Michael J. Fox and Rebuking Ableism

Person off-screen: “The sad sack story is Michael J. Fox gets this debilitating disease and it crushes him.”
Fox: “Yeah, that’s boring.”

On May 12th, Apple TV is releasing Still: A Michael J. Fox Movie. I am SO excited to watch this look back at not only his career but his early Parkinson’s journey.

Like many people, Fox felt like he had to hide his condition from the public. No one outside of his family knew for a long time. I’m sure there were many factors to this, but chief among them is ableism.

People won’t hire disabled folks for roles, assuming they can’t do specific actions or out of worry about what to do if the star’s condition worsens. Instead of being able to show up authentically in the workplace, many actors with disabilities have to hide them in order to continue working. In the meantime, they get to deal with tabloid commentary about their weight, appearance, family life, and more.

Perhaps what I’m most excited about is the interaction I opened this post up with – that focusing on a pity party or rooting this film in ableism is boring. It is! “Pity is a benign form of abuse,” Fox has said. He’s not wrong. More than that, films that lean that way act as though disabled folks are already dead, that our lives hold no more meaning.

As he says in the below around the 1:50 mark, “I love the idea that disabled people can be assholes, too.”

It’s beyond refreshing to see someone so well-known rebuke that idea and focus on sharing what real life with his disability is like. We’ve seen that with celebrities who have recently come out with their disabilities, including Selma Blair. It’s nice to see it coming from someone who played such a pivotal role in many of our favorite shows and films from the 80s and 90s.

That’s doubly true when the Michael J. Fox Foundation does such amazing work. This week, they announced a breakthrough in the search for a biomarker for Parkinson’s – “a biological test for Parkinson’s disease that demonstrates high diagnostic accuracy, differentiates molecular subtypes and detects disease in individuals before cardinal movement symptoms arise.” This will lead to early detection and treatment as well as a better understanding of this condition. It will save lives, and it could very well be an important stepping stone to a potential cure or at least better treatments.

Fox had this to say about the discovery: “There are many ways I am involved with the work of the Foundation, but I come to this result first and foremost as a Parkinson’s patient. I am deeply moved by this breakthrough and endlessly grateful to the researchers, study participants and funders who have endeavored to bring us this far. When we started PPMI, we weren’t casting about for fish — we were going after a whale. Now, here we are. Together we are making a cure for Parkinson’s inevitable.”

Fox has won multiple awards for his activism, but I missed him receiving the Jean Hersholt Humanitarian Award four months ago. If you did, too, it’s worth a watch:

I am so excited to see Fox being more present and better recognized for the work he has done and continues to do.

To close this out, I’ll share another one of my favorite lines in the Still trailer – one that likely won’t surprise you, given the name of this site.

Person off-screen: “What did it mean to be still?”
Fox: “I wouldn’t know. I was never still.”

graphic with the title 'orthostatic hypertension' featuring an illustration of a dizzy person with a heart on their shirt

Orthostatic Hypertension

Back in December, I had a long day of tests at the Cleveland Clinic. After speaking again with the provider who ordered these tests, she shared that, while she did not think I had POTS specifically, she did think I had another, less common form of dysautonomia.

 

Orthostatic Hypertension

Orthostatic hypertension is when someone’s blood pressure suddenly shoots up when they stand. Generally, this requires a rise in your systolic BP (the top number) of at least 20 mmHG. We don’t know what causes this, but some conditions that are related are anorexia, inflammation of the aorta, narrowing of the kidney arteries, and type 2 diabetes.

According to a 2008 study, this condition affects just over 1% of the population. This condition isn’t super well known, meaning that there aren’t necessarily concrete treatment regimens for it.

Now, does this mean I don’t have POTS? Actually, no! People can have both. Some providers would still cause this POTS, but specify that it is hypertensive. There’s not a lot of agreement on how to diagnose or label this correctly honestly. Furthermore, this is a form of both orthostatic intolerance and dysautonomia, so it’s still in the same genre. To me, orthostatic hypertension makes far more sense as a diagnosis based on my symptoms and labs – and that’s true looking back a ways.

 

Cardiology + Treatment

Ritalin – which I’m on for my ADHD – can also help treat forms of orthostatic intolerance. We see this specifically in conditions like POTS. However, we know it can also cause hypertension on its own. So can testosterone.

Thankfully, the cardiologist that I saw is amazing:

I immediately was put at ease. I can’t think well without my Ritalin. Going off testosterone would literally cause an uptick in my chronic pain. Plus, I’d feel awful from experiencing the effects of estrogen again. There’s no way I was going to budge on these things anyway.

So, we’re starting with a medication to lower blood pressure called doxazosin. There is some evidence to suggest that this is a helpful medication for this condition. This medication is also an alpha-adrenergic blocking agent, a class of medications that is used to treat PTSD and nightmares.

I’ve also stopped my increased salt pills and diet, something that a previous provider recommended when he gave me a differential diagnosis of POTS based on symptoms and comorbidities. (No, he didn’t want to put me through a tilt table test at the time. I’m annoyed I didn’t press further.)

I’m testing my blood pressure at random times to be able to show how things are going at my next appointment. So far, though, I’ve had a general lowering in my systolic numbers which is great!

 

Outlook

Dean and Hank - black and white mix dogs - look out a window while leaning on a couch
Dean and Hank watching the UPS dude grab my Kineret this morning

Well, since this condition isn’t well-known, it’s not as well-studied as I’d like. Orthostatic hypertension is associated with higher risks of heart attack, stroke, and early death. Obviously, the goal is to not have those things happen. If we decide this medication isn’t working as well as we want at the end of this trial period, we’ll re-evaluate medications and see what else we might need to do.

I’m paying more attention to my both my pain and stress levels, as these can send blood pressure soaring. I am historically awful at balancing both of these things. Being in the middle of countries around the globe attempting to pass a record-setting number of transphobic legislation is not helping. This is part of why we talk about how stress kills marginalized and underrepresented folks.

I also had to fight all year to re-obtain access to Kineret after an insurance switch. (It’s been a whole thing.) My month-long shipment of meds arrived today. That along with having re-started physical therapy will both be beneficial.

If I could share one thing with folks, it’s this: get a tilt table test done before you accept a differential diagnosis of POTS. I’m kicking myself for taking steps that would’ve been great for POTS but probably ultimately will have taken years off my life because I received incorrect information. I don’t want that to happen to other people.

ACR Urges CMS to Reconsider Copay Assistant Programs in CMS Proposed Rule

The following is a press release issued by the American College of Rheumatology dated January 31, 2023:

The American College of Rheumatology (ACR) today submitted comments to Centers for Medicare and Medicaid Services (CMS) administrator Chiquita Brooks-LaSure urging the agency to reconsider its current policies on essential copay assistance programs that enable patient access to needed treatments.

Current CMS policy allows insurers to exclude copay assistance from counting toward a patient’s deductible. Copay assistance programs provide patients with financial relief from the high costs associated with many treatments, such as biologics and biosimilar products, upon which they rely to control rheumatic diseases. Without copay assistance, many patients will be unable to pay their deductible, resulting in delays to needed treatment, medication rationing, or forfeiting treatment entirely.

“Rheumatologists care for patients with complex chronic and acute conditions that often require costly treatments. Without vital programs like copay assistance to help them afford treatment, our patients can face irreversible joint and tissue damage as well as serious declines in the quality of their everyday lives,” said Douglas White, MD, PhD, President of the ACR.

The ACR remains deeply concerned about cost-shifting tactics used by health insurers that place a disproportionate financial burden on patients with chronic rheumatic and musculoskeletal conditions like lupus and rheumatoid arthritis. With roughly 95% of expensive specialty medicines having no generic or lower-cost alternative, this proposed rule will leave many rheumatology patients in an untenable position.

“The ACR is deeply concerned that the proposed policies to increase the maximum out-of-pocket limitations, coupled with allowing insurers to exclude copay coupons to be applied toward a patient’s out-of-pocket limit, debilitates our patient’s ability to access the treatments needed to help manage their painful chronic condition,” wrote ACR in its letter. “While we understand the need to find solutions to help curb the increasing cost of healthcare, we cannot support policies that sacrifice our patients’ health in the name of cost savings.”

A New Perspective on COVID-19 Risk Aware Conversations in Healthcare

Following my Cleveland Clinic journey, I sent a follow-up to the provider who ordered testing to talk more. She was not seeing the heart rate change that she expected with POTS. She was concerned, though, about the rise in my systolic BP during the test – especially since my seated BP is always fine.

So, I’ve scheduled a cardiology appointment more locally. Today, while filling out the pre-screening questionnaire, I was delighted to see the way this COVID-19 risk aware conversation was framed.

Importance of a Mask
For an upcoming appointment with
• It is very important that you wear a mask, especially since you are now in a healthcare environment.
• Many of our patients here are at a higher risk for serious injury or death from infection than most people.
• We do everything we can to keep everyone safe: you, our other patients, and everyone taking care of you.
• What we DO know about COVID-19 is that wearing a mask helps you stay safe and helps prevent the spread of the disease to others, especially knowing that we have a number of people here who are at higher risk.
• I am asking you to do something that I am also doing: wearing a mask.
• By wearing a mask, I'm reducing the risk for you, too.
• I ask that you do the same to keep me safer... and the other patients that we treat here.
Thank you for your cooperation.
*Indicates a required field.
*Are you willing to wear a mask?
Yes, willing to wear a hospital provided mask
No, not able or willing

Why in the world is this the first time I’ve seen a good example of this conversation??

What about you – have you seen similar notices?

2022 Specialty Match Day Results Show Strong Appeal of Adult Rheumatology, Ongoing Need to Increase Interest in Pediatric Rheumatology

The following is a press release from the ACR dated 12-21-2022:

The American College of Rheumatology is pleased to announce another successful recruitment season and welcomes this impressive pool of applicants to the field of rheumatology. 75 percent of the eligible candidates interested in adult rheumatology and 96 percent of eligible applicants interested in pediatric rheumatology were matched to fellowship programs for the 2023 appointment year as part of the annual National Residents Matching Program (NRMP).

Rheumatology leaders again noticed a stark contrast when looking at the percentage of available adult and pediatric fellowship slots that were filled. Whereas the adult programs filled 97.8 percent of their available slots, the pediatric programs only filled 62.8 percent, signaling a need to increase interest in pediatric rheumatology. While the number of adult fellowship matches has seen a steady increase over the past five years, interest from candidates has continued to exceed the number of available positions, suggesting ongoing opportunity to expand fellowship training opportunities. Continuing to make progress in these areas will be important given the workforce shortage projections identified in ACR’s 2015 workforce study.

“This year was the first time that the adult and pediatric fellowship Match dates aligned, allowing participants the opportunity to apply to and rank both adult and pediatric training programs in a single rank list by a dual-trained applicant or by a couple. This change has been welcome, as it facilitates the application process for a number of candidates,” said Beth Marston, MD, chair of the American College of Rheumatology’s (ACR) Committee on Training and Workforce Issues (COTW).

“Unfortunately, we continue to see limited numbers of applications for pediatric rheumatology fellowship positions, with 27 applicants filling only 26 of a possible 43 total positions. Other pediatric specialties such as pediatric pulmonology, nephrology, infectious disease, and endocrinology also had a significant number of unfilled positions; in contrast, the relatively new field of pediatric hospital medicine filled nearly all open positions, which may hint at the goals and training interests of current pediatric applicants. Many potential barriers have been suggested, including inadequate exposure and mentorship within these specialties, long periods of required training, and lower ultimate compensation for pediatric specialists, which might be targets for future work to improve our pediatric specialty workforce,” continued Marston.

“The adult rheumatology workforce also remains threatened, with ongoing national efforts by the ACR’s Workforce Solutions Committee to increase fellowships and fellowship positions, particularly in geographically underserved areas. Because a substantial number of applicants have remained unmatched over the last several years, any increase in the number of available fellowship positions is likely to continue to directly affect the future physician workforce within rheumatology,” Marston concluded.

In addition to efforts to continue to increase fellowship positions, the ACR continues to work to create new mechanisms to increase exposure to rheumatology earlier in training, to understand barriers to training in pediatric and combined internal medicine and pediatrics rheumatology, and to support programs and program directors as they navigate curricular and regulatory changes.

The NRMP, established in 1952 at the request of medical students, uses a computerized, mathematical algorithm to align the preferences of applicants and program directors to fill training positions available at teaching hospitals in the United States. Full details of the 2022 Match Day results for adult and pediatric fellowships can be found online here.

my cleveland clinic trip

My Cleveland Clinic Trip

Back in January 2019, I finally received my hypermobility and MCAS diagnoses. The provider I saw for hypermobility also had given me a differential diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). Over the summer this year, I was able to get a virtual appointment with the POTS clinic at Cleveland Clinic. Last week, I went in for a day of testing.

It was… an experience. Honestly, I’m feeling less like this was the best step for me.

Continue reading “My Cleveland Clinic Trip”

Pre-Order “Keeping It Real with Arthritis” Today!

photo shares info that is also in the post

Featuring over 100 worldwide, personal stories written by passionate and inspiring individuals living with arthritis, and their supporters; parents, caretakers, and medical professionals. Ranging from heartfelt, hopeful, motivating, and empowering, to heart-wrenchingly eye-opening, these stories shine a light on the realities of everyday life with arthritis and related conditions. Readers will get a first-hand look at the good, the bad, and everything in between, from those who are experts in lived experience and clinical matters. This book is not only a collective effort to raise awareness that arthritis is more than just a disorder that affects the joints and highlights that people of all ages can get arthritis. Most importantly, it explains there are hundreds of different forms of arthritis that impact all areas of life in profound ways, from physical limitations, mental health, social lives, relationships, faith and spirituality, finances, and work and career life balance.

One chapter is written by yours truly!

You can pre-order the book up until the release date – December 6, 2022 – here.

ACR Educating Dermatologists and Nephrologists on Lupus Clinical Trials Racial Disparities

The following is a press release issued by ACR this morning (Nov 2, 2022).

The American College of Rheumatology (ACR) has released Continuing Medical Education (CME) for dermatologists and nephrologists to help them learn more about clinical trials for lupus patients in their respective treatment areas and the importance of getting more of their African American/Black patients enrolled.

Lupus is a multisystem disease and is frequently managed by a care team including rheumatologists, nephrologists, dermatologists, and other specialists. African American/Black, Hispanics and Native Americans are also disproportionately affected by the condition. This new CME is part of the ACR’s “Materials to Increase Minority Involvement in Clinical Trials” (MIMICT) initiative and is aimed at educating these providers on the importance of increasing minority participation in lupus clinical trials.

“In the United States, African American/Black patients represent approximately 43 percent of lupus cases, however, only 14 percent of lupus clinical trial participants are African American/Black,” said Starla H. Blanks, Senior Director of Collaborative Initiatives for the American College of Rheumatology. “African American/Black patients with lupus. They are also four times more likely to get lupus nephritis, a type of kidney disease, which can increase the mortality rate.”

The new CME provides nephrologists and dermatologists with specific information on racial disparities in lupus clinical trials, why it’s important to increase minority participation in lupus clinical trials, and the barriers providers face when encouraging patients to participate in lupus clinical trials.

“Skin and kidney symptoms are common in lupus patients and there are clinical trials specifically targeting these two organ systems. The CME training addresses barriers like patient mistrust, lack of familiarity with trials, and an intimidating consent process,” said Rosalind Ramsey-Goldman, MD, DrPH, chair of the ACR’s Collaborative Initiatives Committee. “It also addresses facilitators like culturally sensitive communication and social support by emphasizing skills that provide support for both the provider and the patient.”

The new CME for nephrologists and dermatologists can be found on the ACR’s Lupus Initiative website. The expansion of MIMICT was made possible by a two-year grant for the ACR’s Training to Increase Minority Enrollment in Lupus Clinical Trials with CommunitEngagement (TIMELY) project from the U.S. Department of Health and Human Services Office of Minority Health. More information about the ACR’s work on lupus awareness and educational programs can be found at www.thelupusinitiative.org.

Updated Guideline Introduces Recommendations for Prevention and Treatment of Glucocorticoid-Induced Osteoporosis

The following is a press release from this past week, care of the ACR.

The American College of Rheumatology (ACR) released a summary of its updated guideline for the Prevention and Treatment of Glucocorticoid-Induced Osteoporosis. Many patients take glucocorticoids for a variety of inflammatory conditions, and anyone who is taking glucocorticoid medications and has other risk factors for osteoporosis increases their risk of developing glucocorticoid-induced osteoporosis. New osteoporosis medications and new literature have become available since the last ACR treatment guideline was published in 2017.

“One major side effect of glucocorticoid therapy is bone loss and an increase in the risk of fractures. Fractures can cause significant morbidity and be associated with an increased risk of mortality,” said Mary Beth Humphrey, MD, PhD, co-principal investigator of the guideline and interim Vice President for Research and a Professor of Medicine at the University of Oklahoma Health Sciences Center. “With newly approved osteoporosis medications and a review of the relevant literature, we felt it was important to update the guideline.”

The guideline team conducted an updated systematic literature review for clinical questions on non-pharmacologic and pharmacologic treatment addressed in the 2017 guideline, and for questions on new pharmacologic treatments, discontinuation of medications, sequential and combination therapy.  The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was used to rate the certainty of evidence. A Voting panel including clinicians and patients achieved ≥70% consensus on the direction (for or against) and strength (strong or conditional) of recommendations.

The guideline includes recommendations on abaloparatide and romosozumab, which are two medications that are newly available since the 2017 guideline, as well as recommendations for other osteoporosis medications.

The guideline also recommends sequential therapy (any treatment regimen in which the patient is given one treatment followed by another), which was not addressed in the previous guideline. The recommendations for sequential therapies are based in part on some study designs, long term follow-up studies, and new clinical trials.

“Some physicians may be surprised about the need for sequential therapy when completing a course of denosumab, parathyroid hormone/parathyroid hormone related protein, or romosozumab. If not done, patients could be at risk of rapidly developing vertebral fractures and bone loss,” said Linda Russell, MD, Director of Perioperative Medicine, Director of the Osteoporosis and Metabolic Bone Health Center for the Hospital for Special Surgery and co-principal investigator of the guideline.

The updated guideline also gives more flexibility on drug selection and considers patient and physician preferences.

“The previous guideline rank-ordered medication for the treatment of glucocorticoid induced osteoporosis. We felt it was important that this guideline reflect patient/physician decision making,” said Dr. Humphrey.

A full manuscript has been submitted for journal peer review and is anticipated to be published in rheumatology journals in early 2023. The summary of the guideline recommendations can be viewed in full on the ACR website.

Research Study on Cannabinoids for Californians with OA, RA, or Fibromyalgia

photo containing information in this post

Researchers from the University of Michigan are conducting a study on the efficacy of different cannabinoids (such as CBD and cannabis) in treating Fibromyalgia, Rheumatoid Arthritis, and Osteoarthritis and YOU have the opportunity to participate!

If you complete the study you may receive up to $500 in Amazon gift cards.

Again, this is for California residents only.

Learn more here!

The study sponsors are LEVEL and OvercomeEach participant will be in the study for 12 weeks. You can easily participate from the comfort and safety of your home using your smartphone. Again, this study is on the consumption of cannabinoids such as CBD and cannabis.

The study is limited and on a first-come, first-serve basis. To learn more and find out if you are eligible to participate, please visit releaf.at/umpain