Women’s Health Initiative Improved Healthcare, but Has Uncertain Future

By Jean Wactawski-Wende

Women make up more than 50% of the population, yet before the 1990s they were largely excluded from health and medical research studies.

To try to help correct this imbalance, in 1991 the National Institutes of Health launched a massive, long-term study called the Women’s Health Initiative, which is still running today. It is the largest, longest and most comprehensive study on women’s health ever conducted in the U.S. It also is one of the most productive studies in history, with more than 2,400 published scientific papers in leading medical journals.

On April 20, 2025, the Department of Health and Human Services told the study’s lead investigators it plans to terminate much of the program’s funding and discontinue its regional center contracts. On April 24, after pushback from the medical community, HHS officials said the funding had been reinstated. But the reversal was never officially confirmed, so the study’s lead investigators – including me – remain concerned about its future.

I am a public health researcher who has studied chronic disease prevention in women for nearly 40 years. I have been centrally involved with the Women’s Health Initiative since its inception and currently co-direct one of its four regional centers at the University at Buffalo.

The project’s findings have shaped clinical practice, prevention strategies and public health policies across the U.S. and the world, particularly for older women. In my view, its loss would be a devastating blow to women’s health.

Little Medical Research of Women’s Health

The Women’s Health Initiative was established in response to a growing realization that very little medical research existed to inform health care that was specifically relevant to women. In the U.S. in the 1970s, for example, almost 40% of postmenopausal women were taking estrogen, but no large clinical trials had studied the risks and benefits. In 1985 an NIH task force outlined the need for long-term research on women’s health.

Launched by Bernadine Healy, the first woman to serve as director of the NIH, the Women’s Health Initiative aimed to study ways to prevent heart disease, cancer and osteoporosis.

Between 1993 and 1998, the project enrolled 161,808 postmenopausal women ages 50 to 79 to participate in four randomized clinical trials. Two of them investigated how menopausal hormone therapy affects the risk of heart disease, breast cancer, hip fractures and cognition. Another examined the effects of a low-fat, high-fiber diet on breast and colorectal cancers as well as heart disease. The fourth looked at whether taking calcium plus vitamin D supplements helps prevent hip fractures and colorectal cancer.

Women could participate in just one or in multiple trials. More than 90,000 also took part in a long-term observational study that used medical records and surveys to probe the link between risk factors and disease outcomes over time.

Menopausal Hormone Therapy

Some of the most important findings from the Women’s Health Initiative addressed the effects of menopausal hormone therapy.

The hormone therapy trial testing a combination of estrogen and progesterone was set to run until 2005. However, it was terminated early, in 2002, when results showed an increased risk in heart disease, stroke, blood clotting disorders and breast cancer, as well as cognitive decline and dementia. The trial of estrogen alone also raised safety concerns, though both types of therapy reduced the risk of bone fractures.

After these findings were reported, menopausal hormone therapy prescriptions dropped sharply in the U.S. and worldwide. One study estimated that the decreased use of estrogen and progesterone therapy between 2002 and 2012 prevented as many as 126,000 breast cancer cases and 76,000 cardiovascular disease cases – and saved the U.S. an estimated US$35 billion in direct medical costs.

Reanalyses of data from these studies over the past decade have provided a more nuanced clinical picture for safely using menopausal hormone therapy. They showed that the timing of treatment matters, and that when taken before age 60 or within 10 years of menopause, hormones have more limited risk.

Advances in Women’s Health

Although the Women’s Health Initiative’s four original clinical trials ended by 2005, researchers have continued to follow participants, collect new data and launch spinoff studies that shape health recommendations for women over 65.

Almost a decade ago, for example, research at my institution and others found in a study of 6,500 women ages 63 to 99 that just 30 minutes of low to moderate physical activity was enough to significantly boost their health. The study led to changes in national public health guidelines. Subsequent studies are continuing to explore how physical activity affects aging and whether being less sedentary can protect women against heart disease.

Bone health and preventing fractures have also been a major focus of the Women’s Health Initiative, with research helping to establish guidelines for osteoporosis screening and investigating the link between dietary protein intake and bone health.

One of the Women’s Health Initiative’s biggest yields is its vast repository of health data collected annually from tens of thousands of women over more than 30 years. The data consists of survey responses on topics such as diet, physical activity and family history; information on major health outcomes such as heart disease, diabetes, cancer and cause of death, verified using medical records; and a trove of biological samples, including 5 million blood vials and genetic information from 50,000 participants.

The Women’s Health Initiative set out to prevent heart disease, cancer and osteoporosis in menopausal women.

Any researcher can access this repository to explore associations between blood biomarkers, disease outcomes, genes, lifestyle factors and other health features. More than 300 such studies are investigating health outcomes related to stroke, cancer, diabetes, eye diseases, mental health, physical frailty and more. Thirty are currently running.

In addition to data amassed by the Women’s Health Initiative until now, about 42,000 participants from all 50 states, now ages 78 to 108, are still actively contributing to the study. This cohort is a rare treasure: Very few studies have collected such detailed, long-term information on a broad group of women of this age. Meanwhile, the demographic of older women is growing quickly.

Continuing to shed light on aging, disease risk and prevention in this population is vital. The questions guiding the project’s ongoing and planned research directly address the chronic diseases that Health Secretary Robert F. Kennedy Jr. has announced as national priorities.

So I hope that the Women’s Health Initiative can continue to generate discoveries that support women’s health well into the future.

Jean Wactawski-Wende, PhD, is a Professor of Public Health at the University at Buffalo and is the principal investigator of UB's Women's Health Initiative (WHI) Northeast Regional Center. She has served in various leadership roles in WHI, including publications chair and the WHI executive committee, and has served as the national Chair of the WHI Steering Committee.

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

I Hate That I Need Opioid Pain Medication

By Crystal Lindell

I genuinely hate that I need opioid pain medication. 

I hate that I need it to function. I hate how expensive it is. I hate how I have to endure background checks like drug tests and interrogations to get it — like I was a criminal. 

I hate how tired it makes me. 

I hate that I can’t just buy it over-the-counter. I hate that I have to deal with judgmental doctors and pharmacists every single month to get it. I hate how vulnerable it makes me feel. I  hate how much stigma there still is around it. 

I hate that I hate it as much as I do, and yet people still think that I only take it because I’m a lazy loser who loves to get high. 

I hate that when I take it — it actually works — because that just shows how much I need it. 

Chronic pain sucks. But needing daily pain meds for a chronic condition also sucks. 

I have gone to great lengths to try to get off opioids — to try to live without them. 

I’ve done painful nerve block procedures, weekly lidocaine infusions at a hospital over an hour from my house, and gone to every specialist in that hospital. I’ve tried THC, kratom, nicotine gum, wine, and capsaicin cream. I’ve tried yoga, chiropractors, and acupuncture. I’ve tried gluten-free diets, losing weight, daily walking, and prayer.

I’ve also tried to just live with the pain. 

But I can’t. I still need opioid medication. 

I need it to shower. I need it to work. I need it to relieve the pain that makes me suicidal if left untreated.

Without opioid pain meds, I’d either be too disabled to function, or in too much pain to live. 

And I hate that so much. 

I wish that was not the case. I wish I could just exist in this stupid world without needing opioids to be alive, to actually live. 

I wish there was some other way to manage my chronic pain or even better, that I didn’t have chronic pain to begin with.

But alas, that is not the case. I literally need opioid pain medication to survive. 

So I keep taking it. 

I keep submitting to all the stupid hurdles put in place by doctors, pharmacists, and the DEA. I keep coming up with money to pay for my appointments and prescriptions. And I keep enduring the stigma that comes with it.

But I still have hope that one day people who need opioid pain medication won’t have to hate that they need it. That they’ll have access to it, and that they won’t have to submit to dehumanizing treatment to get it. 

I hope that one day needing opioid pain medication won’t be a burden to patients that must be endured on top of whatever ailments they already have. I’d rather they just bring the relief they were intended for.

The healthcare system doesn’t have to be like this. We can change it. Opioid pain medication could be accessible, inexpensive, and stigma-free. We just have to make it so.

Lupus Unknown to Most Americans, Despite Widespread Prevalence

By Pat Anson

About 1.5 million Americans suffer from lupus, a disabling autoimmune condition that causes extreme fatigue, cognitive issues and damage to tissues and joints. Although lupus is a leading cause of death for young women, many of them Black or Hispanic, most Americans know little about the disease.

A new survey commissioned by the Lupus Foundation of America found that over half of American adults (53%) know very little about the disease or nothing at all --- even though 42% say they personally know someone living with lupus. The survey findings are being released to coincide with Lupus Awareness Month in May.

"The survey is a sobering reminder that lupus remains a misunderstood and underestimated chronic condition," Louise Vetter, President & CEO of the Lupus Foundation of America, said in a press release. "Lupus Awareness Month is a call to action because we know that awareness is the first step toward deeper understanding, stronger doctor-patient engagement, and healthier lives."

One of the reasons lupus is so poorly understood is that it is difficult to diagnose. The symptoms vary from person-to-person, can come and go or change over time, and are often misdiagnosed. On average, it takes nearly six years for people to be diagnosed after they first notice lupus symptoms.

About 43% of survey respondents said they did not know lupus is an autoimmune disease, 44% did not know lupus can impact any organ in the body, and more than a third (38%) were not aware that lupus can be fatal.

While lupus primarily impacts younger women aged 15-44, nearly half of Americans (40%) said they did not know that children can also develop the disease. Up to 20% of people with lupus are diagnosed as children, and pediatric onset of the disease tends to be more severe and aggressive than in adults.

There are no known causes or cure for lupus, and the FDA has approved only three medications that were specifically developed to treat lupus. Several non-lupus medications, originally developed to treat malaria or cancer, are being repurposed to treat lupus. On average, people with lupus take an average of nearly eight prescription medications to manage their symptoms.

The Lupus Foundation says there has been significant progress in developing new lupus treatments in the last five years, but concern is growing that cuts in federal health research will stifle further progress.

A continuing resolution passed by Congress in March would eliminate funding for the Lupus Research Program at the Department of Defense. The Department of Health and Human Services would also lose about a third of its funding under a proposed 2026 budget. That would coincide with a major reorganization of the CDC and the HHS Office of Minority Health, which threatens to eliminate two additional lupus programs.

“The Lupus Foundation of America is profoundly concerned by the reorganization and significant staff reductions taking place at the U.S. Department of Health and Human Services (HHS) in addition to cuts that already have been made to the Lupus Research Program at the Department of Defense (DoD). These changes threaten to disrupt and delay vital lupus programs and negatively impact lupus research, drug development, and public health initiatives,” the foundation said in a statement.

The foundation will hold its annual National Lupus Advocacy Summit on May 4-6 in Washington DC, which you can watch via livestream.

World Lupus Day is on May 10, with a call to action for patients and advocates to wear purple and light significant landmarks with the color purple.

How Workplace Conditions Contribute to Chronic Pain and Mental Health Issues

By Pat Anson

If you are of a certain age – like me – you’ll remember when computers started entering the workplace in the 1980’s. There was a huge learning curve, but eventually work became faster and more efficient.

There was also a tradeoff: employees reported back and neck pain from sitting at keyboards all day, and carpal tunnel syndrome became a thing. Companies learned about the hazards of repetitive motion, and how chair height, limited desk space and poorly shaped computer mouses affected worker health, absenteeism and productivity. A new industry was born: ergonomics.

Flash forward 40 years and companies are now being urged to think about “emotional ergonomics” – how workplace stress contributes to anxiety, depression, burnout, and chronic pain.

“Physical pain is often a symptom of deeper, underlying stressors—from job pressures to mental health challenges. Addressing industrial ergonomics without considering emotional well-being is an incomplete strategy. The most forward-thinking companies recognize that true injury prevention must integrate both,” says Kevin Lombardo, CEO of the DORN Companies.

DORN has partnered with organizations that specialize in ergonomics, business psychology, and suicide prevention on a new white paper called “Emotional Ergonomics: How the Intersection of Industrial Ergonomics, Pain, and Mental Health Shapes Worker Wellbeing.”

The paper’s main findings are that workplace conditions deeply affect the physical and mental health of workers, and that organizations must address them together to have a healthy, high-performing workforce. Workplace stress affects 40% of employees in the United States and contributes to about $190 billion in added healthcare costs.

Unlike the 1980’s, when most jobs entailed a 40-hour work week and were performed outside the home, today’s knowledge-driven economy blurs the lines between professional and personal lives. Employees may get work-related emails or texts at all hours of the day and night, and a growing number work from home. This increases exposure to stress, cognitive demands, poor sleep habits, and the psychosocial risks that come with juggling work, family and personal time.

A recent study found that stress and anxiety have become the most common work-related injuries, accounting for over half (52%) of new cases. That trend is mirrored in Google searches for “burnout,” which have risen dramatically in the last 10 years.

“This research signals a necessary shift in how we approach workplace well-being. Emotional Ergonomics bridges the gap between physical safety and mental resilience, ensuring that employee health is not just a compliance checkbox but a business imperative. Organizations that fail to recognize this connection risk long-term workforce instability and financial strain,” says Dr. Sally Spencer-Thomas, President of United Suicide Survivors International.

Common psychosocial hazards in the workplace include:

• Excessive workload and time pressures

• Toxic relationships between coworkers and supervisors

• Hazing, bullying, harassment and discrimination

• Exposure to workplace accidents and trauma

• Low autonomy and limited decision-making

• Job insecurity

• Work-Life disruption

To address these issues, companies can adjust workloads and allow for more flexible scheduling; adopt health and wellness programs; train supervisors in empathetic communication skills; and allow for “quiet time” and space where workers can decompress from job strain.

The goal is to view workers not as cogs in a machine, but as individuals with different physical, emotional, and psychological needs. An “I’ve got your back” mentality in the workplace builds trust and helps employees feel valued.  

To learn more about the study findings and ways to build emotional ergonomics, you can sign up to watch a live webinar on Wednesday, May 21.

The Nocebo Effect: How Negative Expectations Can Make Pain Worse

By Pat Anson

You’ve probably heard of the placebo effect – the phenomenon where a patient’s symptoms improve after receiving a sham or fake medical treatment. Although not fully understood, experts think the placebo effect occurs when someone believes a treatment will work, which tricks the brain into releasing endorphins and other hormones that relieve pain and help us feel better.

Less well known is the nocebo effect, which works the opposite way. When patients think a treatment won’t work or may even cause harm, their pain and other symptoms will get worse, not better.

German researchers wondered whether the placebo or nocebo effect was stronger, and enrolled 104 healthy volunteers in a study to find out.

“While many studies have explored placebo and nocebo effects individually, few have directly compared the two in the same people over time,” says co-lead author Katharina Schmidt, PhD, a researcher in the Department of Neurology at University Duisburg-Essen, Germany. “We set out to determine whether negative expectations towards treatment have a stronger or longer-lasting effect on pain perception than positive ones.”

The volunteers were given two sham treatments one week apart. On the first day, participants were exposed to short bursts of heat pain after being led to believe that they would feel either pain relief (placebo), increased pain (nocebo), or no change (control).

The expectations were created using a combination of verbal suggestions from researchers and a fake pain relief treatment – a sham nerve stimulator that appeared real but delivered no actual relief. Participants were then asked to rate the intensity of their pain on a scale between 0 (not painful) and 100 (unbearably painful). Unbeknownst to the participants, researchers adjusted the heat stimulus to reinforce their expectations – making it less painful in the placebo condition and more painful in the nocebo condition.

In the second session, the heat stimulus was kept identical for the placebo, nocebo and control groups, allowing researchers to test whether expectations formed on the first day continued to shape the participants’ pain perception.

The results, published in a reviewed preprint in eLife, show that both placebo and nocebo suggestions significantly influenced pain perception – but the nocebo effect was stronger.

On the first day, participants in the nocebo group rated their pain an average of 11.3 points higher than the control group; while the placebo group rated their pain only 4.2 points lower than the control group.

When participants returned one week later for the second session, the patterns persisted. The nocebo effect remained stronger than the placebo effect, with participants in the nocebo group rating their pain 8.9 points higher than the control group. The findings in the placebo group were more modest, with average pain ratings just 4.6 points lower than the control group.

“This suggests that people are more likely to expect and feel worse outcomes than better ones,” says Schmidt. “It reflects a ‘better-safe-than-sorry’ strategy – humans may have evolved to be more attuned to potential threats, making negative expectations carry more weight.”

Schmidt and her colleagues found that participants who experienced a strong placebo or nocebo effect on the first day were more likely to show the same response a week later. Psychological factors were also involved. Participants who rated the researcher in the sham sessions as highly competent were more susceptible to nocebo effects – possibly because they found the negative suggestions more believable.

“Our findings highlight the enduring nature of both placebo and nocebo effects in pain, with nocebo responses showing consistently greater strength over time,” said senior author Ulrike Bingel, MD, Director of the Interdisciplinary Center for Pain Medicine and Translational Pain Research at the University Duisburg-Essen. “While we often focus on boosting positive expectations in patients, we show that it may be just as important – if not more so – to avoid unintentionally creating negative ones, which appear to be more easily triggered.”

Bingel said the study demonstrates the need for better communication between patients and practitioners in real-life clinical settings. Negative or positive outcomes for patients can be triggered by how doctors and nurses communicate with them. In other words, a good bedside manner can improve patient outcomes.

“Positive framing, avoiding unnecessary emphasis on side effects, and building a trusting relationship can all reduce the risk of triggering nocebo responses. In a time when cost-effectiveness in healthcare is essential, preventing nocebo effects should be a key strategy for improving treatment outcomes,” said Bingel.

A recent study found that about a third of patients with irritable bowel syndrome (IBS) falsely believe that gluten or wheat trigger their symptoms. This may be a nocebo effect, where patients experience IBS symptoms after eating what they consider unhealthy food, even when there is no evidence that they are sensitive to wheat or gluten. 

Forced Tapering: Only Chronic Pain Patients Are Treated This Way

By Neen Monty

Imagine this: A patient, let’s call her Sue, has severe depression. Her GP prescribes an anti-depressant and refers her to a psychologist. Sue is advised to come back in four weeks. Which she does.

She’s not doing better, so the dose is increased. Sue is reviewed two more times over the next eight weeks, and each time her dose is increased.

Sue starts feeling better. The medication is working. The darkness has lifted, the black dog has been banished. She is grateful to her GP.

The GP is also happy. It has taken many weeks, but the GP raised the dose to find the minimum effective dose that controls Sue’s depression.

Sue comes back in another four weeks. She is happy, back at work, and socialising again. Life is good!

That’s when the GP tells her that it’s time to taper the anti-depressants.

Wait, what?

Or how about this: Sue has high blood pressure. She is at her GP for her yearly physical and the hypertension is discovered. The doctor prescribes a blood pressure medication and advises Sue to return in two weeks. At this review, her blood pressure is still too high, so the dose is increased.

Sue has two more dose increases, and her blood pressure falls into the normal range. She is experiencing no side effects and is very happy with the treatment.

When Sue sees her GP again with perfect blood pressure, he is pleased. Then he tells her it’s time to taper off the medication.

What if Sue had high cholesterol? Or high blood sugar? Or asthma? Epilepsy maybe?

I think you see where I am going with this.

The tapering would never happen, because it’s ludicrous and makes no sense, medically or otherwise. In these situations, people like Sue are often advised that they need to be on a medication for rest of their lives.

Where in medicine do doctors increase the dose of a medication until the symptoms are well managed and the patient is doing better -- and then gets tapered?

Only when the patient has chronic pain and is on opioid therapy. Doctors will prescribe a trial of opioids, which prove to be effective. The patient reports well-controlled pain, no significant side effects, and they are back at work, socialising, and living life again.

And then the doctor starts tapering the opioids. Against the patient’s wishes.

Utter insanity.

That’s not “evidence-based medicine.” There is no evidence to support this practice. I know what the theory is, and what doctors have been taught. But it’s not realistic. Yet many doctors don’t question it.

The theory is that once a patient gets pain relief, they will learn how to manage it without opioids. They’ll start to exercise and meditate, see a psychologist, work on their sleep hygiene, and get proper nutrition.

Except these other modalities will do nothing for severe, disabling pain.

Please point me to one study that shows that improving sleep will reduce the pain of multiple sclerosis, chronic inflammatory demyelinating polyneuropathy, or Parkinson’s disease. Or one study that shows cognitive behavioral therapy or mindfulness will reduce the pain of rheumatoid arthritis and lupus.

Those treatments may be helpful in very small ways. But their effect has been vastly overstated for chronic secondary pain -- pain that is caused by an injury, tissue damage, or disease.

Lifestyle modification can have an impact on a person who has mild to moderate primary pain -- chronic pain that does not have a known pathological cause. That pain is sometimes driven by emotional or psychological causes, so psychological treatments might be effective.

But they are ineffective for chronic secondary pain.

People will feel better on opioids, but its not “euphoria.” It’s because they can start exercising again, restart their hobbies, and return to work. They’ll feel happy again. Those positive things happen because their pain is now being treated.

Take away the pain medication, and the pain will return. The career grinds to a halt, the social life disappears, depression returns. Exercise is impossible while in severe pain. Everything returns to terrible.

There is no magic trick that can replace opioids. There is nothing else that will touch severe pain, be it acute or chronic.

And so, for doctors to provide a trial of opioids for secondary pain with the goal of eventually tapering patients is insanity. The only reason opioids should be tapered is if there are intolerable side effects, if they are not effective for the pain, or the patient wants to taper.

No one should be forcibly tapered. Ever. Forced tapering leads to a pain crisis, suicidal ideation, overdose and death. That’s what the science says.

Opioids are safe and effective when taken long term by a select minority of people – those who live with severe, disabling pain due to an incurable disease or injury.

Think about how cruel it is to provide them with a solution to their pain, to give them their life back, and then take it away.

Its abhorrent.

Its barbaric.

It’s not medicine. It’s not science. It’s not human.

Neen Monty is a writer and patient advocate in Australia who is dedicated to challenging misinformation about pain management. Drawing on lived experience and scientific research, Neen has created a website for Pain Patient Advocacy Australia that is full of evidence that opioids can be safe and effective, even when taken long term. You can also subscribe to her free newsletter on Substack, “Arthritic Chick on Chronic Pain.”

Does Not Taking Pain Medication Make You a Hero?

By Crystal Lindell

There’s a deeply ingrained belief in American culture that suffering is both cleansing and healing. It’s likely connected to the widespread mythology about the American Dream: With hard work, you can achieve anything – emphasis on the “hard.”

If it’s easy – or even just easier – something must be wrong, and maybe even immoral. In other words, if you’re not in pain, you’re not gaining. 

This belief, sadly, has even permeated healthcare in a number ways. Many doctors act as though suffering is the point when it comes to certain ailments that we’ve moralized, like weight loss, substance use, mental health, and of course, pain.  

This thought process has also seeped into the general population, like a virus. I’ll often hear people brag that they didn’t need any of their prescribed pain medication after a surgery – as though that’s some sort of achievement. 

I’ve also heard patients with chronic ailments imply their own superiority by making it clear that they almost never take pain medication – as if that makes them better than the patients who need it. 

But suffering, in and of itself, does not make you a hero. Denying yourself medication that helps you is not some sort of gold-star achievement. You don’t get a medal because you endured more pain than everyone else. You just get, well, more pain. 

If you truly don’t need your pain medication, then obviously you don’t need to take it – but it’s not something to brag about. 

Especially because one day, as you grow older and your body deteriorates, you may find that you actually do need the very medication you thought you were a hero for avoiding. Then you’ll have the added battle of unpacking all the shame you’ve internalized about using it.

The last thing anyone with pain needs is another battle. 

Pain medications aren’t just for comfort either, and avoiding them out of some moral obligation can quite literally be dangerous to your health. In acute care situations, like post-surgery or after a bone break, you need them so that your body can focus its energy on healing. They also allow you to move more so that you can avoid post-op complications like pneumonia. 

Pain medications are also vital for chronic pain conditions. They help patients maintain their physical health, stay independent, and even do things like work and household chores. Pain meds also make it possible for us to love, laugh and socialize, just like healthy people do.  

Beyond that though, your body was not designed to endure pain every single day. If you don’t treat pain, it will start to impact your brain, and more urgently, your sleep. Without good sleep, your health will deteriorate. 

Ultimately, there is no reward for “pushing through it.” Pain and suffering will not make you a better person. In fact, they are incredibly dangerous. So if you need opioid medication or some other pain reliever, you should take it. 

And if you don’t need it, there’s no reason to brag about it. Pain won’t make you a hero. Only compassion can do that. 

Top 3 Ways I Make Money While Living With Chronic Pain

By Crystal Lindell 

Living with chronic pain can make it difficult to navigate traditional employment, due to the physical challenges and the unpredictability of our symptoms   

Unfortunately, we still need money to exist in our society, so I cobble together a living every month with various side jobs that I try to make into a whole job. Below is a look at some of those jobs, and the pros and cons of doing them if you have chronic pain or any sort of chronic illness.  

One large disclaimer is that none of these jobs offer health insurance. For me, for now, that just means that I don’t have insurance and I pay for medical care with cash. But I know a lot of others in a similar situation who either qualify for government insurance or they are able to purchase insurance on the government marketplace. 

Another disclaimer is that having a bunch of side jobs will make doing your taxes much more difficult, so try to put money away for that throughout the year in preparation for it. 

DoorDash

Pros: Flexible schedule, options for same-day pay, low barrier to entry. 

Cons: Success varies greatly based on where you live; the work can be physically exhausting; customers can be unpredictable and difficult; and there’s wear and tear on your car.

I started doing DoorDash in March after my cat Princess D was diagnosed with feline diabetes, and I needed to come up with some extra money for her treatment fast. 

I had a friend who told me she made $400 in four days doing DoorDash, and that was enough incentive to get me to sign up for the Dasher app. 

I live in a rural area where there are few DoorDash customers, so I drive about 20 minutes to a mid-sized city, where there are more customers and I can easily make $100 in about 4-6 hours of work. I’ve noticed that about 10 percent of my earnings go to gas, so I usually do one extra order each night to cover that. 

While there is the possibility of very low-paying orders of just $2, as long as customers tip, each order is usually at least $5 or as much as $15 in my area. 

There’s also an option to do “shop and deliver” orders, where you basically do someone’s grocery shopping. You don’t get offered those jobs at first, but as you get more experience in the app, they will start to give them to you. I had one that paid $60 for a little over an hour of shopping, because I was shopping three grocery orders simultaneously. That’s a great way to increase your earnings. 

I really, really like how flexible DoorDash is and that they offer a couple different ways to get paid the day you work. So if you need some quick cash for something like a utility bill or even just a fun outing, it’s possible to make the money fast and get paid fast. 

In the beginning, I worked mostly dinner hours and focused on Thursday through Sunday, because that’s when the app is the busiest. But after you earn various status levels, they give you more options for working whatever hours you want. Now I’m able to go out during the day, if that works for me. 

Best of all, if I’m having a bad pain day, I don’t do Doordash or can I work a very short shift. That’s flexibility that most traditional jobs don’t offer. 

Plus, if you need to stay below certain income thresholds to qualify for government benefits, it allows you to work exactly as much as you want/need to. 

If you decide to try it, I highly recommend joining some online DoorDash support groups on places like Facebook and Reddit. They are full of tips for drivers and can help you navigate the app and the job as a whole. 

Obviously, doing gig work like DoorDash will put a lot of wear and tear on your car, so you’ll need to keep up with vehicle maintenance. 

But if you’re looking for quick cash that you can make working your own schedule, then DoorDash and other similar gig work like UberEats can be a great way to do that. 

Freelance Writing

Pros: Some flexibility, can pay well, and can often be done at home

Cons: High barrier to entry; basically have to have connections to get work; and the work can be very unsteady.

I have a lot of professional experience as a writer and editor, so after I got laid off from my full-time journalism job in 2022, I had a few people reach out to me with freelance opportunities. 

This has been one of the better paying ways I make money, with some jobs paying as much as $50/hour or more. 

Even if you don’t have experience, that doesn’t mean you can’t freelance. If you have a special skill of any sort, whether it’s painting, photography or house cleaning, you can usually just post on your social media that you’re looking for work and you may be surprised by how many people reach out. 

My main advice would be to charge by the project rather than by the hour, so that you don’t have to track your hours as you go, and you don’t have to worry about any awkwardness between you and the client regarding how fast you’re working. 

If you’re setting your own rates, you have to factor in taxes and healthcare, so you should aim to make about as much per hour as you’d want to make yearly if you multiplied it by 1,000. So if you want to make $60,000 a year, you’ll want to charge a rate that works out to about $60/hour.

The biggest con to freelancing is that the work can be unsteady, which means you can’t really count on the income from month to month. For me, it’s usually based on what the publication or company I’m writing for needs at any given time. If they don’t need me, there’s no work, and thus, no money. 

Also, in the last few years, Generative AI, like ChapGPT, has dried up some of the writing and marketing work that used to be more plentiful for me. I suspect that trend will continue for my industry and others. 

However, I love writing, and freelancing allows me to be choosy about which writing jobs I want to take, so that I can focus on the things l’m passionate about, like writing for Pain News Network. Plus, making any money at all from my writing always feels like a victory to me. 

Selling Used Lego Online 

Pros: Fully done at home, can lead to a decent daily income stream, immediate pay, and it’s fun.

Cons: Relatively high barrier to entry because you have to invest in Legos and set up your own virtual store. It takes many hours of work to get things off the ground.

My fiance and I also run a virtual store where we sell used Lego. We buy bulk Lego from private sellers, wash them, sort them, inventory what we have, and then sell them by the piece. 

I’m not entirely sure I would really recommend this unless it’s something you’re passionate about, as it has been a LOT of work to run the store. And we have to use multiple rooms in our house to store Lego. 

We’ve also had some generous help from relatives, who have helped front the cost of the bulk Lego purchases we get, which helps a lot. 

But we’ve been running the store for a few years now, and it brings in a very steady stream of daily proceeds. And the more we expand the store, the more we tend to make. 

It’s also great to be able to work on the store at home and on our own schedule. 

There are other ways to make money selling used items online, and I know a lot of people make a living selling things on sites like eBay. But again, I really don’t recommend it unless it’s a product you’re really passionate about. 

For example, if you already love thrifting clothes, you may be able to find some cheap but valuable items that you can resell online. But you’ll quickly grow bored and frustrated with how much work is involved if you don’t love the process of sourcing in the first place. 

I will confess that even with all of these jobs, we are often tight on money. But we are very rich in other ways. We choose our own schedules, we are happy, we are able to rest when our bodies need it, and we get to spend a lot of time with our beloved cats. 

Maybe some day I’ll be healthy enough, both mentally and physically, to work full-time again, but for now, I’m just enjoying this chapter in our lives and all the flexibility it gives us. 

Safer Opioid Supply Helps Reduce Overdoses

By Pat Anson

Should people at high risk of an overdose be prescribed opioids like hydromorphone or should they get methadone to help them cope with opioid addiction?

It’s a controversial question in Canada, where harm reduction programs are being used to give high-risk drug users a “safer supply” of legal pain medications as an alternative to increasingly more toxic and deadly street drugs. Critics say safer opioid supply (SOS) programs don’t reduce overdoses and are a risky alternative to more traditional addiction treatment drugs like methadone.

A new study, however, found that SOS programs are just as effective as methadone and may even be safer in the long run. Researchers in Ontario followed the health outcomes of over 900 people newly enrolled in SOS programs, comparing them with a similar number of drug users who started methadone treatment.  

Their findings, published in The Lancet Public Health, show that people in both the SOS and methadone groups had significant declines in overdoses, emergency department (ED) visits, hospitalizations, severe infections, and health care costs in the year after they started treatment. In both groups, deaths related to opioids or any other cause were uncommon.

ED Visits Fell After High-Risk Drug Users Enrolled in SOS or Methadone Programs

THE LANCET PUBLIC HEALTH

"This is the first population-based study to compare SOS programs with opioid agonist treatment, and to explore how people's outcomes change in the year after initiation," said lead author Tara Gomes, PhD, an epidemiologist and Principal Investigator at the Ontario Drug Policy Research Network (ODPRN).

Gomes and her colleagues found that people on methadone had a slightly lower risk of an overdose or being admitted to hospital, but they were also more likely to discontinue treatment and be at risk of a relapse. The higher dropout rate outweighed most of the benefits of methadone over SOS.

"Neither methadone nor safer supply programs are a one-size-fits-all solution, but our findings show that both are effective at reducing overdose and improving health outcomes," said Gomes. "They are complementary to each other, and for many people who haven't found success with traditional treatments like methadone, safer supply programs offer a lifeline. Our findings show that when safer supply programs are implemented, we see fewer hospital visits, fewer infections, and fewer overdoses."

SOS programs were launched in Ontario and British Columbia to combat a rising tide of overdoses linked to illicit fentanyl. A decade ago, Vancouver was the first major North American city to be hit by a wave of fentanyl overdoses, which led Vancouver to become a laboratory for harm reduction and safe injection sites that provided heroin or prescription opioids to drug users.  

The results have been somewhat mixed. An investigation by the National Post found that hydromorphone pills given to drug users in Vancouver were being sold on the black market, with the sellers then using the money to buy street drugs. Complaints about people selling their safe supply drugs led to British Columbia’s Health Minister recently changing the rules so that the SOS drugs are consumed while under the supervision of a pharmacists or healthcare provider.

A 2024 study in JAMA Internal Medicine found that opioid-related hospitalizations rose sharply in British Columbia after harm reduction programs were launched there, although there was no significant change in overdose deaths. The spike in hospitalizations may have been due to more toxic street drugs and counterfeit pills on the black market.

Drugs Targeting ‘Zombie Cells’ May Reduce Low Back Pain

By Pat Anson

Low back pain is one of the most common and difficult pain conditions to treat. Although it’s the leading cause of disability worldwide, a recent study found that only about 10% of pharmaceutical and non-surgical therapies for low back pain provide relief. More invasive treatments, such as spinal injections and nerve blocks, have also been found to be no more effective than a placebo.

In short, there’s not much evidence to support the use of many treatments commonly used for low back pain -- which makes a preclinical study on two potential treatments all the more interesting.

Low back pain is commonly caused by senescent cells, so-called “zombie cells” that build up in spinal discs as people age or when discs are damaged. Instead of dying off like normal cells, these aging cells linger in the spine, causing pain and inflammation.

In experiments on laboratory mice, researchers at McGill University found that two drugs – o-vanillin and RG-7112 -- can clear zombie cells from the spine, reduce pain and improve bone quality. O-vanillin is a natural compound, while RG-7112 is an FDA-approved cancer drug that shrinks tumors.

“Our findings are exciting because it suggests we might be able to treat back pain in a completely new way, by removing the cells driving the problem, not just masking the pain,” said senior author Lisbet Haglund, PhD, a Professor in McGill’s Department of Surgery and Co-director of the Orthopaedic Research Laboratory at Montreal General Hospital.

Haglund and her colleagues found that o-vanillin and RG-7112 had a beneficial effect when taken separately, but their impact was greatest when they were taken together orally.  After just eight weeks of treatment, the drugs slowed or even reversed disc damage in mice.  

“We were surprised that an oral treatment could reach the spinal discs, which are hard to access and present a major hurdle in treating back pain,” said Haglund. “The big question now is whether these drugs can have the same effect in humans.”

O-vanillin belongs to a family of spicy and pungent natural compounds known as vanilloids, which are found in chili peppers and turmeric. Vanilloids are already used to control inflammation and reduce pain in topical patches like Qutenza.

O-vanillin was not originally intended to be part of the McGill study. But while testing other drugs, researchers decided to include o-vanillin to see whether it might be effective when taken orally. The results offer some of the first evidence that o-vanillin can clear out zombie cells. Analogs of RG-7112 were already known to do this in osteoarthritis and cancer research, but had not previously been used to treat back pain.

The McGill findings are published in the journal Science Advances. In future studies, Haglund’s team hopes to modify o-vanillin to help it stay in the body longer and become more effective. In addition to back pain, they believe the two drugs have the potential to treat other age-related diseases driven by senescent cells, such as arthritis and osteoporosis.

The Silent Opioid Crisis: Seriously Ill Patients Face Frequent Delays in Pain Treatment

By Pat Anson

Shortages of opioid pain medication and insurance obstacles are causing frequent delays and suboptimal treatment for seriously ill patients, according to a new study by researchers at the Icahn School of Medicine at Mount Sinai.

In a survey of 52 palliative care clinicians in Mount Sinai’s New York-based medical system, nearly nine out of ten (88%) reported frequent obstacles in getting opioids for their patients. On average, clinicians spent over an hour each day on the phone with insurance companies and pharmacies trying to gain access to limited opioid supplies. Nearly a third (31%) said this resulted in suboptimal care for their patients.

The survey findings were recently published in NEJM Catalyst Innovations In Care Delivery.

“Prescriptions are written, but patient is not able to get the correct dose or quantity at their pharmacy,” one clinician reported.

“I once had to send an oxycodone prescription to eight pharmacies,” said another.

“I spent the better part of 2 days... trying to figure out a pharmacy that would [fill] the oxycodone. Sometimes I spend more time handling access issues than actually talking to and thinking about the patient,” another palliative care clinician reported.

Patients in palliative or hospice care often have severe pain from cancer, major surgery, or a sudden emergency like a sickle cell crisis. Although they are usually exempt from opioid guidelines that limit the dose or amount, seriously ill or dying patients face many of the same obstacles getting opioids as patients with more moderate pain. Researchers say this “silent opioid crisis” has largely been ignored.

“Taken together, these findings raise alarms about a new crisis in opioid access for people with serious illness, for whom opioids are often essential pain relief medicines,” wrote lead author Rebecca Rodin, MD, Assistant Professor of Geriatrics and Palliative Medicine, Icahn Mount School of Medicine at Mount Sinai.

“Our clinicians reported that the numerous challenges in opioid access led to significant adverse effects on patient outcomes, such as uncontrolled pain, rehospitalization, and opioid withdrawal, and on clinician administrative burden. That burden included time spent contacting pharmacies and insurance companies rather than on direct patient care, which adversely affected clinician job satisfaction.”

In some cases, Rodin said clinicians changed their prescriptions to “less-than-ideal” opioid formulations and doses, a change based on the drugs’ availability rather than what is appropriate for their patients.

To improve patient access, Mount Sinai clinicians started collaborating more closely with pharmacies, finding out which opioids were in stock and improving their documentation to show why a prescription is medically necessary. Outpatient pharmacies also started delivering opioids to oncology patients before they were discharged, which helps ensure there is no disruption in pain care when they go home.  

Knowing which pharmacies have opioids in stock proved to be a critical time-saver for doctors and helped Mount Sinai develop a list of preferred pharmacies that is updated in real time.  

“Our strategies have been effective within the Mount Sinai ecosystem, but they do not address root causes of barriers which can include a number of factors, such as much broader supply chain shortages at the regional and national level, public and private coverage policies, and pharmacy stocking and dispensing practices. We need to do more to address these barriers,” said Rodin.

CDC to Lose Nearly Half Its Funding in 2026 Budget Proposal

By Pat Anson

The Centers for Disease Control and Prevention and other federal health programs face severe cuts under a 2026 budget proposal drafted by the White House Office of Management and Budget (OMB).

The Department of Health and Human Services (HHS) could lose about a third of its funding for discretionary programs outside of Medicare and Medicaid. Among the dozens of programs being eliminated or downsized is the CDC’s National Center for Injury Prevention and Control, which developed the agency’s controversial opioid prescribing guideline.

Under the OMB’s budget proposal – known as a “passback” -- the CDC’s funding would be cut by about 44 percent, from $9.2 billion to nearly $5.2 billion.

“President Trump has committed to balancing the budget,” the leaked OMB document states. “Reaching balance requires resetting the proper balance between federal and state responsibilities with a renewed emphasis on federalism; eliminating the federal government’s support of woke ideology; protecting the American people by deconstructing a wasteful and weaponized bureaucracy; and identifying and eliminating wasteful spending.

“Passback levels reflect the reforms necessary to enable agencies to fulfill their statutory responsibilities in the most cost-effective manner possible. Many difficult decisions were necessary to reach the funding levels provided in this Passback.”   

The OMB budget for the CDC is intended to refocus the agency on its original core mission of monitoring public health and fighting infectious diseases, a long-sought goal of conservative activists.

Project 2025, a wish-list for the Trump Administration written by the Heritage Foundation, calls the CDC “perhaps the most incompetent and arrogant agency in the federal government.” The conservative think tank wants the CDC’s ability to set public health policy “severely confined” — a goal that the OMB budget would largely achieve if it is implemented in its current form.    

“The Budget reforms the Centers for Disease Control and Prevention to refocus CDC on emerging and infectious disease surveillance, outbreak investigations, preparedness and response, and maintaining the Nation’s public health infrastructure,” the OMB said.         

The CDC Injury Center was initially created in 1993 to improve workplace safety, but its duties have expanded over the years to include other public health issues outside of its original mission, such as drug overdoses, opioid prescribing, suicides, child abuse, and community violence. The Center’s budget for fiscal year 2024 was over $761 million.

Dr. Debra Houry, a former director of the Injury Center who is currently the CDC’s chief medical officer, advised staff last week to begin planning for the splintering of the agency.

It’s unclear what would happen to the CDC opioid guideline if the Injury Center is abolished. Although voluntary, the guideline’s recommendation to reduce the use of opioid pain medication was widely adopted by states, insurers, doctors and law enforcement, causing millions of patients to be taken off opioids or tapered to lower doses.

Patients and their advocates have long called for the guideline to be revoked. In a 2022 PNN survey of patients, providers and caregivers, 84% said the CDC overstepped its authority and shouldn’t be involved in opioid prescribing or pain management.

The CDC has already seen its workforce reduced by as many as 4,000 positions due to layoffs and early retirements in the second Trump administration. Many of those who were fired have formed an advocacy group called Fired But Fighting to get their jobs back and to demand more transparency from the administration on the downsizing of the CDC.

In addition to the Injury Center, other federal health programs targeted for elimination include the Substance Abuse and Mental Health Services Administration (SAMHSA) and the Agency for Healthcare Research and Quality (AHRQ). Some of the core functions of those agencies, such as those involved in overdose and suicide prevention, are being transferred to the Administration for a Healthy America (AHA), a new centralized agency in HHS under the direct control of Secretary Robert F. Kennedy Jr.

Under the Biden administration, the HHS budget increased by 38% and its staffing increased by 17%. The Trump administration plans to reduce the HHS workforce from 82,000 full-time employees to 62,000.

“We aren’t just reducing bureaucratic sprawl. We are realigning the organization with its core mission and our new priorities in reversing the chronic disease epidemic,” Kennedy said in a statement last month. "This Department will do more — a lot more — at a lower cost to the taxpayer."

The OMB budget proposal has not been finalized and needs the approval of Congress to be implemented. 

Researchers Replicate Human Pain in Lab Dish

By Crystal Lindell

Researchers have replicated part of the human nervous system in a lab dish, a method they hope will allow them to study pain and potential treatments without having to inflict pain on humans. 

The research was shared in a study published in Nature, and led by Sergiu Pasca, MD, a Professor of Psychiatry and Behavioral Sciences at Stanford University.

Pasca and his colleagues used stem cells to recreate the four key neurons involved in the “pain pathway” that processes pain in humans. Specifically, they made sensory neurons, spinal cord neurons, thalamic neurons, and cortical neurons, and put them all together. Then they added capsaicin, which is present in hot chili peppers, to see how the neurons respond to painful stimuli. 

They found that the lab dish neurons will sense the pain through specialized receptors and emit electrical signals throughout the pain pathway, just as they do in humans. 

“That makes us believe that we have actually reconstructed the basic component of this pain circuit,” Pasca explains. 

In a video about the findings, Pasca describes how they did the research and why it matters. 

The findings could allow researchers to study pain in humans in a way that doesn’t cause actual pain to humans or research animals. Human pain has often proven tough to study in laboratory animals.

“Their pain pathways are in some respects different from ours,” Pasca said. “Yet these animals experience pain. Our dish-based construct doesn’t.”

The hope is that being able to reconstruct or to build this pain pathway in the lab will allow researchers to study human genetic disorders and other conditions that cause pain, and then eventually to start testing drugs for alleviating pain. 

“This neural circuit in a dish offers us an exciting way to study disease and to speed up drug discovery and therapeutic applications -- essentially providing us with a working model of a very important part of our human nervous system,” Pasca said. 

How I Learned to Sleep Better and Keep My Mobility

By Madora Pennington

What do you lose when lose your ability to get up, walk, move about, and do things for yourself?

Independence.

Moving your body around requires muscles, stability, balance, good joints, and brain function. If that is lost, you need others to help you do things.

You may not be able to do your own cooking and cleaning. Getting groceries yourself might be too difficult. Even if you get them delivered, you might not be able to put them away. You risk falling and getting injured or not being able to get up. You miss out on social events. You may find yourself isolated and depressed. You’ll need more healthcare services. You might even end up in assisted living.

The number one cause of disability in the United States is loss of mobility, affecting 13% of adults. Many chronic conditions can lead to it: Parkinson's, multiple sclerosis, diabetes, arthritis.

One thing has been shown to slow the loss of mobility for all of them: good sleep.

A 2024 study followed over 70,000 women for eight years. Those that slept enough kept their ability to move and use their bodies. Those that didn’t reported being very sleepy during the day and lost mobility over time.

It seems that no matter what your chronic condition is — or even if you have none – sleeping too little may speed you towards disability.

These results are not surprising. A healthy diet, exercise, and good sleep are accepted as pillars of good health. Improving diet and exercise can be hard, requiring time, effort and education. But solving poor sleep can be a nightmare.

Here are some things I learned from a therapist years ago, when I was having night terrors every night. I would awaken in a state of hyper-arousal, confused about where I was and very afraid. I was diagnosed with PTSD, which is thought to be a disorder of circadian rhythm.

My body, I was told, had lost its sense of when it was time to rest and rejuvenate, and when it was time to be in action and face challenges. The therapist recommended fixing my dysregulated internal clock.

You do that by making sure the bedroom is used for sleep only. That means you avoid hanging out in bed or the bedroom — no eating, no watching TV, no knitting, reading, whatever.

“Can I fold the laundry on the bed?” I asked.

“It would be better to do it elsewhere,” the therapist said. “Stay out of your bedroom during the day as much as possible, so the bedroom itself signals sleepy time.”

Another tip was to avoid bright lights in the hours before bedtime. And to get some red lights to mimic the sun setting.

If you lie in bed feeling anxious and frustrated, you risk training your brain and body that the bed is a stressful place and not for sleep.

If you can’t sleep or go back to sleep, get out of bed and leave the bedroom. Keep the lights low, or even better, make them red. Move around. Unload the dishwasher. Pet the cat. Get right back in bed when drowsiness returns.

Get into bed at the same time every night, before 10 p.m. Set an alarm and get out of bed after eight hours, no matter what. No naps. Don’t confuse the body.

As odd as they seemed at the time, these simple suggestions went a long way in improving my sleep and my whole PTSD phenomena. I still stick to them. I don’t read, relax or watch TV in bed, unless I’m doing it as part of my bedtime routine. If I am sick, I rest elsewhere during the day.

I’ll admit, I do love a weekend nap sometimes. But I only take one if it’s before 2 p.m. Any later than that, and I might not fall asleep easily at night, a habit I do not want to promote.

When I do take a nap, I sleep upright on a bean bag or the couch, with the curtains open and a video playing. That way, my body understands this is a shallow nap – I have not entered a different time zone.

To wake up refreshed and rested is a gift to yourself and those around you. Many issues can prevent regular, deep, restorative sleep. Pain is a sleep interrupter. Antihistamines, benzodiazepines, opioids and alcohol may help put you to sleep, but keep you out of the REM stages of sleep that are needed for repair.

Find knowledgeable practitioners and good advice to help. The right solutions for good sleep are the ones that work for you.

Physical Therapy Coverage Often Ends When Patients Still Need It

By Jordan Rau, KFF Health News

Mari Villar was slammed by a car that jumped the curb, breaking her legs and collapsing a lung. Amy Paulo was in pain from a femur surgery that wasn’t healing properly. Katie Kriegshauser suffered organ failure during pregnancy, weakening her so much that she couldn’t lift her baby daughter.

All went to physical therapy, but their health insurers stopped paying before any could walk without assistance. Paulo spent nearly $1,500 out of her own pocket for more sessions.

Millions of Americans rely on physical and occupational therapists to regain strength and motor skills after operations, diseases, and injuries. But recoveries are routinely stymied by a widespread constraint in health insurance policies: rigid caps on therapy sessions.

Insurers frequently limit such sessions to as few as 20 a year, a KFF Health News examination finds, even for people with severe damage such as spinal cord injuries and strokes, who may need months of treatment, multiple times a week. Patients can face a bind: Without therapy, they can’t return to work, but without working, they can’t afford the therapy.

Paulo said she pressed her insurer for more sessions, to no avail. “I said, ‘I’m in pain. I need the services. Is there anything I can do?’” she recalled. “They said, no, they can’t override the hard limit for the plan.”

A typical physical therapy session for a privately insured patient to improve daily functioning costs $192 on average, according to the Health Care Cost Institute. Most run from a half hour to an hour.

Insurers say annual visit limits help keep down costs, and therefore premiums, and are intended to prevent therapists from continuing treatment when patients are no longer improving. They say most injuries can be addressed in a dozen or fewer sessions and that people and employers who bought insurance could have purchased policies with better therapy benefits if it was a priority.

Atul Patel, a physiatrist in Overland Park, Kansas, and the treasurer of the American Academy of Physical Medicine and Rehabilitation, said insurers’ desire to prevent gratuitous therapy is understandable but has “gone too far.”

“Most patients get way less therapy than they would actually benefit from,” he said.

Hard caps on rehab endure in part because of an omission in the Affordable Care Act. While that law required insurers to cover rehab and barred them from setting spending restrictions on a patient’s medical care, it did not prohibit establishing a maximum number of therapy sessions a year.

More than 29,000 ACA health plans — nearly 4 in 5 — limit the annual number of physical therapy sessions, according to a KFF Health News analysis of plans sold last year to individuals and small businesses. Caps generally ranged from 20 to 60 visits; the most common was 20 a year.

Health plans provided by employers often have limits of 20 or 30 sessions as well, said Cori Uccello, senior health fellow at the American Academy of Actuaries.

“It’s the gross reality in America right now,” said Sam Porritt, chairman of the Falling Forward Foundation, a Kansas-based philanthropy that has paid for therapy for about 200 patients who exhausted their insurance over the past decade. “No one knows about this except people in the industry. You find out about it when tragedy hits.”

Even in plans with no caps, patients are not guaranteed unlimited treatment. Therapists say insurers repeatedly require prior authorization, demanding a new request every two or three visits. Insurers frequently deny additional sessions if they believe there hasn’t been improvement.

“We’re seeing a lot of arbitrary denials just to see if you’ll appeal,” said Gwen Simons, a lawyer in Scarborough, Maine, who represents therapy practices. “That’s the point where the therapist throws up their hands.”

‘Couldn’t Pick Her Up’

Katie Kriegshauser, a 37-year-old psychologist from Kansas City, Missouri, developed pregnancy complications that shut down her liver, pancreas, and kidneys in November 2023.

After giving birth to her daughter, she spent more than three months in a hospital, undergoing multiple surgeries and losing more than 40 pounds so quickly that doctors suspected her nerves became damaged from compression. Her neurologist told her he doubted she would ever walk again.

Kriegshauser’s UnitedHealthcare insurance plan allowed 30 visits at Ability KC, a rehabilitation clinic in Kansas City. She burned through them in six weeks in 2024 because she needed both physical therapy, to regain her mobility, and occupational therapy, for daily tasks such as getting dressed.

“At that point I was starting to use the walker from being completely in the wheelchair,” Kriegshauser recalled. She said she wasn’t strong enough to change her daughter’s diaper. “I couldn’t pick her up out of her crib or put her down to sleep,” she said.

The Falling Forward Foundation paid for additional sessions that enabled her to walk independently and hold her daughter in her arms. “A huge amount of progress happened in that period after my insurance ran out,” she said.

In an unsigned statement, UnitedHealthcare said it covered the services that were included in Kriegshauser’s health plan. The company declined to permit an official to discuss its policies on the record because of security concerns.

A Shattered Teenager

Patients who need therapy near the start of a health plan’s year are more likely to run out of visits. Mari Villar was 15 and had been walking with high school friends to get a bite to eat in May 2023 when a car leaped over a curb and smashed into her before the driver sped away.

The accident broke both her legs, lacerated her liver, damaged her colon, severed an artery in her right leg, and collapsed her lung. She has undergone 11 operations, including emergency exploratory surgery to stop internal bleeding, four angioplasties, and the installation of screws and plates to hold her leg bones together.

Villar spent nearly a month in Shirley Ryan AbilityLab’s hospital in Chicago. She was discharged after her mother’s insurer, Blue Cross and Blue Shield of Illinois, denied her physician’s request for five more days, making her more reliant on outpatient therapy, according to records shared by her mother, Megan Bracamontes.

Villar began going to one of Shirley Ryan’s outpatient clinics, but by the end of 2023, she had used up the 30 physical therapy and 30 occupational therapy visits the Blue Cross plan allowed.

Because the plan ran from July to June, she had no sessions left for the first half of 2024.

MARI VILLAR AND HER THERAPIST

“I couldn't do much,” Villar said. “I made lots of progress there, but I was still on crutches.”

Dave Van de Walle, a Blue Cross spokesperson, said in an email that the insurer does not comment on individual cases. Razia Hashmi, vice president for clinical affairs at the Blue Cross Blue Shield Association, said in a written statement that patients who have run out of sessions should “explore alternative treatment plans” including home exercises.

Villar received some extra sessions from the Falling Forward Foundation. While her plan year has reset, Villar is postponing most therapy sessions until after her next surgery so she will be less likely to run out again. Bracamontes said her daughter still can’t feel or move her right foot and needs three more operations: one to relieve nerve pain, and two to try to restore mobility in her foot by lengthening her Achilles tendon and transferring a tendon in her left leg into her right.

“Therapy caps are very unfair because everyone’s situation is different,” Villar said. “I really depend on my sessions to get me to a new normalcy. And not having that and going through all these procedures is scary to think about.”

Rationing Therapy

Most people who use all their sessions either stop going or pay out-of-pocket for extra therapy.

Amy Paulo, a 34-year-old Massachusetts woman recovering from two operations on her left leg, maxed out the 40 visits covered by Blue Cross Blue Shield of Massachusetts in 2024, so she spent $1,445 out-of-pocket for 17 therapy sessions.

Paulo needed physical therapy to recover from several surgeries to shorten her left leg to the length of her right leg — the difference a consequence of juvenile arthritis. Her recovery was prolonged, she said, because her femur didn’t heal properly after one of the operations, in which surgeons cut out the middle of her femur and put a rod in its place.

“I went ballistic on Blue Cross many, many times,” said Paulo, who works with developmentally delayed children.”

Amy McHugh, a Blue Cross spokesperson, declined to discuss Paulo’s case. In an email, she said most employers who hire Blue Cross to administer their health benefits choose plans with “our standard” 60-visit limit, which she said is more generous than most insurers offer, but some employers “choose to allow for more or fewer visits per year.”

Paulo said she expects to restrict her therapy sessions to once a week instead of the recommended twice a week because she’ll need more help after an upcoming operation on her leg.

“We had to plan to save my visits for this surgery, as ridiculous as it sounds,” she said.

Medicare Is More Generous

People with commercial insurance plans face more hurdles than those on Medicare, which sets dollar thresholds on therapy each year but allows therapists to continue providing services if they document medical necessity. This year the limits are $2,410 for physical and speech therapy and $2,410 for occupational therapy.

Private Medicare Advantage plans don’t have visit or dollar caps, but they often require prior authorization every few visits. The U.S. Senate Permanent Subcommittee on Investigations found last year that MA plans deny requests for physical and occupational therapy at hospitals and nursing homes at higher rates than they reject other medical services.

Therapists say many commercial plans require prior authorization and mete out approvals parsimoniously. Insurers often make therapists submit detailed notes, sometimes for each session, documenting patients’ treatment plans, goals, and test results showing how well they perform each exercise.

“It’s a battle of getting visits,” said Jackee Ndwaru, an occupational therapist in Jacksonville, Florida. “If you can’t show progress they’re not going to approve.”

An Insurer Overruled

Marjorie Haney’s insurance plan covered 20 therapy sessions a year, but Anthem Blue Cross Blue Shield approved only a few visits at a time for the rotator cuff she tore in a bike accident in Maine. After 13 visits in 2021, Anthem refused to approve more, writing that her medical records “do not show you made progress with specific daily tasks,” according to the denial letter.

Haney, a physical therapist herself, said the decision made no sense because at that stage of her recovery, the therapy was focused on preventing her shoulder from freezing up and gradually expanding its range of motion.

“I went through those visits like they were water,” Haney, now 57, said. “My range was getting better, but functionally I couldn’t use my arm to lift things.”

Haney appealed to Maine’s insurance bureau for an independent review. In its report overturning Anthem’s decision, the bureau’s physician consultant, William Barreto, concluded that Haney had made “substantial improvement” — she no longer needed a shoulder sling and was able to return to work with restrictions. Barreto also noted that nothing in Anthem’s policy required progress with specific daily tasks, which was the basis for Anthem’s refusal.

“Given the member’s substantial restriction in active range of motion and inability to begin strengthening exercises, there is remaining deficit that requires the skills and training of a qualified physical therapist,” the report said.

Anthem said it requires repeated assessments before authorizing additional visits “to ensure the member is receiving the right care for the right period of time based on his or her care needs.” In the statement provided by Stephanie DuBois, an Anthem spokesperson, the insurer said this process “also helps prevent members from using up all their covered treatment benefits too quickly, especially if they don’t end up needing the maximum number of therapy visits.”

In 2023, Maine passed a law banning prior authorization for the first 12 rehab visits, making it one of the few states to curb insurer limitations on physical therapy. The law doesn’t protect residents with plans based in other states or plans from a Maine employer who self-insures.

Haney said after she won her appeal, she spaced out the sessions her plan permitted by going once weekly. “I got another month,” she said, “and I stretched it out to six weeks.”

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