Response to CEO Murder Shows Depth of Frustration with Health Insurers  

By Simon Haeder

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

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

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

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

Patchwork Healthcare

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

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

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

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

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

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

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

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

The Role of Insurers

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

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

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

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

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

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

Blame the System, Not Just Insurers

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

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

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

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

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

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

Should We Diagnose Random Strangers on the Internet?

By Crystal Lindell

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

At least sometimes. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You Are a Medical Commodity

By Dr. David Hanscom 

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

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

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

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

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

3 Patient Stories: George, Teresa and Tom

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

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

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

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

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

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

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

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

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

Why Is This Happening?  

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

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

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

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

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

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

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

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

Profits Over Safety

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

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

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

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

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

What Qualifies Someone as Disabled?

By Crystal Lindell

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Dr. Lynn Webster

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

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

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

The Opioid Crisis

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

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

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

The Cult of Trump

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

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

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

The Mangione Phenomenon

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

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

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

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

What This Reveals About Us

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

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

Moving Forward

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

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

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

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

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

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

By Crystal Lindell

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

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

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

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

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

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

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

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

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

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

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

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

Vigilante Justice

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

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

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

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

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

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

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

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

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

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

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

7 Practical Gift Ideas for People with Chronic Pain

By Crystal Lindell

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

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

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

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

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

1. Heated Blankets

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

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

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

Find it on Amazon here: Tefici Electric Heated Blanket Throw

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

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

Find it on Amazon here: Shavel Micro Flannel Heated Blanket

2. Home Coffee Machine

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

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

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

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

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

3. Sound Machine

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

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

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

Find it on Amazon: EasyHome Sleep Sound Machine

4. Pajama Pants

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

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

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

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

5. Streaming Devices

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

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

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

Find it on Amazon: Roku Express 4K+

6. Art Supplies

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

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

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

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

7. Gift Cards

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

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

Find it on Amazon: Amazon gift cards

If a New Blood Test Can Detect EDS, Will Doctors Even Use It?

By Crystal Lindell

New research points to a potential blood test for hypermobile Ehlers Danlos syndrome (hEDS). But even if the test becomes a reality, I’m skeptical that doctors will use it wisely.  

The study, recently published in the American Journal of Medical Genetics, was funded by the Ehlers-Danos Society. It identifies potential blood-based biomarkers that could help diagnose hEDS, as well as hypermobility spectrum disorders (HSD). 

Researchers examined blood samples from 466 adults, including 94 diagnosed with hEDS and 80 with HSD, and found a protein (fibronectin) with a unique pattern in every participant with hypermobility. 

“The study revealed the presence of a specific 52 kDa fragment of fibronectin in the blood of every individual with hEDS and HSD. This fragment was notably absent in healthy controls, individuals with other types of EDS, and those with various kinds of arthritis,” the Ehlers Danlos Society explained. 

“The consistent presence of the 52 kDa fibronectin fragment in individuals with hEDS and HSD suggests a possible common underlying pathophysiology.”

So basically they found a biomarker that seems to only show up in people with hypermobility, and they are hoping to use this biomarker to create a blood test. The identification of these fragments could lead to the development of the first blood test for hEDS and HSD, providing a more reliable diagnostic tool for healthcare providers.

In theory, this is good news. A blood test would help more people get an hEDS diagnosis, since it’s seemingly more straight-forward than the physical evaluation and family history used to diagnose hEDS now. It currently takes an average of 12 years before someone gets an EDS diagnosis.

However, I’m skeptical about how a blood test would be used in practice. 

Something I always think about is how visually obvious it is that my joints hyperextend. Any doctor who met me should have been on the alert for hEDS within five minutes. And yet, it still took years for me to get evaluated for EDS, and even then it only happened because I pushed for it. 

Shortly after I was diagnosed, I mentioned it to a nurse who I’d been seeing regularly for months for lidocaine treatments and she said, “Oh yes, your elbows do overextend. I see that.” 

Okay, well if you can see it that easily, why hadn’t you ever bothered to look for it? Why did I have to spend months researching EDS myself, and then bring it up to doctors who had never even mentioned it as a possibility?

If doctors and nurses ignore obvious visual markers now, I don’t have much faith that they’ll be proactive in ordering something more arduous like a blood test.  

Not to mention that once there’s a blood test for something, it’s often treated by doctors as both infallible and the end point of evaluation. This happens regardless of how reliable the blood test even claims to be. 

I still remember sitting in an emergency room in my 20’s in extreme pain while the doctor looked me in the eye and said, “It’s definitely not your gallbladder. The blood work for that came back normal.” 

Yeah, but it turned out it was my gallbladder. I was having a gallbladder attack caused by gallstones, which showed up on an ultrasound that I finally got a couple months later. 

But that particular blood test isn't very accurate when it comes to diagnosing gallbladder attacks, as an article from Merck Manual explains: "Laboratory tests usually are not helpful; typically, results are normal unless complications develop."

Whether or not that ER doctor knew that the gallstone blood test was unreliable doesn’t really matter at the end of the day, because he presented the information to me as though the blood test was a perfect indicator – and I believed him. 

The result was that I spent months after that enduring additional gallstone attacks, while waiting for another doctor to override him and order the ultrasound.  

Another time, a medication I was taking was causing excessive bruising on my legs, to the point that there was more black and purple than skin tone. My then-doctor ran blood work and said that “everything was normal.” 

So again, the blood test resulted in a faulty conclusion, because something was definitely abnormal. 

A few years later, when I was finally diagnosed with hEDS, I realized that one of the symptoms is heightened bruising, and thus the medication I had taken had sent that into overdrive. EDS bruising does not always show up in blood tests because it’s not caused by the same factors that cause bruising in other patients. 

If my then-doctor had taken the time to look at the visually obvious bruising on my legs and decided to override the “normal blood work” results, maybe I would have been diagnosed with EDS sooner. 

Make no mistake, I’m glad that there is ongoing research into a blood test for hEDS, and I hope we eventually get one and that it will lead to more people finally being diagnosed. 

It’s just that I don’t have as much faith in doctors as many of them seem to have in blood tests. So I remain skeptical about how it would actually be used in practice.


Can the Trump Administration Make America Healthy Again?

By Stephanie Armour, KFF Health News

Within days of Donald Trump’s election victory, health care entrepreneur Calley Means turned to social media to crowdsource advice.

“First 100 days,” said Means, a former consultant to Big Pharma who uses the social platform X to focus attention on chronic disease. “What should be done to reform the FDA?”

The question was more than rhetorical. Means is among a cadre of health business leaders and non-mainstream doctors who are influencing President Donald Trump’s focus on health policy.

Trump’s return to the White House has given Means and others in this space significant clout in shaping the nascent health policies of the new administration and its federal agencies. It’s also giving newfound momentum to “Make America Healthy Again,” or MAHA, a controversial movement that challenges prevailing thinking on public health and chronic disease.

Its followers couch their ideals in phrases like “health freedom” and “true health.” Their stated causes are as diverse as revamping certain agricultural subsidies, firing National Institutes of Health employees, rethinking childhood vaccination schedules, and banning marketing of ultra-processed foods to children on TV.

Public health leaders say the emerging Trump administration’s interest in elevating the sometimes unorthodox concepts could be catastrophic, eroding decades of scientific progress while spurring a rise in preventable disease. They worry the administration’s support could weaken trust in public health agencies.

Georges Benjamin, executive director of the American Public Health Association, said he welcomes broad intellectual scientific discussion but is concerned that Trump will parrot untested and unproven public health ideas he hears as if they are fact.

Experience has shown that people with unproven ideas will have his ear and his “very large bully pulpit,” he said. “Because he’s president, people will believe he won’t say things that aren’t true. This president, he will.”

But those in the MAHA camp have a very different take. They say they have been maligned as dangerous for questioning the status quo.

The election has given them an enormous opportunity to shape politics and policies, and they say they won’t undermine public health. Instead, they say, they will restore trust in federal health agencies that lost public support during the pandemic.

“It may be a brilliant strategy by the right,” said Peter McCullough, a cardiologist who has come under fire for saying covid-19 vaccines are unsafe. He was describing some of the election-season messaging that mainstreamed their perspectives.

“The right was saying we care about medical and environmental issues. The left was pursuing abortion rights and a negative campaign on Trump. But everyone should care about health. Health should be apolitical.”

Donald J. Trump Jr./ X

The movement is largely anti-regulatory and anti-big government, whether concerning raw milk or drug approvals, although implementing changes would require more regulation. Many of its concepts cross over to include ideas that have also been championed by some on the far left.

Robert F. Kennedy Jr., an anti-vaccine activist Trump has nominated to run the Department of Health and Human Services, has called for firing hundreds of people at the National Institutes of Health, removing fluoride from water, boosting federal support for psychedelic therapy, and loosening restrictions on raw milk, consumption of which can expose consumers to foodborne illness. Its sale has prompted federal raids on farms for not complying with food safety regulations.

Means has called for top-down changes at the U.S. Department of Agriculture, which he says has been co-opted by the food industry.

Though he himself is not trained in science or medicine, he has said people had almost no chance of dying of covid-19 if they were “metabolically healthy,” referring to eating, sleeping, exercise, and stress management habits, and has said that about 85% of deaths and health care costs in the U.S. are tied to preventable foodborne metabolic conditions.

A co-founder of Truemed, a company that helps consumers use pretax savings and reimbursement programs on supplements, sleep aids, and exercise equipment, Means says he has had conversations behind closed doors with dozens of members of Congress. He said he also helped bring RFK Jr. and Trump together. RFK Jr. endorsed Trump in August after ending his independent presidential campaign.

“I had this vision for a year, actually. It sounds very woo-woo, but I was in a sweat tent with him in Austin at a campaign event six months before, and I just had this strong vision of him standing with Trump,” Means said recently on the Joe Rogan Experience podcast.

The former self-described never-Trumper said that, after Trump’s first assassination attempt, he felt it was a powerful moment. Means called RFK Jr. and worked with conservative political commentator Tucker Carlson to connect him to the former president. Trump and RFK Jr. then had weeks of conversations about topics such as child obesity and causes of infertility, Means said.

“I really felt, and he felt, like this could be a realignment of American politics,” Means said.

He is joined in the effort by his sister, Casey Means, a Stanford University-trained doctor and co-author with her brother of “Good Energy,” a book about improving metabolic health. The duo has blamed Big Pharma and the agriculture industry for increasing rates of obesity, depression, and chronic health conditions in the country. They have also raised questions about vaccines.

“Yeah, I bet that one vaccine probably isn’t causing autism, but what about the 20 that they are getting before 18 months,” Casey Means said in the Joe Rogan podcast episode with her brother.

The movement, which challenges what its adherents call “the cult of science,” gained significant traction during the pandemic, fueled by a backlash against vaccine and mask mandates that flourished during the Biden administration. Many of its supporters say they gained followers who believed they had been misled on the effectiveness of covid-19 vaccines.

In July 2022, Deborah Birx, covid-19 response coordinator in Trump’s first administration, said on Fox News that “we overplayed the vaccines,” although she noted that they do work.

Anthony Fauci, who advised Trump during the pandemic, in December 2020 called the vaccines a game changer that could diminish covid-19 the way the polio vaccine did for that disease.

Eventually, though, it became evident that the shots don’t necessarily prevent transmission and the effectiveness of the booster wanes with time, which some conservatives say led to disillusionment that has driven interest in the health freedom movement.

Federal health officials say the rollout of the covid vaccine was a turning point in the pandemic and that the shots lessen the severity of the disease by teaching the immune system to recognize and fight the virus that causes it.

Postelection, some Trump allies such as Elon Musk have called for Fauci to be prosecuted. Fauci declined to comment.

Joe Grogan, a former director of the White House’s Domestic Policy Council and assistant to Trump, said conservatives have been trying to articulate why government control of health care is troublesome.

“Two things have happened. The government went totally overboard and lied about many things during covid and showed no compassion about people’s needs outside of covid,” he said. “RFK Jr. came along and articulated very simply that government control of health care can’t be trusted, and we’re spending money, and it isn’t making anyone healthier. In some instances, it may be making people sicker.”

The MAHA movement capitalizes on many of the nonconventional health concepts that have been darlings of the left, such as promoting organic foods and food as medicine. But in an environment of polarized politics, the growing prominence of leaders who challenge what they call the cult of science could lead to more public confusion and division, some health analysts say.

Jeffrey Singer, a surgeon and senior fellow at the Cato Institute, a libertarian public policy research group, said in a statement that he agrees with RFK Jr.’s focus on reevaluating the public health system. But he said it comes with risks.

“I am concerned that many of RFK Jr.’s claims about vaccine safety, environmental toxins, and food additives lack evidence, have stoked public fears, and contributed to a decline in childhood vaccination rates,” he said.

Measles vaccination among kindergartners in the U.S. dropped to 92.7% in the 2023-24 school year from 95.2% in the 2019-20 school year, according to the Centers for Disease Control and Prevention. The agency said that has left about 280,000 kindergartners at risk.

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

10 Tips for Surviving the Holidays With Chronic Pain

By Crystal Lindell

The holiday season can be stressful, even if you go into it with full health. If you have chronic pain or any type of chronic illness, it can really wear you down, making it difficult to fully enjoy the season's magic and community. It can even make you start to resent the holidays and your family. 

I’ve been navigating the holidays with chronic pain for more than a decade, and have learned there are ways to make things easier and more joyful. 

Many of them come down to doing less so that you can enjoy more – which is good advice in general if you have chronic pain. But it’s particularly important around the busy holiday season. 

Here are my 10 tips to survive the holidays with chronic pain. Be sure to leave any tips you have in the comment section below! 

1. Check Pharmacy Hours

First things first: Make sure you can get your meds. 

My rural pharmacy is closed on Sundays and every major holiday. That means that if I have a refill due on Christmas Eve, I need to either have my doctor send the prescription the day before or wait until they reopen on Dec. 26 to get my medications. 

God forbid if I forget to ask and have to do Christmas Day without pain medication. At that point, I might as well cancel Christmas. 

Thankfully, my doctor has been pretty good at sending in refills a day early when the pharmacy is set to be closed. But he only does it when I remember to ask him ahead of time. 

So check now if your pharmacy is closed on any of your upcoming refill days, and plan ahead with your doctor. 

2. Consider Skipping Home Decorations

A few years ago, my family had a really rough run of horrible things happen. When we got to the holidays, I didn’t have any energy or spirit left for Christmas decorations. 

That doesn’t mean we didn’t have any cozy holiday spirit at home though. We put YouTube videos of fireplaces crackling on our living room TV, and also played ones that had Christmas decorations around the mantle and holiday music playing in the background (this was one of our favorites).

At a time when I needed the holiday magic, but didn’t have the energy to create it myself, the virtual fireplace videos really helped us enjoy the season. 

Decorating for the holidays is both expensive and energy consuming, so if chronic illness means you don’t have it in you to do it, opt for something virtual instead. After all, sometimes holiday magic means turning to YouTube. 

3. Say No To Events

Decades ago, one of my friends gave me a piece of advice that I still carry with me today: Only do things that you want to do or that you need to do. Skip the stuff that you feel like you “should” do. 

There can be a lot of pressure around the holidays to make sure you go to every family event from every branch of the family tree. It gets even more intense if you have complicating factors like a significant other’s family, divorced parents, or friends who you consider family. 

If you have a chronic illness though, I highly recommend sticking to my friend’s sage advice: Only go to events that you want to go to or that you need to go to. Skip the ones that you feel like you “should” go to. 

Maybe this means seeing just one side of the family this year or skipping tree lighting festivals that you’d gone to in the past, so that you have the energy to actually enjoy Christmas Day celebrations. 

Saying “no” in this case means that you can say an enthusiastic “yes” to other stuff. 

4. Plan Rest Days

Rest days are pretty antithetical to American culture, but when you have a chronic illness you either learn to embrace them, or your body forces them onto you. 

If I have a large holiday event on my calendar, I now know to plan an equally large rest day to complement it. I also never book two things on the same day – even if one is in the morning and the other is in the evening – because I know that my body can’t handle it. 

So if you’re doing two family gatherings this year for Christmas, consider doing Dec. 23 and Dec. 25 so that you can rest on Dec. 24. And if you want to go to a New Year’s Day party, consider skipping the midnight countdown on New Year’s Eve so that you know you’ll get enough sleep. 

5. Give Homemade, Used and Inexpensive Thoughtful Gifts

Being in chronic pain often means being low on money. Don’t let it stress you out though. Having chronic pain also means that you often spend lots of time at home on your phone or computer — which is perfect if you want to track down gifts that are both inexpensive and thoughtful. 

People love thoughtful gifts more than anything expensive. Last year I made my family a homemade cookbook of all our favorite family recipes. Because I have a laser printer at home, the main financial costs were just the binders and the plastic sleeves that I used for the pages. And then I got all the gift bags for $1.25 each at Dollar Tree. 

Of course, compiling all the recipes and laying it all out was time consuming, but time is something that I do have, especially since I was able to do a lot of the cookbook layout literally from my couch. 

Everyone LOVED the cookbooks. In fact, they loved it so much that I’m planning to make a second volume this year. 

Other thoughtful inexpensive gifts include things like homemade baked goods, used books, socks with little sayings on them, and eBay or Facebook Marketplace items that you know they’ll love. 

Stores known for their low prices, like Dollar Tree and Five Below also have great options. Three years ago I got my brother a $5 pet bed for his cat, who still uses it on a regular basis to this day. 

You definitely don’t have to spend a lot to spread holiday cheer. 

6. Wear Compression Socks During Travel

The holiday season usually means long car rides or airplane travel. There’s something about meds related to chronic pain that seem to cause feet swelling in those situations — especially ibuprofen. 

But a good pair of compression socks can really help. They sell inexpensive ones on Amazon, but you can also get them at your local pharmacy. The socks can make such a difference in how your legs feel, can help prevent blood clots, and can even help make sure your shoes aren’t too tight after hours sitting in a car. 

Plus, when compression socks are hidden under a pair of pants, nobody will even know you’re wearing them!

7. Shower the Night Before

Anyone with chronic illness is acutely aware of how much energy taking a shower and getting ready can take. 

If you know you have a long day ahead of you, showering the night before can be an easy way to help you conserve energy for the next day’s events. 

Just add a little dry shampoo to your hair the next morning, if needed, and nobody will know the difference – but you’ll definitely notice how much more energy you have to endure a busy day. 

8. Consider Hosting 

I know this tip could be controversial because hosting itself can come with a lot of physical work, mental stress, and financial costs — I get that. 

But it’s a trade off. What you put in on the front end you might get back ten-fold on the back end: You get to be in your own home for the holiday – and don’t have to travel back home when it’s over. 

Plus, if you have pets, you don’t have to worry about whether you should take them with you, leave them home alone for a long period of time, or even find a pet sitter. You can just be with them at home. 

Yes, you’ll still have to spend time after the party cleaning up, but you can take as long as you want to do that. 

If you find that you’re most comfortable in your own home, consider hosting this year. 

9. Make Holiday Meals a Potluck

Whether or not you host, I always recommend doing potluck meals for the holidays. 

This quite literally spreads the cost and stress of meal preparation out among the group, so that nobody gets overwhelmed. Anyone who doesn’t have the energy to cook can always grab something at the store, even if it’s something inexpensive like Hawaiian Rolls. 

As an added bonus, if you have dietary restrictions, this also means you can make sure that your dishes meet them, so you know you’ll have something to eat.

10. Limit COVID Exposure 

I know it’s not always practical to mask for family gatherings, but just being aware of COVID risk, getting vaccinated, and masking for travel can really help minimize your COVID exposure. 

If you're sick with COVID symptoms or you know someone else at an upcoming event is sick, definitely feel comfortable staying home. After all, the last thing anyone with a chronic health problem needs is another health problem. 

You deserve to have a magical holiday season, especially if you’re also struggling with health issues. But you don’t have to do everything like a healthy person would to enjoy the festivities. With these tips and an open heart, you’re sure to find some holiday joy this season! 

12 Holiday Gifts for People with Chronic Pain and Illness

By Pat Anson

Are doctors and pharmacists helping the DEA spy on pain patients? Does Big Pharma control how healthcare news is reported? Is the Epstein-Barr Virus the hidden cause of your chronic pain? Can kratom be used safely? Are you buzzed that Willie Nelson wrote a cannabis cookbook?

The answers to these and other questions can be found in PNN’s annual holiday gift guide. If you live with chronic pain and illness or have a friend or family member who does, here are 12 books that would make great gifts over the holidays. Or you can always “gift” one to yourself. Click on the book cover or title to see price and ordering information.

The Epstein-Barr Virus: A New Factor in the Care of Chronic Pain

Dr. Forest Tennant examines the Epstein-Barr Virus (EBV) and its hidden role in causing chronic pain. We are all carriers of EBV, which is normally harmless and dormant. But when the virus reactivates, it is carried throughout the body, infecting and damaging body tissues. Dr. Tennant says anyone with chronic pain severe enough to require daily pain medication may have EBV reactivation, and should take steps to diagnose and treat it. 

Policing Patients: Treatment and Surveillance of the Opioid Crisis

Prescription Drug Monitoring Programs (PDMPs) were launched across the country to help prevent drug abuse and save lives. In actuality, author Elizabeth Chiarello says PDMPs are “Trojan horse” surveillance tools used by law enforcement to spy on patients. PDMPs interfere with the practice of medicine by turning doctors and pharmacists into undercover agents — often pitting them against their own patients.

Greed to Do Good: The CDC’s Disastrous War on Opioids

Dr. Charles LeBaron worked for nearly three decades as an epidemiologist for the Centers for Disease Control and Prevention. Although not directly involved in the CDC’s opioid prescribing guideline, LeBaron recognized the disastrous consequences it had on patients. In this book, he gives an insider’s perspective on the CDC’s institutionalized arrogance and how its misguided strategy to reduce overdoses only made the opioid crisis worse.

Follow the Science: How Big Pharma Misleads, Obscures, and Prevails

Journalist Sharyl Attkisson exposes how the pharmaceutical industry infiltrated government and academia, enabling it to put profits over people by controlling how healthcare is covered by the news media. “We exist largely in an artificial reality brought to you by the makers of the latest pill or injection,” Attkisson writes. “Invisible forces work daily to hype fears about certain illnesses, and exaggerate the supposed benefits of treatments and cures.”

Lies I Taught in Medical School

Inspired by his own health problems, Dr. Robert Lufkin wrote this book to expose the “medical lies” that contribute to chronic illness — some of which he taught as a professor at UCLA and USC. Lufkin believes pills and procedures are prescribed too often to mask symptoms, when diet and lifestyle changes can resolve many chronic conditions like diabetes, hypertension, obesity, and cardiovascular disease.

The Big Book of Kratom: The Ultimate Manual to Understanding and Using Kratom

Author Fallon J. Smith takes a deep dive into the pros and cons of kratom, gleaned from many years of using it himself. New kratom users can learn about the various strains and methods of ingesting the herbal supplement to treat everything from chronic pain and anxiety to addiction and depression. Smith also shares important lessons about dosing, side effects, and the potential risks of kratom withdrawal and addiction.

Willie & Annie Nelson’s Cannabis Cookbook

Legendary singer/songwriter Willie Nelson and his wife Annie share their favorite recipes for getting high and full at the same time. Part travelogue and part cannabis cookbook, there’s a colorful story behind every recipe, such as Baked Eggs & Asparagus (with 17mg of THC), Vegan Cannabis Butter, Cannabis Chocolate Cake, and Buttermilk Fried Chicken (no THC).

On Call: A Doctor’s Journey in Public Service

In this memoir, Dr. Anthony Fauci shares some of the highlights — and lowlights — from nearly 40 years working for the National Institutes of Health, including the crucial roles he played in fighting AIDS, the Ebola virus, SARS, anthrax and, of course, Covid-19. Fauci grew up in modest circumstances, living above his father’s Brooklyn pharmacy, to become a health advisor to seven presidents and one of the most famous doctors in world.

Grown Woman Talk: Your Guide to Getting and Staying Healthy

Dr. Sharon Malone is an OB/GYN who wrote this book to help older women deal with the complexities of aging. Often ignored or gaslighted by the healthcare system, older women may have their chronic pain and discomfort dismissed as female hysteria caused by menopause. Dr. Malone has tips to end this “normalized suffering” and empower grown women to live better, age better, and get better medical treatment.

Long Illness: A Practical Guide to Surviving, Healing and Thriving

Drs. Meghan Jobson and Juliet Morgan wrote this book to give patients and providers a better understanding of long-lasting illnesses such as autoimmune disease, chronic fatigue, chronic pain, inflammation and Long Covid. They take a holistic approach to managing symptoms through cognitive behavioral therapy, traditional Eastern medicine, mindfulness and self-care — emphasizing that recovery is a process and not always a destination.

Toxic Stress: How Stress Is Making Us Ill

Dr. Lawson Wulsin is a psychiatrist who has found that toxic stress and childhood trauma often play hidden roles in the development of heart disease, diabetes, depression and chronic illnesses in midlife. In this book, Dr. Wulsin offers practical advice and tools to recognize signs of toxic stress in our lives, and learn how to help your mind and body recover from it.

The Long Covid Reader

Author Mary Ladd shares the stories of 45 people living with Long Covid, who recount in essays and poems how COVID-19 continues to impact their lives long after their initial infections. A long-hauler herself, Ladd spent a year gathering personal stories about Long Covid in an effort to humanize the neglected suffering of millions of people who live with a mysterious chronic illness from the “world's biggest mass-disabling event.”

These and other books about living with chronic pain and illness can be found in PNN’s Suggested Reading page.  PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

Shingles and My 10-Year-Old Bottle of Vicodin      

By Cynthia Toussaint

A few years ago, a friend who’d been through a rowdy case of shingles tried to spook me.

“You of all people, Cynthia, have to get the shingles vaccine. You couldn’t go through this level of pain with all you’ve got going on,” she said.

Yeah, yeah, I thought, normies who don’t live with the flame-broiler called Complex Regional Pain Syndrome can’t hack the small stuff.

While Laura’s warning was well-intentioned, I decided to skip the shot because I’d heard it was a real ass kicker. That, and I’m already an Olympic-level pro at neuropathic pain. I’d be fine without getting the shingles vaccine.      

I bet on the wrong horse.    

In early August, a mysterious pain on the side of my left leg woke me. I’d never had aching pain that hurt so much, and rousted my partner John in alarm. Muscling through my day, the ache turned lava hot while I moaned and yelped. By bedtime, I was writhing and screaming. No position offered a smidge of relief and I ended up pretzelled against the foot board after only a couple hours of sleep.   

I couldn’t make heads or tails of this new pain. It burned something fierce like CRPS, but was unfamiliar. Terrified, I pointed out to John the places on my thigh where piercing pain, like striking arrows, were erupting. Worse, there was a “hatchet” in my groin.

42 years into CRPS, could this be a different kind of pain rearing its ugly head? The new version came complete with a high fever and wipe-out fatigue.

No amount of my old standby’s – rest, heat, distraction, kitty cuddling – offered relief. In fact, the pain kept amping higher, rendering me useless.

Soon, a bright-red, ghoulish rash appeared and began to spread by the hour. It felt like I was starring in my own horror film, with no pause button on the remote.

The next day, it hit me. This is goddamn shingles and I scooted off to an immediate care clinic.

I was disappointed to get a young male doctor and, true to form, he dismissed my symptoms by announcing that I’d burned myself with a heating pad. His only advice was for me to take a picture of the rash for reasons unknown. 

That night, while the rash continued to march on, the redness turned to bubbling blisters, and the next day I found myself back at immediate care.   

This time at the clinic I hit the jackpot, as a skilled and caring female doctor took about three seconds to diagnose shingles. Livid over the previous day’s dismissal, as treatment time was now of the essence, she instructed me to immediately pick up anti-viral medication and start them as soon as I got home.

Before leaving the room, she gave me a major fright. She looked into my eyes and told me that my shingles might become chronic, especially with my long CRPS history. At that moment, I had no doubt I was in for a world of unchartered hurt.                

For the next two months, except for doctor appointments, I lived between my bed and the couch, surviving one minute at a time. The blisters spread from the top of my thigh down to my knee, and up onto my left buttocks. Mixed with exquisite pain were patches of numbness, and my dermatologist gently warned that this might indicate nerve death.        

My allodynia was so severe I couldn’t bear anything touching the rash, and the never-ending pain kept me awake nights. I despised hearing from doctors, again and again, that I had the worst case of shingles they’d ever seen. Their biggest concern was that the rash would spread to my right side, in which case they suspected it would travel to my eyes and I’d likely lose my sight.   

Vicodin to the Rescue

The pain got so bad, John pleaded with me to take a Vicodin from a 10-year-old bottle he’d asked me to keep, just in case. In the past, this was unthinkable as my primary physician warned me that, due to being on a benzodiazepine, combining both medications might suppress my breathing. Despite that, I didn’t hesitate and got my first taste of blessed relief.

Soon my frantic pain doctor directed me to up my dose to four 5mg Vicodin tablets a day. Scared due to being opioid-naïve, I went on three instead. I could survive the pain then, but had zero quality of life. During this miserable time, I gulped laxatives to keep the pipes flowing, and for 10 days hobbled no further than our condo balcony. I was slowly cancelling my life and couldn’t even tolerate a visitor.

I ruminated over worst case scenarios. What if my pain stays chronic at a level ten? Also, my dermatologist told me I might be scarred forever.

Even if my pain improves, could I ever show my disfigured leg in public? Upon seeing the angry rash, my sister-in-law innocently chirped, “You can’t get in the pool with that, Cynthia. It’ll frighten the other swimmers.” I knew she was right and wanted to sob.

Mercifully, in the last month, the pain and rash (four tubes of scar gel and counting!) started to retreat, bit by bit. With great trepidation, I successfully weaned off the Vicodin, but sure enough, I’m left with post-herpetic neuralgia, the chronic pain I so dreaded.

While my numbness and allodynia are improving, the hatchet pain in my groin hasn’t dissipated. I’m over-the-moon happy to be swimming again with no problem, but for the first time this former ballerina is less than limber on her left side, which makes Pilates and Feldenkrais movement therapy formidable challenges.

While there are no guarantees, I remain optimistic for total healing because I take such good care of my body and mind. Three cheers for self-care!

Hands down, shingles at its apex was the worst pain experience of my life, and because of my CRPS, it was far, FAR worse than what a healthy person would have experienced. My doctors and I suspect the immunotherapy I took for cancer care over two years ago played a major role in getting shingles now, as it’s been the root of three prior serious pain complications.                   

While I can’t go back in time and take Laura’s sage advice about getting the almighty shingles vaccine, I can share my cautionary tale in hopes you’ll do so. With a caveat, I shuddered to learn the vaccine – which I’ll be getting in February – isn’t full proof. Inoculated folk can still get shingles, but those cases are rare and usually less severe, which is especially beneficial for those already wrangling with neuropathic pain.          

While I’m slowly moving my shingles nightmare (albeit with PTSD) into the rearview mirror, I’m haunted by a horrific question. Because my pharmacy refused to fill my pain doctor’s new prescription for Vicodin, what would have happened to me if not for my 10-year-old bottle?

In the grips of the worst pain and torture I’ve ever experienced and the absolute hopelessness of relief, in desperation what might I have done?

I don’t know, but am glad as hell I didn’t have to find out. My god, where is the mercy for people with pain?

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 Complex Regional Pain Syndrome (CRPS) and multiple co-morbidities for over four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

FDA’s New Rules Aim to Make Pharma Ads Easier to Understand

By Crystal Lindell

The Food and Drug Administration is hoping that its new rules will make pharmaceutical ads on TV and radio easier to understand. 

Commercials for pharmaceutical drugs must now include a “major statement” about side effects and contraindications in “a clear, conspicuous, and neutral manner.” The rule applies to direct-to-consumer (DTC) ads for prescription drugs and what conditions they are used to treat. 

The new regulations are a response to something many drug makers figured out long ago: people tend to tune out when they start to hear a long list of potential side effects and interactions, which are usually rushed through at the end of drug commercials. By then, consumers may have tuned out the downsides of the medication. 

“If you’re a company and you’re worried about possible FDA enforcement or product liability and other litigation, all your incentives are to say more, not less,” Torrey Cope, a food and drug lawyer, told the AP.

The law firm Lerman Senter broke down the five new standards the FDA requires companies to meet in drug ads. All commercials must now include:

  1. Consumer Friendly Language: Ads must clearly state the name of the drug, and a major statement of side effects must be presented in language that is readily understandable. It should not include technical or medical jargon.

  2. Understandable Audio: Audio information must be understandable in terms of volume, articulation and pacing, and should be as understandable as the rest of the commercial. “Rapid fire” disclosures will no longer be permitted.

  3. Major Statement Must Be Presented Concurrently in Text and Audio: Television ads must present the major statement simultaneously in the audio and visual sections.

  4. Text Must Be Easily Readable: The on-screen text must be presented against a contrasting background for sufficient duration, and in a font size and style that is easily readable.

  5. No Distractions. Advertisements cannot have statements, text, images or sounds that detract from comprehension of the major statement. No other sounds, including music or catchy jingles, should be heard during the side effects disclosure.

While the rule went into effect a few months ago, companies have until November 20 to be in full compliance. So while you may have already noticed pharma ads changing, all of them should be in compliance starting this week. 

In its report about the changes, the FDA said that while drug ads often have a caveat urging people to “ask your doctor” about a medication, pharmaceutical companies are incentivized to make the ads deceptive in various ways. 

“Like all advertisers, prescription drug firms have ample business incentives to present their products in a positive light to potential consumers,” the FDA said. “But those business incentives do not assure clear communication of the advertised drug’s negative attributes to consumers.”

While no federal law has ever banned pharmaceutical companies from directly advertising to consumers, the practice didn't really take off until about 40 years ago. Currently, the United States and New Zealand are the only two countries that allow DTC drug advertising. 

In its report, “Background on Drug Advertising,” the FDA explains: 

"Until the mid-1980s, drug companies gave information about prescription drugs only to doctors and pharmacists. When these professionals thought it appropriate, they gave that information to their patients. However, during the 1980s, some drug companies started to give the general public more direct access to this information through DTC ads."

As someone who was born in the mid 1980s, I remember being surprised as an adult when I learned that most other countries ban pharma companies from advertising directly to consumers. 

While it’s difficult to imagine that the U.S. would ever ban the ads completely, there’s definitely a good case for heavily regulating them. A 2005 study found pharmaceutical ads that encouraged consumers to talk with their doctors “have a profound effect on physician prescribing” and could promote overuse or inappropriate prescribing.

In other words, drug companies are very good at creating ads that make people want to buy their products, whether they need them or not. Let’s be real: if drug advertising didn’t work, companies would not be spending over $15 billion a year promoting their medications. 

I’m glad to see the FDA amping up these regulations, so people have a better understanding of drug ads. But it remains to be seen how these agency regulations will hold up under the incoming Trump administration.   

Will Trump Let RFK Jr. ‘Go Wild’ with Public Health?

By Arthur Allen, KFF Health News

Many scientists at the federal health agencies await the second Donald Trump administration with dread as well as uncertainty over how the president-elect will reconcile starkly different philosophies among the leaders of his team.

Trump announced Thursday he’ll nominate Robert F. Kennedy Jr. to be secretary of the Health and Human Services Department, after saying during his campaign he’d let the anti-vaccine activist “go wild” on medicines, food, and health.

Should Kennedy win Senate confirmation, his critics say a radical anti-establishment medical movement with roots in past centuries would take power, threatening the achievements of a science-based public health order painstakingly built since World War II.

Trump said in a post on the social platform X that “Americans have been crushed by the industrial food complex and drug companies who have engaged in deception, misinformation, and disinformation when it comes to Public Health,” echoing Kennedy’s complaints about the medical establishment. The former Democratic presidential candidate will “end the Chronic Disease epidemic” and “Make American Great and Healthy Again!” Trump wrote.

Vaccine makers’ stocks dipped Thursday afternoon amid news reports ahead of Trump’s RFK announcement.

If Kennedy makes good on his vision for transforming public health, childhood vaccine mandates could wither. New vaccines might never win approval, even as the FDA allows dangerous or inefficient therapies onto the market. Agency websites could trumpet unproven or debunked health ideas. And if Trump’s plan to weaken civil service rights goes through, anyone who questions these decisions could be summarily fired.

“Never has anybody like RFK Jr. gotten anywhere close to the position he may be in to actually shape policy,” said Lewis Grossman, a law professor at American University and the author of “Choose Your Medicine,” a history of U.S. public health.

Kennedy and an adviser Calley Means, a health care entrepreneur, say dramatic changes are needed because of the high levels of chronic disease in the United States. Government agencies have corruptly tolerated or promoted unhealthy diets and dangerous drugs and vaccines, they say.

Means and Kennedy did not respond to requests for comment. Four conservative members of the first Trump health bureaucracy spoke on condition of anonymity. They eagerly welcomed the former president’s return but voiced few opinions about specific policies. Days after last week’s election, RFK Jr. announced that the Trump administration would immediately fire and replace 600 National Institutes of Health officials. He set up a website seeking crowdsourced nominees for federal appointments, with a host of vaccination foes and chiropractors among the early favorites.

At meetings last week at Mar-a-Lago involving Elon Musk, Tucker Carlson, Donald Trump Jr., Kennedy, and Means, according to Politico, some candidates for leading health posts included Jay Bhattacharya, a Stanford University scientist who opposed covid lockdowns; Florida Surgeon General Joseph Ladapo, who opposes mRNA covid vaccines and rejected well-established disease control practices during a measles outbreak; Johns Hopkins University surgeon Marty Makary; and Means’ sister, Stanford-trained surgeon and health guru Casey Means.

All are mavericks of a sort, though their ideas are not uniform. Yet the notion that they could elbow aside a century of science-based health policy is profoundly troubling to many health professionals. They see Kennedy’s presence at the heart of the Trump transition as a triumph of the “medical freedom” movement, which arose in opposition to the Progressive Era idea that experts should guide health care policy and practices.

It could represent a turning away from the expectation that mainstream doctors be respected for their specialized knowledge, said Howard Markel, an emeritus professor of pediatrics and history at the University of Michigan, who began his clinical career treating AIDS patients and ended it after suffering a yearlong bout of long covid.

“We’ve gone back to the idea of ‘every man his own doctor,’” he said, referring to a phrase that gained currency in the 19th century. It was a bad idea then and it’s even worse now, he said.

“What does that do to the morale of scientists?” Markel asked. The public health agencies, largely a post-WWII legacy, are “remarkable institutions, but you can screw up these systems, not just by defunding them but by deflating the true patriots who work in them.”

FDA Commissioner Robert Califf told a conference on Nov. 12 that he worried about mass firings at the FDA. “I’m biased, but I feel like the FDA is sort of at peak performance right now,” he said. At a conference the next day, CDC Director Mandy Cohen reminded listeners of the horrors of vaccine-preventable diseases like measles and polio. “I don’t want to have to see us go backward in order to remind ourselves that vaccines work,” she said.

Stocks of some the biggest vaccine developers fell after news outlets led by Politico reported that the RFK pick was expected. Moderna, the developer of one of the most popular covid-19 vaccines, closed down 5.6%. Pfizer, another covid vaccine manufacturer, fell 2.6%. GSK, the producer of vaccines protecting against respiratory syncytial virus, hepatitis A and B, rotavirus, and influenza, fell just over 2%. French drug company Sanofi, whose website boasts its products vaccinate over 500 million annually, tumbled nearly 3.5%.

Exodus From Health Agencies?

With uncertainty over the direction of their agencies, many older scientists at the NIH, FDA, and Centers for Disease Control and Prevention are considering retirement, said a senior NIH scientist who spoke on the condition of anonymity for fear of losing his job.

“Everybody I talk to sort of takes a deep breath and says, ‘It doesn’t look good,’” the official said.

“I hear of many people getting CVs ready,” said Arthur Caplan, a professor of bioethics at New York University. They include two of his former students who now work at the FDA, Caplan said.

Others, such as Georges Benjamin, executive director of the American Public Health Association, have voiced wait-and-see attitudes. “We worked with the Trump administration last time. There were times things worked reasonably well,” he said, “and times when things were chaotic, particularly during covid.” Any wholesale deregulation efforts in public health would be politically risky for Trump, he said, because when administrations “screw things up, people get sick and die.”

At the FDA, at least, “it’s very hard to make seismic changes,” former FDA chief counsel Dan Troy said.

But the administration could score easy libertarian-tinged wins by, for example, telling its new FDA chief to reverse the agency’s refusal to approve the psychedelic drug MDMA from the company Lykos. Access to psychedelics to treat post-traumatic stress disorder has grabbed the interest of many veterans. Vitamins and supplements, already only lightly regulated, will probably get even more of a free pass from the next Trump FDA.

Medical Freedom’ vs ‘Nanny State

Trump’s health influencers are not monolithic. Analysts see potential clashes among Kennedy, Musk, and more traditional GOP voices. Casey Means, a “holistic” MD at the center of Kennedy’s “Make America Healthy Again” team, calls for the government to cut ties with industry and remove sugar, processed food, and toxic substances from American diets. Republicans lampooned such policies as exemplifying a “nanny state” when Mike Bloomberg promoted them as mayor of New York City.

Both the libertarian and “medical freedom” wings oppose aspects of regulation, but Silicon Valley biotech supporters of Trump, like Samuel Hammond of the Foundation for American Innovation, have pressed the agency to speed drug and device approvals, while Kennedy’s team says the FDA and other agencies have been “captured” by industry, resulting in dangerous and unnecessary drugs, vaccines, and devices on the market.

Kennedy and Casey Means want to end industry user fees that pay for drug and device rules and support nearly half the FDA’s $7.2 billion budget. It’s unclear whether Congress would make up the shortfall at a time when Trump and Musk have vowed to slash government programs. User fees are set by laws Congress passes every five years, most recently in 2022.

The industry supports the user-fee system, which bolsters FDA staffing and speeds product approvals. Writing new rules “requires an enormous amount of time, effort, energy, and collaboration” by FDA staff, Troy said. Policy changes made through informal “guidance” alone are not binding, he added.

Kennedy and the Means siblings have suggested overhauling agricultural policies so that they incentivize the cultivation of organic vegetables instead of industrial corn and soy, but “I don’t think they’ll be very influential in that area,” Caplan said. “Big Ag is a powerful entrenched industry, and they aren’t interested in changing.”

“There’s a fine line between the libertarian impulse of the ‘medical freedom’ types and advocating a reformation of American bodies, which is definitely ‘nanny state’ territory,” said historian Robert Johnston of the University of Illinois-Chicago.

Specific federal agencies are likely to face major changes. Republicans want to trim the NIH’s 27 research institutes and centers to 15, slashing Anthony Fauci’s legacy by splitting the National Institute of Allergy and Infectious Diseases, which he led for 38 years, into two or three pieces.

Numerous past attempts to slim down the NIH have failed in the face of campaigns by patients, researchers, and doctors. GOP lawmakers have advocated substantial cuts to the CDC budget in recent years, including an end to funding gun violence, climate change, and health equity research. If carried out, Project 2025, a policy blueprint from the conservative Heritage Foundation, would divide the agency into data-collecting and health-promoting arms. The CDC has limited clout in Washington, although former CDC directors and public health officials are defending its value.

“It would be surprising if CDC wasn’t on the radar” for potential change, said Anne Schuchat, a former principal deputy director of the agency, who retired in 2021.

The CDC’s workforce is “very employable” and might start to look for other work if “their area of focus is going to be either cut or changed,” she said.

‘It Won’t Be Harmless’

Kennedy’s attacks on HHS and its agencies as corrupted tools of the drug industry, and his demands that the FDA allow access to scientifically controversial drugs, are closely reminiscent of the 1970s campaign by conservative champions of Laetrile, a dangerous and ineffective apricot-pit derivative touted as a cancer treatment.

Just as Kennedy championed off-patent drugs like ivermectin and hydroxychloroquine to treat covid, Laetrile’s defenders claimed that the FDA and a profit-seeking industry were conspiring to suppress a cheaper alternative.

The public and industry have often been skeptical of health regulatory agencies over the decades, Grossman said. The agencies succeed best when they are called in to fix things — particularly after bad medicine kills or damages children, he said.

The 1902 Biologics Control Act, which created the NIH’s forerunner, was enacted in response to smallpox vaccine contamination that killed at least nine children in Camden, New Jersey. Child poisonings linked to the antifreeze solvent for a sulfa drug prompted the modern FDA’s creation in 1938. The agency, in 1962, acquired the power to demand evidence of safety and efficacy before the marketing of drugs after the thalidomide disaster, in which children of pregnant women taking the anti-nausea drug were born with terribly malformed limbs.

If vaccination rates plummet and measles and whooping cough outbreaks proliferate, babies could die or suffer brain damage.

“It won’t be harmless for the administration to broadly attack public health,” said Alfredo Morabia, a professor of epidemiology at Columbia University and the editor-in-chief of the American Journal of Public Health. “It would be like taking away your house insurance.”

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

The Stress of Navigating Opioid Shortages As a Patient

By Crystal Lindell

At 9:30 am Monday morning, I got one of the most dreaded phone calls that someone taking a controlled substance can get – my pharmacy was completely out of my pain medication, Morphine Sul ER. 

Chronic shortages of prescription opioids were finally impacting me directly. 

At first, the pharmacist tried to make it sound like there was just a small delay, asking me, “How how many pills you have left?”

None. I had none left. Because pain medication refills usually aren’t filled until you completely run out. There’s not even a one-day leeway built in, because god forbid pain patients have one extra pill ever. 

Even if I did have some left, I couldn’t tell the pharmacist that, because it might risk having that used against me later. Afterall, if I had extras, that shows that I don’t need to be prescribed as many pills as I was getting. 

You’re always risking something as a pain patient. If you try to plan too far ahead by stockpiling extra pills, they could use that to reduce what you’re prescribed. And if you don’t plan ahead at all, you risk physical pain and withdrawal if there are any issues getting your refill – issues beyond your control like a drug shortage. 

As it turned out, it wouldn’t have mattered if I did have some pills leftover because the situation was worse than the pharmacist was initially letting on. This wasn’t an issue of waiting for an afternoon shipment or even a next-day restock. The pharmacist didn’t know when my medication would be back in stock at all. 

She said she had been requesting more pain medication every day, but their supplier wasn’t providing any updates on a timeline for when that would happen. So she suggested that I call around to other pharmacies to see if any of them had it in stock. 

There’s just one problem: the pain contract I had to sign to get a monthly opioid prescription technically bans me from getting refills at different pharmacies. I don’t think there are any exceptions in the contract. And if I break it, I risk losing access to the only medication that makes it possible for me to function on a daily basis. 

So even if I could find another pharmacy, I wasn’t sure if my doctor would let me get the medication filled there. 

The pharmacist was surprisingly understanding of this, and said that she had already called my doctor before calling me, so she was hopeful that they would be accommodating. 

At that point I realized that any plans I had for my Monday morning were now canceled, because I was going to have to spend the next few hours trying to navigate this. 

I made one last attempt to get the situation resolved without having to loop in another pharmacy, asking if they had an alternative medication that wasn’t too expensive because I don’t have health insurance. My medication is an extended release opioid, and the pharmacists said all they really had was the instant-release versions – which I knew my doctor would not want to swap in.

So, another pharmacy it would have to be. 

I did wonder for a moment if my pharmacy was lying to me about being out of stock. It was just last month that I had to negotiate the price of this same medication with them after they tried to increase the price by $50. 

Maybe they just didn’t want to deal with me, a long-term opioid patient, any more. So after the attempted price increase failed to deter me, they were trying a different tactic. 

The thing is, how would I even find that out? As far as I know, there’s no accountability for pharmacies that lie to patients about why they aren’t able to fill a prescription. Most people understand why that’s concerning when it comes to things like birth control or insulin, but when it’s pain medication, the general public tends to side with the pharmacist who doesn’t want to fill the prescription. 

At that point, I started calling other pharmacies. Thankfully, a locally owned one said they had the medication in stock and that they could fill it. I called my doctor to see if they’d transfer the prescription, and his receptionist took down the message. Then, I waited. 

I spent the next few hours anxious about whether this would all work out, and how long it would be until I got my refill. Finally, at about 1 pm, I saw in MyChart that the medication had been sent to the new pharmacy. 

Then I called the new pharmacy to make sure they saw my prescription come through and to ask what the cash price was. It was going to be $52, about $16 more than I paid at the other pharmacy. I probably could have asked them about using a GoodRx coupon, but I was already throwing a controlled substance prescription on them at the last minute, and they had it in stock, so I didn’t want to make waves. 

A few hours later it was finally filled, sort of. At 3 pm I arrived at the pharmacy to pick it up, after driving 25 minutes on rural roads to get there. 

They handed me the bottle and said, “Oh, by the way, we’re two pills short. Hopefully we will have those in for you later this week. So you can come back and pick them up then.”

Another 50 minutes of round-trip driving was suddenly in my future. 

I’m thankful that I found a pharmacy with any of my medication in stock, and I’m happy that my doctor seemed to handle the prescription transfer without issue. 

What Happens Next Month?

But the entire, stressful ordeal wiped out most of my day, and now I also have to figure out what will happen next month. 

Will the shortage impacting my medication be handled by then? Or should I try to have my doctor switch my prescription to something else? And if he did that, how much would that medication cost? Should I have my prescriptions permanently transferred to the other pharmacy? Is the one I normally go to going to give me a hassle every month now?

If medication shortages don’t impact you directly, it can be easy to gloss over reports like the one from the American Society of Health-System Pharmacists (ASHP), which found that shortages of drugs used for pain, anesthesia, chemotherapy and attention-deficit/hyperactivity disorder (ADHD) “continue to be problematic.” 

Those shortages impact real people. Despite a stressful morning, I was among the lucky ones, as I was able to get it worked out within just one day. Who knows if that will be the case next month though. 

The ASHP cited reduced DEA production quotas and the fallout from opioid litigation as some of the reasons for the drug shortages, which have led to rationing at many pharmacies. In a recent PNN survey, 90% of patients with an opioid prescription said they had trouble getting it filled at a pharmacy.

We need the government to start working on behalf of patients to get this resolved. I can’t just call up the manufacturer of Morphine Sul ER and tell them to make more. It has to be the government that intervenes. 

The best place to start would be to lift the DEA production quotas – although that’s really just a start. If we’re being realistic here, there should also be production minimums, with government funding and support if needed. 

People’s lives depend on these medications. It’s time to stop pretending that these drug shortages are just trivial inconveniences. They’re harmful, and sometimes even deadly.