Readers Curse Medical Debt and Defend Spelling Therapy

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.

Don’t Let Hospital Billing Ruin American Lives

Your recent piece “Baffling. Frustrating. Frightening. What It’s Like To Be Sued Over Medical Debt” (June 1) adds to a growing breadth of firsthand patient experiences caused by undue medical debt. These patients understand they need to pay for their care but instead are strapped with baffling medical bills and no direct way to get assistance. That’s exactly what these hospital and insurer billing practices do: make it difficult for patients to understand what they are being charged for, leaving them to navigate uncertainty and frustration while trying to determine what they actually owe.

The National Consumers League has heard from patients and their caregivers who have daunting stories. Patients shouldn’t be at the mercy of unfair hospital practices or be forced to choose between vital medical treatments and other necessities because they’re priced out — but this is happening every day. NCL polling found that medical debt has affected most U.S. adults, with nearly half incurring this debt after receiving a “surprise” bill from a hospital or provider. These bills not only risk patients’ livelihoods and upend their financial stability, but they also ruin lives. When faced with medical debt, more than half of surveyed adults said they skipped future treatments or drained their savings.

There is also a correlation between hospitals that pursue medical debt and those participating in the federal 340B drug-pricing program. The intention behind 340B is to give hospitals and other eligible providers access to discounted medications so they can help reduce costs for low-income, uninsured, or otherwise vulnerable patients. Instead, 340B hospitals pursue aggressive medical debt collection practices at higher rates than their non-340B counterparts, explicitly failing to meet their end of the deal in 340B. Making matters worse, hospitals with high shares of cancer patients continue to use some of the most aggressive medical debt collection tactics.

Hospitals, especially those with heightened responsibilities to vulnerable patients, need to have transparency and accountability if they have the privilege of getting greatly reduced prices for drugs; the intention is to pass along those discounts to patients, not hoard the discounts. This is a federal program that needs a federal solution. Congress needs to step in and rein in these predatory medical debt collection practices. Until then, patients across the country will continue to suffer.

— Sally Greenberg, CEO of the National Consumers League; Washington, D.C.

We are defending a large number of medical debt cases here in Kansas. The unusual angle for us is the large number of cases brought to court with no attorney representing the debtor; most of those cases are default judgments. When we get involved, we learn most of the cases had improper service, so the party doesn’t know they’ve been sued.

One of our cases involves a mother of two who has been sued by a billion-dollar nonprofit hospital. Her paycheck at McDonald’s was garnished. We challenged their actions, and while the judgment has been set aside, the collection case is continuing.

— Matt Keenan, executive director of Kansas Legal Services; Topeka, Kansas

Spelling It Out: For Shame

I don’t even know what to begin with. KFF Health News is on a tear trying to criticize and humiliate families and spellers who have finally found a reliable method of communication (“MAHA’s Treatments for Autism: Camel’s Milk, Stem Cell Injections — And Spelling Therapy,” June 8).

I don’t understand how the author of this piece was able to justify conflating camel’s milk and anti-vaxxers with people with whole-body apraxia being able to use the alphabet to spell out their thoughts and feelings. I find it incredibly disingenuous to lump together these unrelated topics to discredit or even bully severely disabled people and their families. And especially shameful is using hostile sources like Amy Lutz, who should know better than to try to demean parents who “subject” their children to the alphabet.

Offering a nonspeaker an alternative to silence and frustration that might otherwise lead to self-injurious and aggressive behavior is not dangerous. It’s not as if it’s some invasive, risky, or controversial treatment some parents are choosing to subject their loved ones to. It’s simply the alphabet and an alternative method of communication for individuals with whole-body apraxia. And it is real and not the imagination of pathetic families.

You are on the wrong side of history for all the wrong reasons, and, as the number of spellers and speller advocates grows, you will be ashamed and rightfully so.

— Joanne Curcio; Paramus, New Jersey

I am the father of Stone, a 20-year-old nonspeaking autistic young man who is currently carrying a 3.85 GPA in high school-level classes. Stone communicates using a keyboard, iPad, or letterboard, with support from a trained communication partner. He requires this support because of apraxia, a neurological condition that disrupts the motor pathway between thought and movement. His intelligence and his communication are not in question. His body’s ability to execute motor commands independently is the challenge, and that distinction matters enormously.

I am also the founder of Communicators for Communication Rights (C4CR) and host of The Lighter Side of the Spectrum podcast. I have spent years documenting the legal, scientific, and human case for communication access for nonspeaking individuals.

Your recent article does three things that cause real harm to the community I am part of and represent, and I want to name them directly.

First, it conflates motor-based communication with the Make America Healthy Again movement. This framing implies that letterboards and keyboard-based communication with a communication partner are a new initiative embraced primarily by parents who identify with the MAHA platform. Nothing could be further from the truth. These methods have been used and advocated for by families across the full ideological spectrum for decades. The article provides no data on how many of the families using these methods across the country are MAHA supporters. That is not a framing choice. It is a factual gap that mischaracterizes an entire population.

Second, the article focused on Elizabeth and Noah’s challenges with independent typing rather than examining what communication has actually brought to their lives. The assumption embedded in that framing, that authenticity requires independence, ignores the well-documented neurological reality of apraxia. These are not people choosing not to communicate independently. These are people whose motor systems do not reliably cooperate with their intentions. Holding them to a standard of independence that their neurology makes impossible, and then using that standard to question their communication, is the same mistake school districts make every day when they deny communication access to nonspeaking students.

Third, the article conflates motor-based communication with The Telepathy Tapes. That The Telepathy Tapes became a top podcast speaks to public interest in nonspeaking individuals and the stories told by Ky Dickens. It has nothing to do with whether nonspeaking people can communicate authentically through letterboards and keyboards. Bundling these two things together in the same piece suggests a connection that does not exist and gives ammunition to those who want to dismiss every nonspeaker’s communication as suspect.

When a credible news organization ties access to a political brand and a paranormal-focused podcast, it gives school districts a new weapon to use against nonspeaking students. The people who pay that price are not politicians. They are children sitting in classrooms without communication access right now.

— David Kaufer; Edmonds, Washington

Vexing Vaccine Research

Having read your article “A Danish Couple’s Maverick African Research Finds Its Moment in RFK Jr.’s Vaccine Policy” (May 18), my first question is: Why focus research on infants in Africa, Denmark, or minority populations in the United States rather than studying broader populations? What is the fascination with these groups and the rationale for selecting them?

I understand that vaccines may be administered at different ages in some countries due to limited availability and resources. If vaccine access is the issue, it seems that increasing immunization resources and availability would be a more direct solution.

I was born in 1961 and received the recommended childhood vaccinations of my time, on schedule. During my childhood, my family grew much of our own produce and purchased meat from local butchers and fishermen. Looking back, I do not recall autism being discussed or diagnosed as frequently as it is today. This leads me to wonder whether environmental and dietary changes deserve greater attention as potential contributing factors.

Over the decades, the food supply has changed significantly. Many processed foods now contain added sugars, corn syrup, artificial colorings, preservatives, and industrially produced oils. Modern agriculture and food production also involve pesticides, chemical treatments, and hormone use in some settings. At the same time, rates of obesity, diabetes, and autism diagnoses have increased. While correlation does not prove causation, these trends suggest that further research into environmental exposures, food production practices, and agricultural chemicals may be warranted.

For that reason, I question whether research efforts should focus primarily on vaccines as a possible explanation for autism or early childhood health outcomes. It may be equally important to investigate the food industry, farming practices, seafood production, crop treatments, and the long-term effects of environmental chemicals on children’s health.

I would encourage researchers — including Health and Human Services Secretary Robert F. Kennedy Jr., Denmark’s Christine Stabell Benn and Peter Aaby, and the Centers for Disease Control and Prevention — to pursue a broader examination of potential factors influencing autism rates and other childhood health concerns. Parents deserve research that explores all plausible causes and is conducted with transparency, scientific rigor, and respect for the communities involved.

I am also concerned about the ethical implications of conducting research in economically disadvantaged populations. Is this part of Project 2025 — or Jim Crow 2026? Any study involving infants and children should ensure informed consent, strong protections for participants, and a clear commitment to their well-being.

Ultimately, my concern comes from a desire to understand why autism diagnoses and other health challenges appear more common today than in previous generations. I hope researchers will continue to investigate all possible contributing factors and prioritize the health and welfare of children everywhere. It saddens me to think that our country is going backward.

— Foxie Clemens; Mansfield, Ohio

Tools To Survive ICU Stays — And Possibly Thrive

As a critical care nurse for 25 years, I appreciated your recent article on post-intensive care syndrome and the lasting effects of critical illness on patients and families (“For Many Patients Leaving the ICU, the Struggle Has Only Just Begun,” April 10).

What you described is something I saw repeatedly at the bedside. Patients often left the ICU with fragmented memories, vivid dreams, confusion, or little understanding of what had happened to them. The article rightly highlights the impact on patients. Equally important is the growing recognition that post-intensive care syndrome can affect families as well, known as PICS-F. They are often left carrying fear, unanswered questions, and the difficult task of trying to make sense of an overwhelming experience.

Your mention of ICU diaries as a potentially helpful tool is important. Research suggests they may help patients reconstruct their ICU experience, fill in memory gaps, and better understand what occurred during their hospitalization.

My observations led me to create a published ICU Diary for Families, designed not only to help patients piece together their ICU stay, but also to give families a place to track updates, write down questions, and organize information during a stressful and often confusing time. Later, I created a Hospital Wellness Journal for patients and families navigating hospitalization more broadly.

I created these resources because I repeatedly watched families struggling to remember physician updates and searching for some way to organize an experience that can feel deeply stressful and disorienting.

Although I no longer work at the bedside in critical care, my work continues to be shaped by what I saw there, through both my journals and artwork centered on healing and well-being.

Post-intensive care syndrome deserves broader awareness and continued attention to approaches that support not only survival, but recovery and understanding after critical illness.

— Nicole Cromwell; Carmel-by-the-Sea, California