Doctors Feel Helpless When It Comes to Patient Medical Debt

By Crystal Lindell

A new study looked at medical debt from the point of view of doctors and other medical professionals. What researchers found offers insights into how burdensome medical debt has become on the healthcare system as a whole in the United States – and how helpless doctors feel in the face of it. 

According to the Census Bureau, about 14 million Americans owe over $1,000 in medical debt and about 3 million owe more than $10,000.  

The new report – released by Undue Medical Debt, a nonprofit funded by the Robert Wood Johnson Foundation – found that medical debt is a serious problem for clinicians and their patients, and that it’s impacting how, when and if patients receive care.  

In short, doctors feel they are forced to weigh bad financial health versus bad physical health in their treatment decisions. 

For the study, Undue Medical Debt, held four focus groups in early 2024. Each group consisted of a diverse group of participants, including family doctors, internists, hospitalists, nurse practitioners and community health workers, who shared their experiences with patients struggling with medical debt. 

They found that cost-of-care conversations with patients were relatively common and that patients were less afraid to talk about their medical debt than anticipated. However, clinicians feel they have very limited training and few resources to offer patients 

Most focus group participants reported having regular conversations with patients about medical debt and that patients were concerned about paying for their care. But the healthcare system is so replete with confusing and often disparate policies that it is difficult to be a fully informed consumer. 

One clinician said that when patients take on medical debt, they end up deferring their healthcare, which is bad for them, their families and for the healthcare system as a whole. 

“Because you have someone that, if they could have come in a year and a half before, you’re treating elevated cholesterol and blood pressure, but they push off their care and a year and a half after that, they’re showing up in your emergency room with a stroke,” the clinician said. 

“That costs them more money, that costs the system more money, and so it’s a very negative perpetuation of bad value; when you put debt upon debt people stay away from healthcare.” 

Clinicians said that they hope the importance of physical health will win out, but those decisions are often out of their control. They worry about the patient who disappears from care, particularly those who show up months, years or even decades later with advanced disease that could have been successfully treated earlier. 

Several clinicians thought the healthcare system as a whole was on the verge of collapse. 

“I’m not sure how much power I have. I’m sure there’s something that I can do more of, maybe from a top level. I guess sit on a board, talk to some of our administrators,” one clinician lamented. “But in general, healthcare has just unfortunately become such a machine. You know, it’s just such a machine.”

They added that they’re trying to give people the best care they can, but time constraints hold them back. Many felt helpless. 

“We’re trying to address unbelievable amounts of problems, five and six different comorbid problems that are really, really serious and trying to prioritize, and we do that for probably, some of us, myself, 14 to 19 people a day, in some cases sometimes more,” one provider said.  

Undue Medical Debt said that the business of medicine has pulled clinicians away from practicing medicine, forcing them to become financial counselors on top of their other duties. While many note this is outside their purview, they also understand they have “no choice” but to play this role. 

Doctors and nurses in the focus groups blamed multiple actors for the state of the healthcare industry, such as insurers, pharmaceutical companies and health system bureaucracy.  

When testing policy fixes with clinicians, the most popular ones included: presumptive financial aid screening; hiring people to help patients access resources and financial aid in multiple languages; capping interest rates, and making home foreclosures due to medical debt illegal. 

The Consumer Financial Protection Bureau recently adopted a rule that bans all medical debt from credit reports and prohibits lenders from using medical information in their lending decisions. That will remove an estimated $49 billion in medical bills from the credit reports of about 15 million Americans. 

Veterinarians Know. Why Can’t Doctors?

As a patient, I have long bemoaned the fact that the cost of medical services is so far removed from providers. There aren’t many other businesses that operate in such a way. Usually the person selling a service has to be aware of the cost of that service. And make no mistake, in a for-profit healthcare system, doctors are selling you healthcare.  

There’s one example that highlights how absurd the situation has gotten – veterinarians. When I take my cat to the vet – a medical office where most customers pay out of pocket – the veterinarians and their staff are always acutely aware of the cost of each procedure, and they always provide an estimate up front. 

It’s a system that makes me believe such care is possible for human patients, too. However, anytime I’ve seen a doctor and brought up pricing before agreeing to a test or procedure, the doctor has looked at me like I was speaking in an alien language. They can’t fathom that they would ever be asked to provide a cost estimate for their own services, much less factor it into treatment options. 

I don’t currently have health insurance, so cost is an enormous factor for me now. However, even when I did have what people would consider “good” health insurance, co-pays and out of pocket expenses ruined my credit. 

Yet anytime I tried to get cost estimates in advance of treatments or procedures, they would imply that I must not value my body if I am concerned with such petty things as money. 

To be honest, even that was somewhat understandable a few years ago. But recently, many hospitals and doctors have resorted to what Undue Medical Debt calls “Extreme Collection Actions.” That’s when hospitals and doctors used collection methods such as suing people, taking their homes, or garnishing wages. 

For many patients in the United States, the system is set up so that when you see a doctor, they order tests and treatments without telling you any sort of price range at all. Then they send you an opaque bill that lacks any sort of price breakdown. And then they’ll report you to a credit collector if you don’t pay them. 

The fact that any of this is legal shows how broken healthcare has gotten. 

While many doctors quoted in the Undue Medical Debt study said they don't want to be bothered with talk about money, that’s a luxury their patients don’t have. 

Undue Medical Debt has a free downloadable toolkit designed to help healthcare workers have conversations about cost and medical debt with their patients.

“Our toolkit lays the groundwork to not only help clinicians assist their patients in avoiding the unjust burden of medical debt, but it also encourages clinicians to leverage their expertise and lived experience to champion upstream solutions to stymie the creation of unpayable medical debts to begin with,” said Eva Stahl, Undue Medical Debt’s Vice President of Public Policy and Program Management.

Here’s hoping doctors actually use it. 

How I Set Up My Daily Life To Manage Chronic Pain 

By Crystal Lindell

I’ve been dealing with severe chronic pain for more than a decade now, most of which is due to the intercostal neuralgia I have in my ribs. So, at this point, my entire life is basically set up to accommodate that. 

While some people may read that paragraph and assume that I have a sad life consumed by pain, I prefer to think of it as my way of fighting back. 

By planning for and accepting my pain, I can live without added stress and burdens. As a result, I don’t let my pain lead – instead I get to lead my pain. 

My daily schedule is flexible, so that I can adjust it to my pain as I’m able, doing more when I can and resting when I need to. I keep things as stress-free as possible because stress escalates my pain. And I try to work with my body instead of against it. 

So what does that look like on a typical day in my life?

Well, I usually wake up for the first time at around 4:30 am to the sound of my orange cat Goose screaming at the top of his lungs because he’s hungry. I take a second to see how much my back hurts today and decide the best method for getting out of bed. My goal is always to get out of bed without needing help from my fiancé Chris.

Then I go to the kitchen to feed Goose and our other three cats – Princess D, Basil, and Goldie. I love them, so they get wet food before I even eat my own morning breakfast: Two Advil; one pain pill; a spoonful of kratom washed down with orange Gatorade; and a cup of hot coffee. 

I go to sleep at about 8 pm most nights, so I check my phone first thing to catch up on any messages I get from loved ones overnight. I also throw the news on our TV so I can catch up on the slew of horrible things that likely happened in the world overnight. 

After “breakfast” I lay out a yoga mat and grab my pillow so I can lay on the floor for a bit as the news continues in the background. There’s something about laying on the ground that helps alleviate the vicious back pain I’ve been dealing with ever since throwing out my back a few weeks ago.

Anytime I try to skip this new floor ritual, I regret it, so I have now built it into my daily schedule to stare at the ceiling multiple times a day. Our black cat Basil always curiously crawls around my head wondering what I’m doing in her realm of the house – the floor. 

Then I get the food dishes ready for the outside cats that I take care of and run those outside to help them survive the long, cold Midwest winter. 

Depending on how busy my day ahead is, I’ll then sometimes lay down for another hour or so while letting my morning medication cocktail kick in. 

When I get back up, I make another cup of coffee, which usually ends up sitting half-finished on our coffee table until it gets cold and I give up on it. Despite the fact that this happens almost every day, I still keep making that second cup of coffee thinking today will be the day I finally finish it.

I don’t work full time in large part due to my health, so I don’t have to get ready to leave the house most days. But that doesn’t mean I just sit around watching TikTok all day. I make ends meet by doing freelance writing work, and by running an online Lego store with Chris via a website called Bricklink. 

If I have writing assignments due, I start mulling that over in my brain, while simultaneously checking in on our Bricklink store to see if any orders came in overnight. Chris handles most of the packing and shipping, but if we are especially busy, I jump in and help pull orders. 

Because my rib pain gets worse the longer I’m awake, I also try to cook any food for the day in the morning because cooking is a very draining task in and of itself. That means I’ll often start a pot of soup or a casserole by 9 a.m. Personally, I actually like dinner food for breakfast, so depending on how long that takes to make, I’ll generally have a serving to start my day. 

I also try to make double batches of any meals, and then freeze them in a portion-size silicone ice cube tray to essentially make my own homemade frozen dinners. That way, when I’m having an especially bad pain day, I have quick meal options. 

After cooking, I head to my couch and figure out the rest of my plans for the day.

This time of year, when the temperatures here in northern Illinois are almost always below freezing, I do a lot of life from my couch under a heated blanket, with our long-hair tortoiseshell cat Princess D on my shoulder. 

Sometimes that means I even do some writing directly on my phone, if I’m in too much pain to pull out my laptop. 

After a few hours of work, I usually have another round of ibuprofen, prescription pain meds, and kratom in the afternoon with my lunch, which is often another serving of whatever food I made that morning. 

CRYSTAL AND PRINCESS D

Then I’ll try to shower. I don’t know if it’s because of the way that I have to move my arms to wash my hair or because there’s just a lot of standing involved, but showers genuinely wipe me out, so I have to set aside time to both take a shower and then recover for a bit on the couch.  After I get dressed, I have to lay on the floor again for about 15 minutes for my back. 

Most days I wear extremely comfortable clothing because I can’t risk any additional discomfort to my ailing body. So if I’m staying home for the day I’ll just directly opt for pajamas, but if I’m visiting my mom — who lives a couple blocks away — I’ll throw on some lounge pants and T-shirt.

In both cases though, I’ll also throw on some compression socks just to keep my feet from swelling up because of all the ibuprofen I take. 

I’ll also throw on some very light makeup just to give myself a little pick me up. Then, I will often run over to my mom’s house to drop off some food for her and my grandma to eat for dinner.

After I get home, I’ll spend time catching up on social media, which helps me feel like I have a social life despite the fact that I spend most of my time at home. 

I also am still trying to avoid catching COVID because I don’t want to risk adding to my health issues, so I limit my time at large social gatherings as much as possible. That means most of my communication with loved ones is via text and the occasional FaceTime call. 

So I take some time in the later afternoon on the couch, while Chris rubs my feet, to catch up with people I care about while also playing the daily New York Times Connections and Wordle Games. 

Part of running the Bricklink store means that, aside from pulling orders, our other big task is adding Lego parts to our inventory, so I try to work on that in the evening before feeding the cats dinner and then winding down the night. 

Then, like I said, I’m in bed by about 8 pm because dealing with chronic pain is exhausting. So after one last round of Advil, pain medication, and kratom, I’ll get under the heated blanket in our bed and scroll social media on my phone for a bit before falling asleep with our tabby cat Goldie cuddled up next to my head.

I could see how a healthy person might read this day-in-the-life story and come away thinking I have a pretty plain existence. But I love spending my days in my cozy, small-town apartment, cuddling my cats on-demand and running an online Lego store with my fiancé. 

It’s back when I was trying to pretend that pain didn’t exist that I was miserable, constantly overdoing it, and ending up either in the emergency room sobbing in pain, or at home awake all night with pain-somnia. 

Pain forces you to go with the flow, to embrace the world as it is and work with it, instead of against it. It’s only when I accepted that fact, that I found true happiness. 

Note: Pain News Network makes a small commission on any Amazon links in this article. 

Trump’s Early Moves Could Raise Drug Costs and Reduce Insurance Coverage

By Julie Appleby and Stephanie Armour, KFF Health News

President Donald Trump’s early actions on health care signal his likely intention to wipe away some Biden-era programs to lower drug costs and expand coverage under public insurance programs.

The orders he issued soon after reentering the White House have policymakers, health care executives, and patient advocates trying to read the tea leaves to determine what’s to come. The directives, while less expansive than orders he issued at the beginning of his first term, provide a possible road map that health researchers say could increase the number of uninsured Americans and weaken safety-net protections for low-income people.

However, Trump’s initial orders will have little immediate impact. His administration will have to take further regulatory steps to fully reverse Biden’s policies, and the actions left unclear the direction the new president aims to steer the U.S. health care system.

“Everyone is looking for signals on what Trump might do on a host of health issues. On the early EOs, Trump doesn’t show his cards,” said Larry Levitt, executive vice president for health policy at KFF, the health policy research, polling, and news organization that includes KFF Health News.

A flurry of executive orders and other actions Trump issued on his first day back in office included rescinding directives by his predecessor, former President Joe Biden, that had promoted lowering drug costs and expanding coverage under the Affordable Care Act and Medicaid.

Executive orders “as a general matter are nothing more than gussied up internal memoranda saying, ‘Hey, agency, could you do something?’” said Nicholas Bagley, a law professor at the University of Michigan. “There may be reason to be concerned, but it’s down the line.”

That’s because making changes to established law like the ACA or programs like Medicaid generally requires new rulemaking or congressional action, either of which could take months.

Trump has yet to win Senate confirmation for any of his picks to lead federal health agencies, including Robert F. Kennedy Jr., the anti-vaccine activist and former Democratic presidential candidate he has nominated the lead the Department of Health and Human Services. On Monday, he appointed Dorothy Fink, a physician who directs the HHS Office on Women’s Health, as acting secretary for the department.

During Biden’s term, his administration did implement changes consistent with his health orders, including lengthening the enrollment period for the ACA, increasing funding for groups that help people enroll, and supporting the Inflation Reduction Act, which boosted subsidies to help people buy coverage. After falling during the Trump administration, enrollment in ACA plans soared under Biden, hitting record highs each year. More than 24 million people are enrolled in ACA plans for 2025.

The drug order Trump rescinded called on the Centers for Medicare & Medicaid Services to test ways to lower drug costs, such as setting a flat $2 copay for some generic drugs in Medicare, the health program for people 65 and older, and having states try to get better prices by banding together to buy certain expensive cell and gene therapies.

That might indicate Trump expects to do less on drug pricing this term or even roll back drug price negotiation in Medicare.

The White House did not respond to a request for comment.

Biden’s experiments in lowering drug prices didn’t fully get off the ground, said Joseph Antos of the American Enterprise Institute, a right-leaning research group. Antos said he’s a bit puzzled by Trump’s executive order ending the pilot programs, given that he has backed the idea of tying drug costs in the U.S. to lower prices paid by other nations.

“As you know, Trump is a big fan of that,” Antos said. “Lowering drug prices is an easy thing for people to identify with.”

In other moves, Trump also rescinded Biden orders on racial and gender equity and issued an order asserting that there are only two sexes, male and female. HHS under the Biden administration supported gender-affirming health care for transgender people and provided guidance on civil rights protections for transgender youths. Trump’s missive on gender has intensified concerns within the LGBTQ+ community that he will seek to restrict such care.

“The administration has forecast that it will fail to protect and will seek to discriminate against transgender people and anyone else it considers an ‘other,’” said Omar Gonzalez-Pagan, senior counsel and health care strategist at Lambda Legal, a civil rights advocacy group.

“We stand ready to respond to the administration’s discriminatory acts, as we have previously done to much success, and to defend the ability of transgender people to access the care that they need, including through Medicaid and Medicare.”

Trump also halted new regulations that were under development until they are reviewed by the new administration. He could abandon some proposals that were yet to be finalized by the Biden administration, including expanded coverage of anti-obesity medications through Medicare and Medicaid and a rule that would limit nicotine levels in tobacco products, Katie Keith, a Georgetown University professor who was deputy director of the White House Gender Policy Council under Biden, wrote in an article for Health Affairs Forefront.

“Interestingly, he did not disturb President Biden’s three executive orders and a presidential memorandum on reproductive health care,” she wrote.

However, Trump instructed top brass in his administration to look for additional orders or memorandums to rescind. (He revoked the Biden order that created the Gender Policy Council.)

Democrats criticized Trump’s health actions. A spokesman for the Democratic National Committee, Alex Floyd, said in a statement that “Trump is again proving that he lied to the American people and doesn’t care about lowering costs — only what’s best for himself and his ultra-rich friends.”

Medicaid Cuts

Trump’s decision to end a Biden-era executive order aimed at improving the ACA and Medicaid probably portends coming cuts and changes to both programs, some policy experts say. His administration previously opened the door to work requirements in Medicaid — the federal-state program for low-income adults, children, and people with disabilities — and previously issued guidance enabling states to cap federal Medicaid funding. Medicaid and the related Children’s Health Insurance Program cover more than 79 million people.

“Medicaid will be a focus because it’s become so sprawling,” said Chris Pope, a senior fellow at the Manhattan Institute, a conservative policy group. “It’s grown after the pandemic. Provisions have expanded, such as using social determinants of health.”

The administration may reevaluate steps taken by the Biden administration to allow Medicaid to pay for everyday expenses some states have argued affect its beneficiaries’ health, including air conditioners, meals, and housing.

One of Trump’s directives orders agencies to deliver emergency price relief and “eliminate unnecessary administrative expenses and rent-seeking practices that increase healthcare costs.” (Rent-seeking is an economic concept describing efforts to exploit the political system for financial gain without creating other benefits for society.)

“It is not clear what this refers to, and it will be interesting to see how agencies respond,” Keith wrote in her Health Affairs article.

Policy experts like Edwin Park at Georgetown University have also noted that, separately, Republicans are working on budget proposals that could lead to large cuts in Medicaid funding, in part to pay for tax cuts.

Sarah Lueck, vice president for health policy at the Center on Budget and Policy Priorities, a left-leaning research group, also pointed to Congress: “On one hand, what we see coming from the executive orders by Trump is important because it shows us the direction they are going with policy changes. But the other track is that on the Hill, there are active conversations about what goes into budget legislation. They are considering some pretty huge cuts to Medicaid.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

How Vaccine Misinformation Distorts Science

By Mark O'Brian

Vaccinations provide significant protection for the public against infectious diseases and substantially reduce health care costs. Therefore, it is noteworthy that President-elect Donald Trump wants Robert F. Kennedy Jr., a leading critic of childhood vaccination, to be secretary of Health and Human Services.

Doctors, scientists and public health researchers have expressed concerns that Kennedy would turn his views into policies that could undermine public health. As a case in point, news reports have highlighted how Kennedy’s lawyer, Aaron Siri, has in recent years petitioned the Food and Drug Administration to withdraw or suspend approval of numerous vaccines over alleged safety concerns.

I am a biochemist and molecular biologist studying the roles microbes play in health and disease. I also teach medical students and am interested in how the public understands science.

Here are some facts about vaccines that Kennedy and Siri get wrong:

Vaccines Don’t Cause Autism

Public health data from 1974 to the present conclude that vaccines have saved at least 154 million lives worldwide over the past 50 years. Vaccines are also continually monitored for safety in the U.S.

Nevertheless, the false claim that vaccines cause autism persists despite study after study of large populations throughout the world showing no causal link between them.

Claims about the dangers of vaccines often come from misrepresenting scientific research papers. In an interview with podcaster Joe Rogan, Kennedy incorrectly cited studies allegedly showing vaccines cause massive brain inflammation in laboratory monkeys, and that the hepatitis B vaccine increases autism rates in children by over 1,000-fold compared with unvaccinated kids. Those studies make no such claims.

In the same interview, Kennedy also made the unusual claim that a 2002 vaccine study included a control group of children 6 months of age and younger who were fed mercury-contaminated tuna sandwiches. No sandwiches are mentioned in that study.

Similarly, Siri filed a petition in 2022 to withdraw approval of a polio vaccine based on alleged safety concerns. The vaccine in question is made from an inactivated form of the polio virus, which is safer than the previously used live attenuated vaccine.

The inactivated vaccine is made from polio virus cultured in the Vero cell line, a type of cell that researchers have been safely using for various medical applications since 1962. While the petition uses provocative language comparing this cell line to cancer cells, it does not claim that it causes cancer.

Vaccines Undergo Clinical Trials

Clinical trials for vaccines and other drugs are blinded, randomized and placebo-controlled studies. For a vaccine trial, this means that participants are randomly divided into one group that receives the vaccine and a second group that receives a placebo saline solution. The researchers carrying out the study, and sometimes the participants themselves, do not know who has received the vaccine or the placebo until the study has finished. This eliminates bias.

Results are published in the public domain. For example, vaccine trial data for COVID-19, human papilloma virus, rotavirus and hepatitis B are available for anyone to access.

Aluminum Boosts Immunity

Kennedy is co-counsel with a law firm that is suing the pharmaceutical company Merck based in part on the unfounded assertion that the aluminum in one of its vaccines causes neurological disease. Aluminum is added to many vaccines as an adjuvant to strengthen the body’s immune response to the vaccine, thereby enhancing the body’s defense against the targeted microbe.

The law firm’s claim is based on a 2020 report showing that brain tissue from some patients with Alzheimer’s disease, autism and multiple sclerosis have elevated levels of aluminum. The authors of that study do not assert that vaccines are the source of the aluminum, and vaccines are unlikely to be the culprit.

Notably, the brain samples analyzed in that study were from 47- to 105-year-old patients. Most people are exposed to aluminum primarily through their diets, and aluminum is eliminated from the body within days. Therefore, aluminum exposure from childhood vaccines is not expected to persist in those patients.

Ironically, Kennedy’s lawyer, Siri, wants the FDA to withdraw some vaccines for containing less aluminum than stated by the manufacturer.

Vaccine Manufacturers Can Be Held Liable

Kennedy’s lawsuit against Merck contradicts his insistence that vaccine manufacturers are fully immune from litigation.

His claim is based on an incorrect interpretation of the National Vaccine Injury Compensation Program, or VICP. The VICP is a no-fault federal program created to reduce frivolous lawsuits against vaccine manufacturers, which threaten to cause vaccine shortages and a resurgence of vaccine-preventable disease.

A person claiming injury from a vaccine can petition the U.S. Court of Federal Claims through the VICP for monetary compensation. If the VICP petition is denied, the claimant can then sue the vaccine manufacturer.

The majority of cases resolved under the VICP end in a negotiated settlement between parties without establishing that a vaccine was the cause of the claimed injury. Kennedy and his law firm have incorrectly used the payouts under the VICP to assert that vaccines are unsafe.

The VICP gets the vaccine manufacturer off the hook only if it has complied with all requirements of the Federal Food, Drug and Cosmetic Act and exercised due care. It does not protect the vaccine maker from claims of fraud or withholding information regarding the safety or efficacy of the vaccine during its development or after approval.

Good Nutrition Is Not a Substitute for Vaccination

Kennedy asserts that populations with adequate nutrition do not need vaccines to avoid infectious diseases. While it is clear that improvements in nutrition, sanitation, water treatment, food safety and public health measures have played important roles in reducing deaths and severe complications from infectious diseases, these factors do not eliminate the need for vaccines.

After World War II, the U.S. was a wealthy nation with substantial health-related infrastructure. Yet, Americans reported an average of 1 million cases per year of now-preventable infectious diseases.

Vaccines introduced or expanded in the 1950s and 1960s against diseases like diphtheria, pertussis, tetanus, measles, polio, mumps, rubella and Haemophilus influenza B have resulted in the near or complete eradication of those diseases.

It’s easy to forget why many infectious diseases are rarely encountered today: The success of vaccines does not always tell its own story. RFK Jr.’s potential ascent to the role of secretary of Health and Human Services will offer up ample opportunities to retell this story and counter misinformation.

Mark R. O'Brian, PhD, is a Professor and Chair of Biochemistry at the University at Buffalo. His research is focused on understanding how microbes regulate cellular processes relevant to agriculture, human health and disease.

This article originally appeared in The Conversation and is republished with permission.

FDA Approved Genetic Test for Opioid Use Disorder Is Flawed

By Crystal Lindell

An FDA-approved test that claims it can identify genetic risk for opioid use disorder (OUD) is so flawed as to basically be useless – at least according to a new study published in JAMA.

The genetic test, which is sold under the brand name “AvertD” by AutoGenomics, was given approval by the Food and Drug Administration in 2023. The test claims it can use 15 genetic variants to identify people at risk for misusing opioids. 

According to AutoGenomics, the variants “may be associated with an elevated genetic risk for developing OUD.” However, the company provides no citations to support the associations between the brain reward pathways and OUD — meaning the test’s foundation itself seems to be flawed.

However, the authors took the premise of the AvertD test seriously, and set out to find if it could actually predict OUD. They looked at a diverse sample of more than 450,000 “opioid-exposed individuals” (including 33,669 individuals with OUD), and found no evidence to support the use of the AvertD test. 

Specifically, they found both high rates of false positives and false negatives, with 47 out of 100 predicated cases or controls being incorrect. 

“Notably, clinicians could better predict OUD risk using an individual’s age and sex than the 15 genetic variants,” researchers said.

The fact that the test doesn’t seem to work could have dangerous consequences for pain patients. The fear is that they will be used to deny patients opioid medications simply because their “genetic markers” show them to be in a high-risk patient group. 

The study authors directly point this out, writing: “False-positive findings can contribute to stigma, cause patients undue concern, and bias health care decisions.”

They also point out the potential harms of a false-negative finding, which "could give patients and prescribers a false sense of security regarding opioid use and lead to inadequate treatment plans."

The fact that this genetic test has gotten as far as it has raises questions about the FDA approval process. 

The problems don’t stop there though. Another major flaw in both the study and the genetic testing is that “Opioid Use Disorder” has such murky diagnostic criteria, that it’s difficult to take it seriously. It’s basically a set of vague symptoms, as opposed to a clear-cut diagnosis, despite what some have been led to believe. 

A CDC fact sheet for OUD Diagnostic Criteria is a mishmash of vague symptoms, such as tolerance and withdrawal, that could just be the result of untreated or poorly treated physical pain. 

Things like “taking opioids in larger amounts or over a longer period of time than intended” and “having a persistent desire or unsuccessful attempts to reduce or control opioid use.”

The CDC also lists "withdrawal symptoms" as one of the diagnostic criteria for OUD, which is something that people can experience from rapid tapering without having OUD.

The CDC then includes the odd disclaimer that “tolerance and withdrawal are not considered” when opioids are taken under appropriate medical supervision.

So in a country that does not guarantee healthcare, you can avoid an OUD diagnosis if you can afford to find a doctor willing to prescribe opioids to you. But if you can’t find a doctor or abandoned by one — and then have withdrawal symptoms — you must have a disorder.

That doesn’t sound like a medical diagnosis to me. That sounds like classism.

A patient needs just to have just two of the OUD criteria to have “mild OUD” – a benchmark that has the sweeping effect of including a large number of patients taking opioids for chronic pain. 

It’s no wonder that a genetic test claiming to be able to predict OUD would be so flawed, given how flawed the diagnosis of OUD is to begin with. 

Perhaps instead of trying to guess potential risks for a vague disorder, the FDA should be focused on treatments already proven effective for people who want to stop their opioid use, like expanding methadone access. 

The whole situation reminds me of the Tom Cruise-movie Minority Report, a futuristic thriller in which a specialized police department called Precrime “apprehends criminals by use of foreknowledge provided by three psychics.”

Denying people pain medication based on a flawed genetic test that falsely claims it can predict the future is basically the same thing. And it’s just as evil in real life as it is in the movie.  

Why Life With Chronic Pain Makes Every New Ache Extra Terrifying

By Crystal Lindell

Late Sunday night, while putting freshly cleaned sheets onto my bed, I twisted a little weird and threw out my back.

By Monday morning, the pain was so debilitating that I was sobbing as my fiancé tried to help me out of our bed. But beyond dealing with the immediate physical pain, I was also terrified of the future.

As a chronic pain patient, every time I get any new illness or affliction I worry that it will become what the rib pain I woke up with in 2013 became: Permanent. 

When you develop chronic health issues of any sort, you lose one of the healthy population’s greatest luxuries: The ability to assume that you’ll eventually get better. 

Thankfully, I seem to be recovering from this flare up of back pain. Three days after the initial onset, I’m able to lift myself out of bed, and even do some light cooking in the kitchen. 

This is the first time I’ve ever experienced any type of severe back pain like this though, and I had been very stressed that my back would never recover.

This isn’t the first time I’ve faced this fear. 

When I had a bad case of COVID in 2022, I spent the first few nights awake with the most severe cold-related muscle aches I’d ever experienced.

In my fever state, I frantically Googled to see if this was a symptom that could become permanent. I was petrified that my body was just broken like this forever. Thankfully it wasn’t, but I know all too well that there’s no guarantee of recovery when it comes to the human body.

It’s not just my health I worry about either. 

Anytime a loved one tells me about a chest cold, some new joint pain, or any type of new health issue, I panic that their body will never recover. Or worse, what if it kills them?

This fear has only been made worse since 2020, when COVID, which first presents as cold symptoms, started spreading. In the years since it has killed multiple people I knew. 

Now anytime anyone I know develops so much as a sore throat, I worry that they’re going to die.

I keep this to myself because there’s nothing to be gained by spreading my worry to them, but I worry nonetheless. I know firsthand how fragile our bodies are, how delicate our health truly is. I am all too aware of the fact that any of us can lose it at any time. 

As I've been enduring the new back pain all week, cursing myself for taking my ability to bend over for granted, I’ve thought a lot about my late-father, who died from COVID in 2022. 

I have vivid memories of him throwing his back multiple times throughout my childhood. Now that it has happened to me, I’ve realized that I didn’t spend nearly enough time asking him how he coped with it, and then seemingly got past it. 

My dad’s back was so bad that he was walking with a cane at age 35, when my younger brother was born in 1989. But the cane was gone within a few years and I don’t remember him needing it again after that. 

Talking with my brother this week, he told me our dad blamed his back pain on driving a truck for a living, a profession he eventually gave up so he could pursue computer programming. So, I assume it was the career change that alleviated his back pain. But now that he’s dead, I’ll never really know for sure how he healed his back, or if he even really did.

My late-grandfather on my mother’s side also spent decades of his life battling seemingly untreatable back pain. He passed away when I was a toddler, but stories about his back pain continued long past his death. 

Now, as an adult, I suspect he was one of the links in the genetic Ehlers-Danlos chain that we now know runs along my mom’s side of the family. We both battled the same condition, but he’ll never know that.

Pain is always bad, but as our bodies age in the same ways our parents, and their parents before them have, it does have one small, silver lining: It can help us connect to our ancestors in new ways, helping us more fully grasp the lives they lived before us. 

After battling this back pain flare up this week, I have a new appreciation for how much pain my dad and my grandfather must have endured due to their back problems, and a more fully developed sense of empathy for their troubles. 

So while I will continue to worry that every new health issue will become permanent, including my new back pain, I can take small comfort in knowing that even if that’s the case, enduring it just makes me part of a long line of my ancestors who’ve endured the same before me. 

Human beings suffer, but when we suffer together, it does tend to alleviate our sorrows ever so slightly. 

How Do We Decide Which Drugs Are Bad and Which Ones Are Good?

By Crystal Lindell

I was in elementary school during the height of the original DARE campaign. I vividly remember fully uniformed police officers coming into my classrooms to share the Drug Abuse Resistance Education’s program’s very direct message: “DARE to say no to drugs!”

My friends and I all got free black T-shirts with the bold red DARE slogan splashed across it, and every year we signed a pledge promising to never use drugs.  

What qualified something as a “drug” was a little more difficult to discern though. 

Back in the 1990s there was a lot of talk about “pot” and “dope,” so I figured those were both bad, although as a 10-year-old living in a pre-Google world, I didn’t really know what either one was and I didn’t know how to find out.

I also remember lots of conversations about alcohol and cigarettes, but those were apparently only “drugs” if you were under a certain age, seeing as how a lot of adults I knew used them. 

How effective DARE was is still hotly debated, but there is one part that seems to have left a lasting legacy: Most Americans still think anything labeled as a “drug” by cops is inherently bad and must therefore be greatly restricted and regulated.  

Now that I’m in my 40s, I am much less accepting of the blanket “drugs are bad” messages that law enforcement agencies spread to my peers and me back in the day. 

As it turns out, “drugs” can mean a lot of things, and the reasons we are given for why some are bad and some are good are murky at best. 

If you ask most adults in the United States to define “drugs,” they’ll often reach for whatever legal categories the police have neatly provided. Opioids and stimulants are “drugs” because they are heavily regulated, but NSAIDS and acetaminophen aren’t because you can buy them over the counter at Walgreens. 

If you push them to consider the definition beyond what law enforcement has provided, they’ll usually go right to “things that are addictive.” If you point out that caffeine is extremely addictive though, they’ll shrug that off with “well that’s different.” 

I’ll also often hear people defend their morning latte with something along the lines of “well nobody’s ever resorted to sex work to buy an espresso," as though that in and of itself makes coffee superior to a morning Adderall. 

Aside from the fact that this logic shames sex workers, it also leaves out the very important reason that people don’t have to resort to extremes to access coffee: Caffeine is legally sold over the counter. 

If medications like hydrocodone or Adderall were sold in the same way as your morning coffee, they would also be cheap, safe and easily available – and thus people wouldn’t have to resort to extremes to be able to afford them. 

Beyond that, we also have decided, as a culture, that lots of very addictive things should be sold over the counter. 

In addition to coffee, adults can purchase alcohol and nicotine with no problem, despite how deadly both of those are. What makes them different from Adderall or even Oxycontin? Have you ever really considered the question? 

If anything, don't drunk driving and second-hand smoke potentially make alcohol and nicotine worse, since there’s so much danger to non-users?

Personally, as a pain patient who has also seen many loved ones suffer as a result of an onslaught of opioid-phobic regulations over the last decade, I will admit to having been radicalized on this issue. 

I think most of the drug laws we have on the books are far too restrictive, and most substances should be sold the same way alcohol and coffee are: Over the counter. 

However, I can appreciate the fact that this is a radical position in the United States. After all, we’ve all been subjected to heavy anti-drug propaganda for decades now, going back to Nancy Reagan first telling kids to “Just Say No” way back in 1982. 

I’d encourage you to think critically about such a simplistic slogan though. When it comes to which substances people want to consume and why, it’s not quite so easy to know when a drug is bad and when it’s good. 

In fact, I have a saying of my own that I like to share during conversations about drug legalization. I believe people use the drugs they need and, absent that, they’ll use the drugs they have access to.

So if a drug is something you need, is it really something you should “Just say no” to?

A Pained Life: How Are You Feeling?

By Carol Levy

When I meet someone on the street, we do the perfunctory, “Hi, how are you?” and the expected reply, “Fine thanks. And you?”

If it's a really good friend, we may start to have a true conversation about how we really feel: “Well, you know I've been going through a tough time lately.”

The friend may nod her head in understanding and say, “Oh I'm so sorry. Let's talk about it.” And then we do.

It’s different when I'm at my neurosurgeon or neurologist's office. When the doctor enters the exam room, he’ll usually say, “Hi Carol, how are you?” I reply, “Fine thanks. And you?”

My question to him is ignored. Unlike my friend, his response is not to ask, "No, Carol. How are you feeling? How is your pain affecting you?”

Instead, we go directly to clinical questions like, “Has your pain changed in any way?” or "Are the medications helping you any?”

In my last column, I wrote about wanting doctors to be able to feel what we feel, and to understand what it’s like to have the levels of pain that we endure. Too often, their words and actions indicate they truly don't understand or care.

A few days after I wrote that column, I was in my family doctor's office. We did the “How are you?" thing. He then asked me why I was there.

"I saw some bad blood work results on another doctor's patient portal,” I said. “It's been 2 months. I assumed she didn't call me because the results were good. But now that I saw them, I want to know what they mean." 

“Well,” he started off, “We see thousands of patients and we can't remember to follow through on all of them. You should have called her." 

If that was intended to make me feel small, he succeeded.

“Yes, your cholesterol is terrible You have to take statins,” he said. I told him I didn’t like statins. He didn't ask me why, but warned, “If you don't, you'll have a heart attack.”

My life has been hard, the chronic pain making it a gazillion times harder. I am virtually alone, which makes my life worse. “I don't have an interest in extending my life,” I said. 

I didn't say that to get sympathy. It's my reality. I did, however, expect a response --- a grimace, a nod of the head, or some words of concern or care. None were forthcoming. Instead, he ignored my comment.

When I asked about the risks of statins, he ignored that too, repeating what seemed like a scare tactic: “You'll have a heart attack.”

Had he heard and listened to my words, he would have realized that was not going to have an effect on me.

I had a few other issues. Each one was met with a quick one or two-word answer. I asked him for prednisone, a steroid, as it had previously helped my sciatica. “No,” was his response.

I explained how prednisone helped me before, and that I wanted some in the house for the times when the sciatica gets bad. “I don't want you taking a steroid every day,” he replied.

I hadn't asked or indicated that I wanted to take it daily. He just came to his own conclusion. I explained again that I only wanted it for the “just in case” days. Unhappily, based on his expression, he agreed.

Then the appointment ended. I turned away for a second to get my purse.  When I turned back, he was out the door. Without even a goodbye.

Not once did he ask, “How are you? How are you emotionally? How are these issues affecting you? How are you doing with your pain?”

As I thought about his indifference to me, a person with emotions and feelings, I thought about all of the doctors I’ve seen since my trigeminal neuralgia and chronic pain started. Sadly, I could only think of two out of 20 or more who actually cared about how I was, the emotional, psychological me.

I know every doctor, like every person, has felt what I felt. Not necessarily the depths of despair some of us feel about having pain, or the fear that we have on a good day that the pain is just lurking around the corner. No one is immune from those thoughts.

So many articles have posited that those of us with chronic pain have psychological issues stemming from prior events, such as childhood trauma, that caused our pain and disabilities. 

How am I feeling, doctor? Ask me. It may help you to understand me, my pain, and my other medical issues. And, just by asking, you may be able to help yourself be a better doctor.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

Response to CEO Murder Shows Depth of Frustration with Health Insurers  

By Simon Haeder

The U.S. health care system leaves much to be desired.

It is convoluted, fragmented, complex and confusing. Experts have also raised concerns about quality, and disparities are rampant. And, of course, it is excessively costly – far more so than in any other developed nation. Given these failings, it is not surprising that Americans are unhappy with their health care system.

As the public reaction to the killing of UnitedHealthcare CEO Brian Thompson has made clear, however, many Americans are perhaps most unhappy with their health insurers. Indeed, just 31% of Americans have a favorable view of the health insurance industry, according to a 2024 survey.

Yet, given the recent tragic events, as a health policy scholar, I think it would be prudent to take a step back and reflect on the broader health care system and how the U.S. got to this point.

Patchwork Healthcare

Few with any personal experience or professional expertise would describe U.S. health care as the gold standard of health care systems.

For a number of historical and political reasons, it is barely a “system” but rather a complex patchwork with countless different approaches to covering the costs of health care that include splitting the costs between individuals, employers and governments.

Governments also extensively regulate health and health care and, although in a diminished role today, serve as the providers of care through state and county hospitals as well as the Veterans Health Administration.

The result is a regulatory amalgam made up of countless entities. The Affordable Care Act reforms only added additional layers of laws and regulations to an already complex framework.

Yet, even beyond this general structure, Americans face many challenges. Indeed, no other health care system in the world is pricier. This involves costs for medical services but also extremely high administrative costs. Pharmaceuticals are just one example of the excessive financial burden carried by Americans.

For many Americans, these costs are too high, with an estimated 530,000 medical bankruptcies annually.

And despite that high price, concerns persist about quality and access.

In addition, the system tends to be highly inequitable and subject to countless disparities that make it harder for many poorer, rural and nonwhite Americans to access care.

The Role of Insurers

In the United States, insurers play a crucial role in connecting – and at times disconnecting – patients with the care they require.

They are also at the forefront of many of the starkest frustrations that Americans experience – even the ones they are not directly responsible for. While medical providers and pharmaceutical companies charge the world’s highest prices, it is generally up to insurers to tell patients how much they still have to pay or that their care won’t be covered. Insurers are also the ones who determine whether a drug is not covered or a doctor is “out of network,” meaning patients can’t get the specific treatment or care they desire.

To be sure, insurers are not just the messenger – they also add to many of the frustrations patients experience every day. For example, a patient may have to travel very far or wait a long time for an appointment if their provider network is too narrow or simply does not have enough providers. Moreover, the directories and searches that insurers use to show what providers are “in network” may be inaccurate, as they rarely get updated.

For many individuals, this can mean delayed or forgone care, which has major implications for their health and finances. For some, it can even lead to preventable deaths.

Some of the practices insurers are most infamous for, such as rescinding coverage over minor clerical issues and refusing to cover preexisting conditions, ended under the ACA. But some of these issues could return if the incoming Trump administration seeks to undo some of the ACA’s protections.

Even today, so called short-term, limited-duration health plans promise good coverage for lower premiums, but even basic items may not be covered. Many plans, for example, do not cover prescription drugs or even hospital emergency rooms.

Blame the System, Not Just Insurers

Why do insurers act the way they do? For many, the answer may seem simple: to make money. This, of course, rings true – insurers in the U.S. rake in billions of dollar. However, while they tend to be profitable, their margins generally range only from 3% to 5%.

But the story is more complicated than that. With government power limited, insurers are perhaps the only force in the U.S. health care industry trying to rein in rising costs in a health care system where everyone seeks to maximize their profits.

That means insurers take on the role of bad cop, doing things such as limiting access to certain care or doctors. But there are several prudent reasons for doing so; for instance, it’s in the public’s best interest when insurers do not cover drugs that have been shown ineffective or of low quality. And ultimately this does keep premiums lower than they would otherwise be. Of course, insurers and their CEOs profit handsomely in the process. And at times, their methods are ethically and legally questionable.

Ultimately, many if not most of the frustrations Americans experience with health care have their origins in a poorly designed system that is highly inefficient and offers countless opportunities for profit. Yet insurers are only one – perhaps the most visible – part of that broken system.

Simon F. Haeder, PhD, is an Associate Professor of Public Health in the Department of Health Policy & Management in the School of Public Health at Texas A&M University. His most recent work has focused on the implementation of the Affordable Care Act, provider networks, and regulatory policymaking at the Office of Management and Budget.

This article originally appeared in The Conversation and is republished with permission.

Should We Diagnose Random Strangers on the Internet?

By Crystal Lindell

I need to say something that is considered controversial in the online chronic illness community: I actually think that we should diagnose random strangers on the internet.

At least sometimes. 

I know, I know. This is the kind of thing most people in the chronic illness community rally against. It’s frowned upon and quickly policed anytime it comes up. 

If you so much as hint that someone with overextended elbows in an Instagram Reel video could have Ehlers-Danlo syndrome (EDS), you’ll get swarmed with comments along the lines of “Don’t diagnose random strangers on the internet!”

But I’m coming to this topic from my own personal experience of being correctly diagnosed by random strangers on the internet. 

After I started writing about my health issues online, readers emailed me to say that they thought I might have EDS. I then took that information to my doctors, who eventually diagnosed me. 

Despite the fact that all of my joints very clearly overextend and that multiple doctors had commented on this to me, none of them even mentioned EDS until I brought it up. So, without the random strangers on the internet, there’s a good chance I never would have known that I have EDS. 

It doesn’t stop there though. Because of that chain of events, many of my family members were also diagnosed with EDS. And someday, future generations might be as well. 

That’s a whole family of people finally knowing what has been afflicting us for generations, and finally understanding that all the chronic health issues we’ve experienced are related. 

There’s power in that, but more importantly there are tangible benefits to it. Knowing that we have EDS and that we are likely to pass it on to our children helps us make more informed decisions about our health in countless ways. 

And it’s all because random strangers on the internet diagnosed me. 

I understand that actively writing about my health issues is not the same thing as people posting random videos on all sorts of topics on TikTok. I get that my content was much more open to the idea of health input from strangers. 

But I would argue that this aversion to diagnosing random strangers online can be harmful to patients. It leads to fewer people knowing what’s wrong with them – and more people thinking that whatever is wrong is some kind of moral failing. 

I do get that EDS, especially the hypermobile type, stands out in this conversation because there are very clear visual markers of the disease. But I don’t think we should stop at EDS, especially in the United States where healthcare is a for-profit industry. I’ll even go so far as to say that I consider it mutual aid to offer free medical advice to others online.

It’s not like we as online commenters are doctors who can prescribe medications to people we’ve diagnosed. Merely mentioning to someone that they may have an illness just opens the door for them to look into that diagnosis themselves and to then bring it up with their doctor. Millions of people have done that after consulting with “Dr. Google” online – usually to the chagrin of their actual doctors.

The idea that it is bad to even comment on a public post about health also serves to continue stigmatizing many illnesses. After all, it’s not a bad thing to have EDS, so why would it be a bad thing to mention to someone online that they could have it? 

Many doctors miss very obvious diagnoses because our for-profit healthcare system mandates that they rush patients through appointments. Their egos also tend to dismiss their patients’ descriptions of their health issues. 

Sometimes the best chance we have is actually random strangers on the internet. 

Now obviously, I need to add an important disclaimer here. If someone specifically says that they do not want medical input, you should listen to them. 

But I would also tell people that refusing medical input could be a bad idea. There is a lot of power in crowdsourcing information. And who knows, random strangers on the internet may just figure out what’s going on with your health before your doctor does. 

You Are a Medical Commodity

By Dr. David Hanscom 

The shocking murder of a health insurance executive and the glorification – by some – of Luigi Mangione, the alleged killer, has underscored how many Americans feel about the U.S. healthcare system.

Medicine has become big business and you, the patient, are a hot commodity. You and your health problems are the main source of revenue for many companies needing to report big profits to their shareholders. In this era of so-called health reform, it’s essential to understand what this means to you – and the news is not good.

As a spine surgeon, I enjoy caring for patients and performing surgeries when needed, and do my best to help people feel better and function well. Unfortunately, most people getting spine surgery today not only won’t be helped, they’ll suffer more as a result of complications from surgeries they shouldn’t have.

For example, let’s look at spinal fusion for low back pain. There is clear research showing that only about 25% of patients significantly benefit from a spine fusion for lower back pain. Another report from Washington State, where I practiced, showed that just 15% of people who had a spinal fusion returned to work one year after their operation.

Physicians today are trained to use evidence-based data to make treatment decisions – and yet, when it comes to low back pain, the data is routinely ignored. A 2009 study showed that physicians eschew established clinical guidelines for best practices in treating back pain.

3 Patient Stories: George, Teresa and Tom

George, a middle-aged businessman, had lower back pain. The first spinal fusion he had didn’t help, so he had another. As a result of complications from that second (unnecessary) surgery, he lost bowel and bladder function, and has to walk with crutches.

Teresa was struck in the back by a swinging steel beam while at work. It was a significant blow, but she only had a bruise, no fractures.  Her discomfort was treated with 15 sets of injections that included facet blocks, epidural cortisone injections, and dye into most of her discs.

She also underwent a spinal fusion from her neck down to her pelvis – an operation that made it impossible for her to stand upright, as she was fused in a flexed-forward position. I was able to help her stand up straight again after a 10-hour procedure that involved cutting her spine in two to re-straighten her back.

Had Teresa only gotten some work on her back muscles after the workplace injury, she could have gone back to everyday life without surgery.

Tom had a narrowing of his lumbar spinal canal caused by spinal stenosis, which caused weakness in his legs. The stenosis should have been treated with a simple, three-level laminectomy (simple removal of bone), as his spine was stable. Instead, he had surgery to fuse his spine at eight levels from his 10th thoracic vertebra to the pelvis. A fusion is only indicated for an unstable spine and is a much bigger operation.

After the fusion, Tom suffered a series of infections and fractures, requiring 15 additional operations in 30 months. He is now solidly fused at 24 levels from the base of his skull to his pelvis. He did not do well.

I could share dozens of stories like these, all with a common theme. Though they were experiencing back and leg pain, not a single one required fusion surgery. Fusions are necessary and helpful only for unstable or deformed spines, and they do not relieve back pain. The more significant number of levels fused during surgery requires more extended operations, which have a higher chance of complications.

All three of the patients I described above could have been helped with a structured spine care program to implement known effective treatments to decrease their pain and improve the odds of a successful surgery.

Instead, they were subjected to unnecessary risks and unspeakable misery. Spread out over the hundreds of thousands of other patients who could tell similar stories, the costs to society in dollars and human suffering are enormous.

Why Is This Happening?  

There are several reasons, some concerning how doctors are trained, but money is a significant factor. Spinal fusion is a lucrative procedure for hospitals.  Hospitals now employ an increasing number of physicians and many use their electronic medical records to track the number of diagnostic tests that their doctors order and the surgical procedures they perform. Doctors are rewarded financially with bonuses for doing as many surgeries as possible, but they get negative ratings for not doing enough to contribute to the institution's profitability.

That’s bad enough, but even worse, these highly profitable procedures have been well-documented as not working. Effective treatments are often (usually) not covered by insurance. Instead of solving and preventing disability, the business of medicine is creating it. The total cost of chronic disease in the U.S. is approaching $4 trillion a year. Yet nothing is being done to solve it.

The Hippocratic Oath swears us doctors to first to do no harm. That also means doing the right thing for our patients, regardless of the situation. It is often said that the financial incentives need to change to create a healthier medical system. The Oath does not say to treat patients with the best standard of care only if they can pay for it.

One place change has to occur is with each physician refusing to be intimidated by hospital administrators and by demanding more time to talk to their patients.

This is a complicated state of affairs, and I am not blaming any group for causing it. I am continually impressed by how committed physicians are to doing the right thing for patients. But in this practice-for-profit climate, they need to be allowed more time or be given the resources to do so.

Only about 10% of spine surgeons implement psychological screening prior to surgery that will optimize a patient’s chances of a successful outcome. Many surgeons don’t feel it is their responsibility. Really? Are we going back to the days when barbers were the surgeons? Are we only technicians?

Hospital systems are problematic because administrative costs have risen 3,000% over the last 10 years, while physician salaries have grown by 15%. The increased “productivity” goes directly into management’s pockets.

BTW, 65% of personal bankruptcies are caused by medical bills. Could this be a factor in creating our homelessness epidemic?

Profits Over Safety

The core problem lies with the healthcare-for-profit model and the scale at which it is being practiced. It is focused on making money off of illness, rather than encouraging wellness. Businesses must operate profitably, but at whose expense? Is there any shareholder willing to trade their health for the betterment of the bottom line? Why should you be the one to be the fuel for this machine?

We can’t afford to continue down this road. Medical consumers – that’s you, me, and our husbands, wives, mothers, fathers, sisters, brothers, sons, and daughters -- are the core revenue source. We must become better, more educated and more vocal consumers of healthcare, and we must refuse to be treated like medical commodities.

This effort needs to begin NOW and with one person at a time. You deserve much better than this.

David Hanscom, MD, is an orthopedic spine surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

David is the author of ”Back in Control: A Spine Surgeon's Roadmap Out of Chronic Pain,” one of the books on back pain that was read by Luigi Mangione.

What Qualifies Someone as Disabled?

By Crystal Lindell

There’s a common question in the disability community about what qualifies someone as “disabled.”

My advice to anyone considering this question about themselves is this: People who are not disabled do not sit around contemplating whether or not they are disabled. 

So, if you are wondering if your health issues qualify you as disabled: They do.  

A lot of Americans have a rigid idea of “disability” based on how it’s often portrayed in popular culture. The idea is that “real” disabled people use something like a wheelchair, a walking cane, or a walker. Those Hollywood props are what qualifies someone as legitimately disabled. 

But in real life, that’s not true. Disability is often gradual, slowly chipping away at our abilities – but taking them away nonetheless. Which means it can be hard to know when we’ve crossed the threshold into fully disabled. And we may arrive there without so much as a walking cane. 

In truth, it took me years to fully grasp this about my own diminishing health. 

My pain often makes it so that I cannot leave the house, even with pain medication. Grocery shopping trips leave me exhausted, assuming I even have the energy to push through that day’s pain to navigate the store in the first place. I am on daily medications, I put off showers because they are too difficult for me to handle, and I often cancel plans last minute when my body decides to be uncooperative. 

Yet despite all of that, I still did not know if I should consider myself "disabled."

Over time though, I have come to realize that my health problems impact so many aspects of my life, that of course I am disabled. 

After we decide to take on the label of “disabled” for ourselves, we often meet the next hurdle: pushback from loved ones and strangers who bristle at the distinction. 

There’s also a common sentiment among patients with chronic illness where they think if they meet some imaginary threshold of disabled, then finally people will start to accept their limitations and maybe even show some sympathy. Unfortunately, that is often not the case. 

When it comes to health issues, you will never find validation from others. There is no level of mobility aids or level of diagnosis you can get where people who’ve dismissed your health issues in the past will suddenly start to accept them. 

That’s in large part because when people interact with a disabled person, it requires them to contemplate the fact that their own body could eventually fail them one day. 

Some people choose to hold space for that realization in themselves and then express empathy. But others try to reject it, choosing instead to accuse the disabled person of being overdramatic. That’s because they don’t want to consider just how vulnerable our human bodies really are.  

I’ve heard people dismiss diagnosed cancer patients as “hypochondriacs” for complaining about their symptoms. I’ve seen people claim that POTS is not a real disability, despite the fact that it’s often debilitating and life-altering. And I’ve heard people tell loved ones not to use a wheelchair when they need it, because it might make them “give up.” As though we are ever allowed to give up in our bodies. 

Personally, I think of the time I sprained my ankle back in high school. At the time I was working at Walmart, and I went into work despite the severe pain, swelling and bruising on my ankle. Unable to put any weight on it, I used one of the store’s electric mobility scooters to get around the store during my shift. 

A co-worker felt the need to come right up to me and tell me that I shouldn’t be using it because I should be saving the scooters for people who “really” need them. Apparently being unable to walk did not qualify me. 

My advice here is that other’s opinions of your body are irrelevant. They don’t know what it’s like to live with your symptoms, so it doesn’t matter if they accept the label of disabled for you or not. All that matters is that you accept whatever you label you decide to use. 

And, like I said, if you’re wondering if you are “disabled” you probably are. And that’s okay. Now that you’ve named it, you can get on with the noble work of finding new ways to live with it.

Rage Against the System: Opioid Lawsuits, Trump and the UnitedHealthcare Shooting

By Dr. Lynn Webster

In recent years, we’ve witnessed a collective shift in societal attitudes, where deep-seated anger and disillusionment are driving public narratives in unsettling ways.

Three seemingly unrelated phenomena -- the public applause for opioid lawsuit settlements, unwavering support for Donald Trump, and the viral glorification of Luigi Mangione, who allegedly killed the CEO of UnitedHealthcare -- are not as disparate as they first appear.

Together, they reveal a troubling portrait of the undercurrents shaping modern America: a sense of betrayal, unchecked populist rage, and a growing disdain for perceived elites.

The Opioid Crisis

The opioid epidemic has left an indelible scar on American society, and the plethora of lawsuits against pharmaceutical companies like Purdue Pharma, Johnson & Johnson, and others has been widely celebrated.

These legal victories are seen by many as a reckoning for the corporations and individuals who allegedly profited from human suffering. However, beneath this applause lies something darker -- a visceral hatred for systems and figures viewed as complicit in perpetuating a crisis that ruined lives and decimated communities.

While the lawsuits represent an attempt at justice, they have done little to address the underlying anger that millions of Americans feel. Many believe the settlements, while historic, are a drop in the bucket compared to the lives lost and families shattered. This resentment fuels a broader anti-establishment sentiment, one that increasingly targets not only corporations, but anyone perceived to be profiting at the expense of the vulnerable.

The Cult of Trump

Donald Trump’s rise and sustained political influence hinge on a similar anger: a profound distrust of institutions, wokeness, and systems perceived to exploit ordinary Americans.

Trump’s base is galvanized not by policy specifics, but by his ability to channel their rage and direct it at convenient targets -- be it the media, the "deep state," or global corporations. His support thrives on a shared belief that traditional systems, including the government, have failed to protect the American public.

The opioid lawsuits and Trumpism overlap in their shared narrative of betrayal by elites. Whether it’s Big Pharma, corporate executives, or Washington insiders, these movements feed off the same anger -- a belief that the powerful have sacrificed ordinary Americans for profit or political gain.

The Mangione Phenomenon

Enter Luigi Mangione, a name that now reverberates across social media, not because of his actions alone, but because of what he represents in the public imagination.

Allegedly responsible for the murder of UnitedHealthcare CEO Brian Thompson, Mangione has been transformed into a meme and even a symbol of resistance against perceived corporate exploitation. Viral hashtags, merchandise, and online jokes portray him as a folk hero for those who feel victimized by insurance companies and the broader healthcare system.

What’s striking is not just the speed at which this narrative has developed, but the glee with which Mangione’s alleged crime has been embraced. Social media platforms, awash with memes and satirical merchandise, have turned an act of violence into a rallying cry. This reaction is deeply rooted in the same anger that celebrates opioid lawsuits and supports populist leaders.

UnitedHealthcare, representing an industry notorious for denying claims and driving up costs, has become a symbol of the kind of unchecked corporate power people love to hate. Mangione’s alleged actions, while abhorrent, have been reframed as an act of rebellion against a system that many feel prioritizes profits over people.

What This Reveals About Us

Taken together, these phenomena reflect a society grappling with betrayal, powerlessness, and the long-term consequences of institutional failures. The opioid epidemic, insurance company practices, and political stagnation are all symptoms of systems that millions of Americans believe have failed them. Instead of addressing these issues with nuance or systemic reform, we’ve turned to simplified narratives that vilify individuals and institutions.

The memeification of Mangione, much like the unwavering support for Trump and the uncritical celebration of opioid lawsuit settlements, reveals a deep longing for retribution -- a sense that someone, anyone, must pay for the perceived injustices of modern life. Yet this focus on retribution distracts from meaningful solutions and perpetuates a cycle of outrage and despair.

Moving Forward

The overlapping applause for lawsuits, political populism, and dark memes should serve as a wake-up call. These phenomena highlight not only the anger but also the desperation of a society searching for accountability in all the wrong places.

Addressing these issues requires more than legal settlements, political rhetoric, or viral content; it demands a reimagining of the systems and structures that have allowed such disillusionment to fester.

If we fail to address the root causes of this anger -- systemic inequities, lack of accountability, and the growing divide between the powerful and the powerless -- we risk further polarizing a society already on edge.

We need solutions that offer more than fleeting justice or performative outrage. Only then can we begin to rebuild trust in the institutions that are supposed to serve us all.

Lynn R. Webster, MD, is Senior Fellow at the Center for U.S. Policy (CUSP) and Executive VP Dr. Vince Clinical Research. He also consults with the pharmaceutical industry. Lynn is the author of the award-winning book "The Painful Truth" and co-producer of the documentary "It Hurts Until You Die." You can find him on Bluesky: @butchielyons.bsky.social.

CEO Shooting Exposes Deep Faults in U.S. Healthcare System

By Crystal Lindell

Over the last few weeks I’ve been privately lamenting the fact that we just completed an entire presidential election cycle with almost zero mention of health insurance from either of the major party candidates. 

Healthcare costs impact so much of my life and the lives of loved ones, yet it seems like neither the Republicans or Democrats even noticed. Just a few years ago, there were conversations about the possibility of Medicare for All or at least a public option from the U.S. government – but in 2024, both of those things seemed to have been forgotten. 

My credit was destroyed long ago by tens of thousands of dollars in medical debt, all of which were incurred when I was still working full-time and when I still had what most people would consider “good” health insurance. 

Now, as a freelancer, I’ve just gone without. I did try to look into private health insurance, but it costs too much and covers too little, so I decided that it made more sense to live without health insurance for the last 2 years. I pay cash for doctor appointments and prescriptions while trying my best to avoid hospitals.

I’m not the only one I know struggling with health insurance and healthcare costs though. 

My grandma’s Medicare Advantage plan recently kicked her out of a short-term rehab facility because they said she was fit to go home – despite the fact that she could not even stand up to use the toilet yet. 

My sibling had to put off a needed procedure until they could get a new job that offered better insurance. 

And my mom can’t go on Social Security yet because she’s still a couple years too young for Medicare, and the Social Security payments would mean she’d lose her Medicaid eligibility. 

In fact, the only people I’ve ever met in real life who like the health insurance industry are people who work for the health insurance industry. And I have long said that the only people in America who like their own health insurance are the people who’ve never really had to use it

Over the last few years I’ve become even more radicalized on the issue. I’ve come to realize health insurance in America is an active scam. That’s in large part because it’s usually tied to your employment.

The problem is that when someone gets truly sick, one of the first things they often lose is their ability to work. The entire healthcare system is set up to make most people pay for insurance when they’re well, and then to make them lose their insurance as soon as they might need to use it. That’s a scam. Especially as insurers rake in billions of dollars in profit annually while running this scam. 

Plus, if you somehow manage to hold on to your job and your insurance after getting sick, the  insurance companies often won’t pay for all your healthcare costs. They do their best to deny as many claims as possible. 

Vigilante Justice

Last week, UnitedHealthcare CEO Brian Thompson was shot in a targeted assassination in New York. Luigi Mangione, a 26-year-old who suffered from chronic back pain, has been arrested for the crime. 

It was the kind of violent act that just a few years ago I think most Americans would have bristled at. Vigilante violence isn’t usually something that finds mainstream acceptance here. 

But as healthcare costs continue to ruin people’s lives, while politicians ignore all the suffering, the reaction to the shooting wasn’t universal condemnation – it was glee. All over the internet, people rejoiced at the news. And there’s already merchandise supporting the alleged shooter being sold online. 

There’s no doubt that Thompson’s decisions as CEO of the largest private health insurer in the world have resulted in people dying. Afterall, UntiedHealthcare has the highest claim denial rate in the industry. 

And make no mistake, claim denials kill people. It means that patients who needed life-saving treatments couldn’t get them. Yet the U.S. justice system would never make Thompson face any form of criminal liability for those deaths. 

Human beings crave justice though. And when the law stops giving it to them, they seek it elsewhere.

Thompson’s shooting – and the public reaction to it – are predictable. In a system where a well-paid insurance executive will never even be arrested, the desire for justice doesn’t evaporate. 

Most Americans understand this already. We live it everyday, and we know healthcare costs in the United States are unsustainable. 

It’s the politicians – who actually have the power to fix any of this – who refuse to see the truth. They all receive large donations from the insurance industry to make sure we never get so much as a public option. 

But truth demands to be seen. You can’t hide it forever. And people will instinctively feel joy when it is revealed – even if that joy is in response to a vigilante assassination. 

I’m not hopeful that our politicians will acknowledge these truths now. But it would be in their best interest to do so. 

7 Practical Gift Ideas for People with Chronic Pain

By Crystal Lindell

Whether you’re looking for gift ideas for a loved one with chronic pain, or you’re looking for some ideas for your own wish list, we’ve got you covered. 

I’ve been living with chronic pain for more than 10 years now, and below is a list of some of my favorite things that would also make great gifts for the person in pain in your life. 

And don’t worry, it’s not a bunch of medicinal stuff. Being in pain doesn’t represent our entire identities. The list below is a lot of fun items that would be great for anyone on your list, but that also are especially great for people with chronic pain.

There’s also stuff for every price range, so you’re sure to find the perfect holiday gift! 

Note that Pain News Network may receive a small commission from the links provided below. 

1. Heated Blankets

I put heated blankets first on this list for a reason – they are truly invaluable if you have chronic pain. Even if you live in a warm climate, they can be great to use if people you live with want the AC on the high side. 

There’s just something that’s both cozy and comforting about curling up with a blanket that literally warms you up. I can’t recommend them enough, both as a gift and for yourself. 

I personally loved this Tefici Electric Heated Blanket Throw so much that after getting one for my house, I literally ordered 4 more so I could give them out as Christmas gifts to my family. They all loved them too. And so did their pet cats! 

Find it on Amazon here: Tefici Electric Heated Blanket Throw

The Tefici was actually my intro to heated blankets. After purchasing one for my living room, I was hooked. So I leveled up to this Shavel Micro Flannel Heated Blanket

It was a little more expensive than the heated throw, but I got it in 2021, and it’s still going strong. We use it in the bedroom every single night during our cold Midwest winters, and I can’t imagine sleeping without it. It offers more heat settings than the throw, and it can stay on for up to 9 hours. The heating mechanism is also more steady than the throw, so it doesn’t feel like it gets too hot overnight. 

Find it on Amazon here: Shavel Micro Flannel Heated Blanket

2. Home Coffee Machine

One thing about chronic pain – or really any sort of chronic illness – is that it makes it difficult to leave the house some days. But that doesn’t mean you have to give up your Starbucks-style coffee. 

With a home espresso machine, and a milk frother it’s really easy to create very similar drinks at home – and they’re much cheaper than Starbucks. 

I’ve personally been a fan of Nespresso machines for years now and I recently got my sister into them as well. Assuming the person you’re buying for likes coffee, and that they don’t already have a Nespresso, getting them one or a related accessory like a frother as a gift can be a really fun idea. 

Plus, then they’ll lovingly think of you every morning when they use it! 

Find it on Amazon: Nespresso Vertuo Pop+ Coffee and Espresso Maker by Breville with Milk Frother, Coconut White

3. Sound Machine

A lot of people with chronic pain have trouble sleeping, but both me and my partner have realized that having some white noise in the background can really help our brains relax overnight. 

There are a lot of options out there, but a basic one at a lower price point is all you really need. I got him the EasyHome Sleep Sound Machine last year for Christmas and we both love it! It now has a permanent place on our bedroom dresser. 

It has 30 Soothing Sounds, 12 Adjustable Night Lights, and 32 Levels of Volume. We use it all winter when it’s too cold to sleep with the fan on for background noise. 

Find it on Amazon: EasyHome Sleep Sound Machine

4. Pajama Pants

As someone with chronic pain, I honestly spend more days in pajama pants than I do in regular pants. And not only do I love wearing them, I also love receiving them as a gift – especially novelty ones. 

My partner is a huge fan of Lord of the Rings, so I got him these Lord of The Rings Men's PJ’s last year for his birthday, and he wears them at least once a week. 

And quick note: If you’re purchasing pajamas as a gift, I always recommend sizing up to make sure they’re super comfortable. 

Find it on Amazon: Lord of The Rings Men's Sleepwear

5. Streaming Devices

There are a lot of streaming devices you can use to connect your TV to the internet, but we’ve had Rokus in our house for years now, so I can personally recommend them. 

We specifically love that they offer this really great search feature, where if you search on the Roku homepage for a movie or TV show title, it will tell you which one of your streaming services offer it, and even which ones have it for free! So no more scrolling in an out of each streaming app trying to find the movie you want to watch. 

As an added bonus, you can also use a feature in the Roku App as a remote if you lose yours, which can come up a lot for people who might be dealing with chronic pain-related brain fog. 

Find it on Amazon: Roku Express 4K+

6. Art Supplies

Having chronic pain means I’m always on the lookout for low-key activities I can do at home, so over the years I’ve gotten really into artistic pursuits. But if you’ve ever tried to start a new hobby, you know that getting all the supplies can be half the battle. 

But that also means that art supplies can make a great gift for someone with chronic pain. Plus, they come at a very wide range of price points, so you can find something perfect without having to overspend. 

I personally have the ai-natebok 36 Colored Fineliner Pens linked below, and I love using them for a wide variety of projects. But there’s also sketch pads, watercolor sets and blank canvas, not to mention color books. 

Find it on Amazon: ai-natebok 36 Colored Fineliner Pens

7. Gift Cards

Of course, when all else fails, sometimes the best gift is a gift card, especially if you’re looking for something last-minute since they can usually be sent via e-mail. 

I especially recommend Amazon gift cards, specifically because they can be used to pay for Amazon Prime Service, which offers both streaming services and fast home delivery – two things that people with chronic pain often love. 

Find it on Amazon: Amazon gift cards