The Sentinel

Telehealth access for low-income households is coming to an end

by Sarah Jane Tribble

California Healthline

For Cindy Westman, $30 buys a week’s worth of gas to drive to medical appointments and run errands.

It’s also how much she spent on her monthly internet bill before the federal Affordable Connectivity Program stepped in and covered her payments.

“When you have low income and you are living on disability and your daughter’s disabled, every dollar counts,” said Westman, who lives in rural Illinois.

Over 23 million people are enrolled in Congress' 2021 discount program providing online/telephone healthcare services. That could all end this month or in May.

Photo: Tech Journal/Pixabay

More than 23 million low-income households — urban, suburban, rural, and tribal — are enrolled in the federal discount program Congress created in 2021 to bridge the nation’s digital connectivity gap. The program has provided $30 monthly subsidies for internet bills or $75 discounts in tribal and high-cost areas.

But the program is expected to run out of money in April or May, according to the Federal Communications Commission. In January, FCC Chairwoman Jessica Rosenworcel asked Congress to allocate $6 billion to keep the program running until the end of 2024. She said the subsidy gives Americans the “internet service they need to fully participate in modern life.”

The importance of high-speed internet was seared into the American psyche by scenes of children sitting in parking lots and outside fast-food restaurants to attend school online during the covid-19 pandemic. During that same period, health care providers and patients like Westman say, being connected also became a vital part of today’s health care delivery system.

Westman said her internet connection has become so important to her access to health care she would sell “anything that I own” to stay connected.

Westman, 43, lives in the small town of Eureka, Illinois, and has been diagnosed with genetic and immune system disorders. Her 12-year-old daughter has cerebral palsy and autism.

She steered the $30 saved on her internet toward taking care of her daughter, paying for things such as driving 30 minutes west to Peoria, Illinois, for two physical therapy appointments each week. And with an internet connection, Westman can access online medical records, and whenever possible she uses telehealth appointments to avoid the hour-plus drive to specialty care.

“It’s essential for me to keep the internet going no matter what,” Westman said.

Expanding telehealth is a common reason health care providers around the U.S. — in states such as Massachusetts and Arkansas — joined efforts to sign their patients up for the federal discount program.

“This is an issue that has real impacts on health outcomes,” said Alister Martin, an emergency medicine physician at Massachusetts General Hospital. Martin realized at the height of the pandemic that patients with means were using telehealth to access covid care. But those seeking in-person care during his ER shifts tended to be lower-income, and often people of color.

“They have no other choice,” Martin said. “But they probably don’t need to be in the ER action.” Martin became a White House fellow and later created a nonprofit that he said has helped 1,154 patients at health centers in Boston and Houston enroll in the discount program.

At the University of Arkansas for Medical Sciences, a federal grant was used to conduct dozens of outreach events and help patients enroll, said Joseph Sanford, an anesthesiologist and the director of the system’s Institute for Digital Health & Innovation.

Estimates of how many low-income U.S. households qualify for the program vary, but experts agree that only about half of the roughly 50 million eligible households have signed on.

“We believe that telehealth is the great democratization to access to care,” Sanford said. New enrollment in the discount program halted nationwide last month.

Leading up to the enrollment halt, Sen. Peter Welch (D-Vt.) led a bipartisan effort to introduce the Affordable Connectivity Program Extension Act in January. The group requested $7 billion — more than the FCC’s ask — to keep the program funded. “Affordability is everything,” Welch said.

In December, federal regulators surveyed program recipients and found that 22% reported no internet service before, and 72% said they used their ACP-subsidized internet to “schedule or attend healthcare appointments.”

Estimates of how many low-income U.S. households qualify for the program vary, but experts agree that only about half of the roughly 50 million eligible households have signed on.

“A big barrier for this program generally was people don’t know about it,” said Brian Whitacre, a professor and the Neustadt chair in the Department of Agricultural Economics at Oklahoma State University.

Whitacre and others said rural households should be signing up at even higher rates than urban ones because a higher percentage of them are eligible.

Yet, people found signing up for the program laborious. Enrollment was a two-step process. Applicants were required to get approved by the federal government then work with an internet service provider that would apply the discount. The government application was online — hard to get to if you didn’t yet have internet service — though applicants could try to find a way to download a version, print it, and submit the application by mail.

When Frances Goli, the broadband project manager for the Shoshone-Bannock Tribes in Idaho, began enrolling tribal and community members at the Fort Hall Reservation last year, she found that many residents did not know about the program — even though it had been approved more than a year earlier.

Goli and Amber Hastings, an AmeriCorps member with the University of Idaho Extension Digital Economy Program, spent hours helping residents through the arduous process of finding the proper tribal documentation required to receive the larger $75 discount for those living on tribal lands.

“That was one of the biggest hurdles,” Goli said. “They’re getting denied and saying, come back with a better document. And that is just frustrating for our community members.”

Of the more than 200 households Goli and Hastings aided, about 40% had not had internet before.

In the tribal lands of Oklahoma, said Sachin Gupta, director of government business and economic development at internet service provider Centranet, years ago the funding may not have mattered.

“But then covid hit,” Gupta said. “The stories I have heard.”

Elders, he said, reportedly “died of entirely preventable causes” such as high blood pressure and diabetes because they feared covid in the clinics.

“It’s really important to establish connectivity,” Gupta said. The end of the discounts will “take a toll.”

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Not in your head; protecting yourself from lazy medical diagnoses

RDNE Stock Project/PEXELS

by Julie Rehmeyer

You’re a doctor. You have fifteen minutes with your patient, who cries as she ticks off a laundry list of vague symptoms. Depression is very common, you think, and it could explain all of those symptoms. Do you diagnose the patient with depression, noting it in her medical record, or do you begin an expensive, time-consuming investigation?

Now, replay the scenario from the patient’s perspective. You’re Elke Martinez, a veterinary technician, and you’ve developed muscle and joint pain, headaches, fatigue, and gastrointestinal problems. You go to your primary care doctor, part of the Kaiser Permanente healthcare system, and he attributes your symptoms to depression and anxiety. You know that’s not right, since you’re already being treated for those issues, and the treatment works. What do you do?

What Martinez did was humor her doctor. She attended Kaiser’s group cognitive behavioral therapy classes. The classes didn’t improve any of her symptoms, but they did consume a lot of her time and energy. Meanwhile, she saw more doctors to try to figure out what was actually wrong, but every Kaiser-affiliated doctor asked her about the psychiatric diagnosis already in her chart. “You can see on their face that they’re already checked out,” she says. These experiences undermined not only her trust in her doctors, but also in herself: “You get told this enough and you start to believe it and doubt yourself.”

Your odds of having an experience similar to Martinez’s are shockingly high. A 2017 meta-analysis published in The Lancet showed that for every 100 patients seen in primary care, 15 of them will receive a misdiagnosis of depression.

The problem takes a particular toll on patients who are chronically ill. A 2014 survey by the Autoimmune Association found that 51 percent of patients with autoimmune disease report that they had been told that “their disease was imagined or they were overly concerned.” And a 2019 survey of 4,835 patients with postural orthostatic tachycardia syndrome found that before getting a correct diagnosis, 77 percent of them had a physician suggest their symptoms were psychological or psychiatric.

Incorrect psychiatric diagnoses in medical records can cause long-lasting havoc.

In our culture, aspersions against patients with poorly understood chronic illness still run deep. Just a few months ago in OpenMind, we covered longstanding efforts to label as head cases and confabulators individuals with fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), persistent symptoms of Lyme disease, and long covid. You can read it here.

Patients affected by rare disorders (those with fewer than 200,000 sufferers in the United States) also suffer enormously from this type of dismissal. According to the National Organization for Rare Diseases, if you initially receive a false psychiatric diagnosis, it takes you 2.5 to 14 times as long to get diagnosed compared to those who were never misdiagnosed, and between 1.25 and 7 times as long as those who received a false non-psychiatric diagnosis.

Even when a patient is in fact depressed or anxious, that might not be the correct explanation for their physical symptoms. The causation may go in the other direction: The patient might have a physical illness that’s causing their psychological distress. Lyme disease patients, for example, are often misdiagnosed as having depression, bipolar disorder, and more. Yet as a 2021 study pointed out, these patients are often depressed precisely because they are ill. Systemic, whole-body or brain infection can cause impaired sleep, attention, memory, and performance, all of which contribute to depression. Targeting those psychological symptoms without effectively treating the underlying infection will never work.

Psychological diagnoses are often the easiest ones for doctors to make, and the hardest ones for patients to shake. Once a psychological diagnosis is entered into a patient’s medical records, it becomes the starting place for every subsequent doctor who reads it. Patients may not even know the diagnosis is there, since they often don’t see their records (although they have a right to — see Tools for Readers, below).

Martinez realized that the only way she was going to get a proper diagnosis of her physical symptoms was by leaving the Kaiser system, so that she could go to a new set of doctors who couldn’t see the psychiatric misdiagnosis in her chart. Thirteen years after her symptoms started, she finally got an explanation: She has Ehlers-Danlos Syndrome, a disorder of the connective tissue that can cause devastating symptoms throughout the body. By the time she received a proper diagnosis, she was disabled and had to give up the career she loved in veterinary work. And she was luckier than many. On average, with a psychiatric misdiagnosis, it typically takes patients 22 years to get diagnosed with Ehlers-Danlos syndrome.

Photo: SHVETS Production/PEXELS

Incorrect psychiatric diagnoses in medical records can cause long-lasting havoc. When one U.S.-based patient I interviewed, who requested anonymity, was erroneously diagnosed with Munchausen’s syndrome — meaning that she was accused of fabricating her illness — she became unable to get medication for her severe pain for several months, while her therapist worked to persuade the psychologist who diagnosed her to remove it from her chart. In the meantime, she resorted to taking large doses of Ibuprofen, which resulted in a stomach ulcer.

Another patient that I interviewed, also in the U.S., told me that her exhaustion led to a diagnosis of depression while she was a medical resident, even though her low energy was sufficiently explained by her autoimmune disease. When she received her medical license, it came with conditions. Due to her diagnosis of mental illness, she was required to receive a high level of supervision, making it impossible for her to practice.

Yet another patient I spoke with lost the ability to digest food, weighing in at 85 pounds at 5’7”, but the local hospital wouldn’t admit her to the emergency room because her medical records diagnosed her problem as psychiatric. Since she lives in a remote area and is too ill to travel, she hasn’t been able to access medical care at all; last I heard, she had not gotten to the bottom of her digestive woes.

Even today, doctors routinely use the term “medically unexplained symptom” to imply a psychological origin for a patient’s physiological reports.

The problem of misdiagnosing physiological illness as psychological is particularly pernicious because it evokes the loaded and sexist aura of the old, discarded term "hysteria." Sigmund Freud claimed, without evidence, that unconscious traumatic memories can be converted into symbolically relevant physical symptoms. In so doing, he gave doctors permission to think of literally any symptom as having a psychological origin, even in the absence of psychological symptoms. This led to the term “conversion disorder,” which has multiplied into endless euphemisms designed to cover over its sexist origins, including somatization disorder, functional disorder, and bodily distress disorder. Specialists sometimes argue over fine distinctions between the terms, but fundamentally, they all imply that looking for physical causes for your symptoms will be fruitless and that you should instead address them psycho-behaviorally.

Even today, doctors routinely use the term “medically unexplained symptom” to imply a psychological origin for a patient’s physiological reports. In UpToDate, a highly respected online guide for evidence-based treatment, a search for “medically unexplained symptoms” reroutes to an entry on somatization in psychiatry. Both the language and the culture of modern medicine systematically nudge some doctors toward the assumption that ambiguous symptoms are psychosomatic; it is a culture we need to change. “As a matter of peculiar professional fact, there is no term that names diagnostic uncertainty without also naming psychological diagnosis,” bioethicist Diane O’Leary and health psychologist Keith Geraghty state in the Oxford Handbook of Psychotherapy Ethics.

Writing in The American Journal of Bioethics, philosopher Abraham Schwab at Clarkson University notes that psychological diagnoses may be incorrect either because the doctor doesn’t have the knowledge to come to the proper biomedical diagnosis or because the patient has a biological condition that is not yet understood by medical science. “As a result,” he says, “psychogenic diagnoses should carry with them low levels of confidence.”

In practice, though, a psychological diagnosis tends to override other interpretations, making it difficult for doctors to discover a medical explanation for the patient’s symptoms. That’s partly by design: Investigating undiagnosed medical conditions is expensive, and it often doesn’t lead to treatment that relieves the patient's symptoms. The widely used MacLeod’s Clinical Investigation Handbook cautions that “if [patients with medically unexplained symptoms] are not managed effectively, fruitless investigations and harm from unnecessary drugs and procedures may result.” Furthermore, a patient’s very determination to find a medical explanation can be dismissed as “doctor-shopping” and viewed as an indication of somatization.

Mental health professionals have historically resisted making records available to their patients.

Patients with erroneous psychological records face enormous obstacles since their doctors are discouraged from seeking out the physiological cause of their suffering and further complaints may be met with further suspicion. But there are ways to push back against these challenges, and the place to start is by accessing medical records — and then pushing to get errors fixed.

Mental health professionals have historically resisted making records available to their patients. Common justifications are that patients suffering delusions will become hostile if told in records that their beliefs aren’t correct, or that clinicians will hold back in their note-taking because they’re worried about the reaction of the patient. But some other professionals have argued for encouraging patients to review records, writing in the Journal of the American Medical Association: “The clinician who actively solicits open and ongoing dialogue, including a patient’s opinion about a note’s accuracy, may enhance both clinical precision and the treatment relationship.”

Since 1996 the Health Insurance Portability and Accountability Act (HIPAA) has given patients a legal right to access their medical records. Starting in October of 2022, the 21^st Century Cures Act made it easier to do so. In particular, the Act requires that healthcare providers provide patients access to all the health information in their electronic medical records without delay and without charge. This rule does not include notes from psychotherapy sessions that are not contained within the regular medical record, but it does include any diagnoses made. If a patient believes anything in that record is wrong — such as an incorrect psychiatric diagnosis — they can request that it be changed. See the “Tools” section below for specific guidance on how to purgi falsehoods from your medical record.

Fully fixing the problem of incorrect psychiatric diagnoses, and the array of challenges that result from them, will take a major shift in mindset in the medical profession. It will require a much more nuanced understanding of the complexities of how our mental and physical states affect one another bidirectionally. It will require an acceptance that psychological treatment is an adjunct for physical treatment, rather than a way of getting rid of responsibility for a problematic patient. And it will require a transformation in our healthcare system so that doctors have the time they need to investigate complex patients.

Such changes are beyond what any individual patient can accomplish. But in the meantime, patients can at least ensure that their medical records aren’t making their quest for accurate diagnosis and effective treatment more difficult.

This story originally appeared on OpenMind, a digital magazine tackling science controversies and deceptions.