Tag: Diagnosis: Debt

Biden Administration Advances Plan To Remove Medical Debt From Credit Scores

Americans would no longer have to worry about medical debts dragging down their credit scores under federal regulations proposed Tuesday by the Consumer Financial Protection Bureau.

If enacted, the rules would dramatically expand protections for tens of millions of Americans burdened by medical bills they can’t afford.

The regulations would also fulfill a pledge by the Biden administration to address the scourge of health care debt, a uniquely American problem that touches an estimated 100 million people, forcing many to make sacrifices such as limiting food, clothing, and other essentials.

“No one should be denied access to economic opportunity simply because they experienced a medical emergency,” Vice President Kamala Harris said Tuesday.

The administration further called on states to expand efforts to restrict debt collection by hospitals and to make hospitals provide more charity care to low-income patients, a step that could prevent more Americans from ending up with medical debt.

And Harris urged state and local governments to continue to buy up medical debt and retire it, a strategy that has become increasingly popular nationwide.

Credit reporting, a threat traditionally used by medical providers and debt collectors to induce patients to pay their bills, is the most common collection tactic used by hospitals, a KFF Health News analysis has shown.

Although a single unpaid bill on a credit report may not hugely affect some people, the impact can be devastating for those with large health care debts.

There is growing evidence, for example, that credit scores depressed by medical debt can threaten people’s access to housing and fuel homelessness. People with low credit scores can also have problems getting a loan or can be forced to borrow at higher interest rates.

“We’ve heard stories of individuals who couldn’t get jobs because their medical debt was impacting their credit score and they had low credit,” said Mona Shah, a senior director at Community Catalyst, a nonprofit that’s pushed for expanded medical debt protections for patients.

Shah said the proposed regulations would have a major impact on patients’ financial security and health. “This is a really big deal,” she said.

Administration officials said they plan to review public comments about their proposal through the rest of this year and hope to issue a final rule early next year.

CFPB researchers have found that medical debt — unlike other kinds of debt — does not accurately predict a consumer’s creditworthiness, calling into question how useful it is on a credit report.

The three largest credit agencies — Equifax, Experian, and TransUnion — said they would stop including some medical debt on credit reports as of last year. The excluded debts included paid-off bills and those less than $500.

Those moves have substantially reduced the number of people with medical debt on their credit reports, government data shows. But the agencies’ voluntary actions left out many patients with bigger medical bills on their credit reports.

A recent CFPB report found that 15 million people still have such bills on their credit reports, despite the voluntary changes. Many of these people live in low-income communities in the South, according to the report.

The proposed rules would not only bar future medical bills from appearing on credit reports; they would also remove current medical debts, according to administration officials.

Officials said the banned debt would include not only medical bills but also dental bills, a major source of Americans’ health care debt.

Even though the debts would not appear on credit scores, patients will still owe them. That means that hospitals, physicians, and other providers could still use other collection tactics to try to get patients to pay, including using the courts.

Patients who used credit cards to pay medical bills — including medical credit cards such as CareCredit — will also continue to see those debts on their credit scores as they would not be covered by the proposed regulation.

Hospital leaders and representatives of the debt collection industry have warned that restricting credit reporting may have unintended consequences, such as prompting more hospitals and physicians to require upfront payment before delivering care.

But consumer and patient advocates continue to call for more action. The National Consumer Law Center, Community Catalyst, and about 50 other groups last year sent letters to the CFPB and IRS urging stronger federal action to rein in hospital debt collection.

State leaders also have taken steps to expand consumer protections. In recent months, a growing number of states, led by Colorado and New York, have enacted legislation prohibiting medical debt from being included on residents’ credit reports or factored into their credit scores. Other states, including California, are considering similar measures.

Many groups are also urging the federal government to bar tax-exempt hospitals from selling patient debt to debt-buying companies or denying medical care to people with past-due bills, practices that remain widespread across the U.S., KFF Health News found.

About This Project

“Diagnosis: Debt” is a reporting partnership between KFF Health News and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on original polling by KFF, court records, federal data on hospital finances, contracts obtained through public records requests, data on international health systems, and a yearlong investigation into the financial assistance and collection policies of more than 500 hospitals across the country. 

Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status for KFF Health News to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses. And the CED Project, a Denver nonprofit, worked with KFF Health News on a survey of its clients to explore links between medical debt and housing instability. 

KFF Health News journalists worked with KFF public opinion researchers to design and analyze the “KFF Health Care Debt Survey.” The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Reporters from KFF Health News and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

Kids’ Mental Health Care Leaves Parents in Debt and in the Shadows

Rachel and her husband adopted Marcus out of Guatemalan foster care as a 7-month-old infant and brought him home to Lansing, Michigan. With a round face framed by a full head of dark hair, Marcus was giggly and verbal — learning names of sea animals off flashcards, impressing other adults.

But in preschool, Marcus began resisting school, throwing himself on the ground, or pretending to be sick — refusals that got more intense and difficult to deal with. His parents sought therapy for him. Rachel and her husband had some savings for retirement, college, and emergencies; at first, the cost of Marcus’ therapy was not an issue. “We didn’t realize where it was going,” Rachel said.

Today, Marcus is 15 and has a younger sibling. His parents have depleted their savings and gone into debt to pay for treatments for his severe depression, anxiety, and mood disorders. Frequently agitated and increasingly violent, Marcus could not attend a regular school. Over the years, he’s needed weekly therapy, hospitalization, and specialized schooling — all of which has cost tens of thousands of dollars a month.

He required lots of medical and mental health appointments that were often many miles from the family’s home. Rachel ultimately quit her real estate broker’s job to care for her son, and with that the family took another financial hit. With no good treatment options within hours of where they live, Marcus is now in residential care out of state that specializes in therapy for children with conditions like his. That’s helped modulate his behavior, but also costs $12,500 a month.

“All of our savings is gone,” said Rachel, who spoke on condition of anonymity to protect her son’s privacy. She and her husband have taken out a second mortgage and borrowed against their retirement accounts.

“How are we going to send our kids to school?” she said. “How are we going to recover from this? I don’t know.” Just surviving the string of crises is all-consuming. “Those thoughts in your mind — there’s no space for that when you are just trying to keep your child alive.”

Untold numbers of families like Rachel’s are dealing with myriad challenges finding and paying for mental health care, and then ending up in debt. There are too few therapists and psychologists in the U.S. — and fewer still who accept insurance. That compounds the financial toll on families.

Tabulating the impact isn’t easy. Many do what Rachel did: They refinance their houses, drain college savings, or borrow from family. But that kind of borrowing often isn’t included in estimates of medical debt. As a result, it’s hard to know how much families are paying out of their pockets for mental health treatment.

A recent KFF poll designed to measure the many ways people borrow to pay medical bills found that about 100 million Americans have some kind of health care debt, and 20% of those owe money for mental health services.

Those who can’t afford to borrow sometimes try to get coverage for their children under public insurance like Medicaid, which sometimes means reducing their income to qualify.

When Even Medicaid Isn’t a Safety Net

After her workplace health insurance denied coverage for her 9-year-old daughter, Colleen O’Donnell, a single mom from Providence, Rhode Island, stopped working so her income would fall below Medicaid’s limit. O’Donnell, a registered nurse, could have made lots of bonus pay caring for covid patients. Instead, she said, she needed to stay home to care for her daughter, who suffers from, among other things, disruptive mood dysregulation disorder — a condition that goes far beyond normal tween moodiness. Treatment didn’t require just medication or visits to the doctor or hospital; the girl also needed wraparound therapy that included in-home care. The child’s unpredictable moods and violent tantrums made it impossible to send her to school, or for her mother to hire a sitter for her.

“Qualifying for Medicaid means essentially you’re living right around the poverty level, which means I’m not generating any sort of wealth, I’m not saving for retirement or anything like that,” said O’Donnell. She took on a second mortgage for $22,000. She estimates at least $60,000 in lost wages a year. But staying home with her child was still worth it, she said.

Some desperate families go to even more extreme lengths to get mental health care covered by Medicaid. Some leave their children at hospitals, relinquishing custody so they become wards of the state. Others simply forgo care altogether.

So, how much is this costing families across America? And how many are forgoing care? It’s hard to know.

Lack of Data Keeps Struggling Families in the Shadows

“We don’t have real data,” said Patrick Kennedy, a former member of Congress and founder of the Kennedy Forum, a mental health advocacy group. Across the board, he said, there’s a lamentable lack of data when it comes to mental illness. “We don’t track this. We have a hodgepodge of reporting that’s not standardized.”

That lack of data keeps many people in the shadows, Kennedy said. It makes it hard to hold insurers accountable for legal obligations they have to pay for mental health care, or to argue for specific policy changes from regulators that oversee them. Kennedy said that problem should not fall on the shoulders of the many families who are too busy fighting to survive.

“If you’re a family or someone who has one of these illnesses, you don’t have the capacity for self-advocacy, right? And shame still factors in, in a large way,” he said.

Rachel, the mother in Lansing, estimates Marcus’ treatment costs topped a quarter-million dollars over the past two years alone. Nearly all that, Rachel said, was driven by care their insurance company declined to cover.

Over the years, Marcus underwent numerous neuropsychological tests, checking everything from intelligence and personality to trauma and motor skills to gauge the gaps in how he perceives the world. Each test cost several thousand dollars. Weekly therapy cost $120. Special schools, including a wilderness therapy program, cost thousands of dollars a month, and Rachel said insurance covered almost none of it.

The insurer cited various reasons: The wilderness therapy, even if it worked, was deemed too experimental. Other treatments weren’t in-network. Even when Marcus became increasingly violent and a danger to himself and others, insurance agents repeatedly told Rachel that various types of inpatient or residential treatment programs and specialists recommended to her weren’t covered because they were “not medically necessary” or would require reauthorization within days.

Meanwhile, Marcus’ problems at home were escalating. “There were times that I hid,” Rachel said, voice breaking. “I found hiding places so that my kid couldn’t find me. He would hurt me. He would attack me, throw things at me, push me.”

Faced with this do-or-die situation, Rachel and her husband decided to pay the costs of the care themselves and fight it out with insurance and lawyers later. For the past year, they’ve spent $150,000 to send Marcus to his out-of-state school.

What About ‘Mental Health Parity’ in Reimbursement?

That growing reliance on out-of-network care for mental health treatment is a national trend, despite various federal and state laws requiring insurers to cover services like addiction treatment on par with CT scans, surgeries, or cancer treatments. A 2019 report commissioned by the Mental Health Treatment and Research Institute found those disparities getting markedly worse, especially among children, between 2013 and 2017 — effectively forcing more patients to seek behavioral health care outside their insurer’s network.

AHIP, a health insurer trade group, said the industry complies with existing laws and is working to expand options to meet increased demand for mental health care.

“Given the workforce and capacity shortages in [mental health and substance use disorder] care, it’s important that patients receive the appropriate level of care, helping to preserve higher levels of care for those who need it most,” David Allen, an AHIP spokesperson, said in an emailed statement. He said insurers are taking measures like adding new providers to their networks, and adding telehealth options to expand their reach into places like schools and family physicians’ offices. But, he said, not every kind of care should qualify for coverage: “It is important to make sure that people receive high-quality care based on scientific evidence.”

Regulators Have Been Slow to Police Insurers

But Deborah Steinberg, a health policy lawyer at the Legal Action Center, which advocates for consumers, said insurers improperly deny coverage for appropriate treatments far too often. Few people know how to determine that, and end up paying the bill.

“They are actually not necessarily bills [patients and families] should be paying, because a lot of the time these are illegal practices,” Steinberg said. “There are so many complicated laws here that people don’t understand. And when people pay the bills or take it out as credit card debt, they’re not challenging those practices.”

Nor have regulators been aggressive in policing insurers, or fining them for violations.

That’s something Ali Khawar pledges to change. Khawar, an acting assistant secretary at the Labor Department’s Employee Benefits Security Administration, which oversees private insurers, said his agency’s report to Congress earlier this year showed high levels of violations. The report also showed the insurance industry failing to keep adequate data on their compliance with parity laws.

But, Khawar said, coverage of mental health care is a problem he hears about continually, and the fact that so many families are struggling has made this a top priority for his agency. “There is a level of attention, a level of resources being put to these issues that is kind of unprecedented,” he said.

Often, it falls to attorneys general to enforce insurance rules, and the willingness and resources available to do so varies by state.

In Michigan, where attorney J.J. Conway practices, the state has not been active in investigating the industry, he said. So families must seek recourse on their own, he said, if they want to dispute denial of coverage with their insurer. Conway, who represents Rachel’s family and many other parents, said he’s seeing the biggest surge in mental health disputes in his 25 years as a lawyer.

Conway said there’s a strange silver lining in the sheer number of families now struggling to get mental health coverage. The cases are so numerous, he said, he hopes collectively they’ll eventually force a change.

About This Project

“Diagnosis: Debt” is a reporting partnership between KHN and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on the “KFF Health Care Debt Survey,” a poll designed and analyzed by public opinion researchers at KFF in collaboration with KHN journalists and editors. The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses.

Reporters from KHN and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

Readers and Tweeters Take a Close Look at Eye Care Traps and White Mulberry Leaf

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.

— Catherine Arnst, New York City

Seeing Eye Care for What It Is

Thank you for telling the story of EyeCare Partners and others (Patients for Profit: “Private Equity Sees the Billions in Eye Care as Firms Target High-Profit Procedures,” Sept. 19. I went to EyeCare once. All I will say is I will never go back. I also went to a private-practice ophthalmologist. He should be ashamed of himself.

Unfortunately, doctors themselves are ruining their profession’s reputation. Please continue your stories to help us get at least halfway-decent care. I have no hope of it ever returning to good care.

Your story brings out one old-time fact: Patients need to know that an overly busy doctor does not necessarily mean a “good” doctor. Thank you again.

— Hazel M. White, St. Louis

— Julie Doll, Garden City, Kansas

American Herbal Products Association Weighs In on White Mulberry Leaf

The article written by Samantha Young on the untimely death of Lori McClintock, the wife of California congressman Tom McClintock, used this tragic event to challenge the robust regulation of dietary supplements by the federal government, despite there being no information in the report showing that Lori McClintock consumed white mulberry leaf as a dietary supplement (“Congressman’s Wife Died After Taking Herbal Remedy Marketed for Diabetes and Weight Loss,” Aug. 24).

White mulberry leaf is normally administered for therapeutic use in the form of a tea or powdered extract, and the leaf is also used as a food ingredient. The two most comprehensive and authoritative English language compendia of traditional Chinese medicine — “Chinese Herbal Medicine” and “Chinese Medical Herbology and Pharmacology” — do not list any significant cautions or contraindications associated with mulberry leaf use.

Most clinical trials studying white mulberry leaf report no adverse events, although some placebo-controlled studies have reported minor gastrointestinal issues — such as an upset stomach. A pooled analysis of these studies found no statistically significant difference in adverse events between participants receiving mulberry leaf and a placebo.

The scientific consensus on the safety of white mulberry leaf is also reflected in the “Botanical Safety Handbook,” maintained by the American Herbal Products Association and subject to strict standards of expert review. The contributing experts placed white mulberry leaf in the reference’s safest classification based on an extensive review of the scientific literature. This classification process included a systematic literature review covering acute, short-term, and sub-chronic toxicity studies as well as in vitro, human, and animal research. The reviewers also searched for, and did not identify, any case reports in which white mulberry leaf produced a suspected drug or dietary supplement interaction.

Lori McClintock’s death certificate and the accompanying coroner’s report identify the cause of death to be dehydration due to gastroenteritis due to adverse effects of white mulberry leaf ingestion. The coroner’s report states that “a partial plant leaf” was present in the stomach and that “portions of tablets and capsules [were not] discerned in the stomach.” A University of California-Davis botanist identified the material as white mulberry leaf and stated, “White mulberry is not toxic.”

While the death certificate declares “an autopsy with toxicology testing confirmed the cause of death,” there is no toxicology test for white mulberry, and none of the toxicology testing performed for other unrelated drugs or common toxins revealed anything linking the death to white mulberry.

The coroner’s report did not explain whether or not there was evidence of any specific product(s) the deceased might have been taking, and ultimately how a conclusion was drawn to implicate white mulberry. Without this information, it is not possible to corroborate the coroner’s findings and conclusions.

Moreover, nearly half of the article is presented as a criticism of the robust federal regulation of dietary supplements, claiming that “McClintock’s death underscores the risks of the vast, booming market of dietary supplements and herbal remedies.” The article reports that two cases of people “sickened by mulberry supplements” have been reported to the FDA since 2004 and that “[a]t least one of those cases led to hospitalization.” AHPA has reviewed the publicly available records of these two cases and notes the following significant details omitted from the article:

  • A 77-year-old woman was hospitalized in July 2008 with conditions described as including diabetes mellitus, gallbladder disorder, hypotension, myocardial infarction, renal disorder, and thrombosis; whether these conditions were preexisting is not clear in the currently available public record. This record identifies 31 dietary supplements (including a mulberry leaf product) associated with this case.
  • In the other case, a 63-year-old woman was reported as taking four products — goji berry; a combination of cinnamon extract, Gymnema sylvestre leaf, and mulberry leaf; a multivitamin; and fish oil. She was diagnosed with hypoesthesia (numbness) and was hospitalized in December 2009.

AHPA has obtained these two adverse event reports through a Freedom of Information Act request. The conclusion drawn by the KHN article that either of these reports represents an individual who was “sickened by mulberry supplements” is simply not substantiated by the FDA’s database.

Given that consumption of white mulberry leaf was unlikely to have been a direct or indirect cause of Lori McClintock’s death, the Sacramento County Coroner’s Office should seriously consider conducting additional investigations and, as appropriate, revising the death certificate.

— Michael McGuffin, president, American Herbal Products Association, Silver Spring, Maryland

— Keith Vance, Gaithersburg, Maryland

Two Ways to Cut Medical Debt

Your recent article “Upended: How Medical Debt Changed Their Lives” (Aug. 18) was very powerful and informative. Thank you very much for your efforts.

There are two reforms that would greatly relieve the financial suffering of your subjects:

1. We need a law stating that if a health insurance claim is denied, and if the patient was not aware this could happen, then the patient is not liable for the charges. Medicare has had this rule for decades. With such a rule, the providers and insurers can fight out their disputes and the patient will not be harmed.

2. Patients with large medical debts should have access to a low-cost, federally funded bankruptcy attorney. Some of your subjects seem not to have been aware of the bankruptcy option. Others made tragic mistakes like cashing in retirement accounts, when that is unnecessary in bankruptcy. Most hospitals are ready to negotiate and reduce large bills, if a halfway-aggressive attorney or consultant approaches them on a timely basis. Your subjects were, sadly, isolated and unadvised.

Thanks again for your work.

— Bob Hertz, St. Paul, Minnesota

— Lee Moss, Salt Lake City

Homelessness and Social ‘In’-Security

I read your story on the Supplemental Security Income program and the woman in the homeless shelter (“A Disability Program Promised to Lift People From Poverty. Instead, It Left Many Homeless,” Sept. 16). I lived in homeless shelters in St. Louis and Mobile, Alabama, and there is something you left out of your article: If you live in a homeless shelter, the Social Security Administration may lower your SSI benefit even more because they figure you’re not paying rent so you’re not entitled to full benefits. It did that to me when I was in Mobile. It also happened to a friend of mine in St. Louis. The agency reduced hers by $200. That’s exactly the time we need our entire benefits, so we can find a place.

— Lauralee Wiltsie, Bay Minette, Alabama

— Dennis Culhane, Philadelphia

Seniors in Need of a Lifeline

I’m a senior living in affordable housing and am so sad. Not just because I can’t afford to take care of my personal needs the way I used to, but because I feel as if no one cares about seniors anymore. I read in one of your stories it’s too expensive to stay alive (Navigating Aging: “‘It’s Becoming Too Expensive to Live’: Anxious Older Adults Try to Cope With Limited Budgets,” Sept. 7). During the height of the pandemic, people were so kind and I did have enough food to eat. Now that things are almost back to normal, people have started acting mean again. They just don’t care about us seniors. Help us.

— Barbara Little, Atlanta

— Ramsey Alwin, Washington, D.C.

Only One Side of the Story?

I listened to Dr. Elisabeth Rosenthal’s comments on CBS News this morning (Bill of the Month: “Watch: Crashing Into Surprise Ambulance Bills,” Aug. 24).

First, her comments about coverage for ground ambulances being excluded from the federal No Surprises Act, which purportedly guards against surprise medical bills. She said: “There’s some speculation that ground ambulances are revenue generators for many local fire departments.” While that may be true in rare cases, most emergency medical services that are nonprofit barely get by. Why? Because insurance companies do not pay ambulances correctly.

Have a heart attack and EMS might bill you $1,100. Insurance companies pay $400. Medicare pays around $300 for the same call. Medicaid pays $200 for the same call.

Let me put it another way: You own a restaurant. You offer a dinner for two for $100. You bill the person’s dinner insurance. It pays $40. It costs the restaurant $60 to put the meal together, including staff pay and utilities. You just lost $20 and made nothing to put back into the business. How long are you going to stay in business?

Ambulance agencies do not join insurance companies’ networks because they are offered a lower pay rate to be in-network — so why should we join?

Let me put it another way: The fire department is run by the municipality and the taxpayer pays for it. You pay approximately $600 per household in taxes for fire protection each year. So over 10 years, many taxpayers have paid $6,000 for fire protection they never used. But most municipalities do not fund EMS.

If you’re going to treat this story fairly, maybe have all the facts about EMS — not just one side of it.

And as for surprise billing, you called 911 to get a ground ambulance to come. How is the bill a surprise?

— Anthony Tucci, West Lawn, Pennsylvania

— Jon Wallner, Montgomery County, Pennsylvania

This article was very one-sided. Nonprofit ambulance services are being lumped into this mix unfairly. In addition, some states have enacted their own ground portion of the federal No Surprises Act. I have seen commercial insurance companies sticking the patient with a greater responsibility for the cost of emergency services than before the No Surprises Act and yet the insurance companies themselves now reimburse at only around 67%, when they used to pay nearly 100% of claimed charges.

In addition, more ambulance companies would join commercial insurance companies’ networks if they received fair, timely reimbursement. There are so many ground ambulance companies going out of business due to insurance company games, inappropriate denials, and lack of payment.

— Jennifer Costello, Columbus, Ohio

— Kathryn A. Phillips, San Francisco

If It’s Broken, Fix It

I’m a family practice physician. Spinning off of your Bill of the Month series, I think it would be very beneficial to publish more stories on what health care and costs look like abroad. Hospitals and providers are simply functioning within a broken system. Of course, costs are astronomical when many of the mainstays on the Fortune 500 list are insurance companies. I think people (i.e., voters) need to hear more about what health care would look like if Medicare and Medicaid were the only payers. The broken system exists, and people need to know how to work through that, but people also need to hear that there are other equally effective ways of delivering health care.

— Dr. Justin Riederer, Asheville, North Carolina

— Bill Kimler, Greenwood, South Carolina

An ‘Inherently Abusive and Ineffective’ Treatment for Autism

As a member of the autistic community (and a trained journalist myself), I am deeply disturbed by the recent article “‘So Rudderless’: A Couple’s Quest for Autism Treatment for Their Son Hits Repeated Obstacles” (July 21), by Michelle Andrews.

This article appears to be a follow-up to an article written by Andy Miller and Jenny Gold and published on March 30. Both articles uncritically promote applied behavior analysis (ABA) and falsely portray families unable to access ABA as victims of the pandemic and/or health care bureaucracy.

You should be aware that both articles taint KHN’s reputation as a reliable source for medical/health care news and information and do not meet even basic journalistic standards.

ABA is an inherently abusive and ineffective pseudoscience designed not to enhance the lives of autistic people, but rather to force us to suppress our autistic traits and perform neurotypical ones. Among the critics are survivors of ABA (Julia Bascom of the Autistic Self Advocacy Network and Amy Sequenzia of the Autistic Women & Nonbinary Network being two prominent examples). Further, for the past several years, the Department of Defense Office of Inspector General has found that ABA is largely ineffective, even by its own standards. None of this was mentioned in either article.

Your articles also did not mention the origins of ABA, including the fact that the practice was pioneered by O. Ivar Lovaas, the same man who helped pioneer gay/trans conversion therapy and was infamous for “treating” autistic children with electric shocks and corporal punishment. They also did not mention critics’ specific concerns about currently practiced ABA, including that it teaches autistic individuals that they have no right to say no and that, if they do say no, they’ll be physically and verbally bulldozed into compliance.

I also did not see any reference in your articles to the 2018 survey conducted by autistic researcher Henny Kupferstein, which found that autistic individuals exposed to ABA were 86% more likely to exhibit symptoms consistent with post-traumatic stress disorder.

The few points I’ve mentioned above barely scratch the surface regarding the controversy surrounding ABA. However, your reporters chose not to reach out to any prominent critics of ABA for a quote or to cite any of their specific concerns.

Further, your reporters didn’t reach out to a single autistic source, despite both articles being about the autistic community. Despite how the autistic community is infantilized and portrayed as incompetent by various prominent “charities,” like Autism Speaks, our community as a whole is fully capable of stating our opinions and engaging in self-determination.

I would appreciate a response to this letter. Hopefully, you realize the seriousness of this matter and intend to publish a follow-up article examining ABA’s rampant abuses.

— Matthew Zeidman, New Hyde Park, New York

— The Children and Youth With Special Health Care Needs National Research Network, Denver

Readers and Tweeters Place Value on Community Services and Life-Sustaining 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.

A Cure for Ambulance Sticker Shock

This is a comment about your recent story on ambulance surprise bills (“The Ambulance Chased One Patient Into Collections,” July 27). In the story, three siblings were taken from an accident in three separate ambulances, then charged vastly different rates.

In Oklahoma City, we pay $3.65 a month on our water bills to fund EMSA (Emergency Medical Services Authority), a public ambulance service. If you need a ride in one, that premium covers it for anyone in your household. The payment is opt-out, so most everyone pays it. Non-water customers (like those in apartments whose rent covers utilities) can buy in, too. It might still be expensive for out-of-town visitors, however.

The EMSA premium works. You should report on it.

— Phil Crow, Oklahoma City, Oklahoma

— Dr. Richard Vaughn, St. Louis

Tough Lesson on Predatory Lenders

This essay (“The Debt Crisis That Sick Americans Can’t Avoid,” Aug. 2) compares student loan debt to medical debt but doesn’t seem to grasp how predatory the student loan industry is. For example, I have paid back close to $70,000 (more than I borrowed) and still owe $282,000.

There are thousands more in the same situation. It’s why we’re pushing for relief from the uniquely predatory and exploitive student loan debt.

— Brian Galloway, Salem, Oregon

— Ellen Fink-Samnick, Burke, Virginia

Focusing on FQHCs

This article paints a grossly inaccurate picture of federally qualified health centers (FQHCs) and their work delivering life-sustaining care to 30 million Americans (“Community Health Centers’ Big Profits Raise Questions About Federal Oversight, Aug. 15).

The piece’s conclusions are based on data representing fewer than 1% of health centers. Framing an argument on a cherry-picked handful of centers out of nearly 1,400 nationwide skews the facts.

Health centers fought on the front lines of the pandemic. Fewer people were infected with, or died from, covid-19 when a health center was nearby. Such efforts came at a cost: Most centers operate on thin margins, struggling to retain staff even while battling health crises.

Financial resilience for centers is essential because federal support has never been as certain as the challenges associated with caring for low-income communities.

The centers’ financial reserves are not secreted away but are regularly reported, available for scrutiny and subjected to annual audits. In some cases, dollars go toward site expansions, staffing, or expanded services. One lesson learned from the pandemic is that centers are the “canaries in the coal mine” of public health and require funding to nimbly adapt care. Private donations have also helped health centers stay afloat, a fact barely mentioned in KHN’s reporting.

The average health center CEO salary is far less than what this reporting on outlier centers suggests. There are far more profitable jobs in health care that do not involve fighting for every dollar to care for the underserved. For health center staff, it’s about dedication, not dollars.

KHN’s reporting amplifies misconceptions about the 340B prescription program — which has provided a crucial lifeline to uninsured and underinsured Americans who otherwise struggle to afford prescriptions. By law, all savings resulting from that program must be reinvested in patient care. As a result, health centers report vastly improved health outcomes among their patients.

Accountability is also baked into the health center model. Site visits by regulators ensure that patient care and clinical data is consistent with national standards. Additionally, health centers are governed by local boards, for which patients mostly serve as the directors.

The health center model has been quietly addressing every public health crisis for more than 50 years.

When most private-practice physicians limit or do not accept Medicaid patients, roughly half of health center patients are covered by Medicaid and would, without access to health centers, likely seek costlier emergency room services. As we continue to struggle with public health threats, health centers’ efforts to test, vaccinate and treat hard-to-reach populations deserve support and investment.

The National Association for Community Health Centers will continue to stand up for our valued health care heroes. No other health system stands as a living legacy that health care can be patient-driven, effective, and trusted stewards of federal dollars. We stand by this model.

— Rachel Gonzales-Hanson, interim president and CEO of the National Association for Community Health Centers, Bethesda, Maryland

— Bijan Salehizadeh, Washington, D.C.

Mental Health for the Incarcerated: When Hands Are Tied

I am a psychologist and the director of mental health services for a medium-sized (around 800 inmates) jail in Indiana. I have been dealing with this frustrating problem for the past five years (“When Mental Illness Leads to Dropped Charges, Patients Often Go Without Stabilizing Care,” Aug. 4). We often run into this issue when police/prosecutors fail to file charges, and we’re stuck dealing with an inmate who is psychotic and homeless with no family. The local hospitals won’t take someone on an emergency detention order, or EDO, unless the individual is verbally saying they’re suicidal. With regard to the wait for a state psychiatric bed, we’re averaging four to five months now for forensic beds, and 11 months for civil commitment beds. I’ve seen inmates serve nine months or more (including time at the hospital) for a trespassing charge.

We’re often stuck in a situation in which we have to release someone who is psychotic and the hospital won’t take them. They usually have no family to help. This is extremely dangerous, especially in the winter months when it can drop below zero (all of the warming shelters in my area have closed since covid started). Sadly, the best outcome is that the patient refuses to leave the jail lobby and is arrested for trespassing and brought right back into the building.

Anyway, I wanted to say thank you for writing this article.

William Mescall, Crown Point, Indiana

— Paul R. Gormley, Boca Raton, Florida

On Psychiatric Hospitalizations and Suicide Risk

I was disappointed to see that the author of the story “Social Media Posts Criticize the 988 Suicide Hotline for Calling Police. Here’s What You Need to Know.” (Aug. 11) implied that psychiatric hospitalization causes death by suicide in the following paragraph: “Research shows suicide rates increase drastically in the months after people are discharged from psychiatric hospitals. Those who were sent involuntarily are more likely to attempt suicide than those who chose to go, and involuntary commitments can make young people less likely to disclose their suicidal feelings in the future.”

While is it true that the period after psychiatric hospitalization is a key risk period for death by suicide, there is no causal evidence to demonstrate that the hospitalization causes death by suicide. In fact, there is an important third variable that may explain this finding: Only people who are severely ill, and often at high risk for suicide, are psychiatrically hospitalized. Indeed, for me, as a licensed psychologist, involuntary psychiatric hospitalization is a last resort for people at imminent risk of death by suicide.

You may wish to read a recent meta-analysis in which the researchers synthesized data from randomized control trials, or RCTS. RCTs are the gold standard for evaluating causality because they can rule out third-variable explanations, such as severity. Their article states: “Indeed, a small number of RCTs have examined means restriction/safety programs and acute psychiatric hospitalization. Notably, these interventions produced effects that are similar to those of more commonly studied interventions.” Overall in their meta-analysis, they did not find evidence that interventions for suicidality are iatrogenic or cause increased suicidality.

— K. Jean Forney, clinical psychologist and assistant professor at Ohio University, Athens, Ohio

— Kathy Flaherty, Middletown, Connecticut

— Frank Bednarz, Chicago

Anti-Vaccine Mandate Is Not the Same as Anti-Vaccine

An important comment regarding your article “‘My Body, My Choice’: How Vaccine Foes Co-Opted the Abortion Rallying Cry” (July 6). It is purposely deceptive. You say “anti-vaccine” activists — which is incorrect. The people gathering in Los Angeles (and elsewhere across the country) are anti-forced vaccine — not necessarily “anti-vaccine,” as your article repeatedly insists. To be against being forced to submit to an experimental medicine is not the same as being against a vaccine — or those who choose to take it. You, of course know this: No medicine is right for everyone. Why are you deliberately choosing to deceive people by your careful, not-accidental choice of words?

— Kathleen German, Nashville

— Derrick Edward Jones, Seattle