eligible for Medicaid are often identified — and the administration’s focus on the “public charge” rule. That provision allows the federal government to more easily deny permanent residency status, popularly known as green cards, or entry visas to applicants who use — or are deemed likely to use — publicly funded programs such as food stamps, housing assistance and Medicaid.

Medicaid officials said the increase is partly due to loss of health coverage by middle-income families who are not eligible for Medicaid. They say those families don’t qualify for government subsidies for the ACA’s marketplace plans and were forced to drop their plans because of high premiums.

But Alker said federal data suggests that families who have incomes over the 400% federal poverty level eligibility limit for subsidies (about $87,000 for a family of three) saw a slower rate of increase in the number of uninsured children as opposed to lower-income kids.

A spokesperson for the federal government’s Centers for Medicare & Medicaid Services said the agency was “committed to ensuring that eligible children are enrolled and retained in coverage” and it spent $48 million in grants for outreach and enrollment effort last year.

The Trump administration opposes the ACA’s expansion of Medicaid, which provided billions in federal dollars to cover nondisabled, low-income adults. Yet seven states adopted the expansion during the past three years, including Republican-controlled Utah, Idaho, Oklahoma, Nebraska and Missouri.

Despite the aim to shrink the program, about 75 million people were enrolled in Medicaid in June 2020 — roughly the same number as in January 2017, when Trump took office.

One reason is that Medicaid enrollment soared this year following the COVID-19 outbreak as unemployment spiked to historic highs and federal stimulus money forbid states to drop anyone unless they moved out of state.

But that is far from the administration’s goal of “ushering in a new day” for Medicaid, as CMS Administrator Seema Verma said when she laid out her bold vision in a 2017 speech.

Verma acknowledged she was stepping into a hornet’s nest of entrenched stakeholders and interest groups.

“I would like to invite everybody here today who have fought the political healthcare battles over the last decade to take a deep breath, exhale and agree to reset as a group,” she said.

They didn’t. The administration’s major Medicaid changes were met with opposition from hospitals, doctors and patient advocacy groups, who feared the efforts would lead to cuts in funding or add obstacles for enrollees seeking care.

Officials spent two years seeking to allow states to require enrollees to work or volunteer as a condition for enrollment. They approved proposals from 10 states, but only Arkansas implemented the new requirement before a federal judge ruled it illegal. Arkansas’ brief experience resulted in more than 18,000 adults losing coverage.

After losing in federal district and appeals courts, the Trump administration has appealed to the Supreme Court, which will decide later this year whether to take the case.

The push for work requirements and other changes have altered the culture of Medicaid so that officials are more intent on keeping people out of the program instead of welcoming more in, said Lesley, of First Focus.

Before the pandemic, he said, the administration allowed states to add hurdles for families to get enrolled and stay enrolled, such as requiring them to more frequently recertify their income eligibility.

Aaron Yelowitz, a professor of economics at the University of Kentucky, said one of the Trump administration’s biggest impacts on Medicaid was prodding states to be more active in making sure they were covering only people who met the states’ eligibility rules. He noted the ACA gave states incentives to enroll newly eligible adults over traditional groups such as children and the disabled because the federal government paid a higher share of the cost.

Seeking Flexibility for States

The administration — as well as Republicans in Congress — favored a fundamental change in how Medicaid is funded. But Congress failed to move the program to a “block grant” approach, which would have given states a set annual amount — rather than the current system that provides funding determined by how many people qualify for the program and health costs. The GOP proposal also would have allowed states more flexibility in running the operations.

Critics predicted a block grant would have cut billions in state funding and led to cuts in services and eligibility.

Once the legislative proposal was dead, the administration sought to enact the strategy via its authority to test changes in payment methods. Only one state applied — Oklahoma — and it dropped its application this year after voters passed a Medicaid expansion ballot initiative.

Verma promised to give states more flexibility in running their programs in other ways, while also holding them more accountable for care to Medicaid enrollees. CMS has approved dozens of Medicaid waivers since 2017, including allowing states to be more innovative in helping enrollees with substance abuse or addiction problems and serious mental illness. It granted more than 30 states waivers to enhance treatment options.

With Medicaid paying for more than half of all births in the United States, Verma also sought to improve oversight of prenatal and early childhood services.

While CMS has started a scorecard to track Medicaid outcomes, the data is missing for several states or outdated on several measures. For example, the low-birthweight measure is missing data from more than 20 states and no data is listed on children born with an addiction.

CMS officials said they are working to provide more updated information on its report card.

Changes implemented by the administration, officials added, have elicited more timely data from states, allowing them to spot problems quicker. For example, in September, CMS determined that many children were delayed from March through May in seeing a doctor and getting important vaccines as the pandemic took hold. CMS pushed states and health providers to remedy the problem but did not offer specific help.

Asked during a recent phone briefing with reporters about Medicaid’s legacy under her stewardship, Verma didn’t mention the expansion, work requirements or efforts to turn Medicaid into a block grant program for states.

“We have aimed to try to ensure the program is sustainable for generations to come and ensure better outcomes for those it serves,” she said.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family 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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The weeks of fear and uncertainty that Pam and Paul Alexander suffered as their adult daughter struggled against COVID-19 etched itself into the very roots of their hair, leaving behind bald patches by the time she left the hospital in early May.

Tisha Holt had been transferred by ambulance from a smaller hospital outside Nashville, Tennessee, to Vanderbilt University Medical Center on April 14, when her breathing suddenly worsened and doctors suspected COVID-19. Within several days her diagnosis had been confirmed, her oxygen levels were dropping, and breathing had become so excruciating that it felt like her “lungs were wrapped in barbed wire,” as Tisha describes it.

Vanderbilt doctors put the 42-year-old on a mechanical ventilator, and the next few weeks passed in a blur for her parents, who waited helplessly for the next update about the eldest of their three children.

“That’s when it got really, really bad,” Pam said. “We were not allowed to see her, to go, to talk to her — not anything. I would call. And I might get somebody, and then again I might not.” Later that first week after Tisha arrived at Vanderbilt, Pam reached a nurse. “She said, ‘Ms. Alexander, in all probability your daughter will die today.’ Me and my husband both, we just cried and cried.”

It “was probably more than likely the worst day of my life when the nurse told us that,” Paul said. “She was our first baby, and the first person that I’ve held that was part of me.”

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The number of Americans hospitalized with the virus is increasing again, reaching 41,000 late last week, many with a circle of loved ones holding vigil in their minds, even if they can’t sit at the bedside. A decade ago, critical care clinicians coined the term post-intensive care syndrome, or PICS. It describes the muscle weakness, cognitive changes, anxiety and other physical and mental symptoms that some ICU patients cope with after leaving the hospital. Those complications are fallout from the medications, immobility and other possible components of being critically ill. Now they worry that some family members of critically ill COVID patients may develop a related syndrome, PICS-Family.

Studies show that about one-fourth of family members, and sometimes more, experience at least one symptom of PICS-Family, including anxiety, depression, post-traumatic stress disorder or “complicated grief” — grief that is persistent and disabling — when their loved one has been hospitalized, according to a 2012 review article published in the journal Critical Care Medicine. Dr. Daniela Lamas, a critical care physician at Boston’s Brigham and Women’s Hospital, believes relatives and friends of coronavirus patients may be particularly vulnerable.

Hospital rules designed to prevent the spread of the virus have robbed them of the opportunity to sit with their loved ones, watching clinicians provide medical care and gradually processing what’s happening between physician updates, Lamas said. In pre-pandemic times, a nurse “would explain what they had heard [from the doctor] and help them come to terms with unacceptable realities,” she said.

Life Becomes a Daze

The Alexanders could reach a doctor or nurse on most days. But not always, said Pam, acknowledging that “they had a lot to do.” Pam described trying to cope minute to minute, day to day, waiting for the next report from the hospital, wandering from room to room. “You just walk around sort of in a daze. You can’t think about anything else but that.”

Paul struggled with feelings of depression, often retreating to his workshop. “I wouldn’t do anything but sit there and cry, wouldn’t work on nothing, just sit there with my head in my hands.”

Meanwhile, they had become temporary parents to their grandsons, two teenagers who had homework and laundry and kept asking about their mom. Pam tried to shield them as much as possible. “There are a lot of things I just didn’t tell them until it got really bad,” she said.

Being physically cut off from their daughter was the hardest, Pam and Paul said. “I don’t care if I had to put on 40 layers of clothes,” Pam said. “Just to have gotten to go in and touch her and see her would have made a huge difference.”

Even though family members are typically barred from visiting during the pandemic, they can wrestle with guilt that they let a loved one down in his or her time of need, said Jim Jackson, a psychologist and assistant director at Vanderbilt’s ICU Recovery Center.

Without any visual sense of what’s going on, “people often move to worst-case scenarios; they move to catastrophic thinking,” he said. “And why wouldn’t they, because it’s already a hugely serious situation, right? It’s a five-alarm fire and they’re not able to be engaged.”

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Seeking Healing

Doctors and nurses can ease the strain on loved ones by updating a designated family member at least once a day, said Judy Davidson, a nurse scientist at the University of California-San Diego and an author of the 2012 Critical Care Medicine review article. Arrange video calls, she suggested, so the family can see their loved one and better picture the room, clinicians and broader hospital environment.

“If we don’t protect them and keep them strong while the person is in the ICU,” Davidson said, “they won’t be strong enough to do the caregiving that’s necessary once the person comes home.”

After a patient does return home, family members may shy away from discussing what they have been through, so as not to burden their still recovering loved one, Jackson said. The ICU survivor may remain silent for similar reasons, he said.

“What tends to happen is they both sort of passively agree not to talk about the elephant in the room, when that’s exactly the best thing to do,” Jackson said.

Tisha — who finally left the hospital May 3 — was stunned by her parents’ appearance the first time she saw them. “They both looked exhausted and I was shocked at the amount of hair that they’d lost,” she wrote in an email. Treatment and damaged lungs have made it difficult for her to talk by phone.

Since then, her parents’ bald spots have begun to fill in, but they haven’t released their worry. Tisha can breathe from only the top of her lungs and needs 24-hour oxygen, Pam said. She’s not strong enough to return to work as a nurse, a job she loved. She no longer has health insurance and can’t afford even the cheapest plan on the Affordable Care Act exchanges. To this day, Tisha doesn’t know where she contracted the virus.

Her parents spend virtually all waking hours at Tisha’s home, about a 10-minute drive from their house, and check on her a few times daily, sometimes more often if she’s feeling poorly, Pam said. “I think, ‘Am I going to come over here and she’s going to be dead from her heart not working?’ It scares me to death because she has bad days and good days.”

Tisha keeps her cellphone handy in case they text or call. “If they call and I don’t answer, it sends them into a panic and they are apt to drive over here to make sure everything is alright,” she wrote.

She’s been attending a virtual ICU survivors support group at Vanderbilt that Jackson helps lead. It’s open to relatives, but Pam was unsure she could handle hearing others’ painful stories as she’s still processing her own. “I don’t mind talking to you about it,” she said, “but sometimes talking about it just sort of gets you in a funk.”

Their church community has provided solace, calling when Tisha was in the hospital and leaving food on the porch. Pam and Paul credit a myriad of prayers from loved ones near and far with bringing their daughter home. “Even the doctors, they really didn’t know why she was still here either, to be honest with you,” Paul said.

He hasn’t stopped fretting about his eldest child. “I still can’t turn it off — it hasn’t turned off,” Paul said. “But every day is a blessing, though.”

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. 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

(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

The White House and many Americans have pinned their hopes for defeating the COVID-19 pandemic on a vaccine being developed at “warp speed.” But some scientific experts warn they’re all expecting too much, too soon.

“Everyone thinks COVID-19 will go away with a vaccine,” said Dr. William Haseltine, chair and president of Access Health International, a foundation that advocates for affordable care.

Ongoing clinical trials are primarily designed to show whether COVID-19 vaccines prevent any symptoms of the disease — which could be as minor as a sore throat or cough. But the trials, which will study 30,000 to 60,000 volunteers, will be too short in duration and too small in size to prove that the vaccines will prevent what people fear most — being hospitalized or dying — by the time the first vaccine makers file for emergency authorization, expected to occur later this year, Haseltine said.

The United States should hold out for an optimal vaccine, with more proven capabilities, Haseltine argued. Others say the crushing toll of the pandemic — which has killed at least 225,000 Americans — demands that the country accept the best vaccine it can achieve within the next few months, even if significant questions remain after its release.

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“There’s a tension between getting every piece of information and getting a vaccine [out] in time to save lives,” said Dr. William Schaffner, a professor of preventive medicine and health policy at the Vanderbilt University Medical Cancer.

“Would we like to know if the vaccine reduces illness or mortality? Of course,” said Dr. Peter Lurie, a former FDA official and the current president of the Center for Science in the Public Interest. “But there is a real time pressure. This is a pandemic. It’s explosive.”

Researchers debated how rigorously to test COVID-19 vaccines at a Thursday public meeting of the Food and Drug Administration advisory committee on vaccines.

“Simply preventing mild cases is not enough and may not justify the risks associated with vaccination,” said Peter Doshi, an associate professor at the University of Maryland School of Pharmacy who detailed his concerns in an editorial in The BMJ.

But vaccine experts say there are good reasons to focus on milder cases of COVID-19.

Vaccines that prevent mild disease typically prevent severe disease, as well, said Dr. Arnold Monto, an epidemiologist at the University of Michigan’s School of Public Health and temporary chair of the vaccine committee.

For example, the original studies of the measles vaccine showed only that it prevented measles, not hospitalizations or deaths, said Dr. Kathleen Neuzil, director of the University of Maryland’s Center for Vaccine Development and Global Health.

Later studies found that measles vaccines dramatically reduce mortality. According to the World Health Organization, worldwide deaths from measles fell by 73% from 2000 to 2018 because of vaccines.

“There simply does not exist an example in vaccinology of vaccines that are effective against mild disease that are not more effective in severe disease,” said Dr. Philip Krause, deputy director of the vaccine office at the FDA’s Center for Biologics Evaluation and Research, at Thursday’s hearing.

Dr. Paul Offit, who developed the rotavirus vaccine, compared preventing the coronavirus to fighting a fire.

“If you put out a small fire in the kitchen, you don’t have to worry about the whole house catching fire,” said Offit, a member of the FDA advisory committee on vaccines.

Proving that a vaccine prevents severe illness and death is harder than showing it protects against mild illness because hospitalizations and deaths are much rarer. That’s especially true among the type of health-conscious people who volunteer for vaccine trials, who are probably more likely than others to wear masks and socially distance, Schaffner said.

“When we looked at hospitalizations in older adults with influenza, those were two-year trials,” Neuzil said. In an ongoing study, in which “we’re looking at typhoid vaccines in nearly 30,000 children, it’s a two-year trial.”

The COVID-19 pandemic has officially infected about 8.7 million Americans. Considering that the true number of Americans infected is estimated to be six to 10 times higher than reported, the mortality rate is about 0.6%, said Dr. Amesh Adalja, a senior scholar at the Johns Hopkins University Center for Health Security.

Scientists agree that the ideal vaccine would provide “sterilizing immunity” — which means preventing not only disease symptoms but any infection with the virus, said Dr. Corey Casper, a vaccinologist with the Fred Hutchinson Cancer Research Center and chief executive officer at the Infectious Disease Research Institute in Seattle.

For example, two doses of measles vaccines prevent 97% of people from even becoming infected with that virus.

Few expect COVID-19 vaccines to be that effective. “We’re trying to lower that bar and determine how much lower is acceptable,” Casper said.

Preventing mild disease could curb disease and prevent illness, Casper said.

“We’re probably not going to have the perfect vaccine,” he said. “But I do think we’re likely to have vaccines that, if we can show they’re safe, can put an inflection point on this pandemic. … I think it’s still important to have a vaccine that has some effect even on mild illness.”

Flu shots aren’t super effective — with effectiveness each year ranging from 19% to 70% — but they’re still extremely useful, Casper said.

During the 2018-19 U.S flu season, vaccination prevented an estimated 4.4 million influenza illnesses, 2.3 million medical visits, 58,000 hospitalizations and 3,500 influenza-associated deaths, according to the Centers for Disease Control and Prevention.

A trial of 30,000 to 60,000 people is already fairly large by historical standards. Dramatically expanding the size beyond that isn’t practical in a compressed time frame, Krause said.

“If the endpoint of the trial is severe disease, the trials may need to be almost 10 times as big,” he said at the meeting. “And those trials would be infeasible and we would never get a vaccine.”

On the other hand, “if there is a vaccine that appears to have high efficacy or appears to be capable of saving lives, one doesn’t want to stop that vaccine if there is a significant chance that it will save lives,” Krause said.

Although the coronavirus vaccine trials are measuring severe disease or death, these are “secondary endpoints,” meaning the current size of the study isn’t large enough to produce a statistically significant answer, Neuzil said.

Whether vaccines reduce severe disease and death will become clear in later studies, after vaccines are distributed, Neuzil said.

Offit said the debate revolves around one question: “How much uncertainty are we willing to live with, knowing that we’re facing a virus that has brought us to our knees?”

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[partner-box]App-based driving services such as Uber, Lyft, DoorDash and Instacart are bankrolling California’s Proposition 22, which would keep their drivers classified as independent contractors, not employees.

Leading into the Nov. 3 election, the ballot measure — which has become the most expensive in state history — is mired in controversy and the subject of a lawsuit from Uber drivers alleging that the company inappropriately pressured them to vote for the initiative.

But what’s occasionally lost in the debate over Proposition 22 are the claims about what it will mean for app-based drivers.

Detractors, like unions and driver advocacy groups, say Proposition 22 would strip drivers of the protections of AB-5, a 2019 California law delayed by legal challenges. The law requires drivers to be classified as employees, which would afford them the associated benefits like paid sick leave, workers’ compensation and access to unemployment insurance.

Supporters, such as ride-sharing companies and the California Chamber of Commerce, say Proposition 22 would give drivers benefits, like a guarantee of minimum earnings and compensation when they are hurt on the job, while allowing them to maintain the flexible schedule of independent contractors.

In an online ad paid for by Lyft, the company says “Prop. 22 will give them … health care benefits.”

That sounds like drivers with Uber, Lyft and other app-based companies will automatically get health insurance if Proposition 22 passes. The truth is a little more complicated.

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What Does ‘Health Care Benefits’ Mean?

We reached out to Lyft to back up its claim, and the company directed us to the “Yes on 22” campaign. This is how the campaign explained “health care benefits”:

Under Proposition 22, drivers who qualify — more on that in a minute — would get a stipend they could use to buy an insurance plan from Covered California, the state’s health insurance marketplace.

That stipend would be calculated like this: App-based companies would look at the statewide average monthly premium of bronze-level plans sold on the Covered California exchange.

The companies would then give qualified drivers a stipend of 82% of the average premium, said Geoff Vetter, a spokesperson for the Yes on 22 campaign. (On average, U.S. employers covered 82% of premiums costs for single coverage in 2019.)

So hypothetically, if bronze plans cost an average of $100 per month, Uber, Lyft or a similar company would provide qualifying drivers with $82 per month.

Drivers would be eligible for the full stipend — all $82 in the hypothetical case — if they average 25 hours per week of “engaged” time, which is time spent driving while there’s a passenger in the car. Time spent driving between passengers would not count.

“Most drivers work part time” and spend about one-third of their time waiting for rides and deliveries, according to the nonpartisan state Legislative Analyst’s Office. Using that equation, drivers would need to work an average of 37.5 hours per week for a single company in order to receive the full stipend.

A driver who averages at least 15 but less than 25 hours of engaged time each week would be eligible for 50% of the stipend — or $41 per month.

The stipend would be similar to employer-sponsored insurance because both employers and employees would contribute to the cost of insurance, Vetter said.

“For the people who do work closer to full time, it does give them that ability to receive health care coverage by getting a typical employer contribution for that coverage,” Vetter said.

Does a Stipend Equal Coverage?

But this stipend bears little resemblance to traditional employer-based insurance, which is what drivers would get if they were considered employees instead of gig workers, said Ken Jacobs, chair of the University of California-Berkeley Center for Labor Research and Education.

“It has very, very little relationship to what anyone would think of as job-based coverage,” Jacobs said. “It’s really wrong to think of this as health insurance.”

For instance, under Proposition 22, the stipends would be calculated and distributed quarterly, based on drivers’ hours. That could force drivers to periodically reassess what kind of coverage they would qualify for and could afford.

With traditional employer-sponsored insurance, a driver would enroll in a plan once per year and the premium wouldn’t change.

A vacation or illness could mean that drivers can’t maintain the hours required by the measure, costing them their stipend — and perhaps their insurance — for the quarter, and stripping them of the stability usually associated with job-based coverage, Jacobs said.

And getting money to buy an individual plan isn’t the same as participating in a large group plan offered by an employer, said Jen Flory, a policy advocate at the Western Center on Law & Poverty, a nonprofit organization that advocates for low-income Californians and opposes Proposition 22.

Covered California plans are typically less generous than the policies employees usually get through work, she said. And bronze-level plans, which have the lowest monthly premiums, also have the highest out-of-pocket costs for medical services.

Consider the deductible, which is how much a person needs to pay out-of-pocket before insurance starts paying for care.

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In 2018, fewer than half of Californians who had work-based insurance had a deductible, and on average, that deductible was $1,402 for a single person, according to research from the California Health Care Foundation. (California Healthline is an editorially independent service of the California Health Care Foundation.)

The deductible on a Covered California bronze plan for an individual in 2021 will be $6,300 for medical services plus $500 for prescription drugs. Proposition 22 ties the stipend “to the highest deductible, highest out-of-pocket plans on the market,” Flory said. “And it’s for workers who aren’t making a whole lot of money.”

Drivers could use the stipend to buy a more generous plan, but the monthly premium would be higher and the stipend would cover less of it.

Depending on their incomes and other factors, drivers may also be eligible for tax credits and state and federal subsidies to help them afford plans on the individual market. But Flory said this amounts to the government subsidizing health insurance that employers should be paying for themselves.

It’s also problematic to base the stipends on a statewide average of bronze premiums because that doesn’t take into account the huge regional differences in the cost of care, said Gerald Kominski, a senior fellow at the UCLA Center for Health Policy Research.

“In the Bay Area, that contribution is going to buy a lot less than it would in Southern California,” Kominski said. “We’re a big state and have a lot of variation of health care costs.”

Our Ruling

The stipend offered under Proposition 22 is a “health care benefit,” but the wording is misleading and ignores critical information.

While neither Lyft nor the Yes on 22 campaign says the proposition will give drivers health insurance, saying that it will offer them “health care benefits” gives the impression that the stipend is similar to traditional job-based coverage. It’s not.

Drivers who value the ability to make their own schedules would have to figure out how to work an average of nearly 40 hours a week — essentially full time — to receive the full stipend. The stipend would cover a fraction of the premiums for health insurance that’s typically less generous than what they’d get as employees.

Moreover, because drivers’ stipends could change quarterly based on their driving time — which could be affected by vacation or illness — any coverage purchased with the stipend could carry a cloud of uncertainty.

We rate this claim as Half True.

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La Casa Blanca y muchos estadounidenses han depositado sus esperanzas de derrotar a la pandemia de COVID-19 en una vacuna que se está desarrollando a la “velocidad de la luz”. Pero algunos científicos advierten que se espera demasiado, y demasiado pronto.

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“Todos piensan que COVID-19 desaparecerá con una vacuna”, dijo el doctor William Haseltine, presidente de Access Health International, una fundación que aboga por una atención asequible.

Los ensayos clínicos en curso están diseñados principalmente para mostrar si las vacunas para COVID-19 previenen algún síntoma de la enfermedad, que podría ser tan leve como dolor de garganta o tos.

Pero estos ensayos, que estudian a unos 30,000 a 60,000 voluntarios, serán demasiado breves y demasiado pequeños en número de participantes, para demostrar que las vacunas evitarán lo que la gente más teme, tener que ser hospitalizadas o morir, para cuando los primeros fabricantes presenten una solicitud de autorización de emergencia, algo que se espera que ocurra a finales de este año, expicó Haseltine.

Estados Unidos debería esperar una vacuna óptima, con capacidades más probadas, argumentó Haseltine. Otros dicen que el abrumador número de víctimas de la pandemia, que ha matado al menos a 225,000 estadounidenses, exige que el país acepte la mejor vacuna que pueda lograr en los próximos meses, incluso si persisten dudas importantes después de su lanzamiento.

“Existe una tensión entre obtener cada pieza de información y obtener una vacuna a tiempo para salvar vidas”, dijo el doctor William Schaffner, profesor de medicina preventiva y políticas de salud en el Centro Médico de la Universidad Vanderbilt.

“¿Nos gustaría saber si la vacuna reduce la enfermedad o la mortalidad? Por supuesto”, dijo el doctor Peter Lurie, ex funcionario de la FDA y actual presidente del Center for Science in the Public Interest. “Pero hay una presión de tiempo real. Esta es una pandemia”.

Los investigadores debatieron cuán rigurosamente probar las vacunas para COVID-19 en una reunión pública del comité asesor sobre vacunas de la Administración de Alimentos y Medicamentos (FDA).

“La simple prevención de los casos leves no es suficiente y puede que no justifique los riesgos asociados con la vacunación”, dijo Peter Doshi, profesor asociado de la Escuela de Farmacia de la Universidad de Maryland, quien detalló sus preocupaciones en un editorial de The BMJ.

Pero expertos en vacunas dicen que hay buenas razones para centrarse en los casos más leves de COVID-19.

Las vacunas que previenen enfermedades leves también suelen prevenir enfermedades graves, dijo el doctor Arnold Monto, epidemiólogo de la Escuela de Salud Pública de la Universidad de Michigan y presidente temporal del comité de vacunas.

Por ejemplo, los estudios originales de la vacuna contra el sarampión mostraron que solo prevenía el sarampión, no las hospitalizaciones o las muertes, dijo la doctora Kathleen Neuzil, directora del Centro de Desarrollo de Vacunas y Salud Global de la Universidad de Maryland.

Pero estudios posteriores encontraron que estas vacunas reducían drásticamente la mortalidad. Según la Organización Mundial de la Salud (OMS), las muertes por sarampión en todo el mundo disminuyeron en un 73% entre 2000 y 2018 debido a las vacunas.

“Simplemente no existe un ejemplo en la inmunización con vacunas que sean efectivas contra enfermedades leves que no sean más efectivas en cuadros graves”, dijo el doctor Philip Krause, subdirector de la oficina de vacunas del Centro de Evaluación e Investigación Biológica de la FDA.

El doctor Paul Offit, quien desarrolló la vacuna contra el rotavirus, comparó la prevención del coronavirus con la lucha contra un incendio.

“Si apagas un pequeño incendio en la cocina, no tienes que preocuparte de que toda la casa se incendie”, dijo Offit, miembro del comité asesor de vacunas de la FDA.

Demostrar que una vacuna previene enfermedades graves y la muerte es más difícil que demostrar que protege contra enfermedades leves porque las hospitalizaciones y las muertes son mucho más raras. Eso es especialmente cierto entre el tipo de personas conscientes de su salud que se ofrecen como voluntarias para los ensayos de vacunas, y que seguramente tienen más probabilidades que otras de usar máscaras y distanciarse socialmente, dijo Schaffner.

“Cuando analizamos las hospitalizaciones en adultos mayores con influenza, fueron ensayos de dos años”, dijo Neuzil. En un estudio en curso, en el que “estamos analizando las vacunas contra la fiebre tifoidea en casi 30.000 niños, es una prueba de dos años”.

La pandemia de COVID-19 ha infectado oficialmente a unos 8,7 millones de estadounidenses. Pero teniendo en cuenta que se estima que el número real de infectados es de seis a 10 veces mayor que lo informado, la tasa de mortalidad es de aproximadamente el 0,6%, dijo el doctor Amesh Adalja, investigador principal del Centro de Seguridad Sanitaria de la Universidad Johns Hopkins.

Los científicos están de acuerdo en que la vacuna ideal proporcionaría “inmunidad esterilizante”, lo que significa prevenir no solo los síntomas de la enfermedad, sino también cualquier infección por el virus, dijo el doctor Corey Casper, experto en vacunas del Centro de Investigación del Cáncer Fred Hutchinson y director ejecutivo del Instituto de Investigación de Enfermedades Infecciosas en Seattle.

Por ejemplo, dos dosis de vacunas contra el sarampión evitan que el 97% de las personas se infecten con ese virus.

Pocos esperan que las vacunas para COVID-19 sean tan efectivas. “Estamos tratando de bajar esa expectativa y determinar cuánto más bajo es aceptable”, dijo Casper.

La prevención de una enfermedad leve podría frenar la enfermedad y prevenirla, dijo Casper.

“Probablemente no vamos a tener la vacuna perfecta”, agregó. “Pero creo que es probable que tengamos vacunas que, si podemos demostrar que son seguras, pueden poner un punto de inflexión en esta pandemia. Creo que sigue siendo importante tener una vacuna que tenga algún efecto incluso en enfermedades leves”.

Las vacunas contra la gripe no son muy eficaces, con una efectividad anual que oscila entre el 19% y el 70%, pero siguen siendo extremadamente útiles, dijo Casper.

Durante la temporada de influenza 2018-19 en los Estados Unidos, la vacunación previno aproximadamente 4,4 millones de enfermedades por gripe, 2,3 millones de visitas médicas, 58,000 hospitalizaciones y 3,500 muertes asociadas a este virus, según los Centros para el Control y Prevención de Enfermedades (CDC).

Un ensayo de 30,000 a 60,000 personas ya es bastante grande según los estándares históricos. Expandir drásticamente el tamaño más allá de eso no es práctico en un marco de tiempo limitado, dijo Krause.

“Si el criterio de valoración del ensayo es una enfermedad grave, es posible que los ensayos tengan que ser unas 10 veces más grandes”, explicó. “Y esos ensayos serían inviables y nunca obtendríamos una vacuna”.

Por otro lado, “si hay una vacuna que parece tener una alta eficacia o parece ser capaz de salvar vidas, uno no quiere frenarla, si existe una posibilidad significativa de que salve vidas”, dijo Krause.

Aunque los ensayos de la vacuna contra el coronavirus miden la enfermedad grave o la muerte, estos son “criterios de valoración secundarios”, lo que significa que el tamaño actual del estudio no es lo suficientemente grande como para producir una respuesta estadísticamente significativa, dijo Neuzil.

Si las vacunas reducen la enfermedad grave y la muerte se aclarará en estudios posteriores, después de que se distribuyan las vacunas, dijo Neuzil.

Offit dijo que el debate gira en torno a una pregunta: “¿Con cuánta incertidumbre estamos dispuestos a vivir, sabiendo que nos enfrentamos a un virus que nos ha puesto de rodillas?”.

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Sixty-five-year-old Karen Endicott-Coyan is living with a blood cancer.  Her chemotherapy takes less than 30 minutes. Before the hospital closed, it was just a short drive into the small town of Fort Scott, Kansas, for her to get treatment.

But these days getting to chemo means a trek on rural roads and narrow highways, driving help from her sister-in-law and some Ritz crackers tucked into her purse to steady her stomach on the way home. The whole trip should take less than three hours. Endicott-Coyan puts on her makeup, her diamond earrings and powers through.

“If I can help it, I’m not going to go over there looking like a sick person,” Endicott-Coyan said. “I don’t like looking like a sick person. That’s just me.”

Endicott-Coyan had a long career in hospital administration, and she uses that expertise to try to smooth out her newly fractured health care. But during every minute of the trip, a nagging worry at home steals her energy and attention. In this chapter of the podcast, host-reporter Sarah Jane Tribble goes along for the ride and is witness to the stress and frustration.

The journey illuminates one reason people in rural America are more likely to die from cancer than patients in metro areas.

Click here to read the episode transcript.

“Where It Hurts” is a podcast collaboration between KHN and St. Louis Public Radio. Season One extends the storytelling from Sarah Jane Tribble’s award-winning series, “No Mercy.”

Subscribe to Where It Hurts on iTunes, Stitcher, Google, Spotify or Pocket Casts.

And to hear all KHN podcasts, click here.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family 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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Norma Crosby remembers when she relied on blind faith to cast her vote.

The 64-year-old Texan was born virtually without sight, a side effect of her mother catching rubella while pregnant with her. Friends and relatives stood beside her and filled out her ballot at polling precincts for more than half of her voting life. Then, accessible voting machines rolled out around the year 2000, enabling her to vote in person on her own.

Now, the COVID-19 pandemic makes going to the polls a risky proposition for Crosby. She also has a condition called sarcoidosis that requires her to take immunosuppressant drugs, she said. However, the state does not have a mail-in voting system that accommodates Crosby’s visual impairment.

“It communicates to me that I’m not valued as much as other citizens,” said Crosby, president of the National Federation of the Blind of Texas, “that I’m a second-class citizen.”

A projected 7 million Americans who are eligible to vote in the presidential election live with visual impairments, according to researchers from Rutgers university. For those, like Crosby, who also deal with illnesses that place them at a higher risk of falling seriously ill with COVID-19, voting this year will be especially difficult.

The pandemic exposed glaring holes in absentee and mail-in voting systems around the nation. In some jurisdictions, voters who have what’s known as print disabilities — conditions that make it difficult to process printed content, such as blindness, low vision or learning or physical disabilities — could not cast a ballot remotely without asking for help, thereby compromising their privacy.

Outcry and lawsuits from disability advocates prompted at least 11 states to update their mail-in and absentee ballot systems in an attempt to accommodate these voters. Some changes enable voters to use text-reading software with their ballots and submit them online through a secure portal.

However, some states have been slow to address these needs. In Iowa, voters cannot vote confidentially using the mail-in system because the state requires the use of paper ballots. Texas residents like Crosby must find someone to fill out their ballot and mail it in or take it to the sole drop box in the county — all during a pandemic that has required people to physically distance themselves to stay safe.

“We should not have to choose,” said Chris Danielsen, director of public relations for the National Federation of the Blind, “between endangering our health and going to the polls in person, or not voting at all.”

Several federal laws affirm the right of all people, regardless of disability, to vote in an accessible manner. The Americans with Disabilities Act, passed in 1990, requires state and local governments to make the voting process user-friendly to voters of various abilities. This includes providing accessible parking spaces and placing voting machines where people using wheelchairs have enough space to move and at a height reachable by all.

In 2002, Congress passed the Help America Vote Act. The law built on the previous legislation by requiring every polling place to have at least one voting machine available during federal elections that accommodates a range of disabilities. These gadgets vary in features by manufacturer, but they can include touch screens, buttons labeled in Braille and audio capabilities. Voters using them must have the same privacy and independence enjoyed by people who don’t have such challenges.

However, states largely retained the power to decide how to comply with these federal mandates, said Lisa Schur, co-director of the Program for Disability Research at Rutgers. The result, she said, is an uneven patchwork that voters with disabilities must navigate.

With COVID-19 creating a reason to avoid in-person voting, some states, such as Texas, still failed to take steps to make it possible for a voter with visual or print impairments to fill out a mail-in ballot without assistance. The state government is also embroiled in a lawsuit regarding its decision to limit ballot drop-off boxes to one per county.

Harris County, where Houston is located, covers more than 1,700 square miles and is home to 4.7 million people. The distance becomes an added hardship for voters who opted to vote remotely and would prefer to drop off their ballot to make sure it is counted.

The state declined to comment due to the pending litigation.

Iowa also has fallen short in making systemic changes to improve access, according to disability advocates. Like Texas, the state provides only paper ballots for voters wishing to vote absentee.

Scott Van Gorp, president of the National Federation of the Blind in Iowa, said he initially felt resigned to his lack of privacy when he started voting. He was born three months early, leaving him with little more than light perception for sight. As a college student in the 1990s, Van Gorp rallied his friends to help him cast his vote.

“I kept thinking, ‘That’s not a secret ballot. Why?’”

In a written statement, a spokesperson for the Iowa secretary of state said it has made efforts to even the field by creating a large-print voter registration form and how-to videos on using accessible voting machines at polling locations. It cannot unilaterally make a change to improve accessibility without legislative approval, he added.

Election officials in several other states, though, including the battlegrounds of Nevada, Pennsylvania and Michigan, adopted changes this year to their mail-in ballot systems to accommodate people with visual disabilities.

In Maine, voters with impairments can request, fill out and submit their votes electronically through a new online platform. The ballots are compatible with various types of screen-reader software and will be counted through the same system used for absentee and overseas military voters.

This option became available in early October after the state was notified of confidentiality issues with paper ballots and sued by disability advocates.

Kristen Muszynski, a spokesperson for Maine’s secretary of state office, said some of the plaintiffs named in the lawsuit helped test the system. Litigation is now on hold, she said, and she is hopeful the new voting option will help resolve some of the issues.

“We’re hopeful that the word is starting to get out,” Muszynski said.

A few jurisdictions around the nation offer Braille ballots. However, said Douglas Kruse, co-director of the Program for Disability Research at Rutgers, voters may still need someone to help them fill one out and submit it. These ballots would also need to be counted separately, compromising the voter’s privacy.

One of the few states that have not needed to make drastic changes to accommodate voters with disabilities during the pandemic is Oregon, where mail-in ballots have been the primary form of voting for years.

Voters with disabilities can access and fill out ballots electronically using assistive technology like screen readers and sip-and-puff systems — through which a person with limited mobility controls the device using their breath and a straw — to vote. Then, the ballots must be mailed in.

Sean Carlson, 42, president of the Portland Central Chapter of the National Federation of the Blind, said he has never encountered issues while voting in his home state. He and his colleagues are focused on bringing awareness to the importance of “having a say in our democracy,” he said.

“It should not be that if someone has a disability that they should be locked out of that process.”

For now, Norma Crosby, who lives outside Houston, plans to vote in person, and she will need to bring a sighted friend to make sure she maintains social distance. After all, she can’t see whether other people are wearing masks.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family 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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When Tiffany Qiu heard how much her surgery was going to cost her, she was sure the hospital’s financial department had made a mistake. Qiu, who already knew from a breast cancer scare earlier that year that her plan required a 30% coinsurance payment on operations, pressed the person on the phone several times to make sure she had heard correctly: Her coinsurance payment would be only 20% if she had the procedure at Palomar Medical Center in Poway, California, about 38 miles south of where Qiu lives.

“I was kind of in doubt, so I called them a second time,” said Qiu. “They gave me the exact same amount.”

Qiu had been diagnosed with uterine polyps, a benign condition that was making her periods heavier and more unpredictable. Her OB-GYN proposed removing them but said it was safe to wait. Qiu said that she asked about the possibility of doing it in the doctor’s office under local anesthesia to make the procedure cheaper, but that her doctor rebuffed her suggestion because of her preference for general anesthesia.

Because Qiu thought she was getting a deal on her usual 30% share of the bill, she decided to go ahead with the polyp removal on Nov. 5, 2019. As she sat in the waiting room filling out forms, staffers let her know she needed to pay in full before the surgery.

Unease set in. The hospital asked for the 20% coinsurance — $1,656.10 — that she had been quoted over the phone, but Qiu hadn’t been told she needed to pay on the day of the procedure. As she handed over her credit card, she confirmed one more time that this would be her total patient responsibility, barring complications.

The surgery was over in less than 30 minutes, and she walked out of the hospital with her husband, feeling perfectly fine.

Then the bill came.

Patient: Tiffany Qiu is a 49-year-old real estate agent and mother of two who lives in Temecula, California. Her family of four is covered by a Blue Shield of California policy that she and her husband purchased on the marketplace. Last year, they paid a $1,455 monthly premium, with an individual annual $1,850 deductible and an individual out-of-pocket maximum of $7,550.

Total Bill: Palomar Health billed Blue Shield $22,219.64 for the polyp removal, which the insurer negotiated down to $8,576.79. Blue Shield paid $5,769.72 and stated in an explanation of benefits document that Qiu was responsible for a $334.32 deductible and $2,472.75 coinsurance.

Because Qiu had already paid $1,873.20 on the day of surgery, the hospital billed her an additional $933.87, which meant Qiu was on the hook for the remainder of her 30% coinsurance.

These figures don’t include the fees Qiu paid for anesthesia or her doctor’s services.

Service Provider: Palomar Medical Center in Poway is one of three hospitals in the Palomar Health system. Palomar Health is a San Diego County public health care district, which means the health care facilities are nonprofit and receive property taxes as a portion of their revenue stream. The system is governed by a board of directors elected from within the district’s boundaries.

What Gives: Hospitals and surgery centers sometimes offer discounts if patients are uninsured and able to pay with cash or a credit card. Physicians may even offer discounts on a patient’s share of the costs if they know the patient is unemployed or has fallen on hard times. But regularly offering discounts to attract patients is not common, and could even be fraudulent if the patients are insured through Medicare, said Paul Ginsburg, director of the USC-Brookings Schaeffer Initiative for Health Policy.

In Qiu’s case, the hospital seemed to be offering a discount on the insurer’s normally required coinsurance.

“The hospital would be in breach of their contract with the insurance if they did not bill her for that amount,” said Martine Brousse, a California-based patient advocate and medical billing consultant for AdvimedPRO. “She owes what the insurance has calculated, and the facility has every right to demand payment.”

Copayments and coinsurance exist, in theory, so patients have “skin in the game.” They have to pay a clearly defined portion of the cost of their care, according to their policy, so they will shop around and use medical care judiciously (though many health experts say coinsurance amounts have gotten so high that many cannot afford them).

Resolution: If she hadn’t been quoted 20%, Qiu said, she would have shopped for a better deal. She flies to China often to visit her mother and was open to getting the surgery done there.

Qiu called the hospital to ask why she was being billed a second time, despite the lack of complications during the surgery. She remembers the back-and-forth over the remaining bill was exhausting, especially because it happened over the holidays.

“I got tired and said, ‘I don’t want to play this game anymore,’” Qiu recalled. “‘If you want to send it to collections, you can do it, but I’m not going to pay for it.’”

The bill landed at a collection agency called IC System. In a May 23 phone call, Qiu said, a representative offered to slash the remaining bill by 25% if she would just pay that day.

But Qiu refused, though she could easily afford to pay. She’s undaunted by the risk the unpaid bill poses to her credit score, preferring instead to fight the hospital on behalf of other patients who may not have the time or luxury to persist.

The experience left her feeling as if the hospital offered her a fake discount to reel in her business.

“I double-checked and tripled-checked with them,” Qiu said. “They have financial departments that should be verifying this with my insurance company.”

Another thing to note is how much the hospital billed Qiu for a simple outpatient procedure: $22,219.64. That amount is “totally laughable,” said Dr. Merrit Quarum, founder of WellRithms, a company that works with self-funded employers and other clients to make sense of complex medical claims.

Not only is the charge far out of line with what that procedure typically costs in that region (around $5,500), but Qiu is now stuck paying a larger amount as her share under the terms of her insurance. This is how those “sticker prices” that few people pay still drive up costs for individuals.

After a reporter’s call, Palomar Health looked back at phone records, confirmed Qiu’s version of events and said a hospital staffer had made a mistake by quoting her a 20% cost-sharing obligation. That percentage then got automatically put into her patient notes and was on the bill of estimated costs she signed and paid on the day of surgery, even though it was incorrect.

They apologized for giving the mistaken impression that Qiu was getting a discount. Staff members are not authorized to offer discounts when providing estimates, said Derryl Acosta, a spokesman for Palomar Health.

Acosta also pointed out other communication breakdowns, like dropping the complaint Qiu phoned in after she received the second bill in late November. Her issue did not get put into the standard customer complaint process, which would have elevated the problem and triggered an investigation into the phone records. That’s why Qiu’s bill was sent to the collection agency.

“We definitely admit that the call should have been handled differently,” Acosta said. “We now have a new call center that we believe will handle this type of call better.”

Because Palomar Health was able to see in their phone records that a staffer had confirmed the erroneous 20% coinsurance amount to Qiu, the health system will change her bill to reflect what she was promised. Qiu will get a statement in the mail saying she has a zero balance, Acosta said.

The Takeaway: Multiple medical billing advocates who reviewed Qiu’s case praised her for her tenacity in calling the hospital financial department twice before the procedure. But as she herself acknowledged, most people don’t have the time or spine to fight.

To avoid such situations, experts advised, patients should check in with their insurer about the discounts offered, as hospital staffers may be poorly trained or ill informed.

If a patient hears conflicting information about charges before a procedure, they need to approach their insurer to confirm the details of their own policy, said Brousse, the patient advocate.

The simple fact that a hospital staffer misinformed a patient isn’t a legal reason to force a hospital to lower a bill, Brousse said.

Also, get promises in writing — before the day of surgery. Make sure the offer is explicit about which services are included and what might count as a complication. Ask whether you’ll have to pay upfront.

Initial estimated bills can be full of asterisks and “weasel words,” said Akshay Gupta, co-founder of CoPatient, a medical bill review and patient advocacy company.

“Even though she tried to be diligent, obviously she still didn’t know that she would need to get something that was legally enforceable,” said Gupta.

Dan Weissmann, host of the podcast “An Arm and a Leg,” reported the radio interview of this story. Joe Neel of NPR produced the interview with KHN Editor-in-Chief Elisabeth Rosenthal on “Morning Edition.”

Bill of the Month is a crowdsourced investigation by KHN and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family 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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If President Donald Trump wins reelection next week, it seems unlikely he will unveil the health plan he’s been promising since before his election in 2016. Still, other aspects of health care could be featured in his second-term agenda.

Not having a replacement plan for the Affordable Care Act may be just fine with many of his supporters and conservatives. Most Republicans don’t want the federal government to remake the nation’s health system, said Grace-Marie Turner, of the conservative Galen Institute. “It’s a different philosophy from Democrats, who think it needs to be a big program,” she said. “Conservatives, we think of it in a more targeted way.”

Trump, of course, repeatedly promises something big. “We will have Healthcare which is FAR BETTER than ObamaCare, at a FAR LOWER COST – BIG PREMIUM REDUCTION,” he tweeted Oct. 12 — hardly the first time he’s made a similar promise. “PEOPLE WITH PRE EXISTING CONDITIONS WILL BE PROTECTED AT AN EVEN HIGHER LEVEL THAN NOW. HIGHLY UNPOPULAR AND UNFAIR INDIVIDUAL MANDATE ALREADY TERMINATED. YOU’RE WELCOME!”

But Trump needs a contingency plan if the Supreme Court accepts his argument that the ACA should be overturned. The justices are scheduled to hear the case the week after Election Day. Administration health officials have pledged to have an alternative if the high court does as they ask. But they have refused to publicly share any details.

In September, Trump unveiled a package of health care proposals at a speech in North Carolina. The “America First Healthcare Plan” is less than an actual plan, though. It’s a vague set of claims about things that have not happened yet — like bringing down prescription drug prices — along with a laundry list of some of his administration’s lesser accomplishments on health issues, such as the initiative to help Americans with severe kidney disease and efforts to improve the availability of health care in rural areas.

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As part of that overall health plan, Trump issued an executive order declaring “it has been and will continue to be the policy of the United States … to ensure that Americans with pre-existing conditions can obtain the insurance of their choice at affordable rates.” But there is nothing in the order — or in the broader outline — to ensure that would be the case if the ACA were struck down. It would take congressional action to guarantee that.

The current court controversy over the ACA arose because Congress in its 2017 tax bill eliminated the financial penalty for not having health insurance. But Congress didn’t have the votes to get rid of the mandate itself under the rules for the tax bill. Republican state officials then sued, arguing that since the Supreme Court had once upheld the ACA’s mandate, calling it a tax, once the penalty was gone, the law should also be invalidated.

Trump frequently heralds his actions, erroneously saying he killed the mandate and arguing that he got rid of the most detested part of the law.

“He likes to use words, but I don’t think there’s been a substantive policy yet,” said Len Nichols, a health policy professor at George Mason University. “I have no clue what he would do” in a second term “other than trying to repeal the ACA.”

One thing Trump accomplished in his first term is a set of potentially far-reaching regulatory actions, many of which have been challenged in federal courts. Those include allowing states to implement work requirements for people who receive Medicaid health benefits and requiring hospitals and other health providers to make their negotiated prices available to the public.

Legal analysts have doubted the administration’s authority to implement many changes Trump has proposed. But considering Trump has appointed hundreds of federal judges, including Supreme Court justices, the legal landscape may be changing and more of those proposals could be allowed to proceed.

Still, Trump faces uphill battles on some of his preferred health initiatives, even if Republicans control Congress.

For example, said Dan Mendelson of the consulting group Avalere Health, “I would expect that if he’s reelected there would be a drug pricing agenda he continues to push.” Among his proposals is having Medicare pay for drugs based on what the medicines sell for in countries that negotiate prices. That would be complicated, Mendelson said, by the fact that “the broader Republican Party doesn’t want to move to a regulatory model in this country.”

But the Galen Institute’s Turner said not to discount the changes Trump has made, such as allowing broader sales of short-term health plans that are less expensive but offer fewer benefits than ACA plans. She said to expect actions in a similar vein in a second term. “He really has done a lot, using his executive authority, based on trying to make markets work better and give people more choice,” she said. “They are strategic, targeted approaches to specific problems.”

He’ll certainly have a specific problem if the ACA is struck down. Americans losing their insurance won’t want to wait to find out if he has a plan.

HealthBent, a regular feature of Kaiser Health News, offers insight and analysis of policies and politics from KHN’s chief Washington correspondent, Julie Rovner, who has covered health care for more than 30 years.