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.

What Not To Say in the Emergency Room

By Carol Levy

Many years ago, I was a clerk in an emergency room ward. Often the people who came in didn't seem to understand how an emergency room works. Unfortunately, those same misunderstandings exist today.

I have seen a number of online posts and comments by chronic pain patients about their experiences in emergency rooms. The posts tend to be very negative about ERs, often angry, and full of frustration over the way they were treated.

My intention when I started this column was to write about the emergency room experience, and what to expect when you make the choice to go there. I did some research to ensure my facts would still be current, such as how ER departments are configured today.

I found several articles on what not to say to your pain management doctor. To my surprise, the answers mimicked what you should not say in the ER, such as “I just need painkillers” or “I know what I need, just prescribe it.”

Saying that gives the impression that you’re just looking for medication, rather than treatment. It’s not advisable to say that to any doctor, regardless of the situation.  

At the ER, you will first see the receptionist or ward clerk. The next step for most hospitals is the triage person, usually a nurse.  When they ask “What is the reason for your visit?” saying, “I have pain” is not sufficient.

They will inquire about when, where and for how long you’ve had pain, to get a better idea of why you are there. That will help them decide what level of an emergency you are.

It’s important not to expect ER staff to know everything about rare disorders, such as CRPS, trigeminal neuralgia or Ehlers-Danlos syndrome. The chances they have seen or even heard of them are slim. Unfortunately, for many rare disorders, we have to be the ones to educate the staff.

Even if you are in extreme pain, shouting “I have pain!” will not help get what you need. Calmly explaining, as best you can, the cause and level of your pain gives them a better understanding of why you are there, and will help get you seen sooner.

Another “don’t” is asking for a specific opioid, as it can make you appear to be a drug seeker. That’s not fair, I know, but that’s just the way it is in the current anti- opioid environment.

Exaggerating your pain can also be seen as the behavior of someone looking to get drugs. Screaming or yelling “I am in horrible pain! Give me something now!” won't get you what you need. Ultimately, the doctor or nurse will decide if you're exaggerating your pain. If they decide that’s the case, you may get nothing at all.

You also shouldn’t question your doctor's expertise. After all, he is the expert (or at least thinks he is). Asking for clarification is fine, but asking for a second opinion may backfire. It’s another way of saying you don't trust or have faith in the doctor. In the ER, you won't be able to get a second opinion. Whichever doctor sees you is the one you’re stuck with.

The wait in the ER may be a long one. The doctors and nurses may seem to be walking around aimlessly, but they may actually be busy, dealing with patients who have suffered a heart attack, stroke, or severe trauma.

If you are a chronic pain patient, your pain may not be seen as an immediate concern. To ER staff, acute pain could be a sign of a life threatening situation that needs immediate attention.

Many ERs now have private rooms, but some still have ward-like areas. It is nice to have privacy, but they may put you in the ward area because that is the only space available.

These unwritten rules apply to everyone on how to act in the ER. But for those of us with chronic pain, we need to to be extra careful about what lines not to cross.

What lessons have you learned in the ER?

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

Misinformation About Fentanyl Threatens To Undermine Overdose Response

By Henry Larweh, KFF Health News

Fentanyl, the deadly synthetic opioid driving the nation’s high drug overdose rates, is also caught up in another increasingly serious problem: misinformation.

False and misleading narratives on social media, in news reports, and even in popular television dramas suggesting people can overdose from touching fentanyl — rather than ingesting it — are now informing policy and spending decisions.

In an episode of the CBS cop drama “Blue Bloods,” for instance, Detective Maria Baez becomes comatose after accidentally touching powdered fentanyl. In another drama, “S.W.A.T.,” Sgt. Daniel “Hondo” Harrelson warns his co-workers: “You touch the pure stuff without wearing gloves, say good night.”

While fentanyl-related deaths have drastically risen over the past decade, no evidence suggests any resulted from incidentally touching or inhaling it, and little to no evidence that any resulted from consuming it in marijuana products. (Recent data indicates that fentanyl-related deaths have begun to drop.)

There is also almost no evidence that law enforcement personnel are at heightened risk of accidental overdoses due to such exposures. Still, there is a steady stream of reports — which generally turn out to be false — of officers allegedly becoming ill after handling fentanyl.

“It’s only in the TV dramas” where that happens, said Brandon del Pozo, a retired Burlington, Vermont, police chief who researches policing and public health policies and practices at Brown University.

In fact, fentanyl overdoses are commonly caused by ingesting the drug illicitly as a pill or powder. And most accidental exposures occur when people who use drugs, even those who do not use opioids, unknowingly consume fentanyl because it is so often used to “cut” street drugs such as heroin and cocaine.

Despite what scientific evidence suggests about fentanyl and its risks, misinformation can persist in public discourse and among first responders on the front lines of the crisis. Daniel Meloy, a senior community engagement specialist at the drug recovery organizations Operation 2 Save Lives and QRT National, said he thinks of misinformation as “more of an unknown than it is an anxiety or a fear.”

“We’re experiencing it often before the information” can be understood and shared by public health and addiction medicine practitioners, Meloy said.

Some state and local governments are investing money from their share of the billions in opioid settlement funds in efforts to protect first responders from purported risks perpetuated through fentanyl misinformation.

In 2022 and 2023, 19 cities, towns, and counties across eight states used settlement funds to purchase drug detection devices for law enforcement agencies, spending just over $1 million altogether. Two mass spectrometers were purchased for at least $136,000 for the Greeley, Colorado, police department, “to protect those who are tasked with handling those substances.”

Del Pozo, the retired police chief, said fentanyl is present in most illicit opioids found at the scene of an arrest. But that “doesn’t mean you need to spend a lot of money on fentanyl detection for officer safety,” he said. If that spending decision is motivated by officer safety concerns, then it’s “misspent money,” del Pozo said.

Fentanyl misinformation is affecting policy in other ways, too.

Florida, for instance, has on the books a law that makes it a second-degree felony to cause an overdose or bodily injury to a first responder through this kind of secondhand fentanyl exposure. Similar legislation has been considered by states such as Tennessee and West Virginia, the latter stipulating a penalty of 15 years to life imprisonment if the exposure results in death.

Public health advocates worry these laws will make people shy away from seeking help for people who are overdosing.

“A lot of people leave overdose scenes because they don’t want to interact with police,” said Erin Russell, a principal with Health Management Associates, a health care industry research and consulting firm. Florida does include a caveat in its statute that any person “acting in good faith” to seek medical assistance for someone they believe to be overdosing “may not” be arrested, charged, or prosecuted.

‘You Can Get It Through Your Fingers’

And even when public policy is crafted to protect first responders as well as regular people, misinformation can undermine a program’s messaging.

Take Mississippi’s One Pill Can Kill initiative. Led by the state attorney general, Lynn Fitch, the initiative aims to provide resources and education to Mississippi residents about fentanyl and its risks.

While it promotes the availability and use of harm reduction tools, such as naloxone and fentanyl test strips, Fitch has also propped up misinformation.

At the 2024 Mississippi Coalition of Bail Sureties conference, Fitch said, “If you figure out that pill’s got fentanyl, you better be ready to dispose of it, because you can get it through your fingers,” based on the repeatedly debunked belief that a person can overdose by simply touching fentanyl.

Officers on the ground, meanwhile, sometimes are warned to proceed with caution in providing lifesaving interventions at overdose scenes because of these alleged accidental exposure risks. This caution is often evidenced in a push to provide first responders with masks and other personal protective equipment.

Fitch told the crowd at the conference: “You can’t just go out and give CPR like you did before.”

However, as with other secondhand exposures, the risk for a fentanyl overdose from applying mouth-to-mouth is negligible, with no clinical evidence to suggest it has occurred.

Her comments underscore growing concerns, often not supported by science, that officers and first responders increasingly face exposure risks during overdose responses. Her office did not respond to questions about these comments.

Health care experts say they are not against providing first responders with protective equipment, but that fentanyl misinformation is clouding policy and risks delaying critical interventions such as CPR and rescue breathing.

“People are afraid to do rescue breathing because they’re like, ‘Well, what if there’s fentanyl in the person’s mouth,’” Russell said. Hesitating for even a moment because of fentanyl misinformation could delay a technique that “is incredibly important in an overdose response.”

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

How Chronic Pain Impacts Romantic Relationships

By Crystal Lindell

The more you love someone with chronic pain, the more likely it is that their pain will cause you emotional distress. 

That’s according to new research published in the Journal of Health Psychology, which looks at the ways middle-aged romantic partnerships are impacted when one person has chronic pain. 

The researchers collected twice-daily surveys over the span of 30 days from 147 couples who were at least 50 years of age and had one partner who suffered from chronic back pain. 

Using the couples' answers to questions about distress and relationship closeness, as well as reports of pain severity from the pain-affected partner, they examined how emotional, behavioral and cognitive closeness affected the quality of couples’ daily interactions.

On the positive side, researchers found that emotional closeness between couples dealing with chronic pain led to more marital satisfaction on days when the couple felt close. 

However, on the other side of things, the closer the couple felt emotionally on any given day, the more likely it was that the non-pain partner experienced more distress. The non-pain partner apparently feels empathy for the pained partner, which results in them feeling stressed. 

As anyone who’s ever been in love knows, empathy is the required price. When your partner is sad, you will also tend to be sad on their behalf. 

This is not inherently a bad thing. Feeling empathy for your partner when they are dealing with pain makes it more likely that you’ll work harder to ease their pain, by doing things like advocating for them in healthcare settings and allowing them to rest while you do the household chores. 

The researchers framed this as something to avoid though, which I guess makes sense if it’s happening excessively.

“Couples have to find a balance that is ideal for them in managing closeness versus independence — this is true for all couples, not just those dealing with the impacts of chronic pain. But for those dealing with chronic pain, we can help them learn how to balance the benefits of closeness with minimizing shared distress stemming from a chronic condition,” lead researcher Lynn Martire, PhD, a professor of human development and family studies at Penn State’s Center for Healthy Aging, said in a press release.: 

The findings suggest that methods could be developed to help couples find the right balance in closeness, which would protect them from causing more pain and distress for each other. Martire and her colleagues plan further studies on the roles of behavioral and cognitive closeness.

“I’m excited to dive deeper into the other research questions we can examine from this data set,” Martire said. “We gathered data using different measures of relationship closeness, how they differ between patients and partners and how relationship closeness changes over time. We are poised to learn a great deal about the impact of pain on couples.”

Prior studies show that closeness is associated with many positive and beneficial relationships, including higher levels of commitment and satisfaction, and a lower risk of the relationship ending. 

However, researchers also say their findings suggest that too much closeness may transfer negative emotions and physical symptoms between partners.

“These findings illustrate a complex interplay between closeness and personal well-being in couples managing chronic illness and suggest the need for interventions that target both the benefits and potential costs of closeness,” they concluded. 

Yes, indeed, there are “benefits and potential costs” in any close relationship. It’s a contradiction that countless poets have spent centuries trying to navigate. 

Love comes at a price, but most of the time, the price is worth it. 

The Pharmacy Shuffle: Navigating the Opioid Shortage Again

By Crystal Lindell

The pain medication I take daily was completely out of stock at my pharmacy, as well as every other pharmacy near us in northern Illinois this week. 

The first replacement my doctor prescribed would cost me $529 out-of-pocket – even with a GoodRx coupon. 

Let me take you through what it’s like to navigate the morphine extended-release (ER) shortage as a pain patient who depends on this medication to function. And yes, this is the second time I’ve had to deal with the shortage in the last few months.

But this time, it was much worse. 

The whole saga really started last week, when I sent a MyChart message to my doctor’s office letting them know that I was due for a refill on Monday, March 31. They sent the refill prescription to my pharmacy on Friday, with the fill date set for Monday. 

Despite the fact that my pharmacy had this prescription in their system all weekend, they waited until 11 Monday morning to tell me that morphine ER was out of stock at their store and every other pharmacy in the area – and that there was no way to order it. 

After the pharmacy tech explained that to me, she said, “Did you want me to transfer the prescription somewhere else?”

Um, you just said it was out of stock everywhere? Where the heck would you transfer it to?

I asked her what alternatives they did have in stock, so that I could let my doctor know the best options. Because morphine ER and all of the alternatives are controlled substances, she immediately started acting like I was an armed gunman asking for details so that I could rob their narcotics safe later. 

Finding an Alternative

At that point, I realized that this situation was going to take at least the rest of the day to navigate, so I was growing impatient. I told her, “Sorry, I’m just trying to avoid having to make 17 phone calls about this, playing phone tag with you and my doctor’s office.”

She relented, and finally told me that they did have morphine instant-release (IR) available. 

I then got to work calling other local pharmacies hoping for a miracle. Unfortunately, I got the same information from all of them: Morphine ER was out of stock, they had no way to order more, and they had no idea when they might be able to get it. 

So then I called my doctor and left a message explaining the situation and that morphine instant-release was probably the best alternative. I called him 2 more times because I didn’t hear back.

Finally, the nurse called me back at 5:13 pm – just 17 minutes before the doctor was slated to leave for the day. And it was not great news. She told me that my doctor did not want to prescribe the instant-release version because he was worried it would be too strong for me. 

I suggested that he prescribe oxycodone extended-release, but that I was worried about the cost. I don’t currently have health insurance. 

My doctor sent in the oxycodone replacement at 5:28 pm, just minutes before he left for the day. 

At this point, I naively assumed that the oxycodone ER would cost around $200, which is significantly more expensive than the $60 I usually pay for morphine ER. 

Sadly, my guess of $200 was pathetically low.

My pharmacy gave me two pieces of bad news: One, they didn’t have the oxycodone in stock, but they could get it tomorrow, and two, the cash price with GoodRx would be $529. 

For some reason, the pharmacist thought this was a good time to have a conversation with me about my patient profile. He said that I needed to have my doctor prescribe a non-controlled medication for me because I only get prescriptions for controlled substances from them. That’s a red flag for the DEA, which could impact him – as if patients get to decide for their doctor what they’re prescribed.

I don’t have insurance and was on the verge of going into withdrawal without pain medication, and the pharmacist thought that was the best time to tell me that I needed to get an unnecessary medication to protect him? 

At this point, I did what any sane person would do: I started crying. 

I couldn’t afford the $529 oxycodone and now I also had the added stress of knowing that my pharmacist thinks I’m a “red flag” patient. 

I immediately called my doctor again, knowing that I was making the phone call in vain, because he was gone for the day. I was routed to the on-call service. The on-call doctor didn’t feel “comfortable” prescribing a controlled substance after hours to a patient they had never met.

By now, any patience I had was as unavailable as the morphine ER tablets were – so I used it as an opportunity to tell him that perhaps their “policy” should consider how dangerous it is to send patients into morphine withdrawal. 

He said I could go to the emergency room if it gets really bad, and I reminded him that I don’t have insurance. At that point, I accepted the fact that I will have to wait until day 2, and just hope it’s resolved then.

That night was awful. It’s not a good idea to go from 3 morphine ER tablets down to zero in one day, and I spent all night in and out of a fitful sleep, before finally deciding to get up for the day at 3 am. 

I called my doctor’s office as soon as they opened and left a message with his receptionist explaining the $529 price tag. I also let them know that I had already called additional pharmacies that morning and I was still getting the same excuse about them being out of stock with no way to order more morphine ER.

I called my doctor back again in the afternoon, because I still hadn’t gotten a response. Finally, at 3:24 pm, my doctor’s nurse called back. I had to explain this entire situation again. She gasped when I told her about the $529 price tag, said she would talk to the doctor, and call me back. 

Less than an hour later, she calls to tell me that they are sending in the prescription for morphine instant-release – the same medication they could have sent in the day before, which would have saved me from a night of unnecessary suffering. 

By that point, I was thankful that I was finally closer to getting this resolved. I call the pharmacy, they tell me they got the new script, and that they’d start working on it. It’s ready when I get there, and the price is just $52.60 – far cheaper than the oxycodone replacement. 

I Got Lucky, Other Patients May Not

The whole situation was just an awful chain of events, where I felt like I was failed by every single person in the healthcare system. Why didn’t the pharmacy tell me on Friday that my medication was out of stock? Why did my doctor’s office wait until the end of the day Monday to call me back? Why did the on-call doctor shrug me off?

I say all of this knowing that I’m one of the “lucky” ones who was actually able to get this situation resolved. Thousands of other patients are also dealing with shortages of  morphine ER and other opioids. I suspect most of them won’t get an alternative medication at all. 

My last prescription for morphine ER was manufactured by Rhodes Pharmaceuticals, which did not provide a reason for the shortage to the American Society of Health-System Pharmacists (ASHP). Neither did Major, Mallinckrodt, Sun Pharma or Teva Pharmaceuticals. The drug makers would only say the medication is on “back order.”  

You might still be able to get MS Contin, a branded version of morphine ER, but it costs more and most insurers won’t pay for it, according to the ASHP, so pharmacies don’t usually keep it in stock.

At this point, I’m genuinely wondering if generic morphine ER will ever be available again. Drug makers don’t make a lot of money selling generics and opioids come with the added risk of liability, so some manufacturers have quietly discontinued production.  

I think sometimes people believe that opioid pain medications are a want, not a need. But I need morphine ER to deal with my chronic pain. It allows me to work, shower, make dinner, clean my house, and spend time with my loved ones. Most of all, it allows me to get through the day without suicidal levels of physical pain. 

If you’re a patient trying to navigate this shortage, just know that my heart goes out to you. 

And if you're a physician or a pharmacist trying to deal with this from the other end of things, I hope you’ll treat morphine ER the same way you’d treat any other necessary, daily medication. If you wouldn’t do it to a patient who needs insulin, don’t do it to a patient who needs pain medication.

HHS Cuts Signal Seismic Shift in Public Health Policy

By Simon Haeder

Department of Health and Human Services Secretary Robert F. Kennedy, Jr. recently announced plans to dramatically transform the department. HHS is the umbrella agency responsible for pandemic preparedness, biomedical research, food safety and many other health-related activities.

In a video posted last week, Kennedy said the cuts and reorganization to HHS aim to “streamline our agency” and “radically improve our quality of service” by eliminating rampant waste and inefficiency. “No American is going to be left behind,” the health secretary told the nation.

As a scholar of U.S. health and public health policy, I have written about administrative burdens that prevent many Americans from accessing benefits to which they are entitled, including those provided by HHS, like Medicaid.

Few experts would deny that the federal bureaucracy can be inefficient and siloed. This includes HHS, and calls to restructure the agency are nothing new

Combined with previous reductions, these cuts may achieve some limited short-term savings. However, the proposed changes dramatically alter U.S. health policy and research, and they may endanger important benefits and protections for many Americans. They may also have severe consequences for scientific progress. And as some policy experts have suggested, the poorly targeted cuts may increase inefficiencies and waste down the line.

What HHS Does

HHS is tasked with providing a variety of public health and social services as well as fostering scientific advancement.

Originally established as the Department of Health, Education, and Welfare in 1953, HHS has seen substantial growth and transformation over time. Today, HHS is home to 28 divisions. Some of these are well known to many Americans, such as the National Institutes of Health, the Food and Drug Administration and the Centers for Disease Control and Prevention. Others, such as the Center for Faith-Based and Neighborhood Partnerships and the Administration for Community Living, may fly under the radar for most people.

HHS oversees Medicare, through which 68 million Americans, primarily adults age 65 and older, receive health insurance benefits. Richard Bailey/Corbis Documentary via Getty Images

With an annual budget of roughly US$1.8 trillion, HHS is one of the largest federal spenders, accounting for more than 1 in 5 dollars of the federal budget.

Under the Biden administration, HHS’s budget increased by almost 40%, with a 17% increase in staffing. However, 85% of that money is spent on 79 million Medicaid and 68 million Medicare beneficiaries. Put differently, most of HHS’ spending goes directly to many Americans in the form of health benefits.

Layoffs Affect 25% of HHS Workforce

From a policy perspective, the changes initiated at HHS by the second-term Trump administration are far-reaching. They involve both staffing cuts and substantial reorganization.

Prior to the March 27 announcement, the administration had already cut thousands of positions from HHS by letting go probationary employees and offering buyouts for employees to voluntarily leave.

Now, HHS is slated to lose another 10,000 workers. The latest cuts focus most heavily on a handful of agencies. The FDA will lose an additional 3,500 employees, and the NIH will lose 1,200. The CDC, where cuts are steepest, will lose 2,400 positions.

In all, the moves will reduce the HHS workforce by about 25%, from more than 82,000 to 62,000. These changes will provide savings of about $1.8 billion, or 0.1% of the HHS budget.

Along with these cuts comes a major reorganization that will eliminate 13 out of 28 offices and agencies, close five of the 10 regional offices, reshuffle existing divisions and establish a new division called the Administration for a Healthy America.

In his latest message, Kennedy noted that this HHS transformation would return the agency to its core mission: to “enhance the health and well-being of all Americans”. He also announced his intention to refocus HHS on his Make America Healthy Again priorities, which involve reducing chronic illness “by focusing on safe, wholesome food, clean water and the elimination of environmental toxins.”

‘Painful Period’ for HHS

Kennedy has said the HHS overhaul will not affect services to Americans. Given the magnitude of the cuts, this seems unlikely.

HHS reaches into the lives of all Americans. Many have family members on Medicaid or Medicare, or know individuals with disabilities or those dealing with substance use disorder. Disasters may strike anywhere. Bird flu and measles outbreaks are unfolding in many parts of the country. Everyone relies on access to safe foods, drugs and vaccines.

The plan to restructure HHS will trim its budget by 0.1%.

In his announcement, the health secretary highlighted cuts to HHS support functions, such as information technology and human resources, as a way to reduce redundancies and inefficiencies. But scaling down and reorganizing these capacities will inevitably have implications for how well HHS employees will be able to fulfill their duties – at least temporarily. Kennedy acknowledged this as a “painful period” for HHS.

However, large-scale reductions and reorganizations inevitably lead to more systemic disruptions, delays and denials. It seems implausible that Americans seeking access to health care, help with HIV prevention or early education benefits such as Head Start, which are also administered by HHS, will not be affected. This is particularly the case when conceived rapidly and without transparent long-term planning.

These new cuts are also further exacerbated by the administration’s previous slashes to public health funding for state and local governments. Given the crucial functions of HHS – from health coverage for vulnerable populations to pandemic preparedness and response – the American Public Health Association predicts the cuts will result in a rise in rates of disease and death.

Already, previous cuts at the FDA – the agency responsible for safe foods and drugs – have led to delays in product reviews.

Overall, the likelihood of increasing access challenges for people seeking services or support as well as fewer protections and longer wait times seems high.

Fewer Benefits and Services

The HHS restructuring should be viewed in a broader context. Since coming to office, the Trump administration has aggressively sought to reshape the U.S. public health agenda. This has included vast cuts to research funding as well as funding for state and local governments. The most recent cuts at HHS fit into the mold of rolling back protections and reshaping science.

The Trump administration has already announced plans to curtail the Affordable Care Act and roll back regulations that address everything from clean water to safe vaccines. State programs focused on health disparities have also been targeted.

HHS-funded research has also been scaled back dramatically, with a long list of projects terminated in research areas touching on health disparities, women’s and LGBTQ-related health issues, COVID-19 and long COVID, vaccine hesitancy and more.

The HHS reorganization also revamps two bodies within HHS, the Office of the Assistant Secretary for Planning and Evaluation and the Agency for Healthcare Research and Quality, that are instrumental in improving U.S. health care and providing policy research. This change further diminishes the likelihood that health policy will be based on scientific evidence and raises the risk for more politicized decision-making about health.

More cuts are likely still to come. Medicaid, the program providing health coverage for low-income Americans, will be a particular target. The House of Representatives passed a budget resolution on Feb. 25 that allows up to $880 billion in cuts to the program.

All told, plans already announced and those expected to emerge in the future dramatically alter U.S. health policy and roll back substantial protections for Americans.

Regulation has emerged as the most prolific source of policymaking over the last five decades, particularly for health policy. Given its vast responsibilities, HHS is one of the federal government’s most prolific regulators. Vast cuts to the HHS workforce will likely curtail this capability, resulting in fewer regulatory protections for Americans.

At the same time, with fewer experienced administrators on staff, industry influence over regulatory decisions will likely only grow stronger. HHS will simply lack the substance and procedural expertise to act independently. More industry influence and fewer independent regulators to counter it will also further reduce attention to disparities and underserved populations.

Ultimately, the Trump administration’s efforts may lead to a vastly different federal health policy – with fewer benefits, services and protections – than what Americans have become accustomed to in modern times.

Simon F. Haeder, PhD, is an Associate Professor of Public Health in the Department of Health Policy & Management in the School of Public Health at Texas A&M University. 

Dr. Haeder studies the politics and policies surrounding health access issues, with a particular focus on health access for vulnerable populations, the impact of provider networks on health access, and school-based health access. 

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

My Use of Opioids Is None of Your Business

By Neen Monty

It seems like everyone these days has an unsolicited opinion about my pain management. Physical therapists, pharmacists, even my dentist has decided they need to weigh in on my opioid use.

Why do health care professionals who do not specialise in pain management feel entitled to comment on the way I manage my severe, long-standing pain? They clearly know nothing about opioids, have not read the studies, and are getting their knowledge from media headlines. If they actually read the studies, they wouldn’t be expressing these ignorant opinions.

But even so, it’s none of their business. If they are not treating my pain, why do they feel entitled to lecture me on a treatment plan that is well outside their expertise?

My rheumatologist doesn’t comment on my gastroenterologist’s treatment plan. My neurologist has zero interest in the way my immunologist is managing my symptoms. So why do health care professionals feel the need to comment on my use of opioids for pain relief?

For years, my pain was well controlled under the guidance of my GP — whom, I might add, is more than capable of managing pain. I never needed a pain specialist. I never needed to jump through ridiculous hoops or prove that my pain was “real enough” to deserve relief. And yet, thanks to the manufactured opioid crisis here in Australia, I was forced into a system that treats pain patients like criminals.

Let’s be clear: I am not an addict. I am a person with severe, incurable and excruciatingly painful diseases. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a progressive neurological disease that attacks my nerves. Refractory rheumatoid arthritis means my immune system is at war with my joints – all of them - and it’s winning.

These are not minor aches and pains. This is not pain that comes and goes. This is constant, severe pain. Pain when I’m at rest and even more pain when I move.  

These are not conditions that can be fixed with a little physio, deep breathing, or positive thinking. They are devastating, life-altering diseases, and pain relief is essential to my ability to function.

And yet, here we are. Every healthcare professional I encounter suddenly thinks my pain medication is their business.

My dentist, who is supposed to focus on my teeth, thinks it’s appropriate to lecture me on opioids.

My physiotherapist, whose job is to help me maintain muscle strength and mass, feels the need to moralise about my use of opioids. He is an expert in physiology and movement science, but knows nothing about pharmacology. Yet he believes that he does. And he's happy to tell me so.

Pharmacists, who definitely should know better, jump on the bandwagon with their judgmental takes. Yes, I have a supply of naloxone, even though it’s the biggest waste of money the government has ever been conned into spending by addiction researchers. I am at zero risk of needing it.

And no, I do not want information about how to taper my pain medicine. I actually need my pain medicine. I take it because I live with neuropathic and nociceptive chronic pain. You should try it sometime. I don’t think you’d enjoy it, but you’d be a better clinician. And person.

All of this unsolicited advice amounts to little more than bullying. Just the mention of an opioid turns some health care professionals into the high school bully. Do you want my lunch money as well?

What is this obsession with controlling other people’s pain relief? Why do you even have an opinion, when it is far outside of your area of practice? How can you possibly think it’s appropriate for you to judge how I treat my disease or my pain, when you met me two minutes ago?

Most of all, where is your empathy? Your compassion? Your human decency?

Lecturing and hectoring me is not compassionate, person-centred care.

Do you have an opinion on whether I take methotrexate or baricitinib for my rheumatoid arthritis? Does it matter, to you, which cDMARD or bDMARD I am taking? You’ve never heard of them, have you? They rarely make media headlines. Yet they are both riskier medications than opioids, and are more likely to cause serious adverse events. Yet you don’t care about those at all.

Do you care about my IVIG infusions? It’s extremely expensive medication. Unlike opioids, which are very cheap.

What about my steroid dose? You should care about that. All health care professionals know that high dose steroids, taken long term, are very dangerous. They often end up killing people. But because ignorant medical practitioners have taken my opioids away, I have been forced to live on high dose steroids. And all the side effects they bring.

But that’s fine with you. You don’t care about my steroid use. Only my poor endocrinologist does. Lovely gentleman. I can tell he truly cares about me as a patient. It shows in the way he treats me. With calm, gentle respect. He also stays in his lane. The only comment he has made about my opioid use is something akin to “I’m sorry you’re in so much pain.”

That’s a good doctor. After my first appointment with him, I went to my car and cried for 15 minutes straight. I’m not used to receiving that kind of compassion and empathy.

I normally get lectures. Unsolicited advice. And scare tactics: “Those drugs will kill you, you know!”

Or disgusted disbelief: “The pain can’t be that bad!”

Or, very commonly, abandonment: “You’re just going to have to learn to live with it.”

But why should I learn to live with pain that is easily treatable? Because you refuse to read the science? Because you like to get your medical knowledge from politicians, corrupt psychiatrists on the take, and researchers who misreport their own data to keep the grant money flowing?

Yeah, I know. At first, I thought all that was a conspiracy theory – no one would be so evil as to harm people who live with horrifically painful diseases just to further their own career, right? Of course not. No one would do… oh wait. Yes, they would.

Opioids are not for everyone. And thankfully, most people will never experience the kind of pain that requires around-the-clock opioids.

But when opioids are the only thing that reduces pain enough so that a person can survive and have a life, then opioids should be given. And in doses that actually relieve the pain, not a dose that some regulator or politician decided would be enough for everyone. Severe pain is a medical emergency. It does not matter if that pain is acute or chronic.

But let’s go back a step. I am in constant, severe pain. My nerves are being destroyed by my immune system, as are my joints. This is a documented and very painful disease process. Yet there is not an ounce of empathy. Not anymore, anyway.

Back in 2011, I went to a GP in absolute distress. I could not cope with the pain anymore and was crawling along the floor to get to the bathroom. The GP was compassionate. He knew that severe RA is a horrifically painful disease. He prescribed oxycodone and I got my life back.

And now? Health care professionals only have one thing to say: “Stop taking those opioids!”

It’s clear that these clinicians do not believe my pain is severe. It’s clear they don’t believe anything warrants long term opioid use. It’s clear that some think I only want opioids to get high.

Most clear of all is that they feel an entitlement to lecture me about it. When they know nothing about my pain.

The stigma created by the manufactured opioid crisis has turned us into the type of patients no doctor wants to treat. We are seen as liabilities. Nuisances. Whiners. Complainers. Time wasters. We’re seen as problems to be managed, rather than human beings in desperate need of help.

“Heartsink patients.” Are you familiar with that term? Google it. Heartsink patients are said to “exasperate, defeat, and overwhelm their doctors.”

I don’t fit that profile. Not even close. Very few people do. The profile was created so that doctors can feel they have the right to save the patient from themselves. Every single healthcare professional seems to think they have the right to weigh in, to judge and to lecture pain patients.

Here’s a radical idea: Mind your own business. Even better, educate yourself.

Read some recent science. Some peer reviewed science. Even read the studies that are referenced in the opioid prescribing guidelines. I promise you, they don’t say what you think they say.

Unless you are my GP or the prescribing doctor actively involved in my pain management, my opioid pain medication is not your concern. Yes, I need to tell you about it, in case you want to prescribe something that interacts with opioids. But that does not give you the right to judge me.

Pain is not a moral failing.

Taking opioids to manage pain is not a character flaw.

And it is none of your business.

Neen Monty is a writer and patient advocate in Australia who is dedicated to challenging misinformation and promoting access to safe, effective pain relief. 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.”

Health Insurance Premiums Rising Faster Than Inflation

By Phillip Reese, KFF Health News

Kirk Vartan pays more than $2,000 a month for a high-deductible health insurance plan from Blue Shield on Covered California, the state’s Affordable Care Act marketplace. He could have selected a cheaper plan from a different provider, but he wanted one that includes his wife’s doctor.

“It’s for the two of us, and we’re not sick,” said Vartan, general manager at A Slice of New York pizza shops in the Bay Area cities of San Jose and Sunnyvale. “It’s ridiculous.”

Vartan, who is in his late 50s, is one of millions of Californians struggling to keep up with health insurance premiums ballooning faster than inflation.

Average monthly premiums for families with employer-provided health coverage in California’s private sector nearly doubled over the last 15 years, from just over $1,000 in 2008 to almost $2,000 in 2023, a KFF Health News analysis of federal data shows. That’s more than twice the rate of inflation. Also, employees have had to absorb a growing share of the cost.

The spike is not confined to California. Average premiums for families with employer-provided health coverage grew as fast nationwide as they did in California from 2008 through 2023, federal data shows. Premiums continued to grow rapidly in 2024, according to KFF.

Small-business groups warn that, for workers whose employers don’t provide coverage, the problem could get worse if Congress does not extend enhanced federal subsidies that make health insurance more affordable on individual markets such as Covered California, the public marketplace that insures more than 1.9 million Californians.

Premiums on Covered California have grown about 25% since 2022, roughly double the pace of inflation. But the exchange helps nearly 90% of enrollees mitigate high costs by offering state and federal subsidies based on income, with many families paying little or nothing.

Rising premiums also have hit government workers — and taxpayers. Premiums at CalPERS, which provides insurance to more than 1.5 million of California’s active and retired public employees and family members, have risen about 31% since 2022. Public employers pay part of the cost of premiums as negotiated with labor unions; workers pay the rest.

“Insurance premiums have been going up faster than wages over the last 20 years,” said Miranda Dietz, a researcher at the University of California-Berkeley Labor Center who focuses on health insurance. “Especially in the last couple of years, those premium increases have been pretty dramatic.”

Dietz said rising hospital prices are largely to blame. Consumer costs for hospitals and nursing homes rose about 88% from 2009 through 2024, roughly double the overall inflation rate, according to data from the Department of Labor. The rising cost of administering America’s massive health care system has also pushed premiums higher, she said.

Insurance companies remain highly profitable, but their gross margins — the amount by which premium income exceeds claims costs — were fairly steady during the last few years, KFF research shows. Under federal rules, insurers must spend a minimum percentage of premiums on medical care.

Rising insurance costs are cutting deeper into family incomes and squeezing small businesses.

The average annual cost of family health insurance offered by private sector companies was about $24,000, or roughly $2,000 a month, in California during 2023, according to the U.S. Department of Health and Human Services. Employers paid, on average, about two-thirds of the bill, with workers paying the remaining third, about $650 a month. Workers’ share of premiums has grown faster in California than in the rest of the nation.

Many small-business workers whose employers don’t offer health care turn to Covered California. During the last three decades, the percentage of businesses nationwide with 10 to 24 workers offering health insurance fell from 65% to 52%, according to the Employee Benefit Research Institute. Coverage fell from 34% to 23% among businesses with fewer than 10 employees.

“When an employee of a small business isn't able to access health insurance with their employer, they're more likely to leave that employer,” said Bianca Blomquist, California director for Small Business Majority, an advocacy group representing more than 85,000 small businesses across America.

Kirk Vartan said his pizza shop employs about 25 people and operates as a worker cooperative — a business owned by its workers. The small business lacks negotiating power to demand discounts from insurance companies to cover its workers. The best the shop could do, he said, were expensive plans that would make it hard for the cooperative to operate. And those plans would not offer as much coverage as workers could find for themselves through Covered California.

“It was a lose-lose all the way around,” he said.

Mark Seelig, a spokesperson for Blue Shield of California, said rising costs for hospital stays, doctor visits, and prescription drugs put upward pressure on premiums. Blue Shield has created a new initiative that he said is designed to lower drug prices and pass on savings to consumers.

Even at California companies offering insurance, the percentage of employees enrolled in plans with a deductible has roughly doubled in 20 years, rising to 77%, federal data shows. Deductibles are the amount a worker must pay for most types of care before their insurance company starts paying part of the bill. The average annual deductible for an employer-provided family health insurance plan was about $3,200 in 2023.

During the last two decades, the cost of health insurance premiums and deductibles in California rose from about 4% of median household income to about 12%, according to the UC Berkeley Labor Center, which conducts research on labor and employment issues.

As a result, the center found, many Californians are choosing to delay or forgo health care, including some preventive care.

California is trying to lower health care costs by setting statewide spending growth caps, which state officials hope will curb premium increases. The state recently established the Office of Health Care Affordability, which set a five-year target for annual spending growth at 3.5%, dropping to 3% by 2029. Failure to hit targets could result in hefty fines for health care organizations, though that likely wouldn’t happen until 2030 or later.

Other states that imposed similar caps saw health care costs rise more slowly than states that did not, Dietz said.

“Does that mean that health care becomes affordable for people?” she asked. “No. It means it doesn’t get worse as quickly.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

Why Are Doctors Reluctant to Recommend Mobility Aids?

By Crystal Lindell 

There’s a common thought process among doctors when it comes to opioid pain medications. 

They usually don’t prescribe them unless you specifically ask for them, because they don’t want to “encourage” you to use them. But also, if you do ask for opioids, then they label you as a drug seeker and assume you’re looking for “the easy way out” or to get high.

In short, most doctors try very hard to avoid giving patients opioids, unless they want to treat addiction with Suboxone – which ironically contains the opioid buprenorphine.

While I strongly disagree with every part of that thought process, in that situation doctors at least have the excuse that they have to worry about the DEA and losing their medical licenses. 

I’ve also noticed that many doctors have the same thought process when it comes to prescribing and/or recommending mobility aids like walking canes, crutches and wheelchairs. 

They don’t like to suggest them to patients because they don’t want to “encourage” their use. However, on the other end, if a patient does ask for them, doctors also bristle at that. They seem to think that mobility aids are, like opioids, “the easy way out.” 

Of course, there’s nothing easy about either opioids or mobility aids. If a patient has gotten to a point where they feel the need to use either one, chances are they are needed. 

I noticed these anti-mobility aid attitudes among doctors myself, when I had pain from a bone spur on my heel. My doctors never suggested crutches, and I had to figure out for myself that not using my foot was the only thing that seemed to help relieve the pain. I had some crutches at home from a previous injury, and using them allowed me to still function while also not putting weight on my foot. They also allowed my body to heal. 

Years ago, when my fiancé had a severe hip injury, he had to go out and buy his own cane because his doctors had not even suggested one, much less prescribed one – despite the very clear need. 

Online you’ll find multiple Reddit threads of patients expressing frustration at how doctors approach mobility aids. About a year ago in the “Mobility Aids” section of Subreddit, a poster asked, “Why are doctors so hesitant to let patients use mobility aids?”

“I use forearm crutches because I struggle to walk sometimes because of how much my pain hurts and my doctor thinks I have [an] autoimmune disorder that causes this pain which I'm getting more testing for but he goes ‘you're 19 you don't need mobility aids.’ But I have literally fallen over before. Laid in bed in agony barely able to move. Cried from how much it hurts and so much more yet they want to deny me what helps me get around?”

The post then has multiple responses from readers lamenting that they have had the same experience with doctors.

“I’ve had the same issues with doctors and just got mobility aids on my own, not through a doctor. I don't understand why doctors avoid it though because there’s been days at a time where I couldn’t leave my bed and it was hard to go anywhere or do anything on bad days [and] even on good days I still have troubles,” one poster wrote.

There is research that seems to confirm those fears.

A recent study in The Lancet found demographic, socioeconomic and social barriers impacted how much access people had to "mobility assistive products" or MAPs. They surveyed 12,080 people over age 50 in England and found that 42% had an unmet need for a mobility aid. 

Researchers found that women were more likely to have difficulty accessing mobility aids when they have a need for them. They also found that older patients who were unemployed or had a low education level had more trouble accessing MAPs.

Interestingly, having a romantic partner also increased the chances of having an unmet need for a mobility aid, whereas being single actually made patients more likely to have them. My guess is that single people are more likely to advocate for access to mobility aids, because they don’t have a partner at home to help them with daily tasks.  

Other studies have shown a prejudice toward patients with mobility aids among doctors. 

For example, a 2023 study published in the National Library of Medicine looked at physicians' attitudes about caring for disabled patients. They interviewed doctors in focus groups and found many had medical offices that presented “physical barriers to providing health care for people with disabilities, including inaccessible buildings and equipment.”

Some doctors openly admitted the lack of accessibility in their clinics. For example, one rural primary care physician said, “I know for a fact our building is not accessible.” 

If a doctor doesn’t even offer an accessible building to patients, odds are that they don’t prioritize mobility aids for the patients either. 

It seems that doctors assume that if patients start using a mobility aid, they’ll end up using it for the rest of their lives. But in my case and my fiance’s case, that’s not what happened. We both used them short term, and stopped as soon as we were healthy enough to do so. 

Regardless, who cares if people use mobility aids for the rest of their lives? Would that be such a bad thing? Being alive and independent with mobility aids is preferable to being confined at home and/or losing your independence. 

Perhaps some doctors see patients with mobility aids as a failure on their part. After all, if a patient needs them, then the doctor must not be doing enough to treat them. 

Mobility aids are exactly what the name implies – an aid that gives people more mobility, and by extension, more independence and freedom. They can greatly improve someone’s quality of life, whether they are used long or short-term. 

There’s no reason for doctors to gate-keep mobility aids, other than their own ablest bias. If they actually want to help patients, they should be suggesting them a lot more often. 

The Fine Art of ‘Knowing’ Your Body

By Cynthia Toussaint  

Three times in my life I knew something big, tragic and seemingly illogical was going to happen to me. All were trauma and health related, though I didn’t know that when my gut spoke to me with complete assuredness. 

Against all naysayers and doubters, my first two premonitions were eerily on target and heartbreakingly so. Trouble is, my third intuition is knocking at the door, and if I can’t change fate, I won’t survive to see my next birthday.

Can I turn my future around to save myself?

I don’t think there’s anything supernatural about my success at prognostication. The only special power I possess is an ability to tune into my inner wisdom and to trust it. As I learned more about the connection between mind and body – the bodymind, if you will – I’ve come to believe that my body unconsciously speaks to my mind and the premonitions are the conscious expression of that communication.       

My first hunch started when I was 17. With great interest, I read a magazine article about anorexia, as I’d almost died from this eating disorder five years prior. At the end of the piece, when the writer incorrectly stated that some anorexics can’t have children after being cured, my gut knew, unequivocally, that would be me.

I became obsessed, speaking endlessly about this knowing to friends and family, always landing on deaf ears because I appeared perfectly healthy. I then shared this fear with my gynecologist and even sought out a psychologist. After both assured me I’d have as many children as I wanted when the time was right, I knew they were wrong. My reasoning for not being able to have a child would morph from anorexia to a future, unknown health problem, one that would rear its head years later.

Meanwhile, at age 20, I regained my footing and was living a seemingly perfect life. I was in college, studying my great passions (singing, dancing and acting), got an agent and was auditioning for TV and film roles. Then out of the blue, another obsessive, dreadful foreknowledge came to me: my show business career would end when I was 21.

Again, my certainty landed on incredulous ears. “You’re making no sense, Cynthia” and “You’ve got your whole career ahead of you” and other reassurances came from all directions. But, again, I knew they were wrong.      

To meet the deadline that was amplifying in my head, I hustled to get my headshots and resumes done. I even recall yelling over the phone at my photographer for taking too much time. He couldn’t fathom my rush, especially when I paid to have someone drive my precious pics from his Bay Area studio to my LA dorm overnight.          

Like a cosmic special delivery, three months before my 22nd birthday, a ballet injury triggered Complex Regional Pain Syndrome (CRPS). Though it would be 13 years before my diagnosis, piece by piece, CRPS dismantled my performing career.

I managed to dance some in a Las Vegas illusion act, posed for Playboy and tried like hell to get hired as a TV host in LA. As a last-ditch effort, I sent hundreds of letters to industry folk and got an agent to represent me for sitting jobs as a “special booking,” all to no avail. No one would hire me due to my significant disability and limitations.           

Back on the baby front, my first premonition was still bubbling away. Just before my partner John and I planned to get pregnant, my gynecologist advised I needed a LEEP procedure to remove dysplasia. Tragically, that procedure spread CRPS into my cervix and vagina, lighting the area on neuropathic fire. As a result, I was unable to have intercourse through the rest of my child-bearing years.

No career, no child. My premonitions were two for two, batting a thousand. 

You can imagine my concern when in my early 40’s a new premonition took hold. I started sharing with John that I knew I would die before reaching age 65. This time around, there were no doubters.

My foretelling seemed to be playing out right on schedule, when at 59 I developed the most aggressive form of breast cancer – and then again two years later when I experienced a recurrence, followed by a year of painful, life-threatening complications caused by my overactive immune system.

But this time, unlike my previous two knowings, I’m pushing back.

I’m certain I’m still alive because I now understand that trauma drives illness, and since my first cancer diagnosis, I continue to do a ton of trauma release work while devoting myself to self-care.

If my next PET/CT scan is clean, I’ll reach the three year disease-free mark, which is considered by most oncologists to be a cure for Triple Negative breast cancer. Free and clear, as they say.

Still, I’m praying that nine months down the road, on New Year’s Eve, I’ll be blowing out candles on my 65th birthday cake. If I do, I’ll know that trauma release, self-care, and giving myself the agency and action to plot my course, allowed me to change my fate.

As those candles go out, my wish for all of us seemingly fated to suffer with chronic pain and other illness, will be that we will listen intimately to our whispering intuitions.  And maybe, just maybe, their words will light our way.  

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with CRPS and multiple co-morbidities for over four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

Virtual Nature Scenes May Help Relieve Minor Pain

By Crystal Lindell

Nature scenes may help relieve minor acute pain – even if you only “see” the nature scene in a virtual reality program. That’s according to new research published this week in, appropriately, the journal Nature Communications. 

Researchers administered mild electric shocks to cause a pain response in 49 healthy volunteers, and then showed them a virtual reality scene that was either a nature scene of a lake, an urban cityscape, or an indoor office setting.  

The researchers then used both brain scans and self-reported pain reactions to analyze whether any of the scenes reduced pain. 

NATURE COMMUNICATIONS

They found that areas of the brain that handle physical pain signals were less active when people saw the virtual nature scene. Self-reported pain also was lower in the nature vs. urban and indoor settings. 

I will admit that, at first, I didn’t want to believe that “virtual nature scenes” could have the same mental effect as actual, living nature. But then I quickly realized that I did enjoy virtual nature scenes, fake or not. 

Every morning, after watching the news, I open the YouTube app on my Roku and select a calming nature scene to play on the TV throughout the day. In the winter, it’s a roaring fire; in the spring, a calming rainy scene; in the summer, ocean waves; and in the fall, autumn leaves rustling. 

While I’m not sure if any of the YouTube nature scenes help my physical pain, I do think they help calm my anxiety – in the same way that watching the news usually increases my anxiety. 

Of course, the mostly Austrian research team couldn’t resist slipping in a little anti-opioid messaging, writing: 

“Besides advancing our basic knowledge, such research may have considerable importance for efforts to complement pharmaceutical treatment approaches, with their well-documented negative side effects and addictive properties.”

While I’m glad they used the word “complement” instead of “replace,” it’s their mention of “negative side effects and addictive properties” that makes it clear that they do want this research to eventually lead to non-opioid pain treatments. 

But when you actually look at the study, you’ll see that it very specifically looks only at minor, acute pain. So this research should not be used to reduce pain medications for people with chronic pain. 

I’m not accusing the authors of wanting that, since they clearly think more studies are necessary. But in our current opioid-phobia environment, I do have concerns about doctors seeing the study headline and giving patients “go look at a lake” advice to reduce medication-based pain treatments.

Ideally, research like this would be used responsibly, inspiring healthcare providers to add more natural elements to places like doctor’s offices and even nursing homes – whether those nature elements are virtual, digital or physical paintings. 

Previous research has found that patients recovering from surgery used fewer analgesics and recovered faster if their hospital window gave them a view of trees, rather than a brick wall.

However, I remain extremely doubtful that this type of research will ever result in finding a way to use nature elements as an effective pain treatment in any way that even reduces the need for pain medication.

A Pharmacist’s Oath: ‘The Relief of Suffering’

By Carol Levy

The words “First do no harm” are actually not in the Hippocratic Oath, at least not directly:

"I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous."

But the meaning is clear: Do no harm to patients.

I expect that from doctors, although many of us have been disappointed by their adherence to the Hippocratic Oath. What never occurred to me was that pharmacists also have an oath, which includes these pledges:

“I promise to devote myself to a lifetime of service to others through the profession of pharmacy. In fulfilling this vow: I will consider the welfare of humanity and relief of suffering my primary concerns.

“I will apply my knowledge, experience, and skills to the best of my ability to assure optimal outcomes for all patients. I will respect and protect all personal and health information entrusted to me.”  

The DEA has given pharmacists the freedom to ignore their oath, and has coerced some pharmacy chains into handing over our personal health information without a warrant.

Every time a pharmacist refuses to fill a prescription, questions why you need a medication, or asks personal questions, they are not using the “Oath of a Pharmacist.” They are instead exercising a “corresponding responsibility” under DEA regulations, which requires them to make sure a prescription for opioids and other controlled substances is valid and needed.

As far as the DEA is concerned, pharmacists have the same legal obligation as a physician to ensure that a medication has a “legitimate medical purpose.”   

The DEA essentially allows pharmacists to substitute their opinion for that of the doctor, even if it runs counter to their pledge about “the relief of suffering.” Refusing to dispense opioid medication to a pain patient who is dependent on them basically ensures suffering.

I can see some pharmacists saying, “Well, I think that opioids are dangerous. Not filling the prescription is absolutely for the welfare of the patient.”

That argument sounds legitimate. But is it?

The pharmacist has not examined the patient. He/she does not know their medical history or the effect on them when their pain goes untreated. They haven't seen the patient’s x-rays, imaging, and other tests that confirm an injury or disorder that’s causing their pain.

Pharmacists may see us as their “patient" but we are really their customers. They have a product that we want. We come to them with the legally required paperwork to make a purchase. If they have the medication, there should be no issue. They should hand it over and we should pay for it.

If you know little or nothing about a customer, where do you get the right to decide what medication they can get? That decision should be left to our doctors, not to pharmacists or the DEA. 

Those of us in chronic pain have a desperate need for doctors we can trust.  The next step is pharmacists we can trust. Pharmacists who honor their oath to relieve suffering. Not pharmacists who are so fearful of the DEA that they think their best option is to ensure our suffering.

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

The Pain Scale is a Pain, but Doctors Ignore Alternatives

By Crystal Lindell

When I first started having debilitating rib pain more than 10 years ago, doctors would constantly ask me to rate my pain on a scale of 1-10. 

It was the worst pain I had ever experienced, but I didn’t want to sound too dramatic, so I would almost always tell them an 8 or a 9. 

However, I started to notice a troubling pattern: No matter what number I said, the doctors still treated me with the same mostly dismissive attitude. 

So, regardless of whether I said my pain was a 7, a 3, or even an 11, the doctors I was dealing with did not seem to believe me. They seemed to think I was being dramatic no matter what. 

At the time, I blamed myself. Surely I must not be communicating the severity of my pain well, if these doctors are still ignoring me, I thought. 

So I started scrounging around online for alternatives. I assumed that if I just explained myself better, then they would react with the urgency that I felt the situation called for.  

I also thought that perhaps I was picking the wrong number, which was causing doctors to dismiss me as someone who couldn’t accurately assess my own body. 

The first thing I found was a pain scale written out, where each number was explained, like this one from “My Health Alberta.” 

It includes a written description with each number, starting with:

0 = No pain.

1 = Pain is very mild, barely noticeable. Most of the time you don't think about it.

2 = Minor pain. It's annoying. You may have sharp pain now and then.

3 = Noticeable pain. It may distract you, but you can get used to it.

And so on. 

Looking at that chart, I decided that my new rib pain – which was eventually diagnosed as intercostal neuralgia that was caused by Ehlers-Danlos Syndrome – was a: “8 = Very strong pain. It's hard to do anything at all.”

The fact that I would often just lay on the exam table silently crying while I prayed that whatever doctor I was in front of would actually help me, made me feel pretty confident in my assessment of an “8.”. 

It was, indeed, very strong pain that made hard to do anything at all. 

I was also naive enough to believe that if I personally added the descriptor when I gave my number, that it would serve as some sort of magic spell that would finally unlock access to the treatment I needed. 

Alas, that did not work. Doctors just nodded and typed “8” into their little online chart and then moved on through the appointment the same way that they always had: With their trademark unsympathetic arrogance and suggestions about taking more gabapentin.  

After that, I went a step further: I tried to find a pain scale that felt more relevant. Eventually, I discovered the Quality of Life Scale, (QOLS). It’s designed for chronic pain patients to show how their pain is impacting their daily life.  

It's a reverse of the traditional pain scale, in that 0 is the worst pain, while 10 means you're doing pretty well. 

It features descriptions like: 

0: Stay in bed all day. Feel hopeless and helpless about life. 

1: Stay in bed at least half the day. Have no contact with the outside world. 

All the way up to:

10: Go to work/volunteer each day. Normal daily activities each day. Have a social life outside of work. Take an active part in family life. 

At the time, I was about a 4: Do simple chores around the house, minimal activities outside the home two days a week. 

Although those "activities" were just doctor's appointments, I was technically leaving my house every few days.

Looking back, I truly believed that using the QOLS scale with my doctors would be the breakthrough moment for my relationship with them. I remember printing it off and putting it in my healthcare binder full of hope that they would finally understand how bad things were for me. 

Alas, I was mistaken. 

Before I started having chronic pain, I was working a full-time job and a part-time one, and living independently. But my pain had gone untreated for so long that I had cut back on everything possible in my life. I shifted my full-time job to a work-from-home position, quit my part-time job, gave up my apartment, and moved in with family, who lived 2 hours away. 

I still remember thinking that when I told the two doctors I was seeing regularly about how I needed to quit my job and move in with my mom, that they would FINALLY see how severe my pain had been. Afterall, these were the real-life implications of where I was on the QOLS pain scale! 

Wrong again. Instead, both doctors just expressed quiet relief that I was moving out of the area, and thus I’d no longer be their problem! 

Thankfully, when I moved, I did find a new doctor who did take my pain seriously. And although it took some time to get the pain treatment situation under control, it’s been relatively well managed for years now. 

What I have come to realize about the pain scale is that most of the time, it’s not so much an assessment tool as it is a way for patients to feel a false sense of agency over their medical situation.

It’s like a little breadcrumb that doctors give patients to make them feel included in their own healthcare. 

Because in practice, doctors don’t give much weight to whatever number you say your pain is at. Instead, they rely on their own visual and sometimes physical assessment to determine how much pain they think you are in. 

This can be especially problematic for patients from oppressed or marginalized groups, because doctors are less likely to take their pain seriously in general. 

It’s also a huge problem for patients with chronic pain. That’s because when you live with pain every single day, you don’t react to a 10 on the pain scale the same way someone with acute pain would. It’s just not possible to live everyday screaming at the top of your lungs, or performing whatever stereotypical action doctors assume that someone with “real” pain would exhibit. 

For example, one of the things I learned quickly is that I needed to keep myself as calm as possible during a pain flare, because the more stressed and anxious I got, the more it elevated my pain. 

However, a 10 on the pain scale is still just as horrific, even if you’ve been at a 10 for months at a time. And it should elicit the same sense of urgency that would be customary for someone in acute pain saying that their pain was at a 10. 

In fact, I’d go so far as to argue that a 10 for a chronic pain patient can be even more harmful, because if you’re dealing with that level of pain for a long time, it will likely destroy your life. 

Unfortunately, most doctors can’t grasp any of this. So if you show up to an emergency room with an eerie sense of calm while trying to tell them that your pain is a 10/10, they are likely to be very skeptical. 

I wish I could end this column with some sort of solution for patients, but sadly, I don’t think I have one. If your doctor isn’t taking your pain seriously, they probably won’t change their approach just because you show them a different version of a pain scale. 

No, the solution to the frustrating experience of the pain scale will have to come from the other side: from doctors. 

My suggestion is that they start by just believing all patients and then responding accordingly. Unfortunately, under our current healthcare system, I don’t see that happening any time soon.

So all I’ve got for now, is all I’ve ever got: My hope for you that you’re not in too much pain today. 

What Do Tariffs and the War On Pain Patients Have in Common? Fentanyl-Phobia

By Crystal Lindell

Did you know that there’s a drug that kills 480,000 people in the United States annually? Based on years of headlines, you might assume that the drug in question is fentanyl, but you’d be wrong. It’s actually tobacco.

There’s another drug that kills 178,000 people in the United States annually. It's called alcohol. 

Meanwhile, illicit fentanyl, the street drug everyone loves to be scared of, was involved in the deaths of 73,654 people in 2022.

Any death is too many, but those statistics highlight how disproportionately we focus on fentanyl as the deadly drug we should fear most. 

For years now, overdoses involving fentanyl have been used to justify denying pain patients access to much safer prescription opioids, such as hydrocodone. Now it’s also being used as an excuse for new tariffs against Canada, Mexico and China, which went into effect this week. 

During his speech Tuesday night, President Donald Trump justified the tariffs by saying: “They’ve allowed fentanyl to come into our country at levels never seen before, killing hundreds of thousands of our citizens and many very young, beautiful people, destroying families. Nobody has ever seen anything like it.”

The situation shows how many aspects of our daily lives are impacted by the War on Drugs, whether it’s a doctor’s visit or economic policy. It also highlights just how much the war is used to justify whatever economic, healthcare, and law enforcement policies our government wants at any given time. 

Because, of course, if any of this was actually about saving lives, then we would be focusing on the drugs that kill more people than fentanyl: alcohol and tobacco. Those are both still sold over the counter though. 

Instead, our leaders lean on whipping up a moral panic about fentanyl. The end result is the same, whether that moral panic is used against patients or neighboring countries: it causes unnecessary pain and suffering. 

The headline on an NBC News article calls out the fact that the tariffs probably won’t reduce fentanyl deaths: “Trump says tariffs were enacted to curb fentanyl, but U.S. overdose deaths are already declining.”

The article also points out that nearly all confiscated fentanyl is seized at the US-Mexican border. In the current fiscal year, just 10 pounds of fentanyl have been recovered at the Canadian border, compared to 5,400 pounds at the Mexican border.

Canadian Prime Minister Justin Trudeau is under no illusion that fentanyl deaths are the real reason for the tariffs. MarketWatch reported that Trudeau called Trump’s rationale for using tariffs to stop the miniscule amount of fentanyl coming from Canada "completely bogus." 

"We have to fall back on the one thing he has said repeatedly – that what he wants is to see a total collapse of the Canadian economy, because that will make it easier to annex us," Trudeau said. "We are, of course, open to starting negotiations, (but) let us not fool ourselves about what he seems to be wanting."

Stepping back a bit, it’s important to note that the fentanyl bogeyman is just the latest facet of the War on Drugs, which the United States has been fighting and losing since 1971. The tariffs highlight how little the so-called war has ever been based on actually helping anyone. 

It would be wise to be skeptical anytime the War on Drugs is used as a justification for government policy. Just because a government claims something is the reason for a law or policy, that does not mean that that is the actual reason. That applies to tariffs, as well as limiting opioid pain medication. 

Skepticism should be applied to all drug-related policy in the United States. 

Documentary Looks at Plight of Children with Ehlers-Danlos Syndrome

By Madora Pennington

What would you do if your child were in pain? Not just in pain, but in screaming agony, day in and day out? If your child could no longer function?

The documentary "Complicated" follows four families who have a child with Ehlers-Danlos Syndrome (EDS), a rare genetic disorder that causes collagen and other body tissue to be fragile. EDS, named after the two doctors who first identified its peculiar symptoms, impacts those who have it in wildly different ways.

Collagen makes up a third of the body’s protein and is the glue that holds tissue together. To have defective collagen that stretches when it should hold firm can cause almost any part of the body to malfunction.

Over a century after its discovery, EDS is still poorly understood. There are no treatments to remedy the collagen defect itself. Patients and providers are often left groping for solutions for the damage flawed collagen wreaks.

If you have EDS like I do, you already know that what you are told to do to get better depends on the opinions of the specialists you happen to see. Don’t be surprised if they contradict each other, recommend treatments that have no studies behind them, have no understanding or experience with EDS at all, or recommend what is most lucrative for them.

As we see in Complicated, adolescence can be a particularly fraught time for the EDS child. As the body grows, the weight and stresses of longer, heavier limbs can overload the joints.  A growing EDS child may suddenly blow up in pain in places that used to be fine. Former activities can be impossible.

For reasons not well understood, the changing hormones of puberty can provoke a downturn in functioning, with issues like profound fatigue, GI problems, dizziness, allergic reactions, and so on.

Kids who become unable to eat get misdiagnosed with eating disorders. Kids too fatigued to get out of bed get labeled with depression, avoidance, or malingering. These kids are very sick in very strange ways that don’t happen to people with normal collagen.

Failed Surgeries

Spoiler alert and trigger warning for Complicated: two of the teenagers with hypermobile Ehlers-Danlos Syndrome (one of 13 varieties of EDS) tragically succumb in early adulthood. Both underwent extensive spine repairs in their teenage years.

These invasive treatments not only didn’t work, but lead to dangerous complications like loose and infected hardware implanted in their spines that, in the end, could not be repaired and destroyed all quality of life. Unfortunately, the documentary’s audience is left in the dark about how these families came to select these surgeries.

A study from 2012 warned against such surgery, concluding that half the EDS patients experience complications, despite a conservative surgical approach. “The surgeon choosing to operate on EDS patients must do so with extreme caution,” researchers warned.

Another horrifying outcome that Complicated does explore is how EDS families can be accused of medical child abuse (MCA). Also called Munchausen syndrome by proxy, MCA occurs when a parent or caregiver falsifies or exaggerates symptoms in their child and demands treatment that turns out to be harmful. Families with rare, poorly understood and very difficult conditions like EDS can go to extraordinary lengths to seek relief for their child’s suffering.

Andrea Dunlop, host of the podcast “Nobody Should Believe Me” and author of "The Mother Next Door: Medicine, Deception, and Munchausen by Proxy," explains how parents can fall into this trap.

“Munchausen is not seeking a second opinion or even hamming it up a little bit to make sure the doctor takes you seriously. It is a pattern of deliberate and often extremely well-researched deception perpetrated for the intrinsic reward of sympathy, attention, and — to a degree — the sheer thrill of fooling people,” Dunlop wrote.

MCA is diagnosed through medical records. If the records show parents claiming diagnoses for which there is no evidence, diagnoses never actually given by a doctor, or a caregiver’s demand for escalating interventions that pose great risk, those are red flags that something more sinister may be happening.

Complicated leaves out the specifics of how these families ended up under the microscope for MCA. It ends with one family’s joyous reunion and return to a place they love: Disneyland.

For this child, the family complied with child protective services and the courts by stopping excessive medical interventions. For all the EDS cases the documentary looks into, this child fared the best.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies.