Documentary Looks at Plight of Children with Ehlers-Danlos Syndrome

By Madora Pennington

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

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

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

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

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

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

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

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

Failed Surgeries

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

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

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

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

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

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

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

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

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

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

You Can Get High on Hemp, Even Where Cannabis Is Illegal

By Katharine Neill Harris

In Texas, where I live, marijuana has long been illegal. Yet on a busy street in my Houston neighborhood, at least five stores within a half-mile of each other sell cannabis products that promise a strong high.

Texas isn’t alone. Due to a mix of recent legal changes and an uncertain policy landscape, residents in roughly half of American states have easy access to impairing hemp products that bear a strong resemblance to marijuana and are far less regulated.

As hemp sales soar – reaching nearly US$3 billion in 2023 – a number of states are tightening their restrictions, while experts are analyzing the public health implications. That’s why I analyzed hemp policies in all 50 states with some of my colleagues at Rice University’s Baker Institute, where I’m a drug policy fellow.

Same Plant, Different Policies

Marijuana and hemp are both varieties of cannabis sativa, a plant with many uses that produces thousands of compounds. Among them is the popular intoxicant delta-9 tetrahydrocannabinol, or delta-9 THC.

Hemp is widely valued as an industrial crop, and for most of American history, farmers freely cultivated it. But by the mid-20th century, lawmakers had grown increasingly opposed to marijuana and were concerned by hemp’s similarity to its impairment-causing cousin.

In an effort to permit hemp cultivation while prohibiting production of a psychoactive plant, the Agricultural Marketing Act of 1946 defined hemp as all parts of the cannabis plant with less than 0.3 percent concentration of delta-9 THC by dry weight. Cannabis that exceeded this threshold was considered marijuana.

The 1970 Controlled Substances Act ushered in the modern era of prohibition of marijuana and other drugs. Hemp remained technically legal, but because of its similarity to marijuana, it was listed as a Schedule I drug, alongside heroin and other substances deemed to have a high potential for abuse and no medical value.

Because of hemp’s Schedule I status, the Drug Enforcement Administration tightly regulated its production. But hemp farmers have long argued that these regulations were excessive – and in 2018, Congress agreed. That year, lawmakers passed a farm bill that removed hemp from the Controlled Substances Act and legalized the manufacture and sale of hemp and its derivatives.

Crucially, the 2018 bill still defines hemp as all parts of the plant and its derivatives that have less than 0.3 percent delta-9 THC. But it left a loophole: While delta-9 is the most well-known form of THC, it’s not the only one.

Other forms of THC, known as THC isomers, have similar effects. These isomers, like delta-8 and delta-10 THC, can be derived from the hemp plant, and like delta-9 THC, they can cause impairment. The 2018 Farm Bill legalized all of them.

In 2023, sales of hemp-derived cannabinoids reached US$2.8 billion. Market growth has been accompanied by a rise in adverse health events. Chemists have expressed alarm at how some hemp products are made, and analyses of commercially available products have found them to contain heavy metals, residual solvents and pesticides.

Given the lax regulatory environment, many public officials now question the lack of guardrails on this burgeoning hemp industry. As a result, officials and governments across the country are now enacting or considering policy changes.

Some States Have Age, Advertising and Potency Limits

In 2023, 11.4% of 12th graders said they had used hemp-derived delta-8 THC in the past year. Easy access to any substance can encourage use, and THC can have negative impacts on the adolescent brain.

While federal law prohibits the sale of tobacco and alcohol to individuals under 21, there is no similar national requirement for hemp. But at least 27 states that permit the sale of hemp-derived products now have minimum age requirements, and several others have pending legislation.

Lessons from the tobacco market also demonstrate that advertising restrictions can reduce the use of legal but potentially harmful products. Most efforts to curtail hemp advertising focus on youth. Sixteen states restrict the use of packaging and marketing materials that may appeal to minors. Meanwhile, federal regulations also limit youth-targeted marketing.

There are fewer restrictions on advertising to adults. The Food and Drug Administration does prohibit using unverified health claims to sell hemp products, but this standard gives the industry plenty of leeway. Hemp ads often tout their purported physical benefits, like reducing pain or improving sleep, or portray them as mood-boosters that can make one feel euphoric and aroused, with few downsides.

The use of products high in THC has been linked to greater risk of cannabis dependence and adverse mental health outcomes. Concerns about product potency have led all states with recreational marijuana markets to limit the amount of delta-9 THC in edible products. This threshold is typically around 10 milligrams, a dose that’s strong enough to affect most people.

Hemp is a different story. To satisfy federal requirements, hemp just has to have less than 0.3% delta-9 THC by weight. This limit sounds low, but the weight-based metric does not account for heavier products, like food and drinks.

For example, a 50-gram candy bar – roughly the size of a Snickers bar – with 150 milligrams of hemp-derived delta-9 THC is legal in the 34 states that don’t have milligram caps on hemp products. This is a dose 15 times higher than what any recreational marijuana market allows. Meanwhile, states that only restrict hemp’s delta-9 content also leave the door open to products with high amounts of other forms of THC.

At least 13 states have responded to potency concerns by adding milligram caps on the total THC permitted in a single serving of a hemp product. Some of these limits are so low – 1 milligram or less in Connecticut, New York, Montana and Rhode Island – that one serving is unlikely to cause impairment.

Enforcement Is a Wild Card

Only regulations that are enforced are effective, and states differ in the level of energy they devote to industry oversight.

In Virginia, the Office of Hemp Enforcement has issued over $12 million in fines to noncompliant hemp retailers since its creation in 2023. On the other end of the spectrum, Massachusetts considers hemp-derived THC products illegal, but it has not provided local jurisdictions with funding for enforcement, resulting in continued availability of prohibited products.

Some states with legal hemp markets have added additional sales taxes to help fund enforcement. In Nebraska, Missouri and Connecticut, attorneys general have sued hemp retailers for selling illegal items, marketing to minors and engaging in deceptive trade practices.

As the hemp industry expands, so will concerns about how to protect public health. The demand for THC, and the market to supply it, continues to grow. If lawmakers want to develop industrywide safety standards or deal with the challenges of online marketplaces that sell hemp products to minors, it will take action from Washington. In the meantime, many states and policymakers are exploring an expansive middle ground between unfettered access and blanket bans.

Katharine Neill Harris, PhD, is a Fellow in Drug Policy at Rice University’s Baker Institute for Public Policy. Her current research focuses on cannabis policy and the response to the overdose crisis.

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

Chronic Pain Is Chronically Expensive

By Crystal Lindell 

My fiancé and I both have chronic pain. Which means we both spend a lot of money trying to manage it. 

Later today, he will drive an hour and a half each way to see his pain doctor so that they can drug test him in person.  He’s the only doctor in the region who will take new pain patients, so he’s the doctor my fiancé goes to, despite the long drive.

The doctor doesn't take my fiancé’s insurance though, so he will have to pay for the appointment the same way he pays for every monthly appointment with this doctor: with $160 cash. 

And when he gets his medication refill in a few days, that will also have to be paid for with cash at the pharmacy, because his insurance won’t cover prescriptions from doctors who don’t take the insurance. So that’s another $53. 

Aside from the direct costs of that whole ordeal, there’s also the in-direct costs like gas in the car, time away from being able to work on our (very) small online business, and the energy he’ll have to spend dealing with the drive and the stress. 

While he doesn’t have to see this doctor in-person every month, he does have to pay the full price for the appointment every 30 days, along with the prescription. So we have to find a way to basically pay for the equivalent of a car payment every month just so he can have the pain medication he needs to function. 

It’s just one of the ways living with chronic pain gets expensive fast, and also stays expensive. 

There’s the obvious stuff people think of, like the cost of both of us seeing doctors and filling prescriptions. But there’s also the less obvious stuff, like the regular purchases of bulk ibuprofen, Excedrin, and of course antacids for the heartburn caused by the other medications. 

And then there’s the more expensive stuff like the closet full of orthopedic braces, crutches, and walking aids.

There's also the $100/month we spend on kratom powder, which is the only over-the-counter substance that actually helps either of us when our very limited supply of prescription pain meds aren’t enough. And with the current swing in temperatures here in northern Illinois, there are a LOT of days when our limited pain meds aren’t enough. 

We also buy Gatorade every week to take the kratom with, because we’ve found it’s the best and cheapest option to use to get the dirt-like powder down. 

It all adds up so fast, especially with seemingly unlimited inflation. And it ends up being money that we can’t use to improve our lives in other ways, like building savings, having a wedding, or paying off debt. 

Speaking of debt, there’s also the added aspect of all the medical debt I’ve racked up over the last decade, despite having insurance for most of that time. It has essentially destroyed my credit, making it that much harder to secure housing and transportation. 

From the outside, it’s easy to assume that our money troubles must be caused by either our inherent laziness or our inability to budget correctly. But when you have health issues, your money is not the same. It is both harder to get and harder to keep. 

All of these costs are non-negotiable. We can’t just skip his doctor appointment because we have unexpected car problems to pay for. We can’t go without kratom as a trade off if we have unexpected veterinary bills for one of our cats. 

There are a lot of ways that society could be set up differently to help people with chronic pain and chronic illness. Things like universal health care, universal basic income, and expanded public transportation options would go a long way.

I would hope the fact that I’m a human being makes me worthy of social supports like that, but if that’s not enough, there are plenty of selfish reasons for other people to support expanded government programs.

While you may assume that because you don’t need some of these support systems yet, then you never will, you’d be wise to reconsider. Because that’s the thing about chronic illness: If you live long enough, eventually you’ll get sick too. 

And when you do, you’ll find out just how chronically expensive chronic illness really is.

Arachnoiditis Is an Autoimmune Disease

By Dr. Forest Tennant

After several years and numerous studies, we have determined that Adhesive Arachnoiditis (AA) is an autoimmune disease – a condition in which autoantibodies or cellular elements erroneously recognize tissue as virulent or pathologic and attack it, producing inflammation and tissue destruction.

AA only occurs when inflammation forms jointly in the cauda equina and arachnoid membrane of the spine. After the inflammation becomes significant, adhesions form which fuse or “glue” cauda equina nerve roots to the arachnoid membrane. An autoimmune process is the generator and initiator of this inflammation.

The primary generator of the autoimmune process that causes AA is almost always reactivation of the Epstein-Barr virus (EBV) from its normal, dormant, parasitic state. EBV reactivation may occur multiple times over a lifetime.

This same process is now known to be a major causative factor in several cancers and other autoimmune diseases, including multiple sclerosis and systemic lupus erythematosus.

The autoimmune process of EBV has two components: autoantibodies and auto-reactivity. The latter occurs when the virus enters a cell and releases high amounts of self-antigen, which stimulates tissue destruction.

In rare cases, a virus other than EBV may generate autoimmunity and cause AA. Other viruses, especially cytomegalovirus, herpes 6, and covid, may also accelerate or potentiate EBV autoimmunity.

In the past it was generally assumed that epidural injections, spine surgery, contamination of spinal fluid by toxins, or spine trauma were the cause of AA. It is now known that these events may trigger EBV autoimmunity in spinal tissues. Our studies plainly show that AA is preceded and/or accompanied by other autoimmune conditions such as arthritis, migraine, and irritable bowel.

Medical practitioners and persons afflicted with AA must now recognize, diagnose, and treat AA as an autoimmune disease caused by EBV reactivation.

Doctors are more prone to want to treat a disease than they are to treat pain, so classifying AA as an autoimmune disease may improve pain treatment. I'm getting a lot of doctors who are coming on board with this, who see that a patient has a legitimate disease and don't mind prescribing some Vicodin, Tramadol, or Percocet to treat it.

More information about the Epstein-Barr Virus and its relationship to AA and other chronic pain conditions can be found in our book: "The Epstein-Barr Virus: A New Factor in the Care of Chronic Pain."  

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can also subscribe to its bulletins here.  

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.    

Social Security Was Boosted by Covid Deaths, But at What Cost?

By Crystal Lindell

Three years ago, on Feb. 24, 2022, I woke up at 3 am to use the bathroom, and realized I had double-digit missed text messages and voice mails – all of them filled with words like “urgent” and “immediately.”

I called my brother and he gave me the news. Overnight, our dad, David Jeffery Lindell, had died.

He had been fighting a bad COVID infection for three weeks and was hospitalized multiple times. But then he was sent home, where he had a heart attack. Paramedics tried to save his life, but my dad died hours later at the local hospital, just before midnight. 

He was 67 years old, and because he had been battling chronic physical and mental health problems for decades, he had long been declared permanently disabled by the federal government.

So, like millions of Americans who died of COVID over the last few years, my dad was on Social Security.

Now, a new report from the National Bureau of Economic Research reveals a dark twist to the pandemic: So many people died of COVID between 2020 and 2023, that it increased the Social Security Trust Fund by $205 billion.  

CRYSTAL AT AGE 3 WITH HER FATHER

Well, more specifically, the 1.7 million “excess deaths” during those years saved the fund about $294 billion. Many of those deaths were working people, which resulted in less future payroll tax contributions and more payments to surviving loved ones. Factoring that in resulted in a net increase in the fund of $205 billion. 

The most heartbreaking revelation from the report though is that $205 billion isn’t a lot of money when it comes to Social Security. According to a Marketplace article about the report, the $205 billion in savings “won’t change much in the long term; the government pays that amount in benefits every couple of months."

In other words, all those human lives lost, and it’s barely even a blip when it comes to the federal government’s finances. 

It’s easy to forget that economic reports like this are talking about real, human lives. And that those human lives touched many other lives around them. My dad’s death was like a meteor hitting our whole family, and three years later, we are only just now starting to find solid ground again. 

A lot of the framing and discourse about this new report makes it sound like the government should be happy about the financial savings. But, as a country, now would be a good time to remember that human life has value in and of itself.

My dad mattered and would still be alive today, if not for COVID. He lived at poverty levels on his monthly Social Security benefits. His death, and the deaths of millions of others who were either on social security or set to receive it, should never be framed as a “good thing” by bean counters simply because it saved our government a miniscule amount of money.  

And to be clear, it wasn’t just people currently on Social Security who “boosted” the fund. People like my long-time friend Bronson Peshlaki, who had diabetes and died of COVID in 2020 at just 44 years old, will never collect on the Social Security payments he made his entire working life. Yes, that means his death was a cost-benefit for the U.S. government, but it was also a detrimental loss to the world. 

It can feel easy to dismiss the lives of the disabled, the elderly, the mentally ill – especially as their deaths are framed as some sort of economic boost for the rest of us.

But as someone with a disability, my life has value in this world. My dad’s life also had value, and so did my friend Bronson’s life. Now, as the U.S. healthcare system faces the possibility of more severe cuts and harmful policies under the Trump administration, it’s even more urgent that we remember that.

Every time the government lets a deadly disease spread a little more or cuts back on Medicaid, real people, with souls, will die. Regardless of how much money those deaths might save us, the cost is too high.

Trump Healthcare Policies Follow Project 2025 Playbook

By Stephanie Armour, KFF Health News

Few voters likely expected President Donald Trump in the first weeks of his administration to slash billions of dollars from the nation’s premier federal cancer research agency.

But funding cuts to the National Institutes of Health were presaged in Project 2025’s “Mandate for Leadership,” a conservative plan for governing that Trump said he knew nothing about during his campaign. Now, his administration has embraced it.

The 922-page playbook compiled by the Heritage Foundation, a conservative research group in Washington, says “the NIH monopoly on directing research should be broken” and calls for capping payments to universities and their hospitals to “help reduce federal taxpayer subsidization of leftist agendas.”

Universities, now slated to face sweeping cuts in agency grants that cover these overhead costs, say the policy will destroy ongoing and future biomedical science. A federal judge temporarily halted the cuts to medical research on Feb. 10 after they drew legal challenges from medical institutions and 22 states.

‘I Have No Idea What Project 2025 Is’

The rapid-fire adoption of many of Project 2025’s objectives indicates that Trump acolytes — many of its contributors were veterans of his first term, and some have joined his second administration — have for years quietly laid the groundwork to disrupt the national health system. That runs counter to Trump’s insistence on the campaign trail, after Democrats made Project 2025 a potent attack line, that he was ignorant of the document.

“I have no idea what Project 2025 is,” Trump said Oct. 31 at a rally in Albuquerque, New Mexico, one of many times he disclaimed any knowledge of the plan. “I’ve never read it, and I never will.”

But because his administration is hewing to the Heritage Foundation-compiled playbook so closely, opposition groups and some state Democratic leaders say they’re able to act swiftly to counter Trump’s moves in court.

They’re now preparing for Trump to act on Project 2025 recommendations for some of the nation’s largest and most important health programs, including Medicaid and Medicare, and for federal health agencies.

“There has been a lot of planning on the litigation side to challenge the executive orders and other early actions from a lot of different organizations,” said Noah Bookbinder, president of Citizens for Responsibility and Ethics in Washington, a watchdog group. “Project 2025 allowed for some preparation.”

The plan, for example, calls for state flexibility to impose premiums for some beneficiaries, work requirements, and lifetime caps or time limits on Medicaid coverage for some enrollees in the program for low-income and disabled Americans, which could lead to a surge in the number of uninsured after the Biden administration vastly expanded the program’s coverage.

“These proposals don’t directly alter eligibility for Medicaid or the benefits provided, but the ultimate effect would be fewer people with health coverage,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News. “When you erect barriers to people enrolling in Medicaid, like premiums or documenting work status, you end up rationing coverage by complexity and ability to pay.”

Congressional Republicans are contemplating a budget plan that could result in hundreds of billions of dollars being trimmed from Medicaid over 10 years.

Project 2025 called for expanding access to health plans that don’t comply with the Affordable Care Act’s strongest consumer protections. That may lead to more choice and lower monthly premiums for buyers, but unwitting consumers may face potentially massive out-of-pocket costs for care the plans won’t cover.

And Project 2025 called for halting Medicaid funding to Planned Parenthood affiliates. The organization, an important health care provider for women across the country, gets roughly $700 million annually from Medicaid and other government programs, based on its 2022-23 report. Abortion made up about 4% of services the organization provided to patients, the report says.

The administration’s steps to scrub words such as “equity” from federal documents, erase transgender identifiers, and curtail international medical aid — all part of the Project 2025 wish list — have already had sweeping ramifications, hobbling access to health care and eviscerating international programs that aim to prevent disease and improve maternal health outcomes.

Under a memorandum issued in January, for example, Trump reinstated and expanded a ban on federal funds to global organizations that provide legal information on abortions.

Studies have found that the ban, known as the “global gag rule” or “Mexico City Policy,” has stripped millions of dollars away from foreign aid groups that didn’t abide by it. It’s also had a chilling effect: In Zambia, one group removed information in brochures on contraception, and in Turkey, some providers stopped talking with patients about menstrual regulation as a form of family planning.

Project 2025 called on the next president to reinstate the gag rule, saying it “should be drafted broadly to apply to all foreign assistance.”

Trump also signed an executive order rolling back transgender rights by banning federal funds for transition-related care for people under age 19. An order he signed also directed the federal government to recognize only two sexes, male and female, and use the term “sex” instead of “gender.”

The Project 2025 document calls for deleting the term “gender identity” from federal rules, regulations, and grants and for unwinding policies and procedures that its authors say are used to advance a “radical redefinition of sex.” In addition, it states that Department of Health and Human Services programs should “protect children’s minds and bodies.”

“Radical actors inside and outside government are promoting harmful identity politics that replaces biological sex with subjective notions of ‘gender identity,’” the Project 2025 road map reads.

Data Disappears

As a result of Trump’s order on gender identity, health researchers say, the Centers for Disease Control and Prevention took down online information about transgender health and removed data on LGBTQ+ health. A federal judge on Feb. 11 ordered that much of the information be restored; the administration complied but added notices to some webpages labeling them “extremely inaccurate” and claiming they don’t “reflect biological reality.”

The CDC also delayed the release of information and findings on bird flu in the agency’s Morbidity and Mortality Weekly Report. Federal workers have said they were told to retract papers that contain words such as “nonbinary” or “transgender.” And some hospitals suspended gender-affirming care such as hormone therapy and puberty blockers for youths.

Advocacy groups say the orders discriminate and pose barriers to medically necessary care, and transgender children and their families have filed a number of court challenges.

Lawyers, advocates, and researchers say implementation of many of Project 2025’s health policy goals poses a threat.

“The playbook presents an antiscience, antidata, and antimedicine agenda,” according to a piece last year by Boston University researchers in JAMA.

The Project 2025 blueprint sets out goals to curb access to medication abortion, restructure public health agencies, and weaken protections against sex-based discrimination. It would have seniors enroll by default in Medicare Advantage plans run by commercial insurers, in essence privatizing the health program for older Americans. And it calls for eliminating coverage requirements for Affordable Care Act plans that people buy without federal subsidies, which, insurance experts say, risks leaving people underinsured.

“It’s the agenda of the Trump administration,” said Robert Weissman, a co-president of Public Citizen, a progressive consumer rights advocacy group. “It’s to minimize access to care under the guise of strict work requirements in Medicaid, privatizing Medicare, and rolling back consumer protections and subsidies in the Affordable Care Act.”

The White House didn’t respond to a message seeking comment. Conservatives have said implementation of the project’s proposals would curb waste and fraud in federal health programs and free health systems from the clutches of a radical “woke” agenda.

“Americans are tired of their government being used against them,” Paul Dans, a lawyer and former director of Project 2025, said last year in a statement. “The administrative state is, at best, completely out of touch with the American people and, at worst, is weaponized against them.”

Dans did not return messages seeking comment for this article.

The Heritage Foundation has sought to separate itself and Project 2025 from Trump’s executive orders and other initiatives on health.

“This isn’t about our recommendations in Project 2025 – something we’ve been doing for more than 40 years. This is about President Trump delivering on his promises to make America safer, stronger, and better than ever before, and he and his team deserve the credit,” Ellen Keenan, a spokesperson for Heritage, said in a statement.

Versions of the document have been produced roughly every four years since the 1980s and have influenced other GOP presidents. Former President Ronald Reagan adopted about two-thirds of the recommendations from an earlier Heritage guide, the group says.

In some instances, the Trump administration hasn’t just followed Project 2025’s proposals but has gone beyond them.

The document called on the next president to scale back and “deradicalize” the U.S. Agency for International Development, an independent federal agency that provides foreign aid and assistance, including for many international health programs.

The administration hasn’t just scaled back USAID. Trump adviser Elon Musk bragged on his social media platform, X, that his “Department of Government Efficiency” fed the agency “into the wood chipper,” physically closing its offices and putting nearly all its staff on administrative leave while ending funding for its programs and disseminating misinformation about them.

But the administration risks waning public support if it adopts the project’s goals to upend U.S. health care and health policy. Almost 60% of voters said they felt negatively about Project 2025 in a September poll by NBC News.

“Project 2025 was never a thought exercise; it was always a blueprint,” said Ally Boguhn, a spokesperson for Reproductive Freedom for All, an abortion rights group. “We’re only a few weeks into his presidency, and it’s setting the groundwork for even more.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues. It would like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

Pink Tinted Glasses May Help Reduce Migraines

By Madora Pennington

To see the world through “rose-colored glasses” is to look on the bright side, ignoring the bad. This phrase is also used to describe someone who is naive or easily fooled. But real rose-colored glasses may have an actual use: reducing migraines.

Celebrity talent judge Simon Cowell recently revealed he wears them to stop his migraine attacks, which he believes are triggered by photophobia, a sensitivity to light brought on by spending long hours under bright studio lights while taping Britain’s Got Talent.

A migraine is more than just a headache. The pain can be so severe, a person cannot function. In addition to severe throbbing, often on one side of the head. Some people may have nausea, vomiting and visual disturbances, like flashes of light or a lessening of their visual field. Other migraineurs report odd tingling sensations or difficult speaking.

If you suffer from migraines, it will come as no surprise that a change in light could make a difference. More than 90% of migraine sufferers say that light can provoke a migraine attack, especially fluorescent lights.

simon cowell on ‘britain’s got talent’

There have been a few studies that suggest rose-colored glasses help migraines. A lens with a pink tint called FL-41 blocks blue and some amber and green lights on the color spectrum. This can prevent or provide relief to those who find fluorescent lights to be particularly troubling. Interestingly, one study noted that FL-41 tinted glasses also reduced eyelid twitching knows as blepharospasm and improved blinking.

Pink tinted lenses have been known as a possible migraine treatment as far back as 1991, but many patients and doctors have never heard of it. A study done then had migraineur children — kids who suffer migraines — try glasses with either a rose tint or a blue lens for 4 months. Only the children who used the pink glasses had fewer migraines. On average, the kids’ migraines were reduced from 6.2 per month to 1.6 per month.

Migraine medication is considered effective if it reduces migraines by half. So, by comparison, the pink lenses were very successful. Unlike with medication, no side effects were noted in the study on children. But one can imagine how cute those kiddos looked in their pink shades.

There is a possible explanation for why rose-colored spectacles could alleviate or prevent migraines.  It is known that migraineurs have alterations in visual signaling when suffering a migraine attack. A study using functional fMRIs showed that specially tinted lenses normalized visual activity in the brain.

A pink lens is best for reducing problematic visual stimulation. The FL-41 lens, acting as a light filter, lowers visual processing, attention and engagement. This makes a difference because it is the inappropriate increase in visual stimulation that causes or worsen migraines. I tried a pair for my last migraine and the relief was significant and immediate.

If you suffer from migraines like me, rose-tinted glasses would be an easy, inexpensive way to try to lessen your migraines. FL-41 glasses can be purchased on Amazon for as little as $25. Another option is to have an optician add an FL-41 film to your prescription glasses.

But, as always, buyer beware.

Dr. Alexander Solomon, an ophthalmologist with the Pacific Neuroscience Institute, recommends choosing a pink lens carefully. Rose-colored lenses are not the same as FL-41 lenses.

“Even among sites claiming they are selling FL-41 lenses, the quality and overall transmission of the lens may not be carefully regulated,” said Solomon.

It’s important to remember that eye strain caused by lights is only one possible cause of migraines. There can be other environmental triggers or combinations of triggers. Caffeine, stress, alcohol, skipping meals, strong smells, and even changes in weather are other known culprits. 

Experts Divided About Benefits and Harms of Opioid Tapering

By Crystal Lindell

The first time I tried to do a full taper to go off morphine – after having been on it for years – I got hit with days-long withdrawal symptoms. Restless legs, diarrhea, cold sweats, extreme anxiety, insomnia, and more. It was horrible. 

So I called my doctor and asked for advice. He was not helpful, to say the least. He basically said that none of his other patients had ever had any withdrawal symptoms from morphine, so he didn’t know what to tell me. The implication was that this was a “me” problem. 

Looking back, I’m pretty sure that his other patients had just never told him about their withdrawal symptoms, so he assumed that they didn’t have any. That’s when I first realized that doctors were not a great resource for how to taper patients off opioids. 

A new study in the journal Pain Practice confirms many of my suspicions. It explored the  attitudes of healthcare professionals about the benefits and harms of maintaining, tapering or discontinuing long-term opioid therapy. 

The researchers analyzed the opinions of 28 “opioid safety experts.” Of those, 19 were prescribing physicians, while the rest were psychologists, researchers, or healthcare administrators. 

What they found is that there is little consistent advice or help from the “experts” about tapering. If you asked one medical professional for their opinion, you may get a completely different answer from another one. 

For example, over a third of the participants (36%) believe that long-term opioid therapy should be continued, while an equal percentage think opioids should be discontinued. 

More than half (57%) believe that patients can be harmed by tapering and/or discontinuation. But 18% think tapering to a lower dose is not harmful, and 29% think patients won’t be harmed by discontinuation. There were also quite a few “experts” who were neutral on the issue.   

Some recommended slow tapers (even when a prior taper was unsuccessful) and some advocated switching patients to buprenorphine, an opioid sometimes used to treat pain but is more widely used to treat opioid use disorder.

Some would try switching patients to non-opioid pain medications and therapies (even if they were unhelpful in the past), while others favor shared decision-making with patients to give them a role in deciding treatment.

Interestingly, few of the experts said they would assess patients for opioid use disorder or overdose risk.

The bottom line is that there’s little consensus about the right treatment path for patients on long-term opioids. The researchers said medical guidelines that might address these issues “may be difficult to utilize,” leaving doctors on their own to make decisions about professional liability, changing opioid regulations, patient preferences and treatment.

“In the meantime, individual care decisions that involve weighing relative harms should draw on longstanding norms of ethical medical care that call for informed consent and patient-provider conversations grounded in mutual respect,” the authors write.

I’m glad to see them specifically mention "mutual respect” between patients and providers, because there’s an obvious answer to many of these questions: Talk to patients and then believe them. 

I can guarantee you that I, as a longtime pain patient, would have more practical advice about tapering and withdrawal than many doctors or medical experts. There’s a certain amount of insight and empathy that comes from firsthand experience with withdrawal. 

I do give credit to co-author Kurt Kroenke, MD, of the Regenstrief Institute, for warning in a press release that taking patients off opioids “may result in return or worsening of chronic pain, mental health issues, drug seeking and potentially overdose and death.” 

Kroenke also notes that opioids help patients have a family life, hold a job, participate in social activities, and improve their quality of life. 

Indeed, that’s exactly the point: Opioids do help patients in a variety of ways. And in many cases, they are the only effective pain treatment. 

My hope is that future studies like this will include more direct input from patients about their experiences. If researchers really want to figure out the best guidelines for when and how to taper successfully, they should reach out to long-term opioid patients. 

Next time, instead of talking to 28 “experts,” researchers should talk to 28 patients.

New Guideline Recommends Against Injections for Chronic Back Pain

By Pat Anson

An international panel of experts has released a new guideline strongly recommending against injections for chronic back pain, saying the procedures provide little or no pain relief and there is little evidence to support their use.

The guideline, published in The BMJ, covers 13 commonly used interventional procedures, including epidural injections, joint injections, intramuscular injections, nerve blocks, and radiofrequency ablation. The injections usually involve steroids, a local anesthetic, or a combination of the two.

The expert panel conducted an analysis of dozens of clinical trials and studies, and found “no high certainty evidence” of pain relief for any of the procedures. There was only low or moderate evidence that injections work better than a placebo or sham procedure.

Injections for chronic axial or radicular spine pain have become increasingly common in recent years, and are often touted as safer alternatives to opioid medication.

However, the injections also come with risks, including infections, prolonged pain and stiffness, accidental punctures of the spinal membrane, and rare but “catastrophic complications” such as paralysis. The risks are magnified because many of the procedures are performed multiple times on the same patient.

“The panel had high certainty that undergoing interventional procedures for chronic spine pain was associated with important burden (such as travel, discomfort, productivity loss), which would be recurring as these interventions are typically repeated on a regular basis, and that some patients would bear substantial out-of-pocket costs,” wrote lead author Jason Busse, DC, a professor of anesthesia at McMaster University in Ontario, Canada.

“The panel concluded that all or almost all informed patients would choose to avoid interventional procedures for axial or radicular chronic spine pain because all low and moderate certainty evidence suggests little to no benefit on pain relief compared with sham procedures, and these procedures are burdensome and may result in adverse events.”

Chronic back pain is the leading cause of disability worldwide. Over 72 million U.S. adults suffer from chronic low back pain, according to a 2022 Harris Poll. About a third of those surveyed rated their pain as severe and nearly half said they experienced chronic back pain for at least five years. The vast majority (80%) rated opioids as the most effective treatment.

Pain Management Needs ‘Major Rethink’

In an editorial also published in The BMJ, Jane Ballantyne, MD, an anesthesiologist and retired professor at the University of Washington, said the new guideline raises questions about whether interventional procedures should even be used to treat chronic back pain. 

“The question this recommendation raises is whether it is reasonable to continue to offer these procedures to people with chronic back pain. Chronic back pain is highly prevalent, a great deal of money is spent on the injections, and a lot of patient hopes and expectations are vested in this type of treatment,” wrote Ballantyne. 

“One might ask how the situation arose whereby we spend so much of our healthcare capital on a treatment for a common condition that compromises the lives of so many people but seemingly does not work.”

For Ballantyne to ask that is more than a little ironic. She is a longtime anti-opioid activist, a former president of Physicians for Responsible Opioid Prescribing (PROP), and was a key advisor to the CDC when it drafted guidelines that strongly recommend against opioid therapy.

With opioids increasingly difficult to obtain, many patients with chronic back pain have no alternative but to have interventional procedures, spinal surgeries, or implanted medical devices such as pain pumps and spinal cord stimulators.

Some doctors and pain clinics welcome the opportunity to bill for those expensive procedures, and refuse to give opioids to patients unless they agree to become “human pin cushions.”

“One might ask how the situation arose whereby we spend so much of our healthcare capital on a treatment for a common condition that compromises the lives of so many people but seemingly does not work.”

— Jane Ballantyne, MD

One might ask Ballantyne what patients with chronic back pain are supposed to do without injections or opioids. Her editorial provides no answers.

“This (new guideline) will not be the last word on spine injections for chronic back pain, but it adds to a growing sense that chronic pain management needs a major rethink,” Ballantyne wrote.

Earlier this month, the American Academy of Neurology released a new evidence review that found epidural steroid injections have limited efficacy, and only modestly reduce chronic back pain for some patients with radiculopathy or spinal stenosis.

Covid Contrarians Are Now in Power

By Arthur Allen, KFF Health News

In October, Stanford University professor Jay Bhattacharya hosted a conference on the lessons of covid-19 in order “to do better in the next pandemic.” He invited scholars, journalists, and policy wonks who, like him, have criticized the U.S. management of the crisis as overly draconian.

Bhattacharya also invited public health authorities who had considered his alternative approach reckless. None of them showed up.

Now, the “contrarians” are seizing the reins: President Donald Trump has nominated Bhattacharya to lead the National Institutes of Health and Johns Hopkins University surgeon Marty Makary to run the Food and Drug Administration. Yet the polarized disagreements about what worked and what didn’t in the fight against the biggest public health disaster in modern times have yet to be aired in a nonpartisan setting — and it seems unlikely they ever will be.

“The whole covid discussion turned into culture war dialogue, with one side saying, ‘I believe in the economy and liberty,’ and the other saying, ‘I believe in science and saving people’s lives,’” said Philip Zelikow, a scholar and former diplomat based at Stanford’s Hoover Institution.

Frances Lee, a Princeton University political scientist, has a book coming out that calls for a national inquiry to determine the lockdown and mandate approaches that were most effective.

“This is an open question that needs to be confronted,” she said. “Why not look back?”

For now, even with the threat of an H5N1 bird flu pandemic on the horizon, and some other plague waiting in the wings of a bat or goose in a far-flung corner of the world, U.S. public health officials face ebbing public trust as well as a disruptive new health administration led by skeptics of established medicine. On Feb. 7, the Trump administration announced devastating NIH budget cuts, although a judge put them on hold three days later.

Zelikow led the 34-member Covid Crisis Group, funded by four private foundations in 2021, whose work was intended to inform an independent inquiry along the lines of the 9/11 Commission, which Zelikow headed.

The covid group published a book detailing its findings, after Congress and the Biden administration abandoned initiatives to create a commission.

That was a shame, said Jennifer Nuzzo, director of the Pandemic Center at the Brown University School of Public Health, because “while there are some real ideological battles over covid, there’s also lots of stuff that potentially could be fixed related to government efficiency and policy.”

Bhattacharya, Makary, and others in 2023 called for a larger study of the pandemic. It’s not known whether the Trump administration would support one, Lee said.

The new CIA director, John Ratcliffe, however, has reopened the Wuhan lab leak theory, an issue that Republicans have used to try to cast blame on Anthony Fauci, an infectious disease expert and a top covid adviser to both the first Trump and Biden administrations. Sen. Ron Johnson (R-Wis.), the new head of the Senate’s Permanent Subcommittee on Investigations, says he’ll investigate what he described as a cover-up of covid vaccine safety problems.

Bhattacharya declined to respond to questions for this article. Makary did not respond to requests for comment.

Stanford epidemiologist John Ioannidis said his colleague Bhattacharya has an opportunity to advance understanding of the pandemic.

“Until now it has been mostly a war on impressions and media, kind of mobilizing the troops. That’s not really how science should be done,” Ioannidis said. “We need to move forward with some calm reflection, with no retaliation.”

Mistakes Were Made

In October 2020, Bhattacharya co-authored the “Great Barrington Declaration” with Trump White House support. It called for people to ignore covid and go about their business while protecting the old and vulnerable — without specifics about how.

Bhattacharya and Makary championed the policies of Sweden, which did not impose a harsh lockdown but emerged with a death rate far lower than that of the United States. The Swedes had advantages including lower poverty rates, greater access to health care, and high levels of social trust. For instance, by April 2022, 87% of Swedes ages 12 and over were vaccinated against covid — without mandates. The U.S. figure, for adults over 18, was 76% at the time.

After Bhattacharya’s earlier research was rebuffed by most of the public health establishment, he “curdled into a theological position that the risk wasn’t that severe and the economic costs were so high that we had to roll the dice, or segregate the elderly — which you cannot do,” Zelikow said.

Ten experts interviewed for this article largely agreed that the health establishment lost public trust after bungling the initial handling of the pandemic. Existing pandemic plans were faulty or ignored. Shortages of protective gear and inadequate testing rendered containment of the virus impossible. As time wore on, government scientists failed to emphasize that their recommendations would change as new data came in.

“We totally blew it,” former NIH Director Francis Collins said, in a discussion sponsored by Braver Angels, a group that promotes dialogue among political opponents. Though he blamed disinformation about vaccines for many deaths, he also wished public health officials had said “we don’t know” more often.

Collins said he didn’t pay enough attention to the socioeconomic impact of lockdowns. “You attach infinite value to stopping the disease and saving a life,” he said. “You attach zero value to whether this actually totally disrupts people’s lives, ruins the economy, and has many kids kept out of school in a way that they never quite recover from.”

While Fauci and other public health officials did express worries about collateral damage from mandates, U.S. measures were stricter than in much of the world. That’s left unresolved issues, such as how long schools should have been shuttered, whether mask mandates worked, and whether the public was misled about the efficacy of vaccines.

At the same time, U.S. officials failed to communicate clearly that vaccines prevented most deaths and hospitalizations. An estimated 232,000 unvaccinated Americans died from covid during the first 15 months in which shots were freely available.

Experiences with HIV control taught public health officials not to moralize about behavior, to focus on harm reduction, and to use the least restrictive methods possible, Nuzzo said. Yet politicization led to shaming of people who wouldn’t mask or refused vaccination.

Harm reduction was top of mind for infectious disease doctor Monica Gandhi when she defied lockdown orders by keeping open Ward 86, the clinic she runs for 2,600 HIV patients at Zuckerberg San Francisco General Hospital. Her patients — many poor or homeless — had to be treated in person to keep their HIV in check, she said.

In general, the lockdowns hurt low-income people most, she said. The wealthy “were happy to be shut down, and the poor struggled and struggled.” Gandhi’s two children attended a private school that quickly reopened, she said. Yet she recalled how a medical assistant burst into tears when asked how her family was doing.

“My 8-year-old is at home, on Zoom, all by himself,” the woman told Gandhi. “I have to work and he doesn’t know how to learn that way. There’s no one to give him food.”

Despite strictures, including school closures that were longer than in most European countries, the U.S.’ death rate from covid was the highest in the world, except for Bulgaria, according to an Ioannidis study of countries with reliable data.

Part of the blame lies with the first Trump administration, which “more or less just said, ‘You states manage this crisis,’” Zelikow said. “They went through a lot of somersaults. They did a lot of feckless things and then they basically just gave up,” he said. Pandemic deaths peaked in the four months after the November 2020 election that Trump lost.

Ioannidis, a critic of lockdowns, said the United States was doomed to a bad outcome in any case because of vulnerabilities in the population including poverty, inequality, lack of health care access, poorly protected nursing homes, high rates of obesity, and low levels of trust.

But the disappearance of viral diseases such as respiratory syncytial virus and flu in late 2020 showed how much worse it could have been without lockdowns, said Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia, who has noted that, while children were the least vulnerable to covid, it killed 1,700 of them by April 2023. More than a million American children had long covid by 2022, according to a new Centers for Disease Control and Prevention study.

Still Disagreement

After arising by accidental passage from bats and other animals to humans (or, alternatively, from a Chinese lab accident), the coronavirus was uncannily adept at frustrating containment efforts — and aggravating political tensions. Its ability to infect up to 50% of people asymptomatically, infection outcomes ranging from sniffles to death, waning immunity after infection and vaccination, and the shifting health impact of new variants meant “the deck was stacked against public health,” said biology professor Joshua Weitz of the University of Maryland.

In the end, teams formed along political lines. Conservatives attacked governors for depriving them of liberty, and Trump’s erroneous ramblings about curing the disease with bleach and ultraviolet light inspired intolerance on the left.

“If anyone else was president we would have had a better result,” Gandhi said. “But if Trump said the sky was blue, then goddamn it, the infection disease doctors disagreed.”

The right and left don’t even agree on the correct questions to ask about the pandemic, said Josh Sharfstein, a vice dean of the Bloomberg School of Public Health at Johns Hopkins University.

“Everyone knew that 9/11 was a terrorist attack,” he said. “But what the pandemic was and represents — there’s so much disagreement still.”

“We let children down, we let poor people down,” Ioannidis said in closing remarks at the Stanford conference. “We let our future down.”

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

Gretchen’s Journey Into Chronic Pain and Death

By Maria Higginbotham

I write this on behalf of one of my dearest friends, Gretchen Lont, a fellow pain warrior whose spirit I cherished deeply. I made a promise to her to ensure her pain story is told. Gretchen’s last hope was that by sharing her experience, we might alleviate the needless suffering of others grappling with untreated or undertreated pain.

We call ourselves pain warriors, having fought tirelessly since 2016 for the rights of those struggling with painful conditions to receive adequate pain treatment. According to the CDC, over 24% of U.S. adults — 60 million people — suffer from chronic pain, surpassing the combined numbers of Americans afflicted by heart disease, diabetes, and cancer.

Tragically, Gretchen passed away on January 19, 2025 at the age of 59, after enduring years of unbearable undertreated pain. Despite persistent pleas to her doctors, Gretchen’s words fell on deaf ears. Just days before her death, she received a devastating diagnosis: ALS, also known as Lou Gehrig’s Disease.

This story in no way reflects all the beauty and individuality that was Gretchen. It defines her struggles with untreated pain, but there was an entire life in which she lived and loved. Her children and her family were her world.

I only ask that you respect her family’s privacy during this difficult time. She was a bright light that will never be erased from our hearts. I am heartbroken at the loss of a beautiful soul and dear friend.

Before her disability, Gretchen lived life vibrantly. She adored her three sons — Zach, Jordan and Nathan — and cherished every moment with her family, including her father John, her sisters Stacy and Kristen, and brother Michael.

She worked tirelessly to provide for her children and always carved out time for joy and laughter. She lived life to the fullest.

GRETCHEN LONT IN 2019

Gretchen embodied the belief that giving is a greater blessing than receiving. Her generosity knew no bounds, and her radiant smile could light up any room. With a feisty spirit, she was a fierce protector of her loved ones. She found solace in crafting — painting and making jewelry — each piece a testament to her incredible talent.

Animals had a special place in her heart. Gretchen’s social media was filled with adorable animal pictures. She often fed the squirrels and birds in her yard and adopted a special needs cat named Cleo saying, “We’re two damaged bodies just trying to survive, and we’ll do it together.”

Gretchen's journey into pain began with an accident at an upscale restaurant in Tacoma, WA. A spill that had gone uncleaned caused her to slip and fall, resulting in a severe back injury which later required surgery. This injury ushered in years of excruciating pain, followed by joint pain, more surgeries, and a possible diagnosis of Rheumatoid Arthritis at the age of 57.

Desperate for relief, Gretchen explored every alternative pain treatment available, yet none eased her suffering. Living with chronic pain is akin to living with a chronic illness: you feel invisible. On the outside, you might appear fine, but inside your body is screaming in agony.

Eventually, she found a compassionate pain management doctor who, for many years, treated her as an individual. With the help of opioid pain medication, she managed to regain a semblance of life — spending time with her family, painting and crafting, celebrating holidays, and enjoying the beauty of nature. Her passion for art blossomed, allowing her to create stunning jewelry and amazing paintings.

A Wasteland for Pain Patients

Sadly, Gretchen’s doctor, after years of facing scrutiny from medical agencies, decided to retire, joining many other physicians who closed their doors due to the hostile environment surrounding pain management. In 2021, she gave her patients a year’s notice about her plans, in the hope it would be enough time to find new care.

Unfortunately, the state of Washington proved to be a wasteland for chronic pain patients. Most physicians here are unwilling to take on new patients who are on opioid therapy, and those who do will often refuse to continue the opioids and force the patients to try previously failed methods.

Gretchen’s only option was to have an invasive surgery for a pain pump. To qualify, she had to undergo extensive psychological and physical evaluations, which she passed. However, she was then told she had to reduce her opioid dosage by 75%. This drastic cut left her bedridden, trapped in a cycle of agonizing pain.

After months of suffering, the pain specialist told her that her insurance, Medicaid, would not cover the cost of the pain pump or surgery. In desperation, Gretchen asked if her opioid medication could be increased to a dose that would provide some relief from the agonizing pain. Unfortunately, she only received a minimal increase, leaving her to continue suffering in unbearable agony.

On October 3, 2023, Gretchen felt a deep despair settle over her. Bedridden and in relentless pain, she questioned why a person should be forced to suffer this way. There was always a battle to fight -- like finding a doctor willing to provide adequate pain treatment, dealing with pharmacists who were choosing whether or not to fill a valid prescription for medication, and insurance companies not covering prescribed pain treatment.

She felt like a burden, unable to spend time with her family or do any of the things that brought pleasure in life. The pain specialist seemed indifferent to her deteriorating condition. Gretchen made the heartbreaking decision to take all her medications in an attempt to end her suffering. Fear gripped her and she confided in her son, who immediately called 911.

Resuscitated through CPR, the ER team noted that this tragic episode could have been avoided had her pain been managed appropriately. They had seen this happen many times. Gretchen was discharged with the recommendation to consult her pain specialist about increasing her medication.

The following day, during a virtual visit, her pain specialist expressed sympathy and promised to improve her pain management. Yet, hope quickly faded the next day at an in-person meeting. The doctor declined to increase her dosage, and Gretchen continued her downward spiral.

A friend referred her to a new doctor who specialized in both primary care and pain management. This physician was willing to help, but insisted on a cautious approach. They tried various medications, which provided minimal relief, but Gretchen’s health continued to decline.

The years of untreated pain had caused irreparable damage. She was losing 5-8 pounds weekly, struggled with swallowing, and faced increasingly severe breathing difficulties. She was a mere shadow of the vibrant person she had been two years prior.

A New Diagnosis

By late December 2024, Gretchen's breathing worsened, leading her doctor to recommend a visit to the Emergency Department at UW Medical Center for treatment of suspected pneumonia and a neurology consult.

That’s when Gretchen was diagnosed with ALS and learned that the suffering she endured for so many years stemmed from that incurable, painful, and deadly disease.

gretchen 3 days before she passed

It should be known that chronic pain patients often go decades struggling with intractable pain without a definitive diagnosis. Like Gretchen, many of us are diagnosed with a rare disease or medical condition when it’s too late to do anything. 

Admitted to the hospital on January 1, 2025, Gretchen was discharged to home hospice on January 17. Just an hour after returning home, she suffered a coughing fit and anxiety attack. Gretchen had realized she was dying.

I happened to call her at that moment and the only 2 words I could make out were “hospice” and “dying.” She was immediately sent to a nearby hospital, her body frozen in fear; her eyes and mouth wide open, arms outstretched. She stayed like that for just over 24 hours before she stopped breathing.

Long before she passed, Gretchen shared these words with me:

“Please help patients like me who have no options. We did not choose to have medical conditions that cause pain. No doctors will take you if you’re a chronic pain patient. It’s devastating to be in such a vulnerable position and feel abandoned. Our medical system is supposed to provide us with compassionate care and treat us as unique individuals. Instead, pain patients have become pariahs.

I share my story because I want those in power to understand that we are not just individuals suffering in pain. We are family members with loved ones who care for us and have loved ones that we care for. We deserve to live our lives filled with laughter and joy, not confined to a bed, incapacitated, and suffering in agonizing pain. There is an easy answer: treat our pain!

Please stop punishing those who suffer in pain. Our lives matter.”

Gretchen has her angel wings now, flying free from pain — a bright light in our lives whose flame will never be extinguished

Maria Higginbotham is a patient advocate and chronic pain sufferer who has an aggressive form of degenerative disc disease. Multiple surgeries not only failed to relieve her pain, but left her with adhesive arachnoiditis, a chronic inflammation of spinal nerves. Maria has also been diagnosed with Ehlers-Danlos disease and Scleroderma.

New Illinois Law Gives Doctors Freedom to Prescribe Opioids Without Dosage Limits

By Crystal Lindell

Illinois State Senator Laura Fine (D) has seen the unintended consequences of the 2016 CDC opioid guideline first-hand. 

After Fine’s husband Michael lost his arm in a horrific head-on collision, he suffered from chronic, residual pain known as “phantom limb” pain. She watched as he often struggled to get adequate pain care because his doctors were too scared to prescribe enough opioid medication. 

 “[His] pain is real. It’s so debilitating some days that he literally cannot get out of bed,” Fine told PNN. “His doctor needs the freedom to treat that pain.”

The 2016 CDC guideline, which was meant to address opioid overprescribing, ended up being too much of an overcorrection, and led many doctors to start under-prescribing pain medication, regardless of patient need. The guideline recommended that daily doses not exceed 90 morphine milligram equivalents (MME), a threshold that was soon adopted by Illinois and dozens of other states.  

So when a state bill meant to address this issue came through the Illinois House and needed a Senate sponsor, Fine jumped at the chance.

The measure, which was approved unanimously by both chambers and signed into Illinois State law by Governor Pritzker on February 7, allows physicians to authorize prescriptions for opioids and other controlled substances without strict dosage limits:

“Provides that decisions regarding the treatment of patients experiencing chronic pain shall be made by the prescriber with dispensing by the pharmacist in accordance with the corresponding responsibility as described in federal regulations and State administrative rules. 

Provides that ordering, prescribing, dispensing, administering, or paying for controlled substances, including opioids, shall not be predetermined by specific morphine milligram equivalent guidelines. 

The Illinois law also seeks to protect patient confidentiality by preventing the release of prescription and treatment information without a legal order verified by the Illinois Department of Human Services or an administrative subpoena from the Illinois Department of Financial and Professional Regulation. 

Many states currently allow the DEA and other law enforcement agencies access to patient information in their prescription drug monitoring programs (PDMPs). Some pharmacy chains even provide that information without a warrant or subpoena.

“Just because you’re in pain, that doesn’t mean you’re doing something wrong,” Fine said. “The last thing we want to do is to make the doctors or patients feel like criminals.”

Fine also said part of why the measure was so important to her was that when patients don’t have access to prescribed opioids, it can drive them to take extreme measures, such as self-medicating, self-harm, or going to the black market.

She hopes the new law will help people suffering from chronic pain receive the care they need, without barriers or misunderstandings.

Fine said she was surprised by how many pain patients wanted to work with her to get the law passed and how important the issue was to them. She’s happy to send the message that political advocacy does work. 

STATE SEN. LAURA FINE (d)

“Getting this legislation passed, for them, was life changing,” Fine said. 

One of those advocates was Kat Hatz, who posted about the Illinois legislation on Facebook after it passed, writing:

“This was a labor of love, & we had incredible sponsors, but it’s also a testament to the fact that people’s voices were heard. It will protect a vulnerable community, chronic pain patients & their healthcare practitioners, & it helps to address disparities in healthcare that pertain to the under-treatment of pain (for) women, people of color, disabled folks, & other traditionally disenfranchised communities.”

The Illinois State Medical Society (ISMS), which backed the bill, also wrote about the importance of the law as it was moving through the legislation process. 

“The passage of this bill by the General Assembly is a win for physicians and patients, as too many doctors have become reluctant to prescribe opioid treatments to patients suffering from chronic pain out of fear of being criminalized or having their license suspended or revoked,” the society said in a statement.

The ISMS said many prescribers were worried that regulators and law enforcement would consider them “pill pushers” without understanding that the 2016 guideline is outdated. The CDC released an updated guideline in 2022 that gives doctors more flexibility in writing prescriptions.

“Every patient is different,” the ISMS said. “Pain treatment should be tailored to the needs of the individual.”

Fine said she hasn’t heard about other states taking up similar measures, but she hopes that Illinois can be an example. 

“We all need an advocate,” she told me. “Being in pain isn’t something to be ashamed of.”

Could a Popular Weight Loss Drug Reduce Pain?

By Madora Pennington

“When I look around at this room, I can't help but wonder. Is Ozempic right for me?” Jimmy Kimmel quipped to his audience of beautiful people when he hosted the Academy Awards last year.

It seems like everyone is taking Ozempic or drugs like it and losing weight. That class of drugs, known as GLP-1 medications for the hormones they enhance, slow digestion and promote feelings of satiety or fullness. As a result, people eat less and lose weight without the struggle of trying to stick to a diet. You feel fuller more quickly, eat less, and shed pounds.

GLP-1s are proving to have a lot more beneficial effects on the body than just weight loss. A recently published study found that low doses of semaglutide (the active ingredient in Ozempic and Wegovy) reduced alcohol cravings in people diagnosed with alcohol use disorder. When taking the weight-loss drugs, their alcohol intake was less.

In addition to food and alcohol, semaglutides also seem to reduce cravings for nicotine, cocaine, amphetamines and opioids, as well as problematic behaviors like gambling and compulsive shopping. Because the drugs reduce the reward chemical dopamine in the brain, those taking them are less motivated by their own brain signals to have another drink, put another item in their cart, have a hit of a drug, and so on.

Could GLP-1s also help pain patients?

The most obvious way a GLP-1 might reduce pain is through weight loss. Carrying excess weight causes additional wear-and-tear on the back and joints in the lower body. Every extra pound translates to four pounds of force on the knees, so even a modest amount of weight loss has the potential to reduce joint damage and pain.

Excess weight also limits range of motion, restricting joints and making it difficult for a person to exercise. Losing weight can lead to more physical activity, which can lessen pain and help keep the brain, joints and body healthy.

Another benefit of GLP-1 medications is that they lessen inflammation. In a recent study published in The New England Journal of Medicine, semaglutide provided substantial pain relief for patients with obesity and knee osteoarthritis. The exact mechanism of action is unclear, but researchers think its because the drug reduces inflammation and loss of cartilage in the knee joint.

“The findings confirm that substantial weight loss causes an often dramatic reduction in pain. If the effects shown in this trial are mediated by factors other than weight loss alone, new therapeutic avenues may be available,” David Felson, MD, a Professor of Rheumatology at Boston University School of Medicine, wrote in an editorial.

Other studies suggest that semaglutide could be a possible treatment for Alzheimer’s and Parkinson’s disease, as it lowers neuroinflammation, reduces plaque deposits in the brain, and helps generate new neurons. However, it’s only a supposition at this point that GLP-1s could mitigate the damage that chronic pain causes to the brain.

GLP-1s might help modulate pain in other ways. Both humans and animals turn to sweets and fat rich foods when in pain. Because GLP-1s regulate hunger and digestion, it’s possible they can improve pain. Tests on mice indicate that these drugs influence a certain nerve pain receptor. While definite answers and proof are a long way off, this discovery suggests new approaches to treating pain.

Before you run out to try them, be aware that Ozempic and other GLP-1 drugs carry risks. They often cause nausea and vomiting, and rare but serious problems such as pancreatitis, gastroparesis (paralysis of the stomach), and blindness.

They are also expensive. Insurance tends to limit semaglutide coverage to diabetics, so if you pay in cash without any discounts, 2 mg of Ozempic will cost about $1,050. Cheaper, generic semaglutides made overseas are available, as well as compounded versions made in-house by pharmacies. But those formulations have not been evaluated by the FDA and their quality is uncertain. 

Pain Clinics Used Patients as ‘Human Pin Cushions’ for Injections

By Brett Kelman, KFF Health News

Each month, Michelle Shaw went to a pain clinic to get the shots that made her back feel worse — so she could get the pills that made her back feel better.

Shaw, 56, who has been dependent on opioid painkillers since she injured her back in a fall a decade ago, said in both an interview with KFF Health News and in sworn courtroom testimony that the Tennessee clinic would write the prescriptions only if she first agreed to receive three or four "very painful" injections of another medicine along her spine.

The clinic claimed the injections were steroids that would relieve her pain, Shaw said, but with each shot her agony would grow. Shaw said she eventually tried to decline the shots, then the clinic issued an ultimatum: Take the injections or get her painkillers somewhere else.

"I had nowhere else to go at the time," Shaw testified, according to a federal court transcript. "I was stuck."

Shaw was among thousands of patients of Pain MD, a multistate pain management company that was once among the nation's most prolific users of what it referred to as "tendon origin injections," which normally inject a single dose of steroids to relieve stiff or painful joints.

As many doctors were scaling back their use of prescription painkillers due to the opioid crisis, Pain MD paired opioids with monthly injections into patients' backs, claiming the shots could ease pain and potentially lessen reliance on painkillers, according to federal court documents.

Now, years later, Pain MD's injections have been proved in court to be part of a decade-long fraud scheme that made millions by capitalizing on patients' dependence on opioids.

The Department of Justice has successfully argued at trial that Pain MD's "unnecessary and expensive injections" were largely ineffective because they targeted the wrong body part, contained short-lived numbing medications but no steroids, and appeared to be based on test shots given to cadavers — people who felt neither pain nor relief because they were dead.

Four Pain MD employees have pleaded guilty or been convicted of health care fraud, including company president Michael Kestner, who was found guilty of 13 felonies at an October trial in Nashville, Tennessee. According to a transcript from Kestner's trial that became public in December, witnesses testified that the company documented giving patients about 700,000 total injections over about eight years and said some patients got as many as 24 shots at once.

"The defendant, Michael Kestner, found out about an injection that could be billed a lot and paid well," said federal prosecutor James V. Hayes as the trial began, according to the transcript. "And they turned some patients into human pin cushions."

The Department of Justice declined to comment for this article. Kestner's attorneys either declined to comment or did not respond to requests for an interview. At trial, Kestner's attorneys argued that he was a well-intentioned businessman who wanted to run pain clinics that offered more than just pills. He is scheduled to be sentenced on April 21 in a federal court in Nashville.

According to the transcript of Kestner's trial, Shaw and three other former patients testified that Pain MD's injections did not ease their pain and sometimes made it worse. The patients said they tolerated the shots only so Pain MD wouldn't cut off their prescriptions, without which they might have spiraled into withdrawal.

"They told me that if I didn't take the shots — because I said they didn't help — I would not get my medication," testified Patricia McNeil, a former patient in Tennessee, according to the trial transcript. "I took the shots to get my medication."

In her interview with KFF Health News, Shaw said that often she would arrive at the Pain MD clinic walking with a cane but would leave in a wheelchair because the injections left her in too much pain to walk.

"That was the pain clinic that was supposed to be helping me," Shaw said in her interview. "I would come home crying. It just felt like they were using me."

‘Medically Unnecessary’ Injections

Pain MD, which sometimes operated under the name Mid-South Pain Management, ran as many as 20 clinics in Tennessee, Virginia and North Carolina throughout much of the 2010s. Some clinics averaged more than 12 injections per patient each month, and at least two patients each received more than 500 shots in total, according to federal court documents.

All those injections added up. According to Medicare data filed in federal court, Pain MD and Mid-South Pain Management billed Medicare for more than 290,000 "tendon origin injections" from January 2010 to May 2018, which is about seven times that of any other Medicare biller in the U.S. over the same period. 

Tens of thousands of additional injections were billed to Medicaid and Tricare during those same years, according to federal court documents. Pain MD billed these government programs for about $111 per injection and collected more than $5 million from the government for the shots, according to the court documents.

More injections were billed to private insurance too. Christy Wallace, an audit manager for BlueCross BlueShield of Tennessee, testified that Pain MD billed the insurance company about $40 million for more than 380,000 injections from January 2010 to March 2013. BlueCross paid out about $7 million before it cut off Pain MD, Wallace said.

These kinds of enormous billing allegations are not uncommon in health care fraud cases, in which fraudsters sometimes find a legitimate treatment that insurance will pay for and then overuse it to the point of absurdity, said Don Cochran, a former U.S. attorney for the Middle District of Tennessee.

Tennessee alone has seen fraud allegations for unnecessary billing of urine testing, skin creams and other injections in just the past decade. Federal authorities have also investigated an alleged fraud scheme involving a Tennessee company and hundreds of thousands of catheters billed to Medicare, according to The Washington Post, citing anonymous sources.

Cochran said the Pain MD case felt especially "nefarious" because it used opioids to make patients play along.

"A scheme where you get Medicare or Medicaid money to provide a medically unnecessary treatment is always going to be out there," Cochran said. "The opioid piece just gives you a universe of compliant people who are not going to question what you are doing."

"It was only opioids that made those folks come back," he said.

The allegations against Pain MD became public in 2018 when Cochran and the Department of Justice filed a civil lawsuit against the company, Kestner, and several associated clinics, alleging that Pain MD defrauded taxpayers and government insurance programs by billing for "tendon origin injections" that were "not actually injections into tendons at all."

Kestner, Pain MD and several associated clinics have each denied all allegations in that lawsuit, which is ongoing.

Scott Kreiner, an expert on spine care and pain medicine who testified at Kestner's criminal trial, said that true tendon origin injections (or TOIs) typically are used to treat inflamed joints, like the condition known as "tennis elbow," by injecting steroids or platelet-rich plasma into a tendon. Kreiner said most patients need only one shot at a time, according to the transcript.

But Pain MD made repeated injections into patients' backs that contained only lidocaine or Marcaine, which are anesthetic medications that cause numbness for mere hours, Kreiner testified.

Pain MD also used needles that were often too short to reach back tendons, Kreiner said, and there was no imaging technology used to aim the needle anyway. Kreiner said he didn't find any injections in Pain MD's records that appeared medically necessary, and even if they had been, no one could need so many.

"I simply cannot fathom a scenario where the sheer quantity of TOIs that I observed in the patient records would ever be medically necessary," Kreiner said, according to the trial transcript. "This is not even a close call."

Jonathan White, a physician assistant who administered injections at Pain MD and trained other employees to do so, then later testified against Kestner as part of a plea deal, said at trial that he believed Pain MD's injection technique was based on a "cadaveric investigation."

According to the trial transcript, White said that while working at Pain MD he realized he could find no medical research that supported performing tendon origin injections on patients' backs instead of their joints.

When he asked if Pain MD had any such research, White said, an employee responded with a two-paragraph letter from a Tennessee anatomy professor — not a medical doctor — that said it was possible to reach the region of back tendons in a cadaver by injecting "within two fingerbreadths" of the spine. This process was "exactly the procedure" that was taught at Pain MD, White said.

During his own testimony, Kreiner said it was "potentially dangerous" to inject a patient as described in the letter, which should not have been used to justify medical care.

"This was done on a dead person," Kreiner said, according to the trial transcript. "So the letter says nothing about how effective the treatment is."

Patient Treated ‘Like a Dartboard’

Pain MD collapsed into bankruptcy in 2019, leaving some patients unable to get new prescriptions because their medical records were stuck in locked storage units, according to federal court records.

At the time, Pain MD defended the injections and its practice of discharging patients who declined the shots. When a former patient publicly accused the company of treating his back "like a dartboard," Pain MD filed a defamation lawsuit, then dropped the suit about a month later.

"These are interventional clinics, so that's what they offer," Jay Bowen, a then-attorney for Pain MD, told The Tennessean newspaper in 2019. "If you don't want to consider acupuncture, don't go to an acupuncture clinic. If you don't want to buy shoes, don't go to a shoe store."

Kestner's trial told another story. According to the trial transcript, eight former Pain MD medical providers testified that the driving force behind Pain MD's injections was Kestner himself, who is not a medical professional and yet regularly pressured employees to give more shots.

One nurse practitioner testified that she received emails "every single workday" pushing for more injections. Others said Kestner openly ranked employees by their injection rates, and implied that those who ranked low might be fired.

"He told me that if I had to feed my family based on my productivity, that they would starve," testified Amanda Fryer, a nurse practitioner who was not charged with any crime.

Brian Richey, a former Pain MD nurse practitioner who at times led the company's injection rankings, and has since taken a plea deal that required him to testify in court, said at the trial that he "performed so many injections" that his hand became chronically inflamed and required surgery.

"'Over injecting killed my hand,'" Richey said on the witness stand, reading a text message he sent to another Pain MD employee in 2017, according to the trial transcript. "'I was in so much pain Injecting people that didn’t want it but took it to stay a patient.'"

"Why would they want to stay there?" a prosecutor asked.

"To keep getting their narcotics," Richey responded, according to the trial transcript.

Throughout the trial, defense attorney Peter Strianse argued that Pain MD's focus on injections was a result of Kestner's "obsession" with ensuring that the company "would never be called a pill mill."

Strianse said that Kestner "stayed up at night worrying" about patients coming to clinics only to get opioid prescriptions, so he pushed his employees to administer injections, too.

"Employers motivating employees is not a crime," Strianse said at closing arguments, according to the court transcript. "We get pushed every day to perform. It's not fraud; it's a fact of life."

Prosecutors insisted that this defense rang hollow. During the trial, former employees had testified that most patients' opioid dosages remained steady or increased while at Pain MD, and that the clinics did not taper off the painkillers no matter how many injections were given.

"Giving them injections does not fix the pill mill problem," federal prosecutor Katherine Payerle said during closing arguments, according to the trial transcript. "The way to fix being a pill mill is to stop giving the drugs or taper the drugs."

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

Physicians and Pharmacists Fear the DEA. Should Patients Sympathize?

By Crystal Lindell

Many doctors and pharmacists are scared about giving patients opioid pain medication because they are worried about getting in trouble. 

They worry about facing consequences from the Drug Enforcement Administration or about breaking local laws and in-house policies. That could mean losing their license, going to prison, or being reprimanded.  

The question is, how much sympathy should this elicit from patients? How understanding should we be of their plight?

Because if you ask doctors and pharmacists, they think the potential consequences should elicit mountains of sympathy – to the point that patients should be able to completely ignore their own physical pain.. 

Whenever I interact with healthcare professionals online or in real life, they will often quickly cite these hypothetical consequences as their reason for limiting opioid prescriptions or administering none at all.

And make no mistake, they are definitely limiting opioid prescriptions. As someone who’s helped many family members navigate the healthcare system, I’ve seen first-hand doctors refusing to prescribe opioids for chronic pain, acute pain, post-op pain, cancer pain, and even hospice pain. 

Meanwhile, even if patients get a prescription, pharmacists seem to do everything possible to avoid filling it. They claim your insurance won’t cover it, that they ran out of your medication, or that they can’t find the prescription that your doctor sent over. 

Doctors and pharmacists will justify these excuses with something along the lines of “I could lose my license! I could be arrested! I could face fines!”

It’s not just my anecdotal evidence though. A study looked at how a 2018 West Virginia law limiting initial doses of opioid medication to a 4-day supply impacted physician attitudes toward opioids. 

In a series of interviews with primary care providers, researchers found that the law “exacerbated the pre-existing fear of disciplinary action and led many prescribers to further curtail opioid prescriptions.”

As one participant, a male primary care physician with 14 years of practice, said:

“[It] really started to scare a lot…of providers into feeling that it wasn't worth the risk to continue to prescribe for fear of being labeled as an over-prescriber or being outside of the norm or, you know, the potential liability that goes along with it.“ 

“Liability.” That’s the key word in that quote. They are worried about themselves. 

The researchers said many providers “felt that taking on patients who legitimately required opioids could jeopardize their career.”

“Their career.” Again, it’s about them.

It’s as though doctors and pharmacists are expecting people in pain to nod their heads sympathetically and respond with something along the lines of: “Oh wow! I didn’t realize how difficult this was for you! But now that you’ve explained your hypothetical consequences, I’ll just go ahead and endure my debilitating pain that’s making me suicidal! Sorry I have burdened you! I sincerely apologize!”

It’s also especially interesting to me that the researchers noted that many of the patients they were talking about "legitimately required opioids.” So it’s not like doctors have some delusion that all these patients they are refusing to treat are "illegitimately" looking for pain meds. 

Medical need is apparently irrelevant when a doctor or pharmacist may get in trouble. 

So I have to tell you, as a patient, I feel about as much sympathy for them as they feel for the patients that they are denying care to – which is to say, almost none. 

The most obvious problem with their reasoning is that these doctors and pharmacists are always citing the potential consequences that they could face when it comes to opioids, while ignoring the very real harm they are causing their patients. 

Make no mistake, they are definitely causing very real and immediate harm to patients when they refuse to treat their pain. People with untreated pain actually do lose their careers, because their pain makes it impossible to hold a job. And when pain patients are forced onto the black market to find relief, they risk losing their lives or their freedom if they get arrested. 

Not to mention the fact that prescription opioids do more than just make the patient feel a little better. They can help patients rest when their bodies need that rest to heal. And they can help patients get through needed treatments like physical therapy. 

This isn’t just a problem for pain patients though. The speed at which doctors and pharmacists have made it clear that they will forgo medical reasoning in favor of “just following orders” should concern all of us.

When doctors start to act as police, we are all in trouble.