Do You Have Central Sensitization or Intractable Pain?

By Forest Tennant, PNN Columnist

Chronic pain patients may now be told by their doctor, nurse practitioner or pharmacist that they have “central sensitization” (CS). This vague, non-descriptive term is unfortunate in many ways. Nevertheless, it appears to be here to stay. 

Since Intractable Pain Syndrome (IPS) is a far more serious condition that requires an aggressive, multi-component treatment approach, it is essential to know the difference between IPS and CS. 

Going forward, we believe that it will be increasingly difficult to obtain some medications unless you have IPS. Therefore, it is of vital importance to not only know if you have IPS, but you must be able to clearly explain it to your physicians, family and insurance carrier. If you have simple chronic pain or CS, you could be quite limited in obtaining many prescription medications. 

Definition of Central Sensitization: Amplification or heightened pain above what would normally be expected from tissue damage or injury. 

CS occurs when brain tissue starts to alter due to excess electric currents that originate in damaged or injured tissue. Brain tissue alteration is referred to as neuroplasticity. CS can often be recognized if pain advances, because it begins to cause insomnia and requires daily, rather than “as-needed” medication. 

CS is the forerunner or precursor of IPS. Almost all persons with IPS have had or currently have CS. There is a movement among medical practitioners to recognize CS and treat it with drugs like duloxetine (Cymbalta) or pregabalin (Lyrica) to prevent it from advancing to IPS. 

Definition of Intractable Pain Syndrome: Constant, incurable pain with cardiovascular, endocrine and autoimmune complications.

Only some medical conditions cause IPS. The most common are arachnoiditis, Ehlers-Danlos syndrome, brain injury and Reflex Sympathetic Dystrophy (RSD or CRPS). 

Levels of estradiol and testosterone often go down with IPS, causing symptoms which include amenorrhea in women (missed menstrual periods), impotence in men, fatigue, loss of sex drive, osteoporosis and loss of teeth.

Your autoimmune system will also be affected by IPS, causing elevation of inflammatory markers, cytokines, proteins, and white blood cells.

This could result in symptoms of fibromyalgia, thyroiditis, carpel tunnel syndrome, TMJ, mast cell activation, and migratory joint pains.  

Pain from IPS will cause elevations of pulse and blood pressure. Cortisone and insulin levels will also go up, causing elevations in glucose and cholesterol.

“Going forward, we believe that it will be increasingly difficult to obtain some medications unless you have IPS... If you have simple chronic pain or CS, you could be quite limited in obtaining many prescription medications.”

— Forest Tennant

It is up to the pain patient with IPS to educate all concerned parties that their CS has turned into IPS and that it is a serious syndrome with cardiovascular, endocrine, and auto-immune complications. 

Each person with constant pain needs to catalogue the above manifestations and make a record to give to your medical practitioners and pharmacist. If you haven’t had blood tests for hormone and autoimmune dysfunction, you must request these be done. Please review our website and obtain materials on IPS for your medical practitioners and pharmacist. 

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

How To Get Medical Help for Intractable Pain

By Forest Tennant, PNN Columnist

Americans have been trained and oriented to believe that when making an appointment with a medical provider they will walk in, discuss their health issues and receive good care. Those days are long gone if you need care for a painful disease like Intractable Pain Syndrome (IPS).

It is common for persons with IPS to forget how rare this condition is compared to more prevalent diseases such as asthma, diabetes and hypertension. Any person with IPS also has to face the sad fact that the media, government and mental health professionals have condemned and painted every person with IPS as a drug abuser who is not worthy of being trusted with an opioid, benzodiazepine or adrenaline type stimulant.

Things have gotten so out-of-hand that most doctors are afraid to treat pain for fear of government penalties or condemnation by their peers, hospital or malpractice insurance carrier. Many veterans’ hospitals and private health plans now essentially ban the prescribing of opioids.

State and federal policies also make it difficult to travel long distance to access treatment, as that may be seen as a “red flag” that a patient is doctor shopping or visiting a pill mill.

Whenever possible, persons who have IPS should pursue physicians and nurse practitioners in their local community to provide necessary care.

Here are some tips we recommend when visiting a local medical provider for the first time:

1. Do not refer to yourself as a “pain patient,” but as a person with a disease that causes pain. Tell providers what condition you have been diagnosed with: “I have adhesive arachnoiditis, neuropathy, Ehlers-Danlos Syndrome, etc.” 

2. Put together a complete set of documented medical records and bring them to every appointment, including personal identification, local address, insurance coverage, medical diagnosis, MRI’s, lab tests, and list of past treatments. Your records should be neatly organized in a 3-ring binder or file folder.

3. Know your state’s opioid prescribing guidelines and regulations. Do not ask physicians or pharmacists to violate these rules. 

4. Research and understand your disease and carry written materials about it to your medical providers.

5. Identify a local pharmacy and health food store in your community that will fill your prescriptions and carry the supplements you need. Don’t ask a doctor to find you a pharmacy.

6. Know and be able to describe the complications of your constant pain, such as hypertension, tachycardia, elevated cholesterol, diabetes, autoimmunity and hormone deficiencies.

7. Until regular care is established with a provider, a family member -- ideally a spouse -- should attend all appointments to help build credibility and assurance with the provider.

8. Know the name and dosage of every drug and supplement you take, and which ones treat the cause of your pain, suppress the pain, or treat a complication of your pain.

9. Plan on having multiple medical practitioners to treat your conditions. For example, your primary care physician may treat your hypertension or hormone deficiencies, but a neurologist may treat the pain.

10. Due to opioid restrictions, identify non-opioid substances that will substitute or potentiate whatever opioid may be available in your community. Some examples: kratom, CBD, palmitoylethanolamide (PEA), ketamine, oxytocin.

11. Develop a care plan of non-prescription agents to treat the cause of your pain, suppress inflammation and boost hormone levels. 

Know Your Diagnosis

You must have a verifiable, anatomic diagnosis that is the cause of your IPS. The fact that you have intractable pain is not sufficient. You must know the cause of it.

An anatomic diagnosis requires a physical examination plus confirmation with an x-ray, MRI, photograph, blood test, elector-conduction study or biopsy. This information must be documented in your medical record. Equally important is to keep a copy of all test results in your personal possession -- not in some doctor’s office.

Two cases offer examples of mistakes patients can make when when visiting a provider for the first time:

1) A woman consulted with us who was taking three different opioids that had quit providing pain relief. When asked what caused her pain, neither she nor her husband knew. They could not provide an answer.

2) A woman on two opioids and three ancillary agents wanted a letter to support her disability claim. When asked the cause of her pain, she didn’t know, except that her feet and legs hurt, and someone told her she might have fibromyalgia.

Neither of these patients could produce a single page of medical records stating the cause of their pain. Not surprisingly, they also couldn’t locate a doctor to help.

The following are not considered specific enough diagnoses to obtain opioids or disability: bad back, sciatica, failed back, sprain or strain, fibromyalgia, headache, accident, EDS, neck pain or pain from a fall. 

Persons who have IPS or chronic pain are usually taking several drugs, including controlled medications, but don’t always know why they are taking them. If you don’t know why you are taking a drug, you may appear to medical practitioners to simply be a drug seeker who abuses medication or has an addiction or opioid use disorder.  

If you can’t explain in detail why you take each medication, including supplements, you shouldn’t be taking them. No MD or nurse practitioner will prescribe them to you if you don’t know why you are taking them. That is why it is imperative that you learn as much as you can about each medication and supplement you are taking. 

If the only care you are seeking is for temporary, symptomatic pain relief with opioids or benzodiazepines, don’t expect to find pain care. Also, don’t expect acceptance from local practitioners unless you are taking medications to treat the cause of your pain and to permanently reduce your pain. 

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

Why President Biden Must Act on Stem Cells

By A. Rahman Ford, PNN Columnist

In a recent Forbes article, Jake Becraft argues that biomedical manufacturing must receive similar federal investment as technology infrastructure if all Americans are to have equitable access to emerging medical technologies like stem cell therapy.

Becraft notes that -- unlike the rollout of 5G wireless technology, which received substantial public and private investment -- healthcare distribution bottlenecks have received much less attention.

 “If 70% of Americans should have access to 5G, why shouldn’t they also have access to live-saving therapeutics?” asks Becraft, who is the founder and CEO of Strand Therapeutics. “What good is gene therapy to cure blindness if only those with an extra $850,000 in their pocket and home near an urban center can access it?

“If we invest in the fair and equitable distribution of life-saving therapeutics across the country, and not just in the medical hubs of major cities, we could make cell and gene therapies as accessible as we have aimed to make 5G. Cures shouldn’t exist only for the privileged.”

For Becraft, true next-generation health access requires a revolutionizing and re-imagining of healthcare manufacturing and delivery, which would consequently speed the development of cell therapies.

A Broken Stem Cell Infrastructure

Becraft’s argument cuts to the heart of the stem cell accessibility divide, which is especially true with regard to autologous stem cells that are derived from a patient’s own body fat, bone marrow and other tissues.

Harvesting, processing and administering autologous stem cells is relatively simple, cheap and can be done in one day.  Clinicians around the world have been using these therapies to treat or even cure autoimmune diseases and orthopedic problems that are often poorly treated with conventional medical modalities,

But autologous stem cells are currently heavily regulated in the U.S. because the Food and Drug Administration considers a person’s own stem cells to be “drugs” and thus subject to the long, arduous and expensive clinical trial process.

Other countries have more relaxed stem cell regulations. This means that professional athletes and wealthy people can simply fly to Europe or Columbia to receive potentially life-saving therapy. Meanwhile, the average American – many of whom are financially devastated by COVID-19 – is left to languish and suffer.

Clearly, the incrementalism and gradualism that has for too long pervaded and permeated medical technological progress must give way to thoughtful, purposeful and conscious revolutionary reconsideration.

A ‘New Deal’ for Stem Cells

Up to this point in his nascent administration, President Biden has not made stem cell accessibility and affordability a priority. Yes, there are several clinical trials underway for stem cell candidates to treat the symptoms of COVID-19. And, to the FDA’s credit, these trials are being expedited.

But thick federal bureaucratic fog still stifles the commercialization of emerging stem cell modalities that Americans in pain so desperately need. The FDA has yet to approve a single stem cell product as a treatment for arthritis or any orthopedic condition.

Almost one year ago, I wrote that then FDA Commissioner Stephen Hahn had the opportunity to implement a stem cell “New Deal” that would provide much-needed clarity to the regulatory landscape by vesting the states with primary authority over autologous stem cells.

The “New Deal” baton has now been passed from the Trump administration to President Biden, who can help lead us the finish line of stem cell accessibility and affordability. His administration has an opportunity to make good on its pledge to do right by the American citizenry it has pledged to serve. President Biden, the American people are counting on you.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

The Pain Community Needs More Unity and Awareness

By Carol Levy, PNN Columnist

My column last month, “It’s Time for People in Pain to Be Heard,” received a lot of comments on PNN and in social media.

Most often the writer wrote about why or how they had been hurt by the implementation of the CDC opioid guideline. Several people commented that it’s not because they're too busy to become involved, they’re just in too much pain to advocate for themselves.

One poster told the story of a recent pain rally held at their state capitol. It was a real-life case of what if you threw a rally and no one came? Only one person showed up, defeating the point of the rally. The writer did not mention how many had said they would be there, but I imagine the number had to be more than one.

Yes, the pain stops us from doing many things. Yes, our complaints about how the battle against opioid prescriptions has made us the bad guys, has scarred us, and made our lives so much harder are true. But saying it only on PNN, Twitter, Facebook and other social media sites does not help the cause.

It helps us and only us, by giving us an outlet to express our anger and frustration about how our minds and bodies are affected when our medications have been reduced or stopped. The problem is that by speaking out only among ourselves, the rest of the world hears silence.

When we say the pain is what keeps us from going out and protesting, maybe we need to look at the many walks against cancer, Alzheimer's, multiple sclerosis and other diseases. Many of the people involved in those walks are not the patients themselves, who often cannot participate because of their illness. It is their family, friends and colleagues.

What if we worked to marshal our families, our friends and our colleagues to march for us?

Most people do not understand what chronic pain is or that it comes in many different forms. They are not educated about Complex Regional Pain Syndrome (CRPS), trigeminal neuralgia and other cranial neuropathies, Ehlers Danlos, and many other diseases and disorders that have essentially claimed our lives.

We have many “Awareness” days. For example, the first Monday of November each year is CRPS Awareness Day; October 7 is Trigeminal Neuralgia Awareness Day; and May is Ehlers Danlos Awareness Month. We who have the disorders may be aware of these days, but how many people in the general population don't know the day or month exists, much less what the disorder is?

To many people, “chronic pain” is merely pain that lasts a long time. CRPS or trigeminal neuralgia are chronic, progressive and often incurable, but to those who are not educated about them, they’re more like a stubborn toothache or ankle sprain that won’t go away.

What if on awareness days we inundate Congress, the news media and social media with letters, emails and tweets? What if we acted as a true group, not individual voices in the wilderness, but as a harrowing cry? Maybe then our voices would finally be heard.

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

The Unintended Consequences of the CDC Opioid Guideline

By Dr. Lynn Webster, PNN Columnist

Jack Schwartz (a pseudonym) is a child of Holocaust survivors. As a small boy, he was traumatized by observing his older brother become addicted to heroin. He also developed a substance use disorder of his own that he believes was due, in part, to childhood PTSD.

A 64-year-old psychotherapist, Schwartz has been in chronic pain since a 1996 car accident injured his neck. Although he has a history of substance use disorder, he has used opioids to manage his pain for the past several years.

His personal physician, who retired at the end of 2020, wrote a letter stating Schwartz has been prescribed Norco (a combination of acetaminophen and hydrocodone), has been compliant, and has shown no signs of abuse for the previous four years. The retiring doctor hoped Schwartz would be able to find someone to continue prescribing his Norco.

Schwartz has not yet found a new physician. In the meantime, his insurance company notified him that they would not pay for his medication, citing the CDC’s opioid prescribing guideline and their own opioid policy, which states that "narcotics are not the treatment of choice for chronic nonmalignant pain."

Schwartz contacted me after reading a PNN column I wrote, "Ironic Partners: Suicide Prevention and Pain Awareness Month." He said he was suicidal and asked me for advice. We agreed that sharing his story might help others in similar positions.

Who Should Write Clinical Guidelines?

Regrettably, Schwartz’s situation is not uncommon. Many insurers and regulators have adopted rigid policies that cite the CDC’s voluntary guideline as if it was the standard of care. The CDC has admitted its guideline is being misapplied and is working on an update, but so far the agency has done little to correct the problem.

In fact, the CDC has gone even further than the guideline, producing a fact sheet for physicians, “Nonopioid Treatments for Chronic Pain,” in which it recommends alternative medications for common chronic pain conditions including migraine, low back pain, osteoarthritis, fibromyalgia, and neuropathic pain.

Why is the CDC making medical treatment recommendations?

Cardiologists and heart surgeons should develop recommendations for managing heart disease. Endocrinologists should offer recommendations for managing diabetes. Infectious disease specialists should make recommendations for managing infections. Addiction specialists should provide recommendations for treating addiction. And it is pain specialists who should develop treatment guidelines for treating pain.

The way it should work is this: Professional organizations representing medical specialties develop treatment guidelines. Whenever possible, input should be solicited from patient stakeholders. The role of government organizations such as the National Institutes of Health, FDA, CDC, and DEA should be to provide data and resources to these groups, so they can initiate and revise treatment guidelines as the science evolves.

Specialists should lead the way to ensure patient care is clinically driven and patient-centered. Non-clinicians, such as government officials — even if they have medical degrees— should not be making treatment decisions or creating guidelines for specialists and their patients.

Walking Back the CDC Guideline

In my view, it was a mistake for the CDC to release the guideline in 2016. Before it was published, I predicted people in pain would suffer and that the guideline would not reduce the number of opioid-related overdose deaths. Unfortunately, I was correct.

Many providers, patients and their loved ones have urged the CDC to revise or withdraw the guideline. The American Medical Association has urged the CDC to make "significant revisions."  

The three co-authors of the guideline, Deborah Dowell, MD, Tamara Haegerich, PhD, and Roger Chou, MD, even wrote a commentary for The New England Journal of Medicine in 2019 acknowledging that their recommendations were being misapplied and were “likely to result in harm to patients.”

The admission that the CDC guideline was harmful was long overdue. Now the question of how the recommendations should be changed must be addressed. Hopefully, the CDC will consider input from people who have been harmed the most by the guideline and will revise their recommendations accordingly.

Jack Schwartz continues to struggle with intractable pain and suicidal feelings. He, and millions of people like him, need for your opinion and your provider’s perspective, to be heard. Maybe then more rational decisions will be made regarding the use of opioids for the treatment of pain.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. Lynn is author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find him on Twitter: @LynnRWebsterMD.

My Cancer Is Back: Facing Surgery With CRPS

By Cynthia Toussaint, PNN Columnist

After hearing the worst words of my life, “Your cancer has grown back,” I felt hopeless and hated the world. Worse, I had to tell my longtime partner and caregiver, John, the grim news. How could we pull up our frayed boot straps again and survive yet another impossible health crisis?

Since getting Complex Regional Pain Syndrome (CRPS) four decades ago, people often use words like “fighter,” “pain warrior” and “super human” to describe me. The most recent catch phrase is, “Cynth, you got this!”

I’ve come to detest this perceived awesomeness. I don’t want to be an uber-person. I never did. I’m tired. I’m so, so tired. And I long for a slice of vanilla-flavored normal.

As the owner of CRPS and 19 comorbidities, I could not afford the diagnosis of triple negative breast cancer, the most aggressive form. But that’s what was delivered, since luck has never been this lady’s lot.

Without consulting me, the universe long ago decided that I’m supposed to slay every dragon while surviving never ending illness and trauma. This latest hell-news has filled me with anger, rage and major depression.

So much so, that for the first time ever, I’m isolating. This social butterfly has returned to her cocoon, unable to feel joy.

I can’t sleep as I’m plagued by night terrors. Each afternoon, my body trembles uncontrollably. Once heavenly activities, like meditation, exercising and eating, are now chores.

John massages my taut muscle tension through the days and nights – and my IBS has gone haywire. My bubbly spirit is absent and what’s left is demoralized.

And not so long ago, I thought I had this thing licked.

Early last year, after six months of weighing my impossible-with-CRPS treatment options, I started aggressive chemotherapy knowing that this regimen could leave me with a life not worth living. The dream was that my pain would stay in check and I’d achieve a Clinical Complete Response (cancer that cannot be seen with imaging). I’m certain chemotherapy almost ended me, as I was left with virtually no immune system. As a bonus, this was during COVID. 

I was coined a “super responder” when I miraculously accomplished a complete response. At that point, the odds were strongly in my favor that the cancer was gone. But the only way to be sure was to do the follow-up standard of care surgery, which I chose to forego because, with CRPS, surgery is, well, not an option.

The doctors were floored by how well I did, and every indicator leaned toward a clean pathology report. I was ready to move on with my life, one that I felt I’d earned by doing everything right (diet, exercise, stress management, good sleep – the whole kit and caboodle!) One doctor commented, “Don’t even look at the survival numbers. They don’t apply to you anymore.”   

True to form, things went as far south as possible. Because I’m one of the unlucky ones who’s cancer stem cells never went away, my malignancy is growing back. This is not a “recurrence,” but a “persistence” because the chemo didn’t hold.

And now that my complete response is gone, I’ll never have my prior odds. John has lamented for years, “You NEVER get a break!” and I’m finally seeing it his way.

For a chance of survival, I must now have – ta daaa!! – surgery. The doctors tell me my best shot is to do a lumpectomy with follow-up radiation or a stand-alone mastectomy.

Tragically, radiation is off the table as it often causes neuropathic pain. In fact, a radiologist who I respect told me flat out, “I can’t ethically do it to you.” And during a recent visit with my surgeon, she strongly advised that, due to CRPS, I’m not a candidate for a mastectomy, let alone reconstructive surgery. Wow.

Finding a New Care Team

Adding insult to injury, out of nowhere, my lead oncologist dropped me! She did so due to questionable guidance (something I can’t detail here) and is fearful of litigation, which doesn’t make it hurt less. This woman had become my hero and I trusted her with my heart and life. Her betrayal has been soul-crushing and created a crisis of faith. I don’t know who or what to believe in anymore.

But through the shadows, I’m quietly planning my next move – and will take on Round Two one slow... step… at… a... time. I’m assembling a new-and-improved care team to up my odds, including an oncologist, acupuncturist, physical therapist, pain specialist and psychologist. I’ve sweetened the pot with an EMDR (an effective technique for trauma release) practitioner who specializes in people with CRPS. Heck, I’ve even lined up the use of a heated pool in these COVID shutdown days.    

I’m going to have a lumpectomy, a word I can still barely say, let alone write. The scariest part is that my surgeon will also remove a possibly involved lymph node in a nerve rich area, ripe for ample, new pain. My new oncologist is concerned that due to a surgery-induced CRPS flare, my arm may freeze up and become a non-functional torture machine.

Even if the surgery mercifully works without condemning me back to bed, this wouldn’t flip me a “get-out-of-jail-free” card. Because I can only do the “minor” surgery without radiation, my odds of a quick recurrence remain high. This means I’ll be on the prowl for some off-the-grid insurance, perhaps low-dose chemo or an immunotherapy clinical trial. But neither can measure up to the standard of care radiation.

God, to be well enough to be sick!         

So, here I am again, looking down the barrel of a gun, knowing it likely has a bullet with my name on it. Like I said, I’m tired and angry. I’m up to my ass with picking the lesser of two evils, and having to crack the code of the near impossible.

Give me a break, already! And I don’t mean this in a small way. I’m shouting out to the big, bad, ice cold universe that I hope, somewhere, somehow, has a heart.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

How You Can Change the Public Conversation About Pain

By Richard Lawhern, PhD, PNN Contributor

Because I am highly visible as a healthcare writer and advocate for people in pain, I receive many inquiries from people who have been deserted by their doctors and denied effective treatment.  Many ask me, “What can I do?” 

My answer is that many of our problems with pain treatment began with the guideline on opioid prescribing for chronic non-cancer pain, published in 2016 by the U.S. Centers for Disease Control and Prevention. The CDC is currently updating its recommendations, with the goal of releasing a revised guideline for public comment late this year. Without major change or outright repeal of the guideline, nothing will change and much may grow worse.

CDC management knows that they messed up -- they’ve been told so repeatedly over the last five years by both doctors and patients.  But still they dither and delay, and refuse to act on behalf of millions they have harmed.

Congress has added insult to injury with misdirected legislation blaming doctors for the substance abuse of people who never saw a doctor for pain.  And the Drug Enforcement Administration continues to drive doctors out of pain practice by targeting and persecuting those who prescribe opioid medication for people in agony.   

We can no longer depend on the CDC and DEA to do the right thing. They are too concerned with defending their earlier and ongoing misbehavior.  Instead, we’re going to have to change a lot of minds in Congress, the Executive Branch, and at the state level to force change by legislation. Thousands of patients, caregivers and doctors must lobby if change is to happen.  

How Do We Lobby Effectively? 

We don’t have the money to hire lobbyists. Law firms won’t sue without millions of dollars in retainers up front.  Most legislators don’t actually read emails, even from their own constituents, and increasingly they lock out emails from anyone who doesn’t vote in their districts. Petitions don’t work either, even when we have 100,000 signatures behind them.   

So what can we do? We can phone our legislators to demand change, and we can reach out to editors, publishers, radio and TV news anchors to ask that they show the public “the other side” of the opioid crisis.

It may seem that one person acting alone can’t do much.  But thousands of people acting consistently sometimes can.  We need patients, caregivers and medical professionals to contact their legislators and regulators.  Not just once, but every week.  Your congressional representatives in the U.S. House and Senate, as well as state legislators, can all be candidates for a phone call.  

To learn their names, first do a Google search for “legislators” plus your zip code. You might need to explore several “hits” to find the phone numbers for local congressional offices and the offices of your state legislators. Other possible contacts to explore:  

• U.S. National Office of Drug Control Policy 

• Office of the Governor  

• State Health Department

• Executive Director of your State Medical Board 

• State office of the Drug Enforcement Administration 

• State Attorney General 

Two important websites may reduce the burden of multiple Google searches to locate these people. The Chronic Illness Advocacy & Awareness Group (CIAAG) has links to a national directory of legislators and regulators by state; a library of resources and research; “How to” advocacy guides; and templates for calling and meeting with legislators. Similar resources can be found at Pain Warriors Unite, which also has a large archive of related information and advocacy guides.  

What Should We Tell Them?

When you locate the phone numbers of legislators and regulators, the next task is to phone their offices and talk to them or their staff. 

When you call, you might find that the office isn’t answering their phones.  If you can leave a message, then state your name and callback number. Tell them you are a voter in their state or district, and you want to talk with their healthcare policy staffer about how bad policy and restrictions on pain treatment are destroying your life. Hang up politely.

If you reach anyone in real time, it will almost always be a staffer.  As you speak, try to listen for their responses and be respectful.  Here is a possible script.  Practice it aloud before you make your calls, so you are comfortable with what you want to say: 

“Good morning” (or Good afternoon). My name is ___________ and I vote in ______ (State or District number).

“May I ask your name, please?”   [Make a note for later follow-up]

“I’ve been a chronic pain patient for __ years and under doctor’s care for several complex pain issues.  Right now, my life is a wreck because doctors have been terrorized by government authorities. Nearly half of primary care clinics in the U.S. are refusing to accept new patients on opioid pain relievers, even though pain is the number one reason why people see a doctor.  Many practices that still treat pain are rapidly force-tapering patients off opioids, or below effective treatment levels.”

You should include some personal details about what your life is like without adequate pain management. An example might be:

“I literally cannot get out of bed many days, because I am in agony from under-treatment of my pain. I can’t work, do simple chores, or leave the house for basic necessities without help. 

The so-called ‘prescription opioid crisis’ is bogus.  Doctors prescribing opioids for their patients didn’t create our public health crisis with addiction and overdose deaths. Pain patients almost never become addicted. For millions of us, opioids are the only thing that gives us any quality of life.”

End with a call for action. Ask them to do something with the information you give them.

“People like me need your boss to sponsor legislation to fix this mess.  We need him (her) to help stop the widespread persecution of doctors who prescribe medical opioids for people like me.

Restrictions on access to effective pain care are driving thousands of us to buy street drugs for relief or to even consider suicide. If your boss doesn’t act to stop this disaster, then he (she) will become an accessory to it.”

End the call by asking the staffer to add notes from the call to their office phone logs, and to brief the office Chief of Staff or legislator. Ask for a call-back from that individual, confirming that they got the message and are working on your behalf. Be sure to leave a call-back number if they don’t ask for one.

Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids. Dr. Lawhern has written or co-authored over 100 papers and articles published in medical journals and mass media.

Rare Disease Spotlight: X-Linked Hypophosphatemia

By Barby Ingle, PNN Columnist  

Coming off a successful Rare Disease Awareness worldwide campaign in February, I decided to go with X-Linked Hypophosphatemia (XLH) for my rare disease spotlight this month.

I do know a little about this disease, having a friend from childhood that lived with a form of it. Back then, it was known as rickets, a softening and weakening of the bones in children. I also served on a patient advisory board a few years ago for a company that created the only FDA-approved treatment for XLH.

Rickets is caused by Vitamin D deficiency, while XLH is caused by a genetic mutation that causes the body to lose phosphorous, an important ingredient for bone health. XLH cannot be cured, but its progression can be slowed with phosphate, Vitamin D and calcium supplementation.

Like rickets, XLH can cause bone deformities. Being bow-legged is the most recognizable symptom, giving providers a visible clue as to which rare disease to test for when they are uncertain. About 1 in 20,000 people carry the genetic mutation that causes XLH.   

The symptoms for XLH vary for each patient, just as they do for other conditions. The most common ones include osteoarthritis, poor bone health, bone pain, low bone density, bones that easily fracture, short stature, bow-leggedness, major tooth abscesses, large dental pulp, tinnitus, waddling gait, muscle pain and body weakness.

As I mentioned, there is only one approved medication for this disease. The drug Crysvita (burosumab) helps normalize phosphate levels and is indicated for the treatment of XLH in adults and children 6 months of age and older.

The severe bow-leggedness caused by XLH can be treated with surgery to correct and reshape the legs. For less severe cases, phosphate supplements and growth hormones can help strengthen bones. Corrective dental treatments can also help with tooth abscesses and dental pulp issues.

If you’d like to learn more about XLH, there are a few sites that I have found helpful. These include the XLH Network, a nonprofit support group, and the National Institutes of Health’s Rare Diseases Information Center. You can also get information about XLH by visiting the website for Ultragenyx, the company that makes Crysvita.

I really like this video of a family affected by XLH. The children do a great job sharing their story.

When I was growing up, we did not have as much knowledge or awareness about rare diseases as we do now. We expected people with rare conditions back then to get by with little to no assistance. Today we know more and have more treatments, but we still have a long way to go.

I know what it meant to my young friend to get support when we knew far less about XLH. She was able to live a full life, attend school, and participated in gymnastics and cheerleading with me. But she suffered more injuries than most kids, was made fun of for her bow legs, and endured daily physical pain.

I dedicate this rare disease spotlight to my friend.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

New Advocacy Group Seeks Smarter Solutions to Pain Crisis

By Pat Anson, PNN Editor

If you’re like me, you are puzzled at times by the sheer number of patient advocacy groups working on behalf of pain sufferers. There are dozens and they all have the same goals: improve the quality of pain care and give patients a voice in a society that seems to have turned its back on them.  

Most of these groups are primarily run by one or two people, have little to no funding, no board of directors, no mission statement and no website. What they lack in money and organization, they make up for in passion and personality driven posts on Facebook, Twitter and other social media, sometimes attracting thousands of followers.

But all too often, the online discourse turns into endless bickering between advocates that accomplishes little for the pain community. Tired of the infighting, some advocates stop advocating and drift away.

A new patient advocacy group was launched this week that is trying to change that. The National Pain Advocacy Center (NPAC) is a 501(c)(3) non-profit led by Kate Nicholson, a pain sufferer and civil rights attorney, who emerged as a patient advocate in 2017 with an inspirational TedTalk that explained how opioids helped her walk again after a botched surgery.  

KATE NICHOLSON

Nicholson has been working publicly – and quietly behind the scenes -- ever since, meeting with legislators, healthcare providers, academics, civil rights advocates, and people with pain. NPAC is an outgrowth of the many connections she has made.

“There are people I have worked with over the last few years on select projects. And I think we all felt we had sort of reached our capacity to work as individual actors. We needed to make a change and come together,” Nicholson explained.

“We needed to advocate more broadly for better treatment for pain. Because even though we were able to stop a bad policy here or there, it was a little like whack-a-mole. They just keep coming back. We needed a broader reach.”

NPAC has a large and diverse group of volunteers on its board of directors and advisory councils; including some familiar names in patient advocacy, such as Laura Mills, Leo Beletsky, Stefan Kertesz, Sally Satel, Anne Fuqua, Jennifer Oliva, Chris Freeman and Sean Mackey, to name just a few.

The advisory councils are so inclusive they include several people who have struggled with substance abuse or work in addiction treatment – which might get some push back from others in the pain community. Nicholson says both pain and addiction need to be addressed if NPAC is to be seen as a credible organization.

“Anytime you meet with policy makers, these two issues have become intertwined in the public conversation because of the way the story about opioids has been told,” she told PNN. “I’m not one of those people who think that no one got hurt because of liberal prescribing. There are people who are susceptible to addiction. I see it as two very stigmatized groups who need to band together to some extent because right now the infighting is causing everyone to go down, really.”

NPAC has gotten some grant money from the Open Society Foundation, another association likely to be questioned because it is funded by liberal philanthropist George Soros, a billionaire who is a magnet for right-wing conspiracy theories.

Nicholson has pledged to never to accept funding from pharmaceutical companies or other organizations that may create a conflict of interest – real or imagined -- with NPAC’s mission.

“Our goal is to change minds and shift policies,” says Nicholson, who serves on a panel advising the CDC as it makes revisions to its controversial 2016 opioid guideline. She says the current state of research and understanding of pain is in “the Dark Ages.”

“My own feeling is that pain needs rebranding. If we really think chronic pain is a disease, then shouldn’t we be calling it something different? We don’t call depression ‘chronic sadness’ even though everybody feels sad,” Nicholson said. “I really feel like there needs to be a shift in how we talk about pain and how we understand it. There really needs to be a much bigger conversation than just one treatment modality.”

A Tough Pill to Swallow

By Mia Maysack, PNN Columnist

Nothing will change if we don't demand it. So many of us are exhausted, fed up, disheartened and tempted to call it quits. But our lives are worth fighting for, as is the quality of them. 

I have a loved one who was prescribed multiple different medications for years to aid with pain, anxiety, depression and sleep disturbance. Though these medicines were taken as directed, they altered this person's brain chemistry and cultivated a physical dependence -- which isn't something that was ever mentioned to them by a medical professional as a possibility or concern. 

No longer willing to compromise with the adverse side effects, they began researching how to appropriately and safely wean themselves off these pills -- only to find out that many others who tried to were either unable to quit or lost their lives attempting to do so. 

Although it was never recommended or suggested, my loved one chose to stop cold turkey overnight, a decision they almost didn't make it through. But their determination to reclaim a normal existence exceeded the potential dangers. 

This left me with major concerns. Why were these capsules doled out for such a long period of time without a mention, thought, discussion or intervention of other therapies?  Generally, our bodies are not built or equipped to internalize anything foreign for so long, let alone forever.

What is my loved one to do now? Where could they turn? And who was going to help them?

It shouldn't be a newsflash that there's an on-going war against patients, specifically in relation to untreated pain and/or opioid use. But there are some things not everyone may realize, such as the major differences between the abuse of prescriptions, addiction and following provider instructions. Yet all three have ignorantly been grouped together.

To add further insult to injury, it's those who cannot begin relating to any of these circumstances who usually have the opinions and power to manage them. That’s similar to how I, as a white woman, cannot begin to fully understand the experiences of other ethnicities.

The same principle applies to someone who has never encountered intractable, unbearable, relentless and agonizing discomfort. It makes no sense as to how it is justified. The lack of firsthand knowledge disqualifies anyone to judge or make decisions on behalf of others directly impacted by something they cannot begin to relate to. It also boils down to a severe lack of humility.

All it would require is a shift in circumstance -- a fall, accident, surgery or unexpected diagnosis for a sudden complete change in stance on these matters.

When deaths are reported, they are often categorized under one “cause.” And when it is discovered that an individual who passed away was taking opioids, that is the box that usually gets checked. That not only unfairly minimizes respect for those we've lost, but also skews the data, painting an improper and inaccurate statistical picture to further victimize some of our most vulnerable.  

Instead of being given options and solutions, people who should be protected and served by the medical system have been and continue to be punished, while also neglected and their voices ignored.    

Fighting amongst each other by comparing our individual situations is not an adequate use of our energy. That same effort and passion would be better devoted toward contacting legislators and institutions falsely producing this hysteria, to express our dissatisfaction, demand acknowledgement and to create forward momentum in making things better.   

It isn’t acceptable to go from one extreme to another while not solving anything. This alters what the problem is, as opposed to offering an actual fix. How is it justified that the World Health Organization calls management of pain a “fundamental human right,” while millions are not only suffering but suicide rates are at an all-time high due to medical abandonment?   

Politics do not belong in the realm of healthcare. But when our integrity as “The People” is being compromised, this becomes an issue that impacts each and every one of us. If we do not fight for our virtues, we’ll lose our liberty.               

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

Low Dose Naltrexone Emerging as Treatment for Intractable Pain

By Forest Tennant, PNN Columnist

A major advance in pain management is the discovery of low-dose naltrexone (LDN), a non-opioid medication used to treat substance abuse. When prescribed off-label, LDN not only relieves pain, but has anti-inflammatory and immune boosting properties on brain and spinal cord tissues. It is now the preferred, first drug of choice for people living with constant, intractable pain.

Only those persons who are not currently on daily opioids should take LDN. A major purpose of LDN is to prevent the necessity of daily opioids, including buprenorphine/Suboxone.

A starting dosage of LDN is usually 0.5 – 1.0 milligrams taken twice a day. The average maintenance dose is about 3 – 5mg given twice a day. The maximum dose is about 7mg taken twice a day.

LDN should ideally be a part of a multi-drug program. A nerve conduction blocker (neuropathic) agent such as gabapentin or diazepam will almost always boost pain relief. A dopamine surrogate such as Adderall, Ritalin or mucuna, is also very helpful.  Routinely recommended are standard anti-inflammatory (e.g., Ketorolac) and tissue healing anabolic agents (e.g., DHEA).

A pain flare medication should also be handy and ready. Some patients taking LDN can occasionally take a low dose of tramadol, codeine or hydrocodone for pain flares. Other flare medications include ketamine, CBD, medical marijuana, ibuprofen (800mg), oxytocin, kratom and ketorolac.

Caution and Warning

Persons who currently take daily opioids must withdraw from opioids before starting LDN. In our studies, patients sometimes became deathly ill if they took LDN while still on opioids. Severe withdrawal may set in, pain relief will diminish and, at worst, a cardiac-adrenal crisis may be precipitated.

If one has Intractable Pain Syndrome and is currently on a regimen including opioids that satisfactorily reduces pain, there is no medical reason to switch to LDN.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

Is Recreational Drug Use a Human Right?

By Roger Chriss, PNN Columnist

The book “Drug Use for Grown-Ups” by Carl Hart, PhD, is garnering a lot of attention. Hart argues that recreational drug use is a fundamental human right, while also describing the harms of drug laws and policy on people of color. His book is a mixture of anecdote and analysis that raises a lot of important issues about drugs and society.

Hart is unapologetic about his own drug use and that of others, saying that "Adults should be permitted the legal right to sell, purchase, and use recreational drugs of their choice." He sees drug use as “beneficial for human health and functioning” and causing ‘little or no harm” in most instances.

Specifically, Hart states that drug use is an "act that the government is obliged to safeguard” because it is a part of the “pursuit of happiness” in the Declaration of Independence. He claims that Thomas Jefferson, one of the authors of the Declaration, was “a long-term avid drug user.”

Hart, who is a psychology professor at Columbia University, raises numerous questions in a blunt and sometimes brusque fashion, asking “Why is it that guns can be legally purchased but heroin cannot?”

He challenges his readers with remarks like: “Few would balk at using Viagra or Cialis to enhance sexual performance, but many more find it objectionable to use drugs such as amphetamines to improve the sexual experience.”

Hart doesn't mythologize or romanticize drugs or their users, and questions why advocates of the psychedelic movement call themselves “psychonauts.”

“The term psychonaut in itself is another attempt to dissociate middle-class psychedelic users from users of drugs such as crack and heroin, who are disapprovingly called ‘crackheads’ or ‘dope fiends’.”

Hart defends this position by pointing out that nearly 80 percent of illicit drug users don’t have problems such as addiction. He explains that his own heroin use is rational: “Like vacation, sex, and the arts, heroin is one of the tools that I use to maintain my work-life balance.”

As for overdose deaths, Hart contends that contaminated drugs are the issue. “A regulated market, with uniform quality standards, would virtually put an end to contaminated drug consumption and greatly reduce fatal, accidental overdoses,” he writes.

Further, Hart states that drug addiction is not a brain disease, writing that there is no evidence indicating that “responsible recreational drug use” causes brain abnormalities. He says obsessing over addiction has caused harm by stigmatizing drug users as unworthy of social support or rehabilitative care. Hart sees the opioid crisis as overblown and rooted in racism.

“All the evidence from research clearly shows that most heroin users are people who use the drug without problems, such as addiction; they are conscientious and upstanding citizens,” he writes. “The new ‘get tough on opioids’ policies have been fueled by the mistaken perception that most illegal opioid dealers are black or Latino.”

Legalization, Hart claims, is the key to changing all this. Prohibition of alcohol gave birth to criminal gangs and a thriving underground market in booze, some of it so contaminated with impurities it made people sick or even killed them. “This problem went away when Prohibition was repealed,” he points out.

But not all of this holds up so well. Hart argues that a legalized market with regulated substances would keep people safe, but he himself chooses to use an illicit substance called “hex” of unknown provenance and effect while at a drug festival.

“I now include hex among the drugs I might want to take immediately before attending some awful required social event, such as an academic reception or an annual departmental holiday party,” he wrote.

Hart’s book is also notable for what it lacks. He doesn’t look at public health data or long-term studies on drug risks and user outcomes in the U.S. or other countries, and ignores animal research on drug risks and harms.

Hart also omits recent discouraging research on drug legalization and social justice. According to the University of Washington’s Alcohol & Drug Abuse Institute, legalization of cannabis has had no impact on reducing racial bias in policing and other disparities in the criminal justice system.   

He also doesn’t discuss the under-treatment of pain in people of color due to myths about higher pain tolerance, lack of nerve endings, or greater abuse and addiction risk.

Hart clearly shows the harms of current drug policy, but arguably overstates the potential benefits of legalization. And his blunt style sometimes diminishes his own credibility.  Overall, the book “Drug Use for Grown-Ups” adds to the discussion of drug policy in the U.S. by asking some challenging questions, but doesn’t resolve many important issues.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

“Drug Use for Grown-Ups” is featured in PNN’s Suggested Reading section, along with other books on pain treatment and drug policy.

It’s Time for People in Pain To Be Heard

By Carol Levy, PNN Columnist

I just had my second “there's an issue with filling your codeine prescription” incident.

I have been on codeine, on and off, for over 30 years. Initially, I was allowed refills. When that was no longer permitted, my doctor gave me a new prescription, each and every month, for 120 pills.

When my trigeminal neuralgia pain became somewhat better as a result of various surgeries, I often took only 1 or 2 pills per day.

I am now about 90% housebound. Part of it is due to Covid, but mostly it’s because I do not want to go out and make the baseline pain worse. As a result, some days I take no codeine at all. My last prescription was for 120 pills. It was a month’s supply that lasted for 9 months.

The first incident was last year, when my pain management doctor decided, without discussing it with me, that he was no longer writing scripts for 120 codeine pills a month. Instead, he changed it to 10 pills a month.

I was told he didn’t like me having extra pills, a nonsensical excuse as I had no history of giving them away or taking too many. Prescriptions for 120 pills just made it easier for everyone, including the insurance company, since they would be paying less for fewer doctor appointments.

Fortunately, I was able to go to my family doctor, who had no problem writing for 120 pills. They trusted me there, knowing I would not abuse them.

But when I took the script to the pharmacy, I was told, “We can only fill a 7-day supply per your insurance company.”

The worst part about that was not that I would have to repeatedly go back to the pharmacy, but that the cost for each 7-day supply was much more for me out-of-pocket than if they just filled the whole prescription at once.

My Physician Assistant called the insurance company to ask for a pre-authorization. This would allow the pharmacy to fill the entire amount at one time. They immediately allowed it for the next 12 months, which seemed odd.

If they think I should only be getting a 7-day supply, then why allow the whole script to be filled for an entire year? Either I am untrustworthy or I'm not.

I am lucky. I don’t rely on daily opioids to get me out of bed, go to the store or be able to work. So many of us have no other option but to take them. My annoyance is tame compared to what other patients go through, who have been unable to get what they need due to restrictions on prescribing.

Physicians for Responsible Opioid Prescribing (PROP) recently sent a letter to the AMA saying the organization shouldn’t be calling for changes in the CDC opioid guideline, even though far more people are dying from street drugs than prescription opioids.

“Medically prescribed opioids remain a common gateway to illicit opioid use and are themselves frequent causes of opioid addiction and overdose, even if illicit opioids currently cause the greater number of deaths,” PROP said.

PROP founder Dr. Andrew Kolodny even said that prescriptions “still have a very long way to go” and should be reduced even further.

PROP’s reach is loud and strong. We complain so much to each other, patient support groups, Twitter and other social media about how awful this is, how unfair and inhumane.

A number of people have started online petitions to send to the FDA or CDC, asking that the guidelines be changed so they stop hurting chronic pain patients. Many say, “This is a great idea.” Yet few actually sign.

Nothing will change if we don’t band together and make our voices heard. The call keeps going out, “Something must be done!” But too often the answer is, “Oh yes, somebody must do something. But I'm too busy.”

Whispering in the wind won’t help. It is long past time for us to become a true force, with a voice that is louder and stronger than PROP’s. 

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.

What COVID-19 Teaches Us About Rare Diseases

By Roger Chriss, PNN Columnist

Sunday, February 28th is Rare Disease Day -- a day created to recognize and increase awareness of rare diseases that affect millions of people worldwide. This year that includes the effects of Covid-19 on the rare disease community.

The National Organization of Rare Disorders reports that there are over 7,000 rare diseases. A disease is considered rare in the U.S. if it affects fewer than 200,000 people; while in Europe a disease is classified as rare if it affects fewer than 1 in 2,000 people. Although each disease is rare, there are so many conditions that roughly 1 in 17 people are affected by a rare disease.

Rare Disease Day 2021 is occurring amid a pandemic. Covid-19 has increased awareness of medical problems like anosmia, a loss of sense of smell. In it congenital form, anosmia affects only 1 in 10,000 people, but now it is seen in millions infected with the coronavirus. For most, the loss of smell is temporary, but for some Covid patients it persists long after the initial infection.

“One might think that it is not important to be able to smell nature, trees, forests,” Evan Cesa told AP News. “But when you lose the sense of smell, you realize how truly lucky we are to be able to smell these things.”

Long Haul Covid

In a recent study, University of Washington researchers monitored 300 recovering Covid patients in the Seattle area and found that 30% reported worse health and quality of life in the wake of the illness. Some were unable to perform simple chores, lift heavy objects or walk for more than a short distance.

Chronic Covid syndrome (CSS), also known as long-haul Covid, seems to occur in about 10% of infected people. In addition to loss of smell, long haulers often have disabling fatigue, headache, shortness of breath, weakness and brain fog – symptoms that are strikingly similar to chronic fatigue syndrome (CFS/ME).

Research on how to manage long-haul Covid is looking at treatments already used for rare disorders. A clinical trial of low-dose naltrexone (LDN) is underway. LDN is sometimes used to treat refractory chronic pain conditions, and is being explored for lupus and obsessive-compulsive disorder.

The pandemic has created new challenges for the rare disease community. Accessing medical care amid a pandemic has been tricky, in particular for people whose immune function is compromised. And the handful of deaths associated with Covid vaccines has raised questions for people with severe thrombocytopenia (ITP), a rare platelet disorder.

Covid-19 is revealing what living with a rare disease is like. Some people with long-haul Covid are reluctant to disclose their condition, much as people with rare disorders often struggle with when and how to share information about their diagnoses.  

People with long haul Covid are struggling to gain recognition for their disability. As NPR reports, long haulers have asked the federal government for disability coverage, rights and protections -- but it's unclear if they qualify under the Americans with Disability Act.

While Covid-19 has increased awareness of rare diseases, it’s also slowing rare disease research and complicating care. This year, many Rare Disease Day events are being held online due to the pandemic.

Hopefully, Rare Disease Day in 2022 will take place in a post-Covid world.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

Would Drug Legalization Reduce Overdoses?

By Roger Chriss, PNN Columnist

As the overdose crisis worsens, public health data and biostatistics become more important. Debates about opioid prescribing and drug legalization often center on two key concepts: incidence and prevalence as applied to drug use, substance use disorder (SUD) and overdoses.

Brandeis University researcher Andrew Kolodny, MD, recently argued against drug legalization on Twitter.

“Some critics of reducing Rx opioids don't believe that repeated use of highly addictive drugs cause addiction and/or they believe all drugs, including heroin & cocaine should be available over the counter. They don't believe that easy access can increase prevalence of SUD,” said Kolodny, who founded Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group.

Conversely, Columbia University professor Carl Hart, the author of “Drug Use for Grown-Ups,” believes legalizing recreational drugs would help reduce overdoses by making the drug supply safer.

“A large proportion of these deaths are caused by adulterated substances purchased on the illicit market. A regulated market, with uniform quality standards, would virtually put an end to contaminated drug consumption and greatly reduce fatal accidental drug overdoses,” Hart told Columbia Magazine.

Both claims hinge on a proper understanding of incidence and prevalence. In epidemiology, incidence is the rate of new-onset diagnosis of a medical condition. It is measured over a given period of time -- typically a year -- though sometimes the time period is shortened to a week for an urgent problem, such as a viral pathogen like the coronavirus.

By contrast, prevalence measures the total number of people in a population who have a specific medical condition. For prevalence, the duration of the condition is important. For an infectious disease, it may be brief. But for cancer, SUD and many other chronic conditions, it may last a lifetime.

For instance, the incidence of opioid use disorder (OUD) among people who are on long-term opioid therapy is 8-12%, according to the National Institutes of Health. But unlike claims frequently made by PROP, only a small fraction of patients who abuse prescription opioids start using heroin, less than 4% over a five-year period. So, making a clear distinction between OUD involving prescription opioids versus heroin becomes important.

The prevalence of OUD is a cumulative total of all people with OUD over time. This is because OUD and other substance use disorder diagnoses are lifetime diagnoses that remain on a person’s medical records forever. When we count people with OUD, we are counting everyone ever diagnosed with the condition, though in practice sometimes the OUD diagnosis is dropped due to administrative error, poor record-keeping or deliberate obfuscation.

This means that OUD prevalence can go up over time even when the incidence of OUD is going down. In fact, that is what is happening at present.

A recent report from the Substance Abuse and Mental Health Services Association showed modest declines for both prescription opioid misuse and heroin use. This came at a time when U.S. drug deaths were rising, fueled primarily by overdoses involving illicit fentanyl.

These counterintuitive trends make for intense debate about the success or failure of the 2016 CDC opioid guideline and state laws restricting prescription opioid use. A recent study from Indiana University concluded that limits on legal opioid prescribing may have actually driven more people to illicit drugs.

"Our work reveals the unintended and negative consequences of policies designed to reduce the supply of opioids in the population for overdose. We believe that policy goals should be shifted from easy solutions such as dose reduction to more difficult fundamental ones, focusing on improving social conditions that create demand for opioids and other illicit drugs," said co-author Brea Perry, PhD, a professor of sociology at Indiana University.

Even if drug legalization were to reduce drug risks, an increase in the number of drug users could lead to more harms. For instance, if an illicit drug harms 10% of users and there are 1 million users, that results in 100,000 people harmed. If that drug is then legalized and made safer, harming only 1% of users, that seems like an improvement. But if the number of users rises to 15 million, then 150,000 people would be harmed.

Since we don’t know how these numbers would change under a legalized drug regime, any claims about changes in incidence or prevalence are speculative at best.

What is counted and how it is expressed are very important in debates about the role of prescription opioids or drugs in general in SUD and overdose deaths. A failure to be specific about methodology or using data that is not well-founded can result in specious or even deceptive claims. And counterintuitive results are possible, as we are seeing at present in the ever-evolving overdose crisis.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.