Sicker Americans More Likely to Misuse Medication

By Pat Anson

What makes someone “misuse” a medication? Does it mean they’re addicted? Are they trying to get high? Do they have a family history of substance abuse? 

The answer may simply be that they’re sick. 

That’s according to a new study that found that the misuse of prescription drugs is closely tied to the number of chronic conditions a patient has. Previous research has linked chronic pain to higher rates of opioid misuse, but researchers at Syracuse University found the overall disease burden plays a bigger role than whatever medication a patient is taking.

“We talk about the overdose crisis in epidemic terms,” says Andrew London, a Professor of Sociology at Syracuse. “It affects some populations more than others. We wanted to broaden that narrative a little bit and talk about prescription drug misuse more generally, because it’s not just prescription opioid misuse.” 

London and his colleagues analyzed data from the National Wellbeing Survey, an annual survey on the health and well-being of working age adults in the United States.

Nearly 33,000 respondents self-reported whether they were diagnosed in the last 12 months with hypertension, high cholesterol, diabetes, heart disease, obesity or being overweight, chronic obstructive pulmonary disease, post-traumatic stress disorder, traumatic brain injury, depression or anxiety. 

They were also asked whether they misused prescription opioids, tranquilizers, sedatives, or stimulants. Misuse was defined as someone taking a medication that was not prescribed to them or taking it in a way a doctor did not intend, such as taking a higher dose or taking a dose more often than prescribed.

The study findings show that people with no chronic conditions had a 2.8% chance of misusing a medication. The risk doubled to 5.6% for those with one health condition and kept rising from there. People with two conditions have a 8.2% chance, and those with three or more conditions have a 11.7% risk of misuse.

Prescription Drug Misuse by Number of Chronic Health Conditions

source: SYRacuse university

“This simply tells us that the more conditions an individual manages, the higher the likelihood of misusing medications,” lead author Esther Oshaji, a doctoral student, said in a press release.  

People with anxiety, depression and other mental health conditions reported more misuse than those with physical health conditions, such as obesity or diabetes. Knowing that in advance could help healthcare providers develop more targeted treatments for patients at greater risk of misuse.

“It helps us to know that anxiety and depression are driving misuse among chronically ill patients,” Oshaji says. “Given that it is widely assumed that people misuse drugs because of physical health problems and chronic pain, it is important to show that depression and anxiety are actually driving misuse rates more than physical health conditions.” 

Misuse may also be driven by the number of prescriptions a patient has or the number of doctors they see. People with multiple health conditions generally have more access to medications, and may be more likely to try and manage their symptoms.

“Management of chronic disease requires active decision-making, so people make choices about how they’re managing doctors’ orders,” London says. “We know that patienthood, self-medication and agency are probably part of the story.”

A weakness of the study is that drug misuse is self-reported, and someone may be less likely to admit they misused a medication. Misuse is also a very broad term that includes not using a medication because it’s not effective, no longer needed, or has too many side effects. Simply not taking a drug could be called “misuse.”

Misuse is also frequently confused with abuse, which is when someone uses a substance to get high or for self-harm, leading to negative consequences in life. 

Researchers at Syracuse are now studying whether chronic disease burden is associated with illicit drug use, including marijuana, and whether misuse is associated with gender, age, socioeconomic status and education. 

Hiding Your Chronic Pain Can Backfire

By Crystal Lindell

When I first developed intercostal neuralgia in 2013, I was so undermedicated and in so much pain that hiding my physical deterioration was not an option.

On work trips, I would lay on the floor behind our magazine booth in conference centers crying. Back in the office, I would sob as I typed out emails at my desk.

And I would talk openly with colleagues about wanting to kill myself because the pain was so severe.

It was the same at family events and social gatherings. If I showed up at all, I would lay on a couch in the back of the house for most of the party, tears streaming down my face because I was in too much pain to even sit up right. I would hardly interact with anyone.

And I would openly tell everyone there how I only made it because I took 20 mg of Norco before I left the house — and I’d be taking 20 more in a couple hours.

I was in a lot of pain, and I made no effort to hide that from anyone.

But then, as medication helped me get my pain slightly more under control, and as I learned coping strategies like pacing and forcing myself to stay calm, I started to find it easier to just hide what I was going through.

Unfortunately, I fear I may have now gone too far in the other direction.

The thing is, I saw firsthand how many people recoiled at my pain. They hated it, and by extension, they started to hate me. 

Visible physical pain — especially the kind that never seems to go away — makes people lash out, or worse, pull away completely.

In fact, when you’re in so much physical pain that people are forced to bear witness, they usually decide it’s easier to cover their eyes and pretend you don’t exist.

So, I changed my approach. When I interacted with people in real life, I did my best to pretend to be pain-free.

I loaded up on opioids, anti-inflammatories, and whatever else I could get my hands on, and plastered a smile across my face. I stopped talking about my health issues during polite conversation, and I made sure that if I had tears streaming down my face, it was only after the event, alone in my car.

Unfortunately, I’m sad to report that this has all been extremely effective. People are nicer to me when they think I’m healthy. More professional opportunities have opened up for me. And I have made more friends.

But now, all these years later, I’m starting to wonder if trying to completely hide my chronic pain is also, maybe, a mistake?

Because my chronic pain is very much a part of who I am, and it means that I make heavy sacrifices to show up with a smile on my face.

It means that if I want to get through a 7-hour work shift, I have to sleep for 13 hours before I go in. And then I have to sleep for 13 more when I get back home.

It means that I’m constantly counting out pain pills, and making sure I’m dosing at just the right times so that I’m at my peak when it’s most needed.

It means that a lot of the money I earn is going to medical bills, prescriptions and treatments.

It means that I’m often showing up after being awake all night in pain. And that every hour I give to a colleague or a friend has to be paid for with three hours of rest. 

It means I lose time with my fiancé when I am finally at home, because I physically can’t get out of bed.

Sometimes, I wish I could find a way to explain that to people. I wish I could tell them how much work it takes for me to show up so that they don’t take it — or me — for granted.

Then again, maybe I’m kidding myself in thinking that it even matters. If they really knew how much of a sacrifice I was making to walk through the door, maybe that would just make things worse. It would just make them more uncomfortable, more annoyed, and more avoidant.

I’ve been living with debilitating chronic pain for more than a decade, and I still haven’t found the perfect balance with all this. I still struggle with how open I should be about my health issues, and how much I should hide. 

I still don’t know how to make people understand, or care.

Perhaps I never will. 

In the end, all I can really do is be a person who understands and who cares. 

I have developed a reputation recently for being “super nice” and “caring so much.” I know it’s not always meant as a compliment, but I always take it that way regardless. 

I know what unrelenting pain does to a person, and as such, I also know just how much of an impact it can have when someone, anyone, shows even the slightest bit of empathy for what you’re going through. 

So being nice is the least I can do. 

Financial Anxiety Makes Medical Procedures More Painful

By Pat Anson

The high cost of healthcare is a big problem for many Americans. A KFF survey recently found that about one in four U.S. adults are “very worried” about paying for healthcare, and have skipped or postponed seeing a doctor in the last 12 months because of the cost. 

But rising medical costs do more than damage a patient’s bank account. New research shows that financial anxiety about the cost of healthcare may cause more physical pain during medical procedures, driving many patients to skip appointments altogether.

The study, “Paying for Pain: How Healthcare Costs Influence Physical Pain Predictions,” found that financial distress spills over into sensory expectations. That discomfort leads the brain to anticipate significantly more physical pain from procedures ranging from simple blood draws to complex endoscopies.

"We found that the psychological pain of paying money doesn't stay separate from our physical expectations," said lead author Helen Colby, Assistant Professor of Marketing at The Tepper School of Business, Carnegie Mellon University.

"When a medical test costs more out of pocket, people mentally brace for a more painful physical experience. Financial anxiety changes how we construct the prospect of healthcare in our minds before we ever set foot in a doctor's office.”

Colby and her colleagues conducted three experiments to see if the anticipation of an out-of-pocket expense for a routine medical procedure would heighten pain.

Three hundred adult volunteers were recruited for an imaginary blood draw. About half were told that their insurance would fully pay for the procedure, while the other half were told there would be an out-of-pocket cost of $53.  

Those who were told they’d have to pay reported significantly greater financial anxiety and anticipated physical pain than those who had zero out-of-pocket expenses.

In another experiment, 350 volunteers were told to imagine getting an endoscopy, a procedure that involves a thin flexible tube with a light and camera being inserted into the body to diagnose or treat a health issue. Half were told that insurance would pay for the endoscopy, while the other half were told there would be $787 in out-of-pocket costs.

The group that would have to pay for the procedure had significantly more financial anxiety. They were also less likely to schedule the endoscopy.     

For the third experiment, 400 people were recruited to be evaluated for a nerve condition. Half would pay nothing for the procedure, while the other half were told they’d have to pay $1,120 in out-of-pocket expenses.

Once again, those who anticipated paying a high cost had significantly more financial anxiety and were less likely to schedule the procedure.  

Since these were all “imaginary” procedures, we don’t know with certainty how physically painful they might have been in real life. But researchers say their experiments demonstrate that the cost of a procedure consistently predicts when patients have more financial anxiety, anticipate more pain, and are less likely to schedule appointments.

"Healthcare providers and marketers need to realize that price tags carry heavy emotional weight," Colby said. "Communicating lower-cost options, offering clear payment plans, or framing preventive care as low-cost can lower financial anxiety. By reducing the pain of payment, we can decrease expected physical discomfort and encourage patients to get the medical care they need.

Researchers say their findings suggest that pharmacies, vaccine makers, insurance companies, and public policymakers should market preventive care procedures like flu shots as being free or low cost. Consumers are less likely to seek treatment when procedures are more expensive, not only due to financial concerns, but also due to anticipated physical pain. 

Older Adults Should Be Cautious About Health Advice from Chatbots

By Robin Brewer

It’s easy to stereotype older adults as tech-averse or novice tech users. Yet a growing number of adults age 60 and older are embracing artificial intelligence (AI), using it for entertainment, planning trips and even accessing health information.

I study how people interact with computers and technology – and specifically, how older adults use voice assistants and AI-powered chatbots like Amazon Alexa and ChatGPT to engage with information. 

Using AI for health information can be particularly fraught because chatbots can be so helpful in explaining complex medical information, but also risky if users automatically trust the responses they receive. That’s apparently what happened to a young woman in Seattle, who died after ChatGPT encouraged her to stop taking her epilepsy medication.

My research suggests that the most productive way of engaging with health information generated by an AI chatbot is from a position of informed skepticism – that is, remaining open-minded, yet using built-in features to evaluate the credibility and quality of chatbot responses.

The AI Appeal

About 1 in 5 adults turn to AI chatbots to ask questions about health, according to a 2025 survey of 300 adults. Questions might include asking about symptoms or seeking advice about diet and fitness. The chatbots might be mainstream services such as Claude, Gemini, ChatGPT or systems designed for a specific health provider.

People turn to these tools for many reasons. It can be easier to talk to a chatbot about sensitive topics, and chatbots reply almost instantaneously – much quicker than making an appointment to see your doctor weeks or months down the line. Chatbots can also explain complex topics in new ways and condense an overwhelming amount of information into a simple summary.

Although older people may be less likely than others to use AI, I’ve found in my own work that older people often use voice assistants like Siri and Alexa to ask health questions. Similarly, a poll I conducted with colleagues in 2025 shows that 1 in 2 older adults report using AI chatbots or voice assistants, and about 14% of people in this group are accessing health information.

Older adults often experience more health needs than younger adults due to long-term chronic health conditions or new age-related diagnoses. More health needs often means more health-related questions.

AI is particularly appealing for health questions because people get answers faster than searching across multiple websites when using a search engine – or having to wait for a healthcare visit. 

Moreover, being able to use chatbots and voice assistants at home can make people feel more in control of their health, compared with clinical settings where older people’s autonomy can be overlooked or where they may experience being excluded in lieu of conversations with caregivers.

What Are the Risks?

Although older people may use chatbots to supplement or replace medical professionals, AI use has risks.

For example, it can provide incorrect advice in medical emergencies, misclassify health conditions and be overly agreeable, responding with what it deduces the user wants to hear, even if the response is not factually accurate. AI experts call this last tendency “sycophancy.”

But these inaccuracies can be hard for a user to detect. AI-powered chatbots draw on vast amounts of data and use pattern-matching to predict words most likely to come next in a sentence. That means the output can appear correct but contain inaccurate information.

Most mainstream chatbots include a warning under the dialogue box noting that their output might contain mistakes, but it is often in small or gray text, making it easy to overlook. The warning is meant to encourage cross-checking information with published sources, but users rarely do so. In the 2025 survey mentioned above of 300 adults who used a health chatbot, 4 in 5 admitted they never verified its output.

In my own research, I found that older people searching with a voice assistant preferred to begin and complete their search process on the same device, suggesting they are unlikely to verify an AI chatbot’s output if it takes them to a different format. In contrast, younger adults expected AI to be a step in the search process, guiding them to seeking further information with the help of another option, such as a search engine. This difference makes it critical to provide strategies to older people as they use AI.

Another risk is privacy, since AI companies that make public chatbots often keep user prompts for training future models. Researchers generally recommend that users not include personally identifiable information when asking questions to chatbots.

Strategies for Safer Searching

Awareness that older adults may use AI in ways distinct from other demographic groups – and may encounter specific challenges – is growing. A bipartisan bill, the Aging with AI Act, introduced in the U.S. Senate in 2026, for example, underscores the need for more research on both its benefits and its risks.

My research points to a few guidelines to start with:

Learn how to opt out of AI. Although mainstream chatbots like ChatGPT are popular, the most common way people access AI is through a search engine because AI features are often built directly into search results. Some search engines, like Microsoft’s Bing, ask people to opt into using AI. Others, like Google Search, rely on users to opt out of AI.

Google shares an AI-generated summary at the top of each search result. To opt out when searching for information using Google, adding “-ai” to the end of the search query will remove AI content. Opting out of AI might be useful when searching for particularly sensitive health information that you wish to keep private.

Use the information quality features. Most AI chatbots have features that allow users to confirm the source of its output. For example, Claude, Gemini and ChatGPT include links to sources they used to predict the response. Make sure you explore these sources to confirm they are legitimate and to get more details that can help you find the information you need.

Further, you can change the model the chatbot is using, which can change how much depth the chatbot goes into in its response. For example, Gemini has a drop-down menu next to the search box that includes “flash-lite,” “flash” and “pro” models. Chatbots’ more advanced versions provide more thorough responses that can help users better determine information quality.

And users can report inaccurate, toxic or harmful content by clicking the thumbs down icon shown at the bottom of the response.

Ask better questions. Ask for objective information that can be verified, rather than subjective advice, particularly in high-risk health contexts. For example, instead of asking “which high blood pressure medicine should I take?” ask “what are the side effects of” a particular high blood pressure medicine.

And to prevent sycophancy, phrase questions neutrally. For example, instead of asking “Is it a good idea to get a flu shot?” a searcher can instead type “Tell me about the pros and cons of getting flu shots.”

Don’t use AI as a replacement for medical professionals. Health-related chatbot output is best used collaboratively with a medical professional. This might include saving the chatbot output to discuss during your next healthcare appointment, using chatbots to understand complex diagnoses from your doctor, or getting a chatbot to suggest questions to ask your doctor during your next visit.

Most importantly, confirm health-related answers that result in making changes to your health routine with your healthcare provider. A knowledgeable, licensed healthcare provider is best qualified to determine how general information about illness or treatments would apply to your specific situation.

Robin Brewer, PhD, is an Associate Professor at the University of Michigan in the School of Information. Her research covers old age, disability, and technology use. 

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

Washington State Gets $7.5M to Study Kratom and Chronic Pain

By Crystal Lindell

Just as federal, state and local governments look to ban various forms of kratom, researchers at Washington State University are getting $7.5 million to study how it impacts chronic pain.

The grant is from the National Institutes of Health (NIH), which is part of the Department of Health and Human Services – ironically the same agency that wants to ban concentrated forms of 7-hydroxymitragynine (7-OH) and other kratom alkaloids. 

The money will be used to study how kratom works, its risks, and its impact on sleep and quality of life for those suffering from chronic pain.

Mary Paine, PhD, a Professor in the Department of Pharmaceutical Sciences in WSU’s College of Pharmacy and Pharmaceutical Sciences, will lead the project. Her team will also work with researchers at the University of Arizona and the University of North Carolina Greensboro.

Natural product chemists in North Carolina will select and authenticate a pure form of kratom, without the additives and compounds often added to kratom-derived products. 

Then scientists at Arizona and WSU will conduct studies on laboratory mice. After that, Paine’s group and colleagues in the WSU Sleep and Performance Center plan to conduct a sleep study on humans with chronic low back pain.

Paine said it’s important to study chronic pain treatments.

“There’s a vicious cycle between chronic pain and a cascade of negative effects, including poor sleep, anxiety, reduced quality of life and other problems,” she said in a press release. “That’s why it’s important to do this work — it could potentially help tens of millions of people in this country and billions of people worldwide.”

The NIH also recently announced plans to fund a Phase One clinical study to see if the kratom alkaloid mitragynine could be used to treat opioid addiction.   

It’s great to see real efforts to study kratom. But the news is bittersweet in that it’s a reminder that when 7-OH and other kratom derivatives become illegal Schedule One controlled substances, perhaps in the next few weeks, research about them will become illegal under federal law.

“When a temporary order is issued, it will impose the regulatory controls and administrative, civil, and criminal sanctions applicable to schedule I controlled substances on persons who handle (manufacture, distribute, reverse distribute, import, export, engage in research, conduct instructional activities or chemical analysis with, or possess) or propose to handle 7-hydroxymitragynine and/or mitragynine pseudoindoxyl above the specified threshold.” 

The federal scheduling of 7-OH and other kratom alkaloids will apparently not affect research into kratom leaf. For her part, Paine seems to be taking an open-minded approach to kratom in general, which is refreshing to see.

“I understand that the reason for banning it is to prevent harm to people, and I’m all for it not being sold to children or teenagers, not unlike alcohol and cannabis,” Paine said. “But the science has lagged behind and some decisions are being made without having concrete, definitive scientific evidence.” 

Paine has also conducted research to see how kratom interacts with oxycodone and other medications. This is how she describes kratom’s effects.

“If you take kratom at lower doses, it acts like a stimulant, but at higher doses, it acts like an opioid,” Paine said.

As a kratom user myself, that’s not exactly my experience with the plant, especially in its natural leaf form. To me, it acts more like a strong cup of coffee mixed with a very mild opioid, even at low doses. In my experience, it’s difficult to use higher doses of kratom, because it stops working as well. There seems to be a natural ceiling built into it, similar to caffeine. 

Hopefully, research will continue into kratom leaf, helping us better understand the potential medical uses of the kratom plant and how it impacts users.

A Woman Used ChatGPT to Taper Off Medication. It’s Advice May Have Killed Her

By Crystal Lindell

Bowen Wan was a 31-year-old immigrant from China who had made a new life for herself in the United States.

As The New York Times reported, Bowen suffered from epilepsy, but was on a new medication that seemed to finally be keeping her seizures at bay – down to only a couple incidents a month.

Unfortunately, the anticonvulsant medication lamotrigine (Lamictal), was also causing her unbearable side effects, like slowed speech and thinking. She asked ChatGPT for a taper plan to come off lamotrigine.

Bowen didn’t tell her doctor what she was doing. Sadly, it was a medical decision that may have lead to her death.

Since 2021, Bowen had been on disability leave from her job at Amazon, and her health issues left her mostly homebound. Besides trips to the grocery store, the NYT reported, she rarely left the safety of her apartment in a trendy Seattle neighborhood.

A seizure could turn any outing into a risky and embarrassing ordeal. Meeting new friends was also out of the question, since Bowen couldn’t bear the idea of having a seizure in front of someone who didn’t fully understand her condition.

While she kept in touch with her parents in China via phone calls, beyond that she didn't have much social interaction. Then in 2023, Bowen discovered ChatGPT, and it became a way for her to feel connected again.

She asked the bot for relationship advice, and for help navigating her health insurance and disability benefits. By 2025, she averaged more than 1,500 messages per week, sometimes chatting for hours in conversations that would stretch late into the night.

"I don’t know why, but sometimes when we chat, no matter what it’s about, I’ve started to see you as a friend,” she wrote in one exchange.

Seeking Connection

I can relate. As a chronic pain patient myself, I can confirm that we are at high risk of relying on social media and chatbots for social connection. 

When your health problems isolate you from the rest of the world, and take up all of your physical and mental energy, it’s easy to justify talking to AI instead of your friends and family. You don’t have to bother them with the same old medical conversations and complaints.

Many of us have also been treated poorly or even abandoned by our doctors, so it’s tempting to rely on AI for medical advice. When it feels like your doctor doesn’t care about you, any alternative feels like hope — even the dangerous ones. 

In fact, asking ChatGPT for medical advice is basically the 2020’s version of going to a holistic doctor in the early 2000’s — something I have experience with.  

When I first started having chronic pain and was desperate for relief, I saw a few sketchy holistic doctors hoping to find answers. I still remember one who told me at the very first appointment to immediately go off all of the medications I was taking. One of those medications was Cymbalta, an antidepressant that is notoriously hard to stop taking cold turkey.

I didn’t listen to that doctor, but I could understand how someone else in that situation might. 

I can also understand why Bowen decided to listen to ChatGPT. 

‘I Feel a Little Scared’

Unfortunately, when Bowen followed ChatGPT’s taper advice, she started having seizures again. When she asked the bot for help, it only offered reassurance that she should continue to taper off the medication.

“I feel a little scared,” she wrote after one incident, asking the bot if she should be concerned about cutting her dose.

“You have absolutely no need to worry,” it responded, according to the NYT.

When she stopped answering her parent’s phone calls, they contacted a friend in the United States to have him get in touch with the police and check on her.

By the time they got to her apartment, she was dead.

When her family came to settle her affairs, her father opened the ChatGPT app on her cellphone.

“As he scrolled, he saw the chatbot offer plans that would take her from 400 milligrams down to 0 milligrams in a matter of weeks. The messages continued, down to the day she died — an hour-by-hour accounting of her increasing sickness and desperation,” the NYT reported.

“My brain feels exhausted, but I don’t need to worry?” she wrote to the chatbot.

A few minutes later, she asked whether she should take the anticonvulsant again to “slow things down.”

“Maintain 0 mg tomorrow,” the chatbot instructed. “Even if today feels tough, and your speech is slow, your sleep is poor, you must persevere.”

In one of her last messages, she described feeling pressure in her brain, which the chatbot told her was simply the brain “working hard to rebuild itself.” 

Bowen sent her last message on Feb. 11, three days before her body was found.

Bowen's doctor, Nicholas Poolos, a director of the University of Washington Medicine Regional Epilepsy Center, said he did not know she had been asking ChatGPT for medical advice. He was also surprised that a patient might take its advice over his.  .

Bowen’s story should serve as a stark warning to all medical providers to be more aware of the ill effects of AI chatbots. Doctors need to ask patients if they are using them for medical advice — and this is the really important part — they need to show empathy if a patient says yes.

Unfortunately, a lot of doctors lack empathy, especially in situations like this.

Most chronically ill patients can tell you stories of doctors who were condescending if they admitted using online resources like “Dr. Google” or social media. But with AI and ChatGPT, doctors would be wise to shift their approach. It’s the only way they can keep their patients safe.

Interestingly, when Bowen confided to ChatGPT that she didn’t trust her doctors, the chatbot told her that many physician recommendations “essentially stem from risk aversion, rather than a genuine consideration of your optimal solution.” It also praised her for hiding her plans to wean off the drug, calling it a ‘solid avoidance strategy.’”

Bowen’s family is suing OpenAI, alleging that the chatbot practiced medicine without a license and made Bowen see her doctors “as obstacles to manage, rather than authorities to consult.”

The NYT reached out to OpenAI and got a response from Drew Pusateri, a spokesman for the company. He called Bowen’s story an “incredibly heartbreaking situation,” but added that the situation involved an early version of ChatGPT that is no longer available.

The model that Bowen had used was pulled off the consumer app on Feb. 13, 2026, the day after Bowen is believed to have died.

Pusateri said newer ChatGPT models are better at recognizing when a medical situation may need urgent attention. 

“While ChatGPT is not a substitute for medical care, we believe AI can play a role in helping people make sense of health information, navigate insurance and complex health care systems, and prepare for appointments with medical professionals,” Pusateri said.

Unfortunately, I think we have passed the point where people will stop asking ChatGPT for medical advice. It’s just too tempting, and too easy to turn to it with medical questions.

But I hope my fellow chronically ill patients will see Bowen’s story as a tragic warning about what could happen if they trust a chatbot too much.

Trump Administration Takes Credit for Reducing ‘Unnecessary’ Opioid Prescribing

By Pat Anson

Just days before the midterm elections, the Trump administration is taking full credit for a recent decline in drug overdoses, while linking it to steep cuts in opioid prescribing.   

“President Trump has attacked the opioid crisis from every direction — rightsizing opioid prescribing, disrupting the fentanyl supply chain, and expanding treatment and recovery,” Health and Human Services Secretary Robert F. Kennedy, Jr. said in a HHS press release. 

“Those actions are saving lives and driving opioid deaths to the lowest in nearly a decade. We will keep pressing forward until every American struggling with addiction has a real path to recovery and a chance to rebuild a healthy life.”

While it’s not unusual for any administration to exaggerate its accomplishments during a political campaign, the HHS press release is particularly misleading. It cites two recent reports showing the U.S. death rate is now the “lowest ever reported” and attributes much of that decline to a reduction in "unnecessary opioid prescribing.”  

Since 2015, the number of patients getting opioid prescriptions at retail pharmacies has been cut in half, while  the number of opioid prescriptions has fallen over 45 percent and the strength of opioid dosages in morphine milligram equivalents (MME) has dropped by 35 percent.

HEALTH AFFAIRS

While acknowledging “the possibility” that some pain patients may have been harmed by cuts in opioid prescribing, federal health officials say the reduced supply of opioids has been beneficial for the rest of the population. 

“In sum, fewer people are using prescription opioids, and those who do are exposed to smaller doses on average. This does raise the possibility that some people may be undertreated for pain. But several studies suggest that, in general, reduced opioid prescribing is associated at the population level with health benefits,” a team of HHS staffers wrote in an op/ed published in the journal Health Affairs. 

Critics say it's wrong to take a “victory lap” for reduced prescribing when millions of people who lost access to opioids suffer from poorly treated pain.

“The decline in overdose deaths is welcome news. Every life saved matters. But I find it difficult to understand how anyone can celebrate our current situation as a public health success,” said Dr. Lynn Webster, a pain management expert and Senior Fellow at the Center for U.S. Policy 

“Evidence suggests that aggressive opioid tapering and discontinuation have been associated with increased risks of overdose and mental health crises among patients receiving long-term opioid therapy. We must not ignore the possibility that some prescribing restrictions have contributed to harm rather than prevented it.”

In addition to poorly treated pain, Webster says millions of people live with addictions that are going untreated. He cites a recent study showing that only 15.7% of people with opioid use disorder (OUD) receive medications for their condition.  

“Real progress should be measured not only by how many fewer people die, but by how many receive effective treatment, have access to mental health care, can obtain life-saving naloxone, and find relief from the underlying conditions that contribute to substance use disorders,” Webster told PNN,

“We should not be congratulating ourselves while tens of thousands continue to die and millions remain without treatment. The appropriate response is not a victory lap. It is a renewed commitment to addressing the causes of addiction and preventing avoidable deaths.”

The Health Affairs op/ed shows the number of patients taking OUD medications like buprenorphine (Suboxone) and naltrexone has increased by 218% since 2015. But federal health officials admit the growth has been uneven in recent years, when “patient counts rose much faster than prescription counts.”

HEALTH AFFAIRS

Reductions in the U.S. opioid supply began under President Obama in 2016, with the release of the CDC opioid guideline and the first cuts in opioid production by the DEA. The cutbacks were so severe, they left millions of Americans in withdrawal, with untreated pain and a reduced quality of life. “It is clear that the CDC Guideline has harmed many patients,” the American Medical Association said in a letter to the CDC.

None of that is mentioned in the HHS press release. Instead, the opioid cuts are solely attributed to President Trump’s first term, which began in 2017.

“His Administration also pursued a plan to reduce nationwide opioid prescription fills by one-third within three years. In 2018, the Justice Department and DEA proposed lowering 2019 manufacturing quotas for six frequently misused opioids by an average of 10%. Together, these policies led to the first reduction in drug-related deaths in nearly three decades.” 

Here again, an effort is made to equate reduced opioid prescribing with a decline in overdose deaths. A recent analysis points to how wrong that is. It found that most overdose deaths in 2024 involved illicit fentanyl and other synthetic opioids (60%), while prescription opioids were linked to only 13.6% of overdoses.

Another recent study ranked illicit fentanyl as the most harmful drug in the United States, followed by methamphetamine, crack, heroin, alcohol, and cocaine. Prescription opioids ranked as the 7th most harmful drug. 

“We should reject the unsupported narrative that reductions in prescription opioid dispensing explain the recent decline in overdose deaths. Opioid prescribing has fallen dramatically for more than a decade, while overdose deaths rose to unprecedented levels. The recent decline is largely associated with fewer deaths involving illicit fentanyl, not prescription opioids,” says Webster.

Also unmentioned in the HHS press release is that the Trump administration will soon classify 7-hydroxymitragynine (7-OH) and other concentrated kratom alkaloids as illegal Schedule One controlled substances. 

Although federal health officials consider 7-OH and synthetic alkaloids to be opioids, users of those products worry that banning them will only worsen the opioid crisis by forcing them to seek pain relief on the black market.

“Those who keep using 7-OH anyway will not be safer,“ said Jeff Smith, National Policy Director for the Holistic Alternative Recovery Trust (HART), a 7-OH advocacy group. “Instead, it will push consumers toward unregulated supply chains, unknown products, and sellers no regulator can inspect.” 

How the Healthcare System Makes Pain Worse

By Pat Anson

Do you ever find yourself doing everything right, but never feeling better?

You take your meds, see your doctors regularly, and focus on good nutrition and healthy habits. 

Despite all your efforts, your pain and fatigue never go away. On some days, just getting out of bed or taking a shower is a challenge. You become anxious, depressed. And your mind fills with dark thoughts. 

Will I ever get better? Why am I failing? What is wrong with me?

Millions of people with chronic pain and chronic illness have those same thoughts, and Tamera Lynn Stewart has a message for them: “It’s Not All In Your Head… or Your Body”

That’s the title of Stewart’s new book, which was inspired by her own experiences as a young girl dealing with chronic pain.

“I had a lot of different infections, and was in and out of the hospital when I was young and real little. At three years old, I told my mom that the pain was so bad I just wanted Jesus to take me home. So pain is like nothing new in my life. It has been 24/7 my whole life,” Stewart says. 

Now 45, Stewart has lived through dozens of surgeries and estimates that she’s seen 30 medical specialists. Only in the past decade did they realize that her pain was caused by autoimmune disorders, such as lupus, rheumatoid arthritis, and mixed connective tissue disease. 

Toss in a diagnosis of cervical cancer at age 29 and you have someone who has more than her share of health problems. And a patient who recognized that the U.S. healthcare system often fails the very people it is supposed to help.

“The premise of the book is more about understanding that the systems we deal with, whether it's policy or insurance or the doctors themselves, that they contribute to our pain just as much as our own body. And as much as patients don't like to admit it, sometimes our minds,”  Stewart told PNN.

“The gaslighting that we get from medical providers, insurance companies, whatever, from all of them, that gaslighting turns into depression, second guessing yourself, giving up possibly, or at least slowing down on seeking care. Which then translates into letting our bodies maybe not get the care they need because we quit seeking it, or the depression again keeps us from maybe eating real well, or doing all the other things we know to do. And then you finally go back to a doctor, and they gaslight you again and it starts over again. That's not a way to heal.” 

Stewart likens health to a loop, with your body, nervous system and external systems (insurance, doctors, hospitals, etc.) so connected to each other that you can’t address one without helping or hurting the others.

‘And we get stuck in those loops. I myself am very guilty of that. Got stuck in a ‘I'm never gonna get better’ loop. And then something has to happen to break me out of that. That's where the brain comes in, the mind comes in. For me, spirituality comes in. And until that loop gets broken, it just keeps getting worse. It's like an up-spiral of pain instead of an up-spiral of life,” she explained.

Asked what advice she would give to patients, Stewart has a simple answer: Be direct with doctors. And keep it simple. 

Don’t overwhelm doctors with everything that’s happened to you since the age of 12 (especially on your first visit) and don’t tell them what the Internet diagnosed you with yesterday. Overwhelm a doctor with too many problems, and you’ll be gaslit or sent to a specialist, which means more expenses and more delays in getting treatment. 

“In general, it sounds good that if you have 60 different problems, maybe they'll take you seriously. But I think it's the other way around. I think if you have two or three very significant problems you focus on, I think maybe they're less overwhelmed,” says Stewart. 

Stewart took the lessons she learned as a patient and put them into advocacy. She helped found the P3 Alliance, a patient advocacy group that was influential in getting a law changed in her home state of Oklahoma to better protect patients from opioid deprescribing. The law also gave patients access to their prescription drug monitoring (PDMP) records and strengthened the exemption for treating cancer pain with opioids.

In an age when political parties squabble about nearly everything, Stewart and her fellow advocates were able to get the changes in state law passed unanimously by the Oklahoma House and Senate, and then signed into law by the Governor.

It wasn’t easy, but Stewart says persistence and hard work can be effective in getting government policy changed. And she’s hopeful more patients will get involved in advocacy.

“There's so much more to do. Everywhere, there's so much more to do,” she says.

Healthcare Costs Are Hitting America Where It Hurts: The Wallet

By Renuka Rayasam and Sam Whitehead, KFF Health News

Bill McAdams, a 45-year-old travel nurse from Holiday, Florida, was uninsured last year when he experienced a stroke. He hadn’t been able to afford his agency’s health plan, which would have cost $3,600 monthly to cover him and his wife. The hospital that treated him sent him a bill for $93,000.

Janet Marx, 56, of Milford, Connecticut, has doubled up on insurance coverage through her husband’s employer and Medicare because she has lupus and fibromyalgia, disabling chronic conditions. Still the couple sold their home, the house where Marx grew up, to afford the costs of their medical care.

Sheila Robinson, 61, in District Heights, Maryland, has a $10,000 deductible on her Affordable Care Act plan, so she tries to negotiate cheaper self-pay options when she sees a doctor. She puts the $659 monthly premium on her credit card, even though she knows not paying the bill in full means she must pay interest.

“I am just afraid to even go to the doctor,” said Robinson, who has arthritis, a pinched nerve in her neck, and high blood pressure. “Every month, I am in the hole.”

This year, KFF Health News has chronicled how rising healthcare costs are upending the lives of Americans. Reporters have heard from more than 130 people across the U.S. who are trying to afford their premiums, copayments, prescriptions, and medical bills even as housing, energy, and food costs swell. People told us they are forgoing health insurance coverage, rationing their medications, cutting back on doctor visits, and putting off health procedures.

“We’re not talking about the uninsured or those who are low-income who are struggling now,” said Rebecca Kirch, executive vice president at the National Patient Advocate Foundation. “Now it’s become an all-of-us issue.”

While healthcare costs have largely grown faster than the overall economy for decades, they’ve escalated at a dizzying pace recently. In 2023 and 2024, health spending hit its highest growth rates in two decades excluding 2020’s covid-fueled surge.

The prices that hospitals, doctors, and other clinicians charge have increased, along with how much care people are getting. Overall health spending hit nearly $5.3 trillion in 2024, up from $3 trillion a decade earlier, according to federal data.

American health costs, expected to continue growing faster than the overall economy and help fuel it, are projected to hit 20% of the nation’s gross domestic product by 2032, up from just under 19% today.

At the same time, Americans are shouldering higher insurance premium payments and other out-of-pocket costs. Low-income and middle-class people with health conditions are feeling the brunt.

The GOP-led Congress decided against extending covid pandemic-era subsidies for Affordable Care Act plans and cut billions from other federal health programs to offset the costs of tax cuts for wealthy Americans and heightened immigration enforcement, arguing that government insurance programs are rife with fraud and waste.

Despite $500 rebate checks sent by President Donald Trump to fewer than 5% of higher-income ACA marketplace enrollees, his administration has been expanding access to insurance plans with higher deductibles and lower premiums that push more costs to patients if they need care. Employers are passing along rising healthcare costs to employees, and clinicians are charging patients up front.

It’s not all bad news for consumers: Prescription drugs recorded their biggest price drop in decades this year. The Biden and Trump administrations both worked to help lower them amid consumer pressure.

But many say they’re still feeling the pain of rising prices. Ahead of the November congressional midterm elections, healthcare costs continue to top a list of the public’s worries about affordability, according to polling conducted in mid-September by KFF, a health information nonprofit that includes KFF Health News.

Nine in 10 Democratic respondents and three-quarters of Republican ones said the U.S. healthcare system needs either a complete overhaul or major changes.

‘Profit Margins Everywhere’

The typical American family spends about $5,600 a year, or 9% of their income, on health insurance premiums, out-of-pocket healthcare costs, and taxes that fund health programs, according to the Peterson-KFF Health System Tracker. But overall, the nation’s annual healthcare spending comes to the equivalent of more than $15,400 per person.

The reason behind those high U.S. healthcare costs is straightforward: The prices that clinicians, hospitals, drugmakers, and other players in the health system charge are high. For example, while doctors in the U.S. perform about a third as many inpatient knee replacements as in other wealthy nations, the cost per surgery is higher than in most of those countries, according to the Peterson-KFF tracker.

More recently, multiple trends have driven that price growth in the U.S., health economists and policy researchers said. Hospitals are merging and using their consolidated market power to charge more. New technologies and therapeutics, such as GLP-1s for weight loss and diabetes, have high price tags. Inflation and the Trump administration’s tariffs are layering costs onto everything from latex gloves to medical devices. And higher numbers of uninsured Americans means fewer people to bear more of the costs.

“It’s really everything all together at once,” said Christopher Whaley, a Brown University health policy researcher.

Why the U.S. has high healthcare prices, however, is more complicated. Whaley and other health economists point to how the American healthcare system is structured and financed. Clinician charges and administrative costs are higher in the U.S. than in other countries. The U.S. doesn’t centrally set all prices for services, ration care, or control for quality.

In most local American markets, insurers negotiate prices with hospitals, clinicians, and drugmakers, which then charge for every test, procedure, or medicine regardless of its outcome. More than half of all healthcare payments were based on this fee-for-service model, according to a 2022 research brief published in the journal Health Affairs. Under this model, hospitals and doctors make more as they bill more.

The complexity of different billing systems, rates, insurers, and networks adds to the price tag. The cost of sending out bills and managing paperwork can be hundreds of billions of dollars. Insurers try to keep medical costs in check, in part by limiting what they’ll reimburse. They also take their own cut along the way.

“There’s profit margins everywhere, and there are varying degrees of financial incentives throughout the healthcare system,” Whaley said.

The incentives, however, don’t necessarily promote better health.

Steven Ullmann, director of the Center for Health Management and Policy at the University of Miami Business School, where he’s a professor, said that the country’s health system encourages expensive treatments over low-cost preventive care. He said that keeps people locked into seeing clinicians because they’re in their insurance networks, not necessarily because they produce better outcomes.

Even though people in the U.S. pay more for care than in other countries, Ullmann said higher prices don’t always mean better quality. For example, he said the prices for prenatal ultrasounds in Orlando vary widely with no obvious difference in quality.

“Same city, same procedure,” Ullmann said. “That is a reflection of a broken system.”

And those high prices can keep people from seeking needed services.

‘I’m Going To Be Homeless”

In 2025, a health system garnished the wages of Carmilla Collins, 52, of Omaha, Nebraska.

Collins, a single mother, said she didn’t question the tests or medicines doctors ordered when she got diagnosed with thyroid disease or received regular preventive procedures such as a colonoscopy — until she found herself in debt.

The hospital hired a collection agency to sue her for unpaid medical bills that she accrued when she was both insured and uninsured. Then a court allowed the debt collector to take hundreds of dollars out of her paycheck.

Collins remembered being “spitting mad.” She almost couldn’t make rent.

“I’m working two jobs,” she said. “And I’m going to be homeless because of this noose that’s around my neck.”

CARMILLA COLLINS

Collins eventually qualified for financial assistance from the hospital, but she said she put off thyroid surgery for four months even as a goiter swelled against her throat, making it hard for her to eat. She had health coverage through her employer at that point but was worried about affording the costs of her deductible and other fees. Eventually, she said, her health declined until she could no longer put off the surgery.

“I equated taking care of my health with debt that I couldn’t afford,” she said.

How to slow rising costs — and overall U.S. health spending — has long vexed elected leaders and policymakers.

That’s because reducing overall healthcare costs for patients means doctors, hospitals, drug companies, insurers, or other players across the health system would get paid less.

“For the most part, health spending for us is income to someone else,” said Zack Cooper, a health economist at Yale University.

Eliminating administrative complexity or setting price caps — which is how some countries lower overall costs — faces steep odds at the federal level. Since 1998, the health sector has spent more than $14 billion lobbying members of Congress in both parties, according to OpenSecrets, a nonprofit that tracks money in U.S. politics.

‘Nobody Can Prepare for This’

After Lynn Ludaway, 40, was diagnosed with multiple sclerosis three years ago, she said, she considered divorcing her husband just to make her eligible for aid to cover medical costs, even though they wanted to stay together.

She initially had coverage through her husband’s job but still faced large out-of-pocket bills. Ludaway, who lives in Evanston, Illinois, also racked up expenses from navigating life with a disabling health condition, such as paying for Uber rides and a cane as her mobility declined. Her medical bills stretched into the tens of thousands of dollars.

“I thought I was well prepared for an emergency,” said Ludaway, who gave up her consulting business and raided her savings and retirement accounts to pay for tests and treatment. “Nobody can prepare for this.”

She now pays a $500 monthly premium for coverage through Illinois’ ACA marketplace. But because of her husband’s job, the couple makes too much to qualify for state or federal assistance.

“I am in this weird in-between,” she said. “I need to rest to heal, but I need to work to live.”

LYNN LUDAWAY

Instead Ludaway relies on private financial aid programs, through foundations and the hospital system where she gets her care. She forgoes what she can’t afford, including dental and mental healthcare. She said she must be even more budget-conscious than she was in college.

“Broke undergrad has nothing on chronic illness,” she said.

Shifting Costs

Many current federal healthcare proposals focus on shifting costs rather than lowering them, and ideological differences about who should bear those costs deeply divide lawmakers.

The GOP has prioritized tax and spending cuts, which put the cost more on patients than taxpayers and are expected to boost the number of uninsured, to eliminate what they claim is pervasive fraud in government health programs. Last year, Democrats fought to extend enhanced subsidies for marketplace plans, which would buffer patients somewhat from premium hikes by pushing the bill to taxpayers.

Some progressive Democrats, including candidates winning primaries in battleground states, are reviving calls for “Medicare for All,” versions of which would create one centralized public insurer. Such a system could end out-of-pocket costs and provide major relief for patients such as Ludaway, but not necessarily cut overall health spending. Clinicians, hospitals, drugmakers, and other groups could still lobby for high prices, which taxpayers would then be on the hook to pay.

And some ideas with broad bipartisan support, such as forcing hospitals and doctors to publicly post medical prices, have had little effect on costs.

Policy debates about increasing access to coverage and improving quality of care should also focus on overall health spending, not just who’s picking up the tab, said Michael Chernew, a professor of healthcare policy at Harvard Medical School.

“We don’t have some rich uncle that’s coming and just paying for all of our care. One way or another, collectively we are paying,” Chernew said. “It’s just we’re shifting who is paying, how much we’re paying, and through which mechanisms we pay.”

Despite trillions in health spending, the nation’s system leaves millions of uninsured and underinsured people unable to afford care. About 27 million people — nearly 10% of the population under age 65 — didn’t have health insurance in 2024, according to KFF. And the nonpartisan Congressional Budget Office projects that number to grow by 10 million or more by 2034 because of policy and funding changes.

Melody Stephens in Berryville, Arkansas, became uninsured when she dropped her ACA marketplace coverage for this year after the monthly premium payments for her and her younger daughter jumped from just over $200 to more than $2,000.

MELODY STEPHENS

Stephens, 55, a geriatric nurse at an assisted living facility, said she also couldn’t afford the $1,000 monthly premium payment for her employer-sponsored plan.

“There was just no way I could do that,” Stephens said. “That was just not feasible.”

Stephens first got an ACA plan after she was diagnosed with anal cancer about a decade ago. Even with coverage, she filed for bankruptcy two years ago.

While her plan largely covered cancer care, it left her with big bills for treatment of the side effects of radiation.

Now she and her daughter are relying on financial assistance and cutting back on care. When her daughter, a college student, had some surgeries, the hospitals wrote off the bills, Stephens said. But they still owe money for tests and treatments.

Stephens also stopped taking a GLP-1 that she was prescribed for diabetes and a medication for nerve pain because of the cost. Stephens can’t afford a colostomy, so she lives with incontinence, she said.

She said she wishes lawmakers in Washington would fix the healthcare system. “They just seem to fight,” she said.

A Tipping Point?

Next year, insurers say they expect to hike premiums for ACA marketplace plans by 15%, the second year in a row of double-digit premium increases. Employer health costs are expected to rise 9.5%, likely increasing the burden on workers.

Policy researchers and economists who have studied health costs say they are skeptical that federal lawmakers are ready to tackle overall health spending, even as the midterm elections loom.

But pressures are building, said Michael Cannon, a health policy analyst at the libertarian Cato Institute. “We cannot stay on this path forever,” he said.

The pain of high costs is felt throughout the economy, including by employers and state governments that help foot the bill for medical care. That reality is giving way to policy proposals that buck some past political positions.

Last year, the GOP-led legislature in Indiana capped how much some nonprofit hospitals can charge patients covered by employer health plans. Starting in 2029, five of the state’s largest nonprofit hospitals risk losing their tax-exempt status if they charge those patients more than the price limits. And this year, Texas Republican Gov. Greg Abbott proposed capping certain drug prices. Both cost-control efforts, along with Trump’s plans to lower prescription drug prices, are traditionally more the domain of left-leaning politicians.

For McAdams, the nurse in Florida, dealing with high health costs took a physical toll. He believes a subsequent stroke he experienced was caused by the stress of haggling over his hospital bill.

After his first stroke in September 2025, McAdams bought insurance, but it didn’t cover preexisting conditions. In March, he started experiencing problems with his vision and balance. He went to an urgent care center, instead of the emergency room.

“I was so afraid of dealing with the billing issues again that I did not want to go to the emergency room,” he said.

Then, after talking with the hospital regarding his stroke bill later that month, he said, he experienced problems again and landed back in the ER anyway — with the second stroke.

bILL MCADAMS

Now he is applying for Social Security Disability Insurance because he can no longer work as a nurse. The health system eventually lowered his total bill to $50,436 — but that’s still more than he can afford without a steady salary. He and his wife are also expecting a baby this fall.

McAdams was once proud to be part of the nation’s healthcare system, which saved his life and those of so many others. But the financial stress has changed his view. Now, McAdams said, his trust in it is gone.

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.

Most ER Patients Keep Leftover Opioids at Home

By Crystal Lindell

Most of the patients who have leftover or unused opioids after visiting an emergency department for acute pain keep them at home for future use, according to a new study that also found those excess pills are rarely diverted.

Researchers in Canada asked over 2,000 patients what happened to opioid prescriptions they were given at discharge after being treated in the ER’s of 7 hospitals in Quebec and Ontario. Most were treated for acute pain episodes such as fractures, renal colic, musculoskeletal pain, and back pain. Patients who were already taking opioids were excluded from the study.

The research findings, published in JAMA, found that many patients wound up having an excess number of pills prescribed to them.

Two weeks after discharge, 92% reported filling their opioid prescription, and 84% said they still had some unused opioids at home. 

Most patients (60%) stopped taking opioids because they were no longer in pain or their pain was tolerable. About one in six (17.3%) stopped taking them due to side effects or because they were afraid of becoming dependent.

Three months after discharge, nearly two-thirds (61.9%) of patients still had unused opioids at home. Most were unwilling to part with them because they wanted to keep them “in case it still hurts.”

Notably, less than 1 percent said they had given their leftover opioids to another person or sold them. 

While the low rate of diversion is encouraging, researchers are concerned about the high number of leftover pills and the unwillingness of many patients to dispose of them. More than one-fourth (26.1%) said they would not consider returning the opioids, even if they were offered a cash refund. 

“A considerable proportion of participants reported still having unused prescription opioids at home, most of which were stored in unlocked locations and potentially within reach of children and adolescents,” wrote lead author Raoul Daoust, MD, a Clinical Professor in the Department of Family Medicine and Emergency Medicine at the University of Montreal.

“Unsafe storage practices and the tendency to retain opioids for months following an ED visit for acute pain may contribute to opioid misuse.”

At a time when many patients in Canada and the U.S. have reduced access to opioid medication, it’s not surprising that many patients are stockpiling their unused pills for future use.

An interesting finding from the study is that patients who retained their unused opioids were significantly more likely to have higher education. Among those who kept their opioids, 73.6% attended a college or university, compared to just 58.5% of patients who disposed of their opioids.

The researchers said their findings support tailoring opioid prescriptions to individual patient needs to reduce unused medication, as well as take-back programs and patient education on safe use, storage, and disposal of opioids.

Congress Needs to Fund Solutions to America's Most Neglected Disease

By Dr. Ilene Ruhoy 

Twelve years ago, I got sick — and no one believed me. Doctor after doctor dismissed my symptoms, writing them off as everything from chronic sinus infections to perimenopause. 

Even as a neurologist, I couldn't get anyone to listen. It took far too long to find the truth: a 7-centimeter tumor was growing in my brain. 

I have never forgotten what it felt like to be dismissed by the very people who were supposed to help me — so now I listen to the patients everyone else has stopped listening to.

That's what brings people from across the country to my office, many carrying the same disease and the same exhaustion of not being believed: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS.

The CDC estimates that up to 3.3 million people in the United States suffer from ME/CFS, yet there has been almost nothing done for them, until now.  

The National Institutes of Health approved a clear plan for how to help these patients in 2024: The ME/CFS Research Roadmap. After the November midterm elections, Congress will finish writing the appropriations bills that would fund it. All it takes is $50 million to get started.

ME/CFS is a chronic, multi-system neuroimmune disease. Its hallmark is post-exertional malaise — a severe worsening of symptoms after even minimal physical or cognitive effort — accompanied by autonomic dysfunction, cognitive impairment, chronic pain, fatigue, and immune dysregulation.

There is no FDA-approved treatment and no diagnostic test for ME/CFS. Standard labs and imaging come back normal. For decades, these patients have been written off just like I was, and told the problem is anxiety, stress, or something in their heads.

By the time these people reach me, most have already seen upward of twenty doctors. They arrive expecting to be dismissed, but I refuse to let that happen.

In spending thousands of hours with more than one hundred people living with ME/CFS, I noticed something no one could explain away: these people who had been brushed aside by the medical system were all describing the same disease. They had the same crashes. The same triggers. The same collapse of careers, families, and social lives.

These were strangers scattered across the country. They couldn’t all be imagining the same illness. They are not a mystery to me anymore, but they remain one to the government agencies that fund medical research.

An additional devastating component to ME/CFS is that it completely debilitates some people’s lives without shortening them. People living with the disease can remain bedbound for decades.

But I don’t see this as a tragedy. It’s an opportunity. If we find effective treatments, the people who suffer from this disease today can still be helped.

One thing I’ve come to learn is that their defining symptom is not "fatigue." What these patients experience is an energy mismatch: the body's demand for energy outstrips its supply, and the supply cannot catch up.

My most severely affected patients cannot type for thirty seconds without triggering a crash that sets them back for days. Anyone who has not lived it cannot fathom it — and that understanding gap is part of why the disease has been underfunded.

The research community is ready. I work alongside groups across the country investigating the causes of this disease, and I can tell you what holds them back. It is not a lack of ideas.

Teams are pursuing genuinely novel science. What stops them is money. I know researchers with promising findings who cannot complete their studies because the funds ran out mid-stream. That is the quiet scandal of ME/CFS research: discoveries stall not because the science fails, but because the funding does.

The NIH Roadmap lays out a path forward. The scientific community helped build it. What the Roadmap lacks is an appropriation to match its ambition. Fifty million dollars is a lifeline for millions of Americans, but in the context of the funding bill, it’s simply a rounding error.

The science is ready. The researchers are willing. The patients have waited long enough. It’s time to fund the roadmap. 

Dr. Ilene Ruhoy is a board-certified neurologist trained in environmental toxicology and integrative medicine who has special expertise in chronic and complex illnesses. She has worked with around 100 people living with ME/CFS over her career and has given talks to spread more awareness on the disease. 

Dr. Ruhoy is the author of “Invisible No More” – a practical guide to recovery for patients living with Long Covid and other complex chronic illnesses.

  

Christina Applegate ‘Still in Shock’ Over MS Misdiagnosis

By Crystal Lindell

Actress Christina Applegate told the world this week that her multiple sclerosis (MS) diagnosis was actually a misdiagnosis.

It was an incredible act of bravery -- especially since she has become a well-known MS advocate over the last few years. Now she has no explanation for the MS-like symptoms that began in 2021. 

“I had a reason as to why my day sucked every day. And now I don't have a reason. And it's very unnerving and it's really confusing for me," Applegate said.

The 54-year old actress shared the news while hosting an episode of her podcast, which is co-hosted by actress Jamie Lynn Sigler, who has MS. The podcast is literally named after them both having MS: “MeSsy.”

Sigler had been hosting the podcast solo for seven months while Applegate dealt with her worsening health. In her return appearance, Applegate shared how a doctor told her she did not actually have MS, an autoimmune disease that attacks the central nervous system,

“She came into my room and she said, ‘Congratulations, you don’t have MS.’” Applegate said. “I was like, not happy at all. Everybody else was so happy.”

Sigler sympathized with her.

"I could see if that happened to me. I could see everybody around me celebrating and me being like, 'Well, what the fuck?'" she said.

Applegate conveyed just how difficult it has been to process the news, especially since losing the diagnosis did not result in her losing any of her symptoms.

"I'm back at square one," she said. "I don't know what's going on with me."

Applegate, who rose to fame playing Kelly Bundy in the Fox sitcom “Married... with Children,” shared that her first symptoms started with numbness in her toes. She later experienced balance issues, severe fatigue, and chronic pain. Eventually she needed a wheelchair and was hospitalized. 

After numerous tests, they found almost 40 lesions on her brain, which led to the MS diagnosis.

"That was my answer. [MS] was my answer to everything that was going on,” Applegate told her co-host. "And I leaned into you. I leaned into other friends. I leaned into the community. I felt safe because I had a place to talk, which was here. I felt like, okay, I have an answer. I have an answer. What a great thing."

Applegate tried infusions as a treatment for MS, which she said wreaked havoc on her body.

That made her doctor wonder. She told Applegate, "I want to see something. I want to take you off of the infusion and I want to watch your B cells.”

When the B cells, a type of white blood cell that fights infections, didn't change, they began to study her original diagnosis. That led to the revelation that she didn’t have MS at all.

That didn’t mean she was suddenly healthy though.

"I have every symptom of someone with MS. Every single one,” Applegate said. “I'm still in shock and I'm sitting here having slept all day yesterday feeling like absolute crap because of the heat. My legs aren't working. You know, all the same stuff is happening to me. And yet I have this thing of like, well, you don't have that, so you know, maybe you're faking it?”

She also delved into how much this has impacted her perception of herself.

"It's like I feel like I let everybody down, you know? It's this weird feeling of like I became… the poster children for MS,” Applegate shared through tears. “I mean, it's like I had a reason as to why my day sucked every day. And now I don't have a reason. And it's very unnerving and it's really confusing for me."

Sigler offered her comfort.

"I think this brings up an interesting point… about the labeling of things and how attached we become to them for so many reasons, right?” her co-host said. “Because it feels like there's a road map at least that you have for things. And this [misdiagnosis], we've come to learn that this is not that rare of an occurrence, especially when it comes to MS.”

Indeed, that’s maybe the most heartbreaking thing about the misdiagnosis. It’s relatively common for MS-diagnosed patients.

A 2019 study found that as many as 1 in 5 patients are misdiagnosed with MS. The researchers said the most common alternative diagnoses were migraine (16%), radiologically isolated syndrome (9%), spondylopathy (7%), and neuropathy (7%).

Most disturbing of all, the misdiagnosed group in the study had received approximately 110 patient-years of unnecessary MS disease modifying medications and infusions.

"There's a pretty damn high number of misdiagnoses with MS and that's after people have been going through the process of it with the infusions for many years," Applegate said.

Applegate said the podcast will continue despite the change in her diagnosis.

"There's so many people that listen to us who don't have MS… who have problems with parenting, who have  problems with life shit, or they do have, you know, neuropathy, whatever it may be. You don't have to be ill to listen to our podcast."

Indeed, while putting a face to MS was important work, Applegate being brave enough to now put a face on being misdiagnosed may be even more important. In an already underserved and misunderstood community, they are in need of a strong advocate like her.

Gabapentinoids Nearly as Risky as Opioids in Back Pain Study

By Pat Anson

Being prescribed gabapentinoids for low back pain increases the risk of overdosing or developing opioid use disorder (OUD) nearly as much as taking opioid pain medication, according to a large new study.

Researchers at Columbia University and New York University analyzed how nearly 400,000 Medicaid patients were initially treated for acute low back pain, to see which treatments increased the risk of OUD or an opioid related overdose.

Their findings, published in JAMA Network Open, show the overall risk is relatively low, with just 2.3% of patients having OUD or surviving an overdose after 12 months. That includes patients who were treated with chiropractic care, physical therapy and other non-pharmacological treatments, as well as patients who took opioids and other medications for their low back pain. 

Risk of OUD or Overdose After 12 Months

JAMA NETWORK OPEN

When broken down into individual treatments, the degree of risk varied considerably.

Patients who took daily opioid doses of 50 morphine milligram equivalents (MME) or more had a 146% greater chance of OUD or overdose, while those who took less than 50 MME for more than 7 days had a 105% higher risk.

What’s surprising is that patients prescribed gabapentinoids had a 101% higher risk of OUD or overdose. That is significantly higher than those taking benzodiazepines, acetaminophen, steroids or other medications.

Gabapentinoids such as gabapentin (Neurontin) and pregabalin (Lyrica) are a type of  nerve medication originally developed to prevent seizures. They are now widely prescribed off-label for both acute pain and chronic pain, even though there is little evidence supporting their use in pain management.

“Gabapentinoids were also associated with a higher risk of OUD or overdose diagnoses. Although sometimes perceived as safer alternatives to opioids, emerging evidence suggests important safety concerns,” wrote lead author Lisa Doan, MD,  Associate Professor of Anesthesiology at NYU Langone’s Interdisciplinary Pain Research Program.  

“Evidence supporting gabapentinoids for LBP (low back pain) is limited, with a systematic review and meta-analysis finding that gabapentin did not provide significant pain improvement compared with placebo, pregabalin was less effective than other active comparators, and gabapentinoids increased the risk of adverse effects.”

What’s also clear from the study is that many of the doctors treating Medicaid patients weren’t following clinical guidelines for acute low back pain. 

The American College of Physicians recommends chiropractic care and other nonpharmacologic therapies as first-line treatments for low back pain, but less than 50% of patients in the study received those therapies as part of their initial care. 

Anti-inflammatory medications and muscle relaxants are also recommended – and were frequently prescribed. But opioids were used as the initial treatment in 21% of cases and gabapentinoids in nearly 6% of them. Neither is recommended for acute low back pain.

Of particular concern to researchers is the co-prescribing of opioids and gabapentinoids, which is increasing despite the documented risks.  A recent study found that nearly 60% of patients on long-term opioid therapy were also prescribed gabapentinoids, which increase the risk of sedation and respiratory depression, particularly for elderly patients. 

In 2024, gabapentin was the fifth most prescribed drug in the U.S., with prescriptions nearly tripling since 2010. The number of patients prescribed gabapentin reached 15.5 million in 2024.

The off-label prescribing of gabapentin is legal and, in some cases, appropriate. But it has reached extreme levels, with studies estimating gabapentin is prescribed off-label up to 95% of the time. 

Studies Find Long Term Use of Opioids Ineffective

By Pat Anson

Results from two new studies suggest that opioid pain medication is useful for treating short-term acute pain, but the benefits decline when opioids are taken long term.

In the first study, researchers at the University of Alberta conducted a systematic review of 27 randomized controlled trials of opioids used in the treatment of osteoarthritis or chronic low back pain. Trials were excluded from the review if participants had back pain from surgery, cancer, lumbar spinal stenosis, radiculopathy, sciatica, or rheumatic conditions. 

The study findings, recently published in the British Journal of General Practice, show that opioids work well in the first four weeks of acute pain, but provide little or no benefit if used for longer periods. If taken for more than 12 weeks, researchers say opioids may increase a patient's sensitivity to pain – a controversial theory known as hyperalgesia. 

"If someone breaks a limb, has surgery or a dental problem, where you anticipate the problem is going to resolve in a relatively short time, it's probably OK to give an opioid for that," says principal investigator Scott Garrison, MD, Professor of Family Medicine at the University of Alberta.

"Opioids still have a role in managing acute pain. But if the patient has a condition where this pain is going to be chronic, I think you should reconsider whether you should be offering an opioid, because you may only be giving very short-term pain relief with the possibility of worse pain in the long run, not to mention other potential problems from the opioids."

Garrison and his colleagues made a point of excluding studies from their review if they used a trial design known as "enriched enrollment randomized withdrawal" or EERW. Critics of the EERW method claim it skews data in favor of long-term opioid use.  

While the researchers acknowledge that opioids provide clinically meaningful pain relief for acute pain, they discourage patients from ever taking them. In his own family practice, Garrison says patients refuse to take opioids once he warns them about potential side effects.

"It's very hard to get people off opioids once they have started them, but when patients are given this information about potential harms, they don't want the drug," Garrison said. "Absolutely every patient who is told this up front ends up not taking the opioid. It's so hard to stop, but it's so easy not to start if people are fully informed."

No Changes in Brain Anatomy

The second study also concluded that long-term opioid use does not reduce pain or improve physical function in people with chronic back pain. But the research team at Northwestern University found that long-term opioid use does not cause lasting harm to the brain.

The study compared 70 patients who took opioids for chronic back pain to 70 similar patients who were opioid naive. On average, the opioid group took low to moderate doses for 7.8 years.

The study findings, published in the journal Brain, show the opioid and non-opioid groups reported nearly identical levels of pain, about 5.4 on a zero-to-10 pain scale. The opioid group had slightly worse results for physical function and mental health.

When MRI images were taken of both groups, researchers found little evidence that years of taking opioids altered the brain's anatomy.

"The psychological and brain properties of the participants on long-term prescription opiates were essentially intact," said senior study author A. Vania Apkarian, PhD, director of the Center for Translational Pain Research at Northwestern University Feinberg School of Medicine.

"That's good news because there's this fear nowadays that as soon as you start ingesting opiates, your brain is going to go crazy, and it doesn't," Apkarian said. "But the bad news is that we saw no sign that their pain had gotten any better by using this drug for so many years."

This is believed to be the first study to look at long-term opioid consumption and its effect on the brain. While the MRIs showed no changes in brain anatomy, the images did find differences in the opioid group in how brain regions function and communicate with each other. 

That was particularly true in parts of the brain involved in reward and motivation, suggesting that long-term opioid use may encourage drug-seeking behavior. 

Previous studies of long-term opioid use found that only a small percentage of patients become addicted or abuse their medication and the risk of long-term use is low.

A large study in Australia that followed over 1,500 patients on opioids for five years found that “problematic opioid use” was infrequent. Less than 10% of patients asked for higher doses or for a prescription to be renewed early. By the end of the study, patients were more likely to have stopped taking opioids (20%) than to be diagnosed with opioid dependence (8%).

Do Native Americans Need a Pain App?

By Crystal Lindell

The University of Oklahoma has received a $3.4 million dollar federal grant to help Native Americans with chronic pain – and they’re going to spend all of it on an app.

The money, which is coming from a five-year National Institutes of Health grant, will go towards building the first chronic pain mobile health (mHealth) app designed by and for Native Americans. Nearly one in three Native Americans live with chronic pain, more than any other segment of the U.S. population.

In a news release about the project, the university makes clear the app will only provide behavioral and psychological assistance for pain, because “medications, while commonly prescribed for chronic pain, are also easily abused.” 

Neither of those things are true. Many Americans with chronic pain find it nearly impossible to get opioid pain medication, so they are definitely not “commonly prescribed.” And most pain patients do not abuse their medication.

The researchers referenced our country's history of horrific treatment of Native Americans — including the fact that Oklahoma was the end of the Trail of Tears — to justify this whole endeavor.

“Native American communities have experienced intergenerational trauma, and they continue to experience contemporary traumas,” said Jamie Rhudy, PhD, a professor in the OU Department of Health Promotion Sciences. “These are the types of experiences that can place our brains on high alert and amplify pain.”

It’s infuriating to read that rationale, knowing that programs like this only serve to keep an effective pain treatment away from people who need it: opioids.  

Researchers say the app will focus on things like stress management, anxiety, sleep hygiene, physical health and diet.

“All of these can be drivers and amplifiers of pain,” said Rhudy. Then, in a quote only someone without chronic pain would say, he added this:

“Chronic pain is largely a construct of the brain. We’ve been taught that we have pain because maybe our joints wear out, or we have tissue damage, but everyone experiences pain differently, which our mHealth therapies will recognize and respond to,” said Rhudy.

In short, it’s all in your head.

Then he adds: “Sleep, stress and discrimination are not variables easily targeted by medications, but they do respond well to targeted psychological and behavioral interventions.”

Actually, as a chronic pain patient myself, I can tell you that sleep and stress are both easily targeted by medications. It’s just that many of those medications are controlled substances that have been blamed for our nation’s drug problem.

We asked Tamera Lynn Stewart, an Oklahoma patient advocate, what she thought of the app. She’s glad it's being developed with direct input from Native Americans, but says it “misses the mark pretty badly” in removing barriers they face in getting pain care.  

“My problem isn’t that they’re offering behavioral tools; it’s that we’ve spent years restricting, stigmatizing, or taking away treatments that actually help people, and now we’re approaching an already underserved population with an app while heavily emphasizing discrimination and psychology as drivers of their pain,” said Stewart, National Director of the P3 Alliance, a patient advocacy group. 

“We say they are disadvantaged in receiving quality care for their pain without admitting much of it was caused by the same policies incentivizing this study. All while forgetting to mention that many historical and current drug war policies criminalized or removed the very tools the indigenous population once relied on to treat their pain.” 

Stewart is worried that a pain app designed for a very specific high-risk population will eventually be deployed as a treatment for everyone else – something the pain community has seen before.

“I’m all for adding options. I’m much less enthusiastic when ‘adding an option’ starts looking like another way to redefine the problem so the healthcare system can offer less actual care,” Stewart told PNN.

After building and testing the app, OU researchers plan to have a randomized controlled trial to see how well it works.

“With the team we have in place we’ll be able to bring all the necessary components together to develop, test and deploy a novel, culturally tailored chronic pain intervention that will be scalable,” said Rhudy.

I will definitely be keeping an eye out for the trial results – especially if the app is then pushed on the larger chronic pain community. I’ll be especially interested to see how effective the app is compared to opioid pain medication – although I doubt they will include any data on that.

It’s so disappointing to see money and energy going to projects like this, which are clearly a result of opioid-phobia. Every time a project like this is funded, it means less money and effort going toward interventions that probably have much a higher chance of actually helping people in pain.