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