A Pained Life: Can They Feel What We Feel?

By Carol Levy

How many times have I seen a post or comment in a chronic pain support group that read: “I wish the doctor (or my family, colleagues, friends) could go through this to really understand how I feel.”

I also wish they could, but is there any way such a thing could be accomplished?

Then I read about a course at a Japanese medical school, in which students pretended to be patients and were hospitalized for two days and one night. Students learned firsthand the stress, anxiety and loss of control that comes with being a hospital patient — like being poked and prodded, being told when to sleep, when it was time to get an x-ray, to have blood taken or bandages changed.

Students also observed “the distress of other inpatients” and the “psychological pressure” they felt from physicians. This was meant to enhance their empathy skills and to further their professional development.

It sounds like a good idea. But it's not reality.

Maybe in some form, the course replicates Philip Zimdardo's 1971 prison experiment, in which Stanford students were assigned to be prisoners or guards in a simulated prison. The study was meant to focus on the power of roles and rules, but was ended early because of the behavior that emerged in both groups.

Very quickly the students who were “guards” acted like guards by asserting their control and abusing their power. And many of the “prisoners” acted like prisoners, showing signs of distress from the powerlessness that comes from being ruled by guards

Our pain can also make us feel powerless, especially when it comes to treatment and getting the medications that we need. In that regard, we are indeed powerless. The doctors and pharmacists have all the power.

When we are hospitalized, it often intensifies that feeling of powerlessness. We are “imprisoned” in the hospital and not allowed to leave until someone in power gives us permission. We are in the hands of people who decide what we can do, where we can go, and if our cries of pain will be attended to or not.

They may be called doctors or nurses, but in a very true sense they are guards. Our freedom and health in are in their hands.

Is there really a way to replicate for others how we feel, what we go through?

In a promo for the new TV series “Brilliant Minds,” Dr. Wolf, the main character, says he wants to know what his patients are feeling, so he can feel it himself.

My first thought was that would be great if it was doable. But then I thought about it more deeply. There is no way it could work. A doctor can go into the hospital as a pretend patient, even allow himself to have medically induced pain, but they will always know it is just an experiment. Their pain will end, they can go home when they want, and they will feel fine.

It would make life so much easier for us if others could feel our pain. Absent compassion and empathy, I don't see how it is possible.

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

Where Did the Opioid Settlement Money Go?

By Crystal Lindell

How are states spending their opioid settlement money? Unsurprisingly, it’s often hard to say – even when a state has promised transparency. 

Federal, state and local governments in the United States will collect about $50 billion in opioid settlement money in coming years from basically every sector of the health care industry, including drug makers, wholesale distributors and pharmacies. 

But an investigation of 12 states by NPR and KFF Health News found that it’s unclear how much of that money is being used to prevent addiction or to help people with substance abuse issues. 

As a pain patient, I have long assumed that none of the settlement money would be used to develop effective, non-opioid pain analgesics for patients who lost their medication as a result of opioid-phobia. Based on how everything around opioids has played out over the years, I also didn’t have high hopes for what it would actually get spent on.

The NPR/KFF Health News investigation shows that I was correct to worry. 

“There are no national requirements for jurisdictions to report money spent on opioid remediation,” Aneri Pattani reported.”In states that have not enacted stricter requirements on their own, the public is left in the dark or forced to rely on ad hoc efforts by advocates and journalists to fill the gap.”

Pattani shared a story about the situation in Idaho, where local governments were required to complete a form showing how they spent settlement money and whether it was for an approved purpose. But a process meant to show transparency seemed to do just the opposite. 

“In reality, it reads like this,”said Pattani. “In fiscal year 2023, the city of Chubbuck spent about $39,000 on Section G, Subsection 9. Public Health District No. 6 spent more than $26,000 on Section B, Subsection 2. Cracking that code requires a separate document. And even that provides only broad outlines.”

Pattani said that following the money trail just led to more intentionally confusing bureaucratic language. 

For example, she found that Subsection 9 refers to “school-based or youth-focused programs or strategies that have demonstrated effectiveness in preventing drug misuse.” 

Subsection 2 refers to “the full continuum of care of treatment and recovery services for OUD and any co-occurring SUD/MH conditions.” 

“What does that mean? How exactly are you doing that?” Corey Davis, a project director at the Network for Public Health Law, wondered when he first saw the Idaho reports. Without detailed descriptions of the projects the money was spent on, it’s impossible to track. 

“It’d be similar to saying 20% of your monthly salary goes to food,” Pattani wrote. “But does that mean grocery bills, eating out at restaurants, or hiring a cook?” 

Minnesota’s ‘Dashboard’

Some states are more transparent about where the money is going. Minnesota, for example, has an online dashboard and downloadable spreadsheet listing projects. One project was in Renville County, which used $100,000 to install a body scanner in its jail to help staff find drugs in the body cavities of inmates.

So, cops are getting the money. And when you look around on the Minnesota dashboard, it becomes clear that law enforcement agencies got some of the largest shares of the state’s opioid settlement money.  

So far, Minnesota has received over $74 million in settlement money. Of that, law enforcement-related categories received about $17 million, coming in fourth behind "American Indian" with $32.6 million, “African or African American" with $22.6 million, and "Child protection” which received $22.65 million. 

I was pleasantly surprised to see that Minnesota does have a "Chronic pain patients" category — but then was disappointed to learn that it got the least amount of money of any group, receiving just $290,180 of the state’s settlement funds.

When I drilled down deeper on the chronic pain category, things only got more depressing. 

The bulk of that money ($257,220) went to Hennepin Health System to "expand access to holistic chronic pain treatment through Heals on Wheels program,” which includes traveling clinics that provide training in mindfulness, stress management, mindful movement, acupressure, acupuncture and massage therapy.

The remaining $32,960 went to a group called Health Partners, which said it would use the money to, "Certify 10 clinicians to provide Empowered Relief, a one-session class that equips patients with pain management skills, draws on principals from mindfulness and cognitive behavior therapy.” 

As a pain patient, finding out that the very small amount of Minnesota’s opioid money going to pain patients is being used to fund BS about mindfulness is beyond infuriating. We need real treatments, not happy thoughts.

Of course, in other states, it’s hard to even know how much money is going to cops and if any is going to chronic pain patients, so I guess I should be happy that there’s at least some record of things in Minnesota.  

Interestingly, over $1.9 million of Minnesota’s settlement money went to the Steve Rummler Hope Foundation, primarily for opioid education and naloxone distribution. 

Coincidentally, the Rummler Foundation happens to be the fiscal sponsor of Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group that played an instrumental role in raising fears about opioid use and addiction.

Several PROP members worked as paid expert witnesses for plaintiff law firms that pursued opioid litigation on behalf of the states, and were paid as much as $850 an hour for their services. The law firms themselves will pocket billions of dollars in contingency fees once all the funds are paid. That kind of detail is rarely mentioned in reporting on how settlement money is used.   

So while some details of how opioid funds were spent are technically available to the public, Pattani says it doesn’t matter if finding them requires hours of research and wading through budgetary jargon.

“Not exactly a system friendly to the average person,” she said.

Of course, if any of the opioid settlement money was ever actually meant to help people who may have been harmed by opioids, it wouldn’t be going to governments – it would be going directly to opioid users or their surviving loved ones.

But it’s been clear from the beginning that these opioid settlements were primarily a cash grab for state and local governments, plaintiff law firms, and their expert witnesses. They don’t help patients and they don’t help their loved ones. 

I don’t expect any of the states to increase transparency about where the money has been going. Most of the general public doesn’t care, so the states can funnel a lot of the money into things like body scanners, because they don’t have the pesky public watching what they’re doing. 

Maybe next time when we decide to sue every pharmaceutical company and pharmacy chain in the country, we could at least make it class action lawsuits on behalf of patients, not governments.

What Will Trump’s White House Return Mean for Healthcare?

By Stephanie Armour, KFF Health News

Former President Donald Trump’s election victory and looming return to the White House will likely bring changes that scale back the nation’s public health insurance programs — increasing the uninsured rate, while imposing new barriers to abortion and other reproductive care.

The reverberations will be felt far beyond Washington, DC, and could include an erosion of the Affordable Care Act’s consumer protections, the imposition of work requirements in Medicaid and funding cuts to the safety net insurance, and challenges to federal agencies that safeguard public health. Abortion restrictions may tighten nationwide with a possible effort to restrict the mailing of abortion medications.

And with the elevation of vaccine skeptic Robert F. Kennedy Jr. to Trump’s inner circle of advisers, public health interventions with rigorous scientific backing — whether fluoridating public water supplies or inoculating children — could come under fire.

Trump defeated Vice President Kamala Harris with 277 Electoral College votes, The Associated Press declared at 5:34 a.m. ET on Wednesday. He won 51% of the vote nationally to Harris’ 47.5%, the AP projected.

Trump’s victory will give a far broader platform to skeptics and critics of federal health programs and actions. Worst case, public health authorities worry, the U.S. could see increases in preventable illnesses; a weakening of public confidence in established science; and debunked notions — such as a link between vaccines and autism — adopted as policy.

Trump said in an NBC News interview on Nov. 3 that he would “make a decision” about banning some vaccines, saying he would consult with Kennedy and calling him “a very talented guy.”

‘Concepts of a Plan’

While Trump has said he will not try again to repeal the Affordable Care Act, his administration will face an immediate decision next year on whether to back an extension of enhanced premium subsidies for Obamacare insurance plans. Without the enhanced subsidies, steep premium increases causing lower enrollment are projected. The current uninsured rate, about 8%, would almost certainly rise.

Policy specifics have not moved far beyond the “concepts of a plan” Trump said he had during his debate with Harris, though Vice President-elect JD Vance later said the administration would seek to inject more competition into ACA marketplaces.

Republicans were projected to claim a Senate majority, in addition to the White House, while control of the House was not yet resolved early Wednesday.

Polls show the ACA has gained support among the public, including provisions such as preexisting condition protections and allowing young people to stay on family health plans until they are 26.

Trump supporters and others who have worked in his administration say the former president wants to improve the law in ways that will lower costs. They say he has already shown he will be forceful when it comes to lowering high health care prices, pointing to efforts during his presidency to pioneer price transparency in medical costs.

“On affordability, I’d see him building on the first term,” said Brian Blase, who served as a Trump health adviser from 2017 to 2019. Relative to a Democratic administration, he said, there will be “much more focus” on “minimizing fraud and waste.”

Efforts to weaken the ACA could include slashing funds for enrollment outreach, enabling consumers to purchase more health plans that don’t comply with ACA consumer protections, and allowing insurers to charge sicker people higher premiums.

Democrats say they expect the worst.

“We know what their agenda is,” said Leslie Dach, executive chair of Protect Our Care, a health care policy and advocacy organization in Washington, D.C. He worked in the Obama administration helping to implement the ACA. “They’re going to raise costs for millions of Americans and rip coverage away from millions and, meanwhile, they will give tax breaks to rich people.”

Theo Merkel, director of the Private Health Reform Initiative at the right-leaning Paragon Health Institute, which Blase leads, said the enhanced ACA subsidies extended by the Inflation Reduction Act in 2022 do nothing to improve plans or lower premiums. He said they paper over the plans’ low value with larger government subsidies.

Other Trump supporters say the president-elect may support preserving Medicare’s authority to negotiate drug prices, another provision of the IRA. Trump has championed reducing drug prices, and in 2020 advanced a test model that would have tied the prices of some drugs in Medicare to lower costs overseas, said Merkel, who worked in Trump’s first White House. The drug industry successfully sued to block the program.

Within Trump’s circles, some names have already been floated as possible leaders for the Department of Health and Human Services. They include former Louisiana Gov. Bobby Jindal and Seema Verma, who ran the Centers for Medicare & Medicaid Services during the Trump administration.

Kennedy, who suspended his independent presidential run and endorsed Trump, has told his supporters that Trump promised him control of HHS. Trump said publicly before Election Day that he would give Kennedy a big role in his administration, but he may have difficulty winning Senate confirmation for a Cabinet position.

While Trump has vowed to protect Medicare and said he supports funding home care benefits, he’s been less specific about his intentions for Medicaid, which provides coverage to lower-income and disabled people. Some health analysts expect the program will be especially vulnerable to spending cuts, which could help finance the extension of tax breaks that expire at the end of next year.

Possible changes include the imposition of work requirements on beneficiaries in some states. The administration and Republicans in Congress could also try to revamp the way Medicaid is funded. Now, the federal government pays states a variable percentage of program costs. Conservatives have long sought to cap the federal allotments to states, which critics say would lead to draconian cuts.

“Medicaid will be a big target in a Trump administration,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News.

Less clear is the potential future of reproductive health rights.

Trump has said decisions about abortion restrictions should be left to the states. Thirteen states ban abortion with few exceptions, while 28 others restrict the procedure based on gestational duration, according to the Guttmacher Institute, a research and policy organization focused on advancing reproductive rights. Trump said before the election that he would not sign a national abortion ban.

State ballot measures to protect abortion rights were adopted in four states, including Missouri, which Trump won by about 18 points, according to preliminary AP reports. Abortion rights measures were rejected by voters in Florida and South Dakota.

Trump could move to restrict access to abortion medications, used in more than half of abortions, either by withdrawing the FDA’s authorization for the drugs or by enforcing a 19th-century law, the Comstock Act, that abortion opponents say bans their shipment. Trump has said he generally would not use the law to ban mail delivery of the drugs.

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

Five Strategies to Support Chronic Pain Caregivers

By Mara Baer

As someone who has lived with chronic pain for ten years, I worry about my health and future. I also worry about my ability to be fully present for my kids and spouse, and the load that he carries in our family life.

When my pain first became chronic, my husband’s expanded role became critical. He did more driving, more cooking, and more laundry. There was always more for him to do. When my pain became so persistent that it impacted my mental health, his responsibilities grew even more.

Fifty million people in America live with chronic pain. We are five times more likely to experience depression and anxiety, and our risk of suicide is twice as high as people without pain. Isolation, elevated stress, and loneliness are also common. Because the healthcare system does not typically address the biopsychosocial nature of pain – the biological, psychological and social factors behind it -- these problems persist and have deep impacts on our relationships and caregivers.

When I was at my darkest times with chronic pain, I felt helpless. Feeling helpless lead to acting helpless, which added to the caregiving burdens of my spouse. Many days I could not get myself out of bed, as the pain and my sadness about it were too great. I avoided family and social activities, and doing chores around the house.

I thought I was allowing my body the rest it needed, but I’ve since learned that avoiding movement and isolating oneself can exacerbate pain, and deepen depression and anxiety. This created a vicious cycle, where lack of activity leads to more pain and worsens mental health.  

My husband watched as I declined and kept picking up the pieces. We spent years like this, but we didn't have to. I now have five key strategies that can help caregivers and their loved ones:

1. Learn about the biopsychosocial nature of pain: The complex nature of pain involves many factors, including the brain’s capacity to become hardwired to pain, as well as social and emotional issues. "The Pain Management Workbook" by Rachel Zoffness provides an excellent tutorial on the biopsychosocial aspects of pain and is a useful tool for caregivers and those living with pain. As caregivers learn more about the multi-faceted nature of pain, it becomes easier find ways to improve pain care.

2. Explore pain reprocessing and other therapies: In "The Way Out" by Alan Gordon, readers can learn about the neuroscience of chronic pain and how Pain Reprocessing Therapy (PRT) can teach the brain to “unlearn” chronic pain. Several pain therapy programs are grounded in this model, which has been found to provide significant pain relief. Caregivers should also evaluate other therapies that can help manage pain, including Cognitive Behavioral Therapy and Acceptance Commitment Therapy.

3. Evaluate healthcare stigma: People living with chronic pain often face stigma in the healthcare system. This impacts their access to care and mental health. Caregivers should evaluate whether stigma is occurring, which may result in the undertreatment of pain by providers and skepticism about patient suffering.

4. Assess your own pain and mental health: Like other caregivers, chronic pain caregivers can experience stress, isolation and burnout. That burden is often correlated with a patient’s pain, anxiety, depression, and lower self-efficacy. Over half of caregivers’ struggle with their own pain, which impacts their mental health and ability to serve in the caregiving role. Self-evaluation is important for caregivers to assess their own medical and mental health, and to seek support when needed.

5. Join a support group: Chronic pain is isolating, not only for people living with pain but also their caregivers. Connecting with others who understand these challenges can be incredibly healing and supportive. There are many support groups online. The U.S. Pain Foundation hosts a regular free support group for caregivers, providing opportunities to share challenges and coping strategies.

When I finally became aware of the evidence around the biopsychosocial nature of pain, it was a turning point for me and my spouse. After learning that nearly all chronic pain conditions have a psychological component, I sought mental health support, coaching and counseling. This helped me see that the way I coped with pain would never work, and that moving my body, avoiding isolation and acknowledging my emotions would help me feel better and engage more fully in family life.

There are times my husband may still carry a heavier load, especially when I am having a pain flare, but his caregiving responsibilities are more manageable now. And I am certainly more present in our family and relationship.

Mara Baer has lived with Neurogenic Thoracic Outlet Syndrome for over 10 years. She is a writer, speaker, and health policy consultant offering services through her women-owned small business, AgoHealth. Mara is a member of the National Pain Advocacy Center’s Science and Policy Council and recently launched a newsletter called Chronic Pain Chats.

Opioids Are Effective at Treating Pain. Just Ask My Family

By Crystal Lindell

What if I told you that there was a medication that made it possible for my grandma to live at home instead of a nursing home? 

And that the same medication allowed my uncle to endure prostate cancer treatments long enough to see his cancer go into remission. And that it helped my mom avoid pneumonia after hip surgery. Or that this medication is the only reason I’m pain-free enough to be able to write this column?

But that’s not all. What if I told you the same medication helps me take care of my cats, as well as the cats at the local animal shelter where I volunteer? 

What if I told you that doctors hated this medication? And that many of them also hate anyone who takes it?.

In an age of opioid-phobia, it seems a lot of people – doctors in particular – have forgotten why opioid pain medications like Norco exist in the first place. And why they are such a miracle drug.

Over the summer, my grandma fractured her foot. After a couple of weeks in the hospital, she was transferred to a rehab facility to start the healing process. In mid-October, she was finally cleared to put some weight on her foot again, and last week she was able to come home. 

But she’s still not fully recovered and every movement still feels like climbing a mountain. In fact, standing up to go from her chair to the commode would still be impossible for her, if not for one very specific medical intervention: a 5mg hydrocodone tablet.

Yes, just one of those pills every six hours makes it possible for her to stand up to use the bathroom, walk to the kitchen, and visit with her new great-grandchild. 

Too bad her doctors are doing everything possible to refuse to prescribe it for her. Each one keeps pushing her off to a different specialist that they claim should actually be giving them to her.

The entire situation is made all the more frustrating because her chronic health issues mean she’s not allowed to take the pain medication most doctors try to push on patients: ibuprofen. 

Not to mention the fact that – at 82 years old – the main reason that doctors cite for refusing to prescribe opioids to my grandma doesn’t apply. At her age, she’s not likely to suddenly develop compulsive use behavior. And if she did, why would it matter? 

Doctors will sometimes claim that opioids aren’t effective at treating pain long term. But if a patient says they are still effective, then clearly that doesn’t apply.

Here we are in 2024, and we as a civilization have managed to harness the power of the poppy plant to such an extent that we can use it to help elderly patients enjoy their final years at home with loved ones, instead of being stuck in a depressing nursing home. But we refuse to use it. 

I’m tired of having to spend so much time countering people who think opioid pain medications are the root of all of society’s ills. That’s just not the case. Unfortunately, their constant complaints have managed to work the refs, so now we have to waste time begging for the bare minimum in pain treatment. 

In fact, if those same people would just look around a little bit, they would see the truth: opioids help millions of people lead better lives. And, if anything, they should be prescribed more, not less. 

Flawed Mayo Clinic Study Promotes Opioid Myths

By Crystal Lindell

A new study has been released analyzing why patients start taking opioids — but all the research actually does is perpetuate harmful myths about opioids and the patients who use them. 

The study, which was just published in the Journal of Pain, was conducted by researchers from the Mayo Clinic and the National Center for Complementary and Integrative Health. 

The researchers say this is “the first study to present nationally representative rates of incident prescription opioid use.” But it’s the headline from a Mayo Clinic article about the study that clarifies what the authors were actually trying to get at. It reads: “Who is choosing to use prescription opioids?”

“Choosing” – as though patients have any choice about whether or not they use opioids. 

Opioid medications are not sold over the counter, and many doctors today do everything possible to avoid prescribing them. So the idea that any patient can walk into a doctor’s office and “choose” opioids over alternative treatments is wildly naive, at best. 

I’ll go a step further and somewhat defend the doctors here: if a doctor is prescribing opioids in the current opioid-phobia environment, they are not doing it as a first-line treatment. They’ve  already tried non-opioid medications and non-pharmaceutical therapies, which didn’t work.

But let’s take a step back and look at exactly what the authors of the study claim their research found. In a nationwide survey of nearly 10,500 people conducted in 2019 and 2020, about 4% started using prescription opioids. Four percent isn’t much, but it was enough to surprise the researchers.

"One of the things that we noticed is that people are still utilizing opioids as an early resort or first line treatment, before trying non-opioid treatments first, which goes against best practice guidelines in healthcare," said lead author Ryan D'Souza, MD, a Mayo Clinic anesthesiologist. "This is a wake-up call to how high the incidence rate among new users continues to be."

A bit of a jump in my opinion, but let’s go with that. What are these "early resort or first-line” treatments that D’Souza and his co-author want patients to try before resorting to opioids? As they explain: "Nonpharmacologic modalities, over-the-counter medications, and other nonopioid analgesics as initial treatment for pain."

“Nonpharmacologic modalities” means things like physical therapy and cognitive therapy. “Over-the-counter medications and “nonopioid analgesics” means pain relievers like ibuprofen and acetaminophen (Advil and Tylenol) or prescription medications like gabapentin.

Well, I have some great news for the researchers who did this study: Every single patient asking a doctor for opioid pain medication has already tried Advil. 

It’s also worth noting that some of the data was collected in 2020, which is infamous for being a year that greatly disrupted medical care because of COVID. It was the kind of disruption that literally limited how much access patients had to physical therapy and in-person cognitive therapy. So yes, some patients may have resorted to opioids during that time.

Also, physical and cognitive therapy are both significantly more expensive than hydrocodone, even if you have insurance. Both therapies require multiple sessions — sometimes in the same week — and most insurance companies require a copay for each session. So the difference in price can be dramatic, not to mention the cost of time away from work and family to go to appointments. 

The other major flaw in their list of alternatives is that none of them are great at treating pain quickly. Physical therapy may help over a period of weeks or months, but it’s not going to be much help to an arthritis patient who needs to get work on Monday. And there’s little data showing medications like gabapentin are effective at all when it comes to pain. 

In fact, the researchers found that “ineffective pain treatment” was the primary reason people were given a new prescription for opioids. Other leading factors for opioid use are three or more visits to the ER in one year; having four or more painful conditions; and having two or more disabilities.

Anyone with that many strikes against them probably needs opioids, yet the authors are still troubled that “some participants are using opioids… instead of following various best-practice guidelines.”

As is the case for most medical research, both the data collection and the conclusions drawn by the authors seem to have been done with zero input from any actual patients. That’s the foundational problem for the entire study. None of the conclusions factor in real life situations. 

Studies like this one that demonize every single use of opioids would have a lot more sway if there were actually effective opioid alternatives available. As it stands now, patients do not have an option between “an effective, non-addictive pain medication” and “an effective, always addictive pain medication.” 

In reality, the options are usually between “ineffective, non-addictive medication” and “effective and rarely addictive medication.” 

Anyone who’s actually experienced real pain will tell you that when those are the choices, the “effective” medication wins every time. 

It’s so exhausting that we are still dealing with such flawed thinking from the medical community when it comes to opioids. I understand that opioids make an easy villain in healthcare, but opioids are not a magical, always-addictive medication — no matter how many times the medical community tries to convince us otherwise.

I know this because most patients who undergo general anesthesia are routinely given the opioid medication fentanyl — and none of them wake up post-op suddenly addicted to opioids. In fact, most people who take opioids in any setting never develop problematic use.

So we would be wise to remember that the real villain isn’t opioids. It’s the problem they’re trying to address: pain.

The Whims of Pharmacy Pricing

By Crystal Lindell

I pay cash for my prescriptions every month because I don’t currently have health insurance. 

I got laid off in 2022 and I’ve been freelancing to make ends meet since then, which makes it difficult to get health insurance. I know, not a great situation for a chronically ill patient to be in, but as Gambino said, “This is America.”

Thankfully, the cash prices for my prescriptions aren’t very high, so the situation has been manageable. For my main pain medication, which is not a name brand, I’ve been paying just $36 a month for over two years.

Unfortunately, I recently found out how vulnerable I am to price changes for prescriptions. 

My most recent refill was ready last week, but I was dealing with a pain flare — likely caused by our changing weather here in the Midwest. So I asked my fiance to pick it up for me in an effort to avoid having to endure a taxing trip out of the house.

But while I was at home waiting, he called to tell me that the pharmacy had just told him that there was a new price this month: $86. 

That’s a $50 increase! It literally went up nearly 139 percent! With no warning! 

Doing a little back-of-the-napkin math, because it’s a monthly prescription, that increase results in an extra $600 a year! Not to mention the fact that it also means the price could increase again next month. And then again the month after that. 

So I called the pharmacy to try to figure out what was going on. I spoke to two different people and they both told me that it’s the new price and there’s nothing they can do. 

One of them claimed the price went up months ago, but after I explained to her that I literally got the exact same medication four weeks ago for $36, she changed her story and said the price increased over the weekend. Or it may have increased overnight. 

She insisted there was nothing they could do about it. 

Since it’s a controlled substance and I have a pain patient contract with my doctor, I’m not allowed to have the prescription transferred to a different pharmacy to get it for a cheaper price. It’s one of those opioid regulations that was supposedly launched to keep patients safe, but it has instead resulted in pharmacies having their own monopolies. 

As a freelancer, my bank account balance varies dramatically, depending on which projects I’ve recently been paid for and which ones I’m waiting on payment for. So I didn’t have the full $86 in my account to cover the medication that day. 

Thankfully my mom lives nearby, and I’m able to borrow some money from her when situations like this occur. So my fiance drove home, and then I drove to my mom’s to pick up some cash from her. I then drove to the pharmacy myself to get the medication — all while still dealing with a spike in my daily pain. 

When I got to the counter, I recognized the pharmacist who was working as someone who’s been helpful to me in the past. So I took a chance and said, “Yeah, so the price went up dramatically? Huh?”

She looked at the prescription price and then quietly went to the computer for like 10 minutes to look into it. Then she came back over to me and said, “I got it back down to $36. Here you go, you can pay up front.”

I was half in shock and half worried that if I said the wrong thing, the price would go back up, so I didn’t ask how she did it. I just took the package and went up front to pay, hoping it would still be $36 next month.

I know I should be sharing the details of why it went up and then back down again, but I honestly don’t even know what they are. And I don’t think that those details are necessarily the point. 

The real point is that pharmacies have way too much power in pricing and the entire process is purposely opaque to make it difficult for patients to navigate. After I shared this story with some close friends the day it happened, many of them responded by telling me similar stories about arbitrary pricing at their pharmacies. 

The initial price increase should not have even happened in the first place. What patients pay for medication should not be dependent on the whims of pharmacy staff, especially when patients like me are not allowed to shop around for a more competitive price due to controlled substance regulations. 

As far as I can tell, there are no laws regulating how much pharmacies can increase prices for medication, nor any law requiring them to give a certain amount of notice when they do. If there are laws about such things, they aren’t publicized in any meaningful way. If patients don’t know they have a right, does the right even exist?

I don’t know if there’s any good advice for patients to take from this experience. Most patients on controlled substances can’t risk angering their pharmacist, so it’s understandable they would just choose to pay a higher price if that’s what the pharmacy wanted. 

The situation reminds me of someone else that sells drugs: street dealers. But at least with street dealers, customers usually have the option of shopping around for a better price. 

Eilish, Dunham, Jamil: How Ehlers-Danlos Celebrities Raise Awareness and Scrutiny

By Crystal Lindell

I have to confess that I never watched the HBO Show Girls. It’s not that it looks like a bad show. In fact, almost the opposite. It sounds like a good show. 

But as a young millennial flailing through life when Girls premiered in 2012, I worried that I’d see myself — including my flaws — reflected back at me. And I just have never been in a place, mentally, to process that kind of personal attack. So I didn’t watch Girls.

When the show’s top star and creator Lena Dunham later revealed that she had the same health condition as me — Ehlers-Danlos Syndrome (EDS) — it only worked to confirm my fears. 

A lot of people hate Lena Dunham, and a lot of people also hate the character she played on Girls.

What if, through watching the show, I discover that I am like her?

What if I start to believe that I’m worthy of the same level of hate? And in the process, I start to hate myself?

After I was diagnosed with EDS in 2018, Dunham was among the first celebrities I remember seeing reveal her own diagnosis publicly. 

In the fall of 2019, Dunham posted unflattering paparazzi pictures of herself to Instagram — including one of her in a blue granny nightgown, holding a cane in one hand and a cellphone in the other.

LENA DUNHAM

“I could choose to be embarrassed by these paparazzi pics — I mean, that’s probably the point of someone publishing them in the first place — but I’m really not,” Dunham wrote.

“I could lie and say it was an early Halloween look… But the truth is just: This is what life is like when I’m struggling most with chronic illness. An Ehler-Danlos syndrome flare means that I need support from more than just my friends... so thank you, sweet cane!”

A lot of the online EDS community did not take the news well. 

One Reddit user wrote at the time: “Lena Dunham is an extremely problematic and troubled individual. If there is ANY celebrity whose claims — not just regarding illness but regarding all facets of autobiography — should be looked at with a critical and cautious eye, it’s her. She’s not someone we should, as a community, try to turn into a role model or representative for EDS.”

The sentiment summed up what a lot of EDS patients were saying on the internet at the time.

Finally, a celebrity bringing awareness to EDS, and I couldn’t even be excited about it? Instead, I worried that the people who hated her would now hate me too.

JAMEELA JAMIL

The other big name to reveal her EDS diagnosis in 2019 was Jameela Jamil.

And, unfortunately, she’s another celebrity who a lot of people love to hate. 

Two celebrities were out there spreading awareness about the very condition that has caused me immense health problems my entire life, but I couldn’t even post about it online without worrying about haters.

Over the years, a number of other celebrities have also revealed that they have EDS or a related hypermobility disorder, including: Selma Blair, Halsey, Sia, Cherylee Houston, Yvee Oddly and others. 

‘Been in Pain Since I Was Nine’

Most recently, Billie Eilish discussed her hypermobility, a condition often seen as related to EDS, in a recent Vogue profile. At times, she feels like she was at war with her own body.

“I’ve basically been in pain since I was nine,” said Eilish. “Growing up, I’d always hear people be like, ‘Just wait until you’re older! You’re going to have so much pain!’ And I remember being so furious.” 

Bringing EDS into the mainstream and creating awareness should, in theory, help more suffering patients get the diagnosis they seek. Ideally, it would also help lead to more research into the condition, including treatments and maybe even a cure. 

In a perfect world, increased awareness would also lead to more compassion for those struggling with the often painful symptoms of EDS. 

Sadly, over the years, I’ve watched the opposite often happen instead. As EDS has become more well-known, a lot of people have started to see EDS as a trendy diagnosis, the type patients want because they saw that a celebrity has it. 

BILLIE EILISH

In fact, a few years after I was diagnosed at a university hospital, I had a different medical specialist at the same university walk into the exam room and greet me for the first time with, “So what makes you think you have EDS?” 

He asked me as though I had Googled “EDS” on the way to the appointment and then decided to add it to my intake form on a whim. 

In fact, that’s been one of the most jarring things about having EDS. The condition has very obvious visual markers, but people will still try to claim it’s fake. 

My elbow extends way past the normal range of motion. You can’t fake that. 

Every celebrity I’ve seen who’s revealed their own EDS diagnosis has seemed intent on making sure that it is not seen as the most defining thing about them. It’s a truly understandable goal. I don’t want EDS to define me either. 

Unfortunately, EDS has started to be defined by the celebrities who have it: “That Lena Dunham-Jameela Jamil thing.” For better — and sometimes worse — they end up representing our condition in the eyes of the general public. 

While most EDS celebrities don’t have a slew of hate-fans behind them, none of them are fully beloved by the public. And, of course, that’s because being fully beloved by the public is impossible for any human being. 

In fact, all of us are flawed. So in that sense, EDS celebrities are just like us! 

Peer Reviewers of Medical Studies Have Conflicts of Interest

By Crystal Lindell

How much are medical studies impacted by financial conflicts of interest? New research shows the problem may run deeper than most people realize. 

The authors of peer-reviewed studies in medical journals usually have to disclose whether or not they received money from pharmaceutical companies or medical device manufacturers. But new research published in JAMA looks at the next layer: the peer reviewers themselves.

Due to the “traditionally opaque nature of peer review,” it’s difficult to investigate the issue, but an international team of researchers studied peer reviewers at high-impact medical journals like The BMJ, JAMA, The Lancet, and The New England Journal of Medicine.

They looked specifically at nearly 2,000 U.S-based physicians who served as peer reviewers. 

What they found is both unsurprising and alarming. Between 2020 and 2022, more than half (58.9%) of the peer reviewers analyzed had received at least one industry payment. In total, the peer reviewers received a staggering $1.06 billion in industry payments. 

It should be noted that companies don’t spend that kind of money out of some noble love of medicine. No, they are doing it because it helps increase their profits or advances their interests. 

Most of that money – $1 billion or 94 percent – was paid directly to individuals or to their institutions to help fund research programs. That’s why academics who churn out studies are highly prized at universities and research institutes.

The rest of the money – $64.18 million – was in the form of general payments, which includes everything from speaker fees and “honoraria” to food, drink, lodging and travel expenses. 

The median general payment to a peer reviewer was $7,614, while the median research payment was $153,173. 

Interestingly, the average male reviewer had a significantly higher total payment ($38,959) than the average female reviewer ($19,586). 

The authors also broke down differences between medical specialties. Doctors who specialize in cardiology, rheumatology, oncology, immunology or addiction treatment were the most likely to get payments (73.5%), followed by surgeons (72%), psychiatrists (65%), hospital-based specialists (47%) and primary care physicians (38%).

Those results shed light on which fields of medicine may be more susceptible to conflicts of interests.

The study’s authors came to the only conclusion that makes sense given all this data: "Additional research and transparency regarding industry payments in the peer review process are needed."

I agree that this is clearly an issue that needs to be addressed. But we shouldn’t have to wait for more research to start taking action. We need stronger policies at medical journals to help contain the potential harm it’s causing. 

At the very least, peer reviewers should have to disclose conflicts of interest. While that may conflict with the policy of some journals to keep peer reviewers anonymous, given the potential for bias and other negative consequences, it seems the financial disclosures should take precedence. 

Since peer reviewers also have the ability to reject research before it’s even published, they should have their names and potential conflicts listed in the publications. 

Beyond that, medical journals need to start having difficult conversations about whether peer reviewers should even be allowed to review studies that involve companies or industries that pay them. 

While it may not be entirely possible in our for-profit healthcare system, that doesn’t mean it shouldn’t be explored. After all, the study did not find that 100% of peer reviewers accepted payments. So clearly some peer reviewers found a way to do the work without an obvious conflict of interest.

It isn’t just medical journals that do a poor job flagging the conflicts of peer reviewers. When PNN made a Freedom of Information Act (FOIA) request to the CDC seeking more information about the “Core Expert Group” involved in the agency’s 2016 opioid guideline, most of the documents we received back were heavily edited or redacted.

The CDC’s FOIA office said the group was exempt from our request because of “deliberative process privilege” and that disclosing their conflicts would have been “a clearly unwarranted invasion of personal privacy.”  

Why Conflicts Matter

Why do conflicts of interest matter? The easiest way to understand it is that whenever money is involved, it can potentially lead to what is essentially a boss-employee power dynamic. And typically, people don’t like to upset their bosses. 

Intuitively, most people also understand that if a medical device company funds medical device research, the researchers are incentivized to manipulate both the research methods and results in hopes of providing the funder the results they seek. 

Sometimes it’s deliberate, but sometimes it just happens on a subconscious level. People naturally favor people who give them money. However, in this case, the result of that favoritism could harm the health of millions of patients. 

In one high-profile example from 2018, a top cancer researcher failed to disclose the millions of dollars in payments he received from drug and healthcare companies.

As ProPublica and The New York Times reported, Dr. José Baselga, then-chief medical officer at Memorial Sloan Kettering Cancer Center in New York, had a number of undisclosed conflicts of interests. 

One such conflict may have led Baselga to put a positive spin on the results of two Roche-sponsored clinical trials — trials that many others had considered disappointments. He did this without disclosing the more than $3 million in consulting fees he’d received from Roche. He also left out that he had a stake in a company Roche had acquired. 

Baselga resigned just days after the news investigation came out, but journalists just don’t have the resources to constantly investigate every single researcher for conflicts of interest. That’s why medical journals must regulate the issue themselves. 

Yes, most medical journals already have policies requiring study authors to disclose conflicts of interest, but as this new research makes clear, that’s not enough. It’s past time for peer reviewers to be required to do the same. 

After all, it’s not just because the public deserves to know. Our lives could depend on it. 

Do You Hurry to Outrun the Pain?

By Carol Levy

I'm infused with impatience. I do everything fast.

I used to swim at the YMCA. I didn’t feel like I was moving quickly, but to others I was a speeding bullet knifing through the water. As soon as I stopped, to make my turn at the end of the lane, invariably someone watching would yell down at me, “What's your rush? Isn't it more fun if you enjoy it?”

Not for me. It's not just the physicality of moving swiftly through the water, which for me is a wonderful feeling. More important is getting to the end of the mile of swimming I try to complete, before something happens to trigger my pain.

I can't tolerate touch to the left side of my face, due to trigeminal neuralgia and phantom pain. Just the idea of a droplet of water touching my face terrorizes me, so I only do the backstroke.

One day a man asked me, “Is that the only stroke you know? I could teach you others.”

I didn't want to explain why I only did the backstroke, so I shrugged my shoulders and swam away. 

The backstroke works for me because my arms move in such a way that they don't fire off bullets of water that might hit my face. Regardless, I am always at the mercy of the thought, “Be careful! Finish this before you get hit in the face with a droplet.”

I'm impatient because I have to outrun the pain. I get to the Y early, impatient to get into the pool before others, so no one gets in the lanes next to me and splashes water on my face.

This is true of almost every aspect of my life. I shop fast because using my eyes too much triggers the pain. The faster I go through a store, the less opportunity I have to see things I want to see, but did not come to buy.

On rare occasions, I get sidetracked.  I forget.  I start to look at what else they have. My eyes start to travel up and down the shelves, and the pain grows to such heights that I fear my ability to get out of the store and drive home safely. So, I rush.

Before my trigeminal neuralgia, I loved to read. I could read a whole book in a few hours. And as soon as I finished, like the joke about eating Chinese food, I'd be hungry to start a new one.

Now I can read only a few pages at a time, skipping words, paragraphs, pages, looking for the dialogue that essentially explains the story. Who the main characters are and what their relationships are with each other, are lost to me.

I am impatient to get to the end. Not to see who the murderer is (I love mysteries the best), but to get to the end quickly, so the pain doesn't interfere.

I could go on and on with other examples, but they don't matter. At the end of the day, they all boil down to one thing: Hurry up! Hurry up! The pain is coming! The pain has started!

But I have to get to the end. The end of the swimming lane, the grocery list, and the end of the book.

There are changes we all go through, no matter our circumstances. But I think pain sufferers change more than most people -- and the changes are largely the result of trying to outrun the pain. It’s an impatience that’s very hard for those without pain to understand.

As for me? I used to be the tortoise. Now I'm the hare. Right now, I'm hurrying to finish writing this column before the pain takes over from using my eyes so much.

Pain makes me rabbit my way through life. The tortoise, ambling by, gets to look at the scenery. The hare in us makes it hard to stop and smell the roses.

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

Hurricane Helene Highlights Need for Emergency Prescription Access

By Crystal Lindell

Following the news for Hurricane Helene this week, I’ve been worried about everyone in its path. But it’s the people who rely on prescription pain medication that I am most worried about. 

When natural disasters strike, patients who rely on opioids and other controlled substances can be left to face withdrawal or the black market to fill the gaps until doctors and pharmacies are fully functioning again.

While some states have laws in place to allow people to get early refills of their prescriptions when there’s an impending natural disaster, those laws can specifically exclude controlled substances like hydrocodone and Adderall. 

According to a 2022 article by Healthcare Ready, the laws vary widely state-by-state and are poorly organized. Only 12 states have laws or regulations that allow for emergency prescriptions during a specified public health emergency. About half the states allow for short-term refills of medication during unspecified emergencies. Fifteen states and the District of Columbia don’t have any regulations allowing for emergency prescriptions.

The two states facing the worst from Hurricane Helene, Florida and Georgia, both have laws allowing for emergency prescription refills – but only one allows for refills of opioids. 

Georgia specifically excludes Schedule 2 controlled substances such as codeine, hydrocodone, morphine and amphetamines, according to Atlanta News First. 

Florida’s law is much more expansive. You can obtain a 30-day refill of any prescription medication, as long as your county meets one of the state’s disaster qualifications. 

My guess is that Florida is more lenient due to the state’s reputation as a retirement destination. Older retired people are more likely to need pain medication and more likely to vote. 

It’s understandable that states more commonly hit by hurricanes would have laws in place to address this issue, but every state should allow for emergency prescription refills. Natural disasters like earthquakes, tornadoes and wildfires can happen anywhere. 

Ideally, this would be something best addressed at the federal level, so that patients who have to evacuate their state during emergencies would know they can get refills no matter where they go. Pharmacists would also need to be aware of how to apply the regulations. 

The Food and Drug Administration recommends that patients have at least a week's supply of  medication in case of emergencies – something that’s impossible for many pain patients. You know things are not functioning correctly when a federal agency is giving medical advice that patients are literally unable to follow. 

The last thing anyone facing the threat of losing their home or even their lives should have to worry about is running out of hydrocodone. Even a small daily dose can cause withdrawal if stopped abruptly.

Medication withdrawal in normal conditions can feel like hell. I can’t imagine what it would be like if you also had to deal with the aftermath of a hurricane or wildfire. It could take days or weeks before power is restored, pharmacies to reopen, and supply chains to start functioning again.

Nobody should have to endure that, and with sensible laws in place across the country, nobody would have to. 

A Medical Enigma I’ll Never Understand

By Pat Akerberg

I recently read Carol Levy’s column describing a medical enigma about a new pain-relieving medication. Carol and I both suffer with the same debilitating condition -- trigeminal neuralgia (TN) – so I was intrigued to learn more about it. Important to note that she has suffered with TN twice as long as I have. Bless you, Carol.

The new medication by Vertex Pharmaceuticals is suzetrigine, which the FDA is fast-tracking with a priority review.  For all the hype, it turns out that suzetrigine is only being studied as a treatment for acute pain and diabetic peripheral neuropathy.  Along with Carol, I had hoped this medication would be something for all of us in pain. Most especially since there hasn’t been any new pain medication for two decades. 

Here’s the medical enigma about the condition we suffer with that I’ll never understand.  Simply put, why can surgeons perform a microvascular decompression (MVD) brain surgery on TN patients when they cannot offer treatment for a bad outcome that might occur (and does 20% of the time)? 

And what happens if the neurosurgeon lies to you before the surgery and falsely claims that he/she can reverse any unwanted outcome? 

As background, I was struck with the lightning bolts of TN in 2009.  Because I wanted to return to work pronto, I chose to have MVD surgery in 2010 that was recommended to halt the horrific pain.  Instead, I wound up being harmed even further by the surgery.

Fast forward to the present, and I’ve been seen by 11 neurologists in my area who were all Ill-equipped to understand TN, let alone how to treat my worsened condition. 

So, I understand the rise of Carol’s hope and excitement about a possible new medication that might help alleviate the neuropathic pain we suffer with. The worst pain known to medical practice is TN, and the idea that using disappointing treatments like Tylenol or suzetrigine for it is truly unfathomable. 

But here’s what else I really don’t understand.  If surgery is allowed for TN, then why is the medical profession unable to deal with the unfortunate, damaging outcomes from it that happen to hundreds of patients like me? 

I’ve been told by neurosurgeons that training in medical schools for TN is woefully lacking.  Yet somehow performing surgeries for TN or other challenging conditions persists, especially for controversial surgeries that don’t have a good track record 6 months later. 

When I asked the neurosurgeon who performed my procedure what went wrong during the surgery, his response was: “No one ever told you that surgery was without risk.”

In other words, “You knew the risk and you chose to do it anyway.” 

Then he told me I should find a psychiatrist since I was so “anxious” about my unfortunate outcome. So much for his emotional intelligence and integrity (or competence for that matter).

Again, who wouldn’t be anxious if they underwent brain surgery thinking they would be rid of the wicked pain, only to wake up in worse pain through no fault of their own?  Imagine my shock afterwards when I learned he lied and couldn’t reverse anything that he claimed he could.

With zero assistance from him, I set out to contact neurological specialists internationally.  When I spoke with a TN neurosurgeon from Israel, he answered the enigma that has bothered me for years.  I’m paraphrasing what he told me, but here’s what he said:

“The United States is cut happy. The U.S. has a medical business model and, as such, they allow surgeries that the rest of the world would never perform given the susceptibility for harm in such a snug, vulnerable brain area.”

WOW.  That explained the run-around I experienced. It also explained why, despite my considerable efforts, I couldn’t get any pain relief (forget justice) for the harmful outcome I suffered with the phantom pain of anesthesia dolorosa.

Then I spoke with several TN experts around the U.S. after sending them my MRI.  Each one told me that since the detrimental outcome of my surgery sensitized my central nervous system, I would no longer be considered “operable” by most TN surgeons anywhere ever. 

Again, WOW.  I really need someone to explain to me why it’s considered okay to perform a risky surgery on someone when there’s no way to treat any disastrous outcome of said surgery.  My experience has been to blame me (the patient) with a neat, tidy self-serving explanation.

I guess it all comes down to how desperate one is to get relief from the pain caused by the “suicide disease.”  That desperation is then exploited with a buyer beware consent document.  

I’ve since learned that consent born out of desperation (or a lie) becomes absolution for the surgeons performing the MVD procedure for TN.  That frees those performing the surgery from their oath to do no harm. 

Here’s the kicker: After having done considerable research, I asked my neurosurgeon if any bad outcome could be reversed later. He answered “yes” in his fervor to ready me for the surgery. So, I signed the consent agreement based on his lie. 

Would you take on doing something that you knew could make a patient’s situation even worse, if you knew beforehand that you couldn’t do anything to correct it if something bad happened?  And who would be responsible if the outcome was bad? You or the patient?  Another enigma.

I guess the neurosurgeon from Israel was right about the American medical business model promoting “cut happy” surgeries that generate significant profits for their operating entities.

Interestingly, I also learned from my situation that conditions like TN are considered so rare that they are often relegated to teaching hospitals to give surgical residents training opportunities.

Even worse, regarding justice in the state of Florida where I live, one cannot sue a surgeon working for a teaching hospital. Why? Because the state owns the teaching hospitals and one cannot sue teaching hospitals owned by the state. Now, there’s a neat, circular wad of unjust enigmas further saddling the patient.

The medical enigmas abound with TN, and I suspect that’s also true with other painful conditions. So, it’s no wonder Carol chose to write about a much needed, yet disappointing pain medication that was fast-tracked to address a huge void in pain management. 

Another medical enigma that I’ll never understand: How is this whole medical approach to supposedly treating pain any different from a fox guarding the hen house?

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.  

Is the Hype About a New Non-Opioid Analgesic Justified?

By Carol Levy

In a previous column, I asked why pharmaceutical companies haven’t been able to “build a better mousetrap” by developing new and effective non-opioid medications for pain 

Every doctor I've seen about my chronic facial pain has only offered me opioids. As is true for many of us, I hate the way they make me feel. They also rarely help, outside of making me so cloudy-headed that I become less aware of the pain and have trouble thinking clearly.

That is the exact opposite of what the drug is supposed to do. It's supposed to make me feel better, and therefore better able to work, play, and do regular activities — which is exactly what the cloudiness stops me from doing. That's not a workable trade-off.

When I protest, “There must be something other than an opioid,” the reply from doctors is always the same: “There is nothing else.”

Now there may be. The FDA is giving priority review to a new drug application for suzetrigine, an experimental non-opioid analgesic developed by Vertex Pharmaceuticals. The drug has previously been granted “Fast Track” and “Breakthrough Therapy” designations by the agency for the treatment of moderate-to-severe acute pain. Final approval could come in January, which would make suzetrigine the first new class of medication for pain in over two decades.

The upside to suzetrigine is that it’s not an opioid. That would address the lie that we are responsible for the opioid crisis, and should be held captive by doctors who fear being raided by the DEA and don’t prescribe opioids anymore.

The downside is that suzetrigine is being considered as a treatment for acute pain and perhaps chronic neuropathy. My pain is neuropathic in nature -- trigeminal neuralgia and anaesthesia dolorosa (phantom pain) --- so I was at first exhilarated, and then deflated to see that suzetrigine is only being studied as a treatment for diabetic peripheral neuropathy. I had hoped this would be something for all of us.

I Google searched for other non-opioid analgesics, hoping there might be some new ones in the process of testing or even FDA fast-tracked. I couldn't find any.

As I researched further, I began to feel dejected. All drugs have downsides. That is expected. But I had hoped the FDA’s priority review meant the research was very positive about suzetrigine. Instead, I found there are many questions as to whether the drug is any better than what is already out there.

So why is the FDA fast-tracking it? Are they so eager to approve non-opioids that anything that might work will be considered? Maybe. The breakthrough therapy and fast-track designations may be geared more towards appeasing the FDA’s critics than anything else.

The headlines sounded so promising. “New Painkiller Could Bring Relief to Millions” and “A New Class of Medicine for Pain Relief On The Horizon.”

When I found out about this drug my heart leaped. Now I am not so sure. I hope it's not just another false flag. 

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

Direct-to-Consumer Prescription Programs Seem Ripe for Misuse

By Crystal Lindell

Two large pharmaceutical companies have launched websites that help consumers get prescriptions to the medications that they make – and I’m honestly surprised that the entire setup is even legal.

Pfizer launched PfizerForAll in August, while Eli Lilly started LillyDirect back in January. Both websites connect patients with supposedly independent doctors, who can then write prescriptions – for Pfizer or Lilly medications, of course. Both companies will then help facilitate getting the prescription filled, even offering to connect patients with direct-to-home delivery. 

While direct-to-consumer prescriptions may seem like a win for patients – considering how overly complicated and expensive the U.S. healthcare system is – it also seems ripe for misuse. And when it comes to healthcare, that can have serious consequences, up to and including death.

Pfizer says its new website serves patients seeking treatment for migraines, COVID-19 or influenza, as well as adults seeking vaccines for preventable diseases, including COVID, flu, RSV and pneumococcal pneumonia. 

To be more specific, PfizerForAll facilitates patient access to Pfizer medications for migraine, COVID-19 or flu, as well as Pfizer vaccines. Maybe they should just call it AllForPfizer.

Meanwhile, Eli LIlly’s site is for patients seeking treatment for obesity, migraine and diabetes. Like Pfizer’s program, LillyDirect provides access only to “select Lilly medicines.” Maybe they should change the name to DirectToLilly. 

Both companies say their direct-to-consumer programs are designed to make things easier for patients who lack the time, knowledge and resources to manage their own health. 

“People often experience information overload and encounter roadblocks when making decisions for themselves or their family in our complex and often overwhelming U.S. healthcare system. This can be extremely time-consuming and lead to indecision or inaction – and as a result, poor health outcomes,” Aamir Malik, Executive Vice President and Chief U.S. Commercial Officer for Pfizer, said in a press release.

"A complex U.S. healthcare system adds to the burdens patients face when managing a chronic disease. With LillyDirect, our goal is to relieve some of those burdens by simplifying the patient experience to help improve outcomes," David Ricks, Lilly's chair and CEO, said when LillyDirect was launched

To make it easier for patients to buy Pfizer and Lilly products, both companies offer similar amenities. 

PfizerForAll boasts access to same-day doctor appointments; home delivery of prescriptions, over-the-counter drugs and tests; appointment scheduling for vaccines; and even help paying for Pfizer medicines. 

The LillyDirect site is similar. It offers "independent healthcare providers” and home delivery of Lilly medicines through “third-party pharmacy dispensing services." Lilly says its vendors make treatment decisions based on their own “independent medical judgment.”

So, yes, patients will get appointments with supposedly independent doctors. But something tells me the doctors getting booked with patients via Lilly’s website aren’t going to be writing any prescriptions for Pfizer medications. Or vice versa. 

I’m also very skeptical of the claim that doctors aren’t getting any money from the companies directly. Even if they are only getting referrals, that’s more than enough to heavily incentivize doctors to only prescribe medications that those companies make. Especially if the doctors are told that the patient they are seeing was referred to them by the pharmaceutical company itself.

Personally, when I see a doctor, I want them to write prescriptions based on what’s in my best interest – not what’s in the best interest of a pharmaceutical company. Perhaps it's naive and idealistic of me to still believe that doctors are writing prescriptions based solely on a patient’s need for that specific medicine.  

Perhaps healthcare in the United States is already so far beyond that thought process that these new websites aren’t too much of a leap. After all, pharmaceutical companies have long been working hard to influence doctors. So, maybe this is just the next logical step. 

Whenever I go to a makeup store like Ulta, I’m well aware that the seemingly helpful sales clerks are all trying to push me toward a specific lipstick brand. They may even get commissions from the lipstick company for making a sale. 

But, the thing is, what brand of lipstick I wear isn’t a life or death decision. I expect more from companies that make medications. Even if they don’t hold themselves to a higher standard, I expect more from the government regulators who allow this sort of thing. 

Yes, healthcare in the United States is horrific. I know that firsthand. I’m just not convinced that pharmaceutical companies have much interest in helping to fix that. 

CRPS: My Painful and Unwelcome House Guest

By Liliana Tricks

Complex Regional Pain Syndrome (CRPS) is like an unwelcome house guest that refuses to leave. It arrives uninvited, overstays its welcome, and disrupts your life completely.

CRPS took residence inside my body after my left foot was injured in 2017.  It feels as though someone is hacking at my leg with a meat cleaver, while a thousand insects bite and nibble at my flesh.

Living in Australia, I soon discovered that CRPS is largely unknown, and many specialists I encountered admitted they hadn’t even heard of it. This lack of understanding left me feeling vulnerable and isolated, as I had to rely on medical professionals who were often blind to my condition.

Clothes, once a source of joy and self-expression, now feel like a torment. I used to adore shopping, pampering myself with manicures, and indulging in all things feminine. But now, those same pleasures have become painful reminders of my limitations.

The clothing that once brought me comfort and confidence now itch, feel heavy, tight and suffocating. It's as if my skin is covered in prickles, shrapnel and itchy powder, making every movement a struggle.

Shoes, my former weakness, now sit in their boxes, ornaments of a life I once knew. My foot, a constant source of pain, swells and protests even the slightest pressure. There's no appeasing it, no soothing its fragile skin.

Simple tasks, like putting on pants, can derail my entire day. It's as if I've suddenly gained 100 pounds and all my clothing is too small. The uncertainty is maddening. Will my clothes be okay to wear today? Will my shoes be too tight? Will the socks dig into my foot, causing unbearable pain?

LILIANA TRICKS

I used to dream of exploring the world, hiking in the mountains of Nepal, immersing myself in new cultures, and starting a family. Now, my only wish is to endure the day without my body betraying me.

Humidity has become my arch-nemesis, a villain that steals my comfort. Cold weather is a cruel joke, rendering my body statue-like. When it warms, I feel like I am trapped in a heated sauna.

Growing up in neglect, surrounded by drug and alcohol abuse in my family, I vowed to avoid that path. But when CRPS moved in and consumed my life, I became dependent on medication. My mind is now clouded by a cocktail of medications that once delivered relief, but now only numbness.

I was prescribed apo-clonidine, alprazolam, gabapentin, Ativan, Valium, Lyrica, buprenorphine, tapentadol, codeine, apo-tramadol and Celebrex, just to name a few.

This nightmare concoction turned me into a docile Muppet, where I lost my sense of self. Labelled “non-compliant” due to my inability to attend doctor appointments and therapies, I felt isolated and alone. I barely survived those years, lost in a haze of medication.

Life resembled a puzzle, where the pieces seem ever-changing or lost. Friends, family and my social life dissolved. Being bedridden followed, as my body began failing me. That's when monstrous thoughts invaded, taunting me with all the places I'll never see: Scotland, England, Bali, Thailand. My dreams are now a constant reminder of my losses.

The relentless pain of Complex Regional Pain Syndrome ravaged my once vibrant spirit, leaving behind a hollow, sorrowful shell. I was simply existing. Sleep became a distant memory, replaced by restless nights filled with sweat, and hot and cold flashes. The changing of seasons felt like a cruel joke, as my world shrunk, chained with me to the confines of my bed.

CRPS drove me to apply for “voluntary assisted dying” or euthanasia. But I was deemed too young and too healthy.

Forced to live decades more in constant pain, I've come to realize that even those who suffered brutal deaths, like being hung, drawn and quartered, suffer for only a moment. Yet, in the 21st century, I'm expected to endure this agony because it doesn't bother anyone else. The pain is beyond comprehension, but others dictate what I should endure.

My mind yearns to do what my body cannot, leaving me stuck on a seesaw, half in the air, half on the floor, unable to move. Everything is fatiguing, seems out of place, and lacks familiarity.

Finding the strength to fight is challenging when understanding is scarce. I feel trapped in a world as unpredictable as a broken clock, caught in a time loop.

Ultimately, nothing remains unchanged. Each minute differs from the next. Each day brings its own uniqueness. The ability to perform an activity one day doesn't guarantee the same the following day.

At times, I may walk with slightly more ease, only to find moments later that I'm unable to walk at all. Suddenly, my body will feel heavy, fragile and brittle, as if my brain is no longer connected with the lifeless body it now drags. 

That’s when I often hear remarks like, "That's sudden." But it's not.

It's a challenge to learn to comfort oneself against the constant pain and flares. Otherwise, one might end up screaming incessantly for the rest of their life. Whether you express your pain loudly or keep it to yourself, the way you handle it doesn't determine its presence or absence. The intensity of someone's pain can’t be measured by screams.

There are moments when I do scream, hoping the pain will vanish. Other times, I attempt to “breathe it out.” There's no cure for CRPS, no instant relief, no definitive solution, not even a temporary fix, because nothing is certain to work consistently.

One must come to terms with life's new constraints. After eight years, I still battle every moment to accept my altered existence. This chronic nerve disease has overshadowed my life and keeps me in constant loops of various pains.

With a background in physical therapy, I have fought to maintain my strength despite the challenges. It hasn’t been easy; I've watched my body deteriorate, but I've also witnessed improvements through dedicated therapy. Every extra hour, day, or minute that I’m not confined is a testament to my resilience.

“If you don’t use it, you lose it,” became my guiding mantra.

I spent years blaming those who had a hand in my injury that resulted in CRPS. I didn't know how to let the anger go. I can’t change the past, but I could sit and stew in it, punishing myself further. For a while I did exactly that, but now I'm learning to accept it. The web of highs and lows.

This journey is mine, and my acceptance is what matters. Today, I search for peace in my life and hope for others when there is disappointment. I strive to push myself, for the moment I stop, I lose.

I remain steadfast, persevering in the struggle, and continuing to strive for joyful times. Because I still matter.

Liliana Tricks is 33 years old and lives in Western Australia.