CDC Releases Draft of Revised Guidelines for Opioid Prescribing

Posted on by Grayson

The following is from the US Pain Foundation’s Director of Policy and Advocacy, Cindy Steinberg, in a press release dated February 18:

You may have heard by now that the CDC released an updated draft version of the Clinical Practice Guideline for Prescribing Opioids – 2022. This new Guideline will take the place of the 2016 version. You can read the full version here.

The document is 200 plus pages which I am currently reviewing and will draft a formal comment to the docket on behalf of the U.S. Pain Foundation that we will share with you when it is ready. However, we wanted to summarize the changes in the new version for you. (Please see below.) We have prepared a head-to-head comparison of each of the twelve 2022 Guideline statements with the twelve 2016 Guideline statements that you can see here.

We also wanted to let you know that you can and should write into the docket with your views on the revised Guideline. All comments will be read by CDC. The deadline to submit comments is April 11, 2022. To submit your comments, click here.

Changes to the Guidelines

Overall, this revised Guideline is an improvement over the 2016 version. It is less dogmatic, more balanced and urges a more flexible approach to individual patient needs.

The greatest change is the removal of dosage cautions and limits in Guideline 5. The number of days of treatment duration for acute pain have also been removed from Guideline 6.

The newly released Guideline has softened recommendations around patient surveillance advising clinicians to periodically review state PMP data and consider using toxicology. The 2016 version directed clinicians to check the state PMP prior to every script or at least every 3 months and urged urine testing prior to starting opioid therapy and at least annually thereafter.

In this latest version, the CDC has also strengthened warnings to clinicians regarding not abruptly or rapidly reducing opioid dosages.

Again, we urge you to make your views known on this latest version by writing your comments to the docket. After April 11, CDC will review all comments and release the final draft of the updated Guideline later in 2022.

NextGen Therapies in SJIA, Still’s & MAS

Posted on by Grayson

The Systemic JIA Foundation recently held its NextGen Conference. The conference, which had over 350 participants, featured three days of presentations and discussions around a few core ideas:

  • There are cases of SJIA without arthritis and arthritis should not be required for diagnosis of SJIA.
  • Different phenotypes of refractory SJIA (with arthritis or lung/liver involvement).
  • The use of IL18 as a biomarker for disease & trials.
  • Planning for clinical trials for both refractory SJIA and MAS.

One of the sessions covered Bone Marrow Transplantation in refractory SJIA. The last session focused on SJIA-LD, with a talk about use of lung ultrasound to diagnose/track lung disease and a new hypothesis for SJIA-LD – the Cytokine Plasticity Hypothesis.

The participation of the FDA in many of the sessions, with comments and feedback, added a whole other dimension – enabling us as a community to go from discussion to planning of clinical trials.

Weren’t able to attend?

Rewatch or view all of the ground-breaking sessions from NextGen 2022 through the virtual conference platform. All of the content is now available to view until the end of August. Anyone can register free (though the conference is over) to gain free access to conference videos for the next 6 months – including patients & parents!

Register now

Fifth Update of ACR COVID-19 Vaccine Guidance Supports Fourth Doses for High-Risk Rheumatic Disease Patients

Posted on by Grayson

The following is a press release issued by ACR today:

The American College of Rheumatology has issued an updated version of its COVID-19 Vaccine Clinical Guidance for Patients with Rheumatic and Musculoskeletal Diseases that includes support for supplemental and booster doses (often patients’ third or fourth doses), recommendations for timing of those injections in relation to immunomodulatory medication use, and revised guidance for pre- and post-exposure prophylaxis with monoclonal antibody treatment.

The guidance recommends that all rheumatic disease patients receive a booster dose after their primary vaccine series, as recommended by the CDC. Patients who are expected to have mounted an inadequate vaccine response due to using immunosuppressant treatments (as outlined in Table 3 of the guidance), should take a third mRNA vaccine dose as part of their primary vaccination series prior to their booster, for a total of four doses. These recommendations for primary vaccination, supplemental dosing, and booster doses apply regardless of whether patients have experienced natural COVID-19 infection.

The CDC currently recommends third mRNA doses be taken at least 28 days after the first two mRNA doses and booster doses be taken at least five months after completion of the primary vaccination series. Based on the availability of evidence, patients should try to take the same mRNA vaccine for their third dose but may use either if the initial brand is unknown or unavailable. No additional primary shot for the Johnson & Johnson (J&J) vaccine is approved at this time, but a booster dose of an mRNA vaccine is recommended at least two months following the primary J&J shot.

“It remains important for rheumatology providers to assess the vaccination status of all patients with rheumatic diseases,” said Dr. Jeffrey Curtis, Chair of the ACR COVID-19 Vaccine Guidance Task Force. “Initially, it might have been acceptable to just ask a patient if they have been vaccinated. There is now more nuance with supplemental and booster dose recommendations that should prompt us to ask patients not only whether they have been vaccinated, but with what, how many times, and how recently.”

The guidance also continues to support the use of pre-exposure and post-exposure monoclonal antibody prophylaxis for high-risk autoimmune and inflammatory rheumatic disease patients when/if available for use, noting that the FDA has limited the use of some monoclonal antibody therapies in light of the current conditions. For example, neither bamlanivimab and etesevimab (administered together) nor casirivimab and imdevimab, are licensed nor available under emergency use authorization (EUA) given their lack of activity against the Omicron variant, the dominant strain circulating in the U.S.

The updated recommendations can be found on the ACR website. Statements in bold are those that have been revised or added in the most current version of the document. These changes are also summarized in the Appendix Table. An important set of guiding principles, foundational assumptions and limitations are mentioned in the Supplemental Table.

A peer-reviewed manuscript with additional details on the clinical studies, data, and discussion points that influenced the recommendations has been submitted for publication to Arthritis & Rheumatology. It will be made available on the ACR website once published.

IG Live Wed. 1/19 on Trans, Non-Binary & Gender Non-Conforming Health, Advocacy & Allyship

Posted on by Grayson

You’re invited to a HealtheVoices Instagram Live on Trans, Non-Binary & Gender Non-Conforming Health, Advocacy & Allyship this Wednesday, January 19 at 4 p.m. ET/ 1 p.m. PT!

Tune in for a vial conversation with host Mychelle Williams, LPC, NCC (she/they) and expert activists La’Mia Aiken-Medina (she/her), Gia Love (she/her), and Julian Gavino (he/him) on the experiences and challenges transgender, nonbinary and gender non-conforming individuals face in pursuit of health and wellness, including: medical bias and discrimination; accessing quality and comprehensive healthcare; and mental health and wellbeing. The discussion will also cover key tenants of advocacy and allyship in support of these communities.

This HealtheVoices Chat is presented by the DEAI Task Force. Learn more here.

Tap this post to receive a reminder when the event starts. You can also add this to your Google Calendar by clicking here.

Grayson and the Very Bad No Good Day

Posted on by Grayson

grayson and the very bad no good day

In November, I visited an allergist at Cincinnati Children’s Hospital. It felt weird, but he had offered to see me after I reached out looking for MCAS-aware doctors in the state. He shared that he saw adults too, so I felt okay going there.

This was the first medical appointment my partner got to come with me to, so I was nervous about that. I wasn’t nervous about this doctor, though… and I should’ve been.

 

The Appointment

Dr. A was running behind, which I wasn’t too worried about. I’d set up the appointment at essentially the end of the day. I was getting tired, though, which usually brings a decent amount of brain fog with it. Add to that how I hadn’t prepared as thoroughly as I generally do for appointments, and I was off my game.

When Dr. A came in, he did so without really saying hi. That felt weird, but I chalked it up to how long his day had been and tried to shake it off.

That was, until he dug into asking why I think I have Mast Cell Activation Syndrome.

Let’s be clear: MCAS has been the differential diagnosis we’ve been running off of for years to explain my allergies. Tests show up with mixed results, and we know that the tests aren’t great and miss many people – hence treating based on believing this is MCAS. Based on my treatments, reactions, and even my comorbidities, this is the right diagnosis.

He told me things that are categorically false about this condition. He also told me that my reaction to anesthesia during top surgery wasn’t typical of MCAS. Since they didn’t run labs while helping my body to not yeet itself into the great beyond, he wasn’t going to take the views of the medical team who was treating me seriously.

“They still should have run lab tests.”

We wound up with him saying I have chronic hives. It’s a woefully incomplete and inaccurate picture of my condition, especially as it leaves out the various other body systems involved. Then again, I guess I can’t expect much when he didn’t actually ask about any of my symptoms. No general questions about what brought me in or anything along the lines of getting to know who I am.

It was like Dr. A had no bedside manner. To prove it, he began to run the Beighton Score test for Ehlers Danlos Syndrome (EDS) on me without warning me what he was going to do. My joints were incredibly unhappy. We also know that score isn’t accurate for a number of reasons.

After then asking me to hop up onto the exam table, he was absolutely shocked that I was working in public health. He seemed to assume I knew nothing about healthcare at all. Perhaps the appointment would’ve gone better if I had pulled out my degrees and experiences beforehand.

After asking about a possible referral to a POTS specialist if he knew one, I was quizzed on what I do to help with this condition. When I didn’t list exercise, I got the “Well, ya know, POTS is something best treated with exercise” line.

I suppose it was a mistake to even try, but asking him if he was aware whether or not the rheumatologists at CC also saw adult SJIA patients was met with incredulity. “Why in the world would you need to see a pediatric rheumatologist?” Um, IDK, if I went into MAS?

When Dr. A left the room, I turned to look at my partner. We were both completely floored at how I was treated. We talked about just finding a new allergist because I can’t do that again. With the holidays and a change in insurance as I start my new job, that’s been on hold slightly. This week, though, my goal is to try to get an appointment set up with someone closer – and closer to my level.

 

Unpacking

The whole experience was so frustrating. It felt like Dr. A had already made his mind up about me being a hypochondriac or attention seeker before he even saw me. I’m sure the fact that I am overweight, trans, and still often read as a young person added to the shit sundae I got shoveled into my face.

Hooray biases!

This visit meant taking the day off of work. We drove three hours one way to see this man. And, again, he offered to see me as opposed to answering my question and despite the fact that I had shared I lived multiple hours away.

That day was on par with a visit I had with an old primary I had in 2012. I’d gone in with that was clearly an abscess. This doctor, full of hubris, told me the abscess was a pimple. He mocked my pain, laughed about me being overdramatic (in his eyes), and then told me to go home and take my biologic. I had to get basic medical care from my at-the-time rheumatology nurse practitioner. She took me seriously and got me patched up.

 

Moving Forward

I have my first appointment with the new rheumatologist in two weeks. More in line with how I usually am, I spent today preparing forms and writing up my medical history. I’ve already started the process of having to prepare for ruin and heartache, as I should’ve done in November. It’s so frustrating how much more BS we have to go through that the people on the outside don’t recognize.

I have to say, though… To have my partner with me and have witnessed that treatment Dr. A flung my way – to know I’m not gaslighting myself here? That alone has been priceless. As we talked about it today, my partner is coming with me to my rheumatology appointment as well.

I don’t think I’ve ever had someone in my life who has cared that much. It’s so nice to feel like I’m half of a team, instead of dealing with all of this on my own.

Grayson (right) and their partner (left)

Invisible Project Feature

Posted on by Grayson

invisible project feature

Last year, I was lucky enough to write up a piece for the Invisible Project, part of the US Pain Foundation. I had interviewed my former primary care doctor and three amazing people. I was really proud of that piece!

Naturally, when Invisible reached out to ask to do a feature on me this year, I jumped at the chance.

Click here to read it.

PS: Did you know you can get free copies of the Invisible Project magazine? I have a handful at my house, too, that I’d be happy to sign and send. Just ask!

COVID-19 Infection in a Toddler

Posted on by Grayson

Content note: death and autopsy of a toddler

covid-19 infection in a toddler

I recently found a journal article about COVID-19 infection that everyone needs to read. Published in August, it should have been on everyone’s minds as people decided the fate of children returning to school.

Ismael Gomes, Karina Karmirian, Júlia T. Oliveira, Carolina da S.G. Pedrosa, Mayara Abud Mendes, Fernando Colonna Rosman, Leila Chimelli, Stevens Rehen. SARS-CoV-2 infection of the central nervous system in a 14-month-old child: A case report of a complete autopsy. The Lancet Regional Health – Americas, Volume 2, 2021, 100046, ISSN 2667-193X, https://doi.org/10.1016/j.lana.2021.100046.

A 14-month old Black baby girl died due to COVID-19. Four months before her death, she fell ill. Doctors assumed she had viral meningitis. She was hospitalized multiple times between then and her death. By the time they suspected pneumonia, she was just on the cusp of becoming unstable. The child died within days.

 

Findings

For those of us who need the findings in plain language:

  • Microthrombosis – Thrombosis is when a blood clot forms in a blood vessel. Microthrombosis simply means that these blood clots are incredibly small. These were found in the child’s left ventricle (heart), thyroid, and kidneys.
  • Pulmonary Congestion – Excess fluid in the lungs, which often leads to a lack of oxygen in the blood.
  • Interstitial Oedema – Swelling within the lungs in the areas surrounding the air sacs in the lungs.
  • Lymphocytic Infiltrates – A non-cancerous or benign build-up of white blood cells. These were found in the child’s right ventricle (heart), the mucous bits within the throat, tongue, stomach, intestines, liver, and more.
  • Bronchiolar Injury – A complication connected to blunt trauma and injuries during intubation. Without proper treatment, this can lead to pneumonia and other life-threatening conditions.
  • Collapsed Aalveolar Spaces – A complete or partial collapsed lung. Some of these spaces were filled with collections of protein and inflammatory cells.
  • Cortical Atrophy – The loss of brain cells called neurons. Other conditions that can lead to this include stroke, dementia, seizures, a traumatic brain injury, Huntington’s disease, AIDS. “The brain weight (635 grams) was about 33% less than normal for age.”
  • Severe Neuronal Loss – The death of brain cells. This often occurs in those with conditions that are linked to brain and cardiovascular health.
  • Hemorrhagic Foci – A type of bleeding within the brain.
  • Spongiosis – Parts of the brain turn into sponge-like tissues. Her brain became sponge-like.
  • Gliosis – A process where your body creates new or very large glial cells (which support nerve cells). These cells can cause scars and lesions on the brain.
  • Macrophages – We know that one, right?
  • Diffuse white matter edema – Swelling in the white matter.
  • Neuronal Mineralization – Tissue within the brain turns into minerals.
  • Encephalopathy – Brain swelling.
  • Overproduction of cytokines, leading to systemic inflammation.
  • Other Issues Found
    • Laryngitis.
    • Infection in the salivary glands.
    • Fewer lymph-related cells in the tonsils, thymus, appendix, and lymph nodes.
    • Swelling and blood clots within the esophagus.
    • Stomach congestion, blood in the mucous, gastritis.
    • Steatosis, or fatty liver disease.
    • Necrosis or dying tissue in and around the pancreas.
    • Blood clots within the pelvic region.
    • The taste and smell center of the brain was not around due to softening.
    • A breakdown in the blood-Cerebral Spinal Fluid barrier.

I want to highlight that MIS-C – or Multisystem Inflammatory Syndrome in Children – is similar to both Kawasaki Syndrome and Macrophage Activation Syndrome. Many of these are symptoms that those of us familiar with those conditions are very aware of. And, again, this child’s brain began to turn into a literal sponge.

 

Please continue to wear your mask, especially if you’re at higher risk.

Reflections on A Wild Year

Posted on by Grayson

The past few years have been wild for all of us. The end of 2020 was difficult, hard, and frustrating. Because of that – and being so ridiculously busy at the time – I didn’t do my usual end-of-year post. With so much having changed for me this year, I wanted to make sure to do one this year.

reflections on a wild year

 

 

Wrapping Up 2020

November saw Arthur turn 27. I honestly don’t know that I would’ve ever thought I’d reach this point. The fact that I have is a testament to better education around SJIA and, of course, biologics. It’s interesting, though, as I know there is a whole new generation of aging juvenile arthritis patients. I think we’re going to see a whole new era of figuring out exactly what these conditions – and their treatments – do long-term.

At some point, I started to stream games on Twitch. I haven’t in a bit, but if you enjoy watching games, come follow! I hope to get back to it soon.

In December 2020, I had my lowest sed rate ever. After five and a half years on Kineret, I’m still surprised at how effective it is. Obviously, other things I do in life impact that number, too. I know that a lot of my lifestyle impact was less stress than I’d had in a while. It’s weird to say that when, a year later, we’re still in a pandemic… but it’s true. I had finished up a number of projects, but that’s not the only reasons for less stress.

Last September, I met someone on Taimi, a dating app specifically for LGBTQ+ folks. They lived in Ohio and I was in Wisconsin, so neither of us expected too much. As someone who hasn’t been great at long-distance relationships, though, I learned that having both people dedicated makes a huge difference. A month later, we were planning a weekend away together. After working in public health starting in April, I took multiple days off at the beginning of December to go meet my soulmate in the woods. We hiked and explored the city they’ve lived in for years. When it came time to come home, I hated every second of the 9-hour drive back.

 

2021

Towards the beginning of 2021, my friend Iris Zink released a book called Sex-Interrupted: Igniting Intimacy While Living With Illness or Disability. I wrote some of the appendices around LGBTQ+ folks. While I’m obviously biased, I adore this book so much.

January saw the CDC interviewing me and my colleagues around the work we were doing around type 2 diabetes prevention. On top of that, I got to join an amazing psychology collaborative focused on trans folks. I also got to give perhaps the most fun presentation ever for a Planned Parenthood conference.

Neurodiversity and sex for muggles - Grayson tapping a wand near a cup of soda; he is wearing a white button up shirt with a ravenclaw tie

Yes, I took a moment in the beginning to tell everyone JKR can kiss my trans ass.

Unfortunately, my partner’s father passed away shortly thereafter. I was able to take some time off work and go be with and meet the family during that time. While it was less than ideal, their mom really liked me. So did both of her dogs and my partner’s dogs.

Grayson is surrounded by four dogs on a bed and his hand can be seen petting one; his partner sits in a chair at a desk

In March, I got to edit one of Governor Evers’ proclamations. They didn’t keep all of my edits. That said, I pushed back on unnecessarily gendered language. Then, in June, Evers issued an Executive Order to require gender-neutral language.

I went to visit my partner for their birthday. We went to the Cincinnati Zoo, which meant I got to finally meet Fiona!

Grayson and Fiona the Hippo looking at each other

I also got my first COVID-19 vaccine.

In April, SheVibe turned me into a sex ed superhero. Like, you can literally get trading cards of me and a ton of my friends. Monica Lewinsky said I was super smart on Twitter. Oh! And I got my second Pfizer shot.

My birthday was actually the nicest one I’ve ever had. A ton of my friends hopped on a video call, meaning I got to introduce them all to each other. Some of us played virtual games, too. It was amazing.

May brought the 7th anniversary of the last day that I talked with my mother. Cutting contact with her was the scariest thing I’ve ever done… but it was also the most rewarding.

Also, I got probably the best haircut.

Gray sticks his tongue out; he has a fade and a short haircut with a small Prince-like swoop on one side

June brought me an official ADHD diagnosis and access to medication. It’s made managing my ADHD so much better. Fun fact: ADHD often gets worse for folks going through menopause and through puberty. When someone is transitioning and taking testosterone, they go through both at the same time.

It was an interesting year before the meds, but it made for good times in presenting on disability in the workspace for Thomas Jefferson University.

Picture of Gray, McGravin, and Hank and Dean with the doggos looking mostly at the camera

I also got to go with my partner, their mom, and their aunt up to upstate New York. I met the extended family, hiked up a mountain, and even kayaked for the first time!

Grayson sitting in a two-person kayak on the shore

Over the spring and summer, I began to play Dungeons and Dragons with friends as a part of an initiative from the Global Healthy Living Foundation. The Dungeons and Diagnoses podcast was a ridiculous amount of fun.

Also, despite never being someone who drew a lot, D&D helped me get a lot better at that. I tried to draw every time we played. Here’s a non-D&D drawing I did that wasn’t horrible:

drawing of a red panda

Earlier in the year, my partner adopted a red panda for me at the Columbus Zoo. We’d gone to see the pandas back in January, too, so it was extra special.

I went hiking a bunch in Madison over the summer, catching cool photos like this one.

Lone monarch butterfly on some purple ish flowers

In July, I had masculinizing top surgery. It almost killed me. Still, it was one of the best decisions I’ve ever made. Part of me knew I’d be okay in the end, because the date I was offered was Laura’s birthday.

Recovery sucked but I won a contest and got some goodies from one of my favorite Star Trek peeps.

By the time August rolled around, I had all of my things packed and moved to Ohio.

Hank lifting his face in front of Grav with Dean's face visible in the background

Needless to say, Hank and Dean were both ecstatic.

By the time Halloween rolled around, we were moving into our own house. I cannot believe this is my bathroom:

A claw foot tub by windows with sheer white curtains

In November, I got my COVID booster shot. I wrote up what it’s been like to be on testosterone for the last 21 months.

I also left my job in public health. As much as I loved it, there was a lot of stress involved due to issues outside of my team. I needed something that would give me more joy, fewer frazzled days, and lead to a little more calm in my life.

I recently started with a company called Included Health, where I work as a Care Coordinator for other LGBTQ+ folks.

 

Things I Did Throughout The Year

Top Surgery Almost Killed Me

Posted on by Grayson

Content note: surgery, death

top surgery almost killed me (and I wouldn't change a thing) - photo of a mast cell releasing histamine

If you follow my personal Twitter account, you know that I had masculinizing top surgery on July 6, 2021. While I’ve shared a good amount there about my journey, I have wanted to write up a more detailed post about this for a while. Mortality isn’t something that I have handled super well historically, though, so it’s taken longer for me to get here than I’d hoped.

Read more on Chronic Sex

2021 Care Rationing Survey

Posted on by Grayson

2021 Care Rationing Survey - #NoBodyIsDispoable Fat Legal Advocacy, Rights, & Education Project - Have you struggled with or delayed getting medical care during the pandemic? Are you a provider concerned about care rationing at your organization? Please take this survey.

The #NoBodyIsDisposable Coalition and the Fat Legal Advocacy, Rights, & Education Project have created a short survey to hear from people who are being denied medical care because of limited medical resources. Responses will be used to help advocate for fair medical treatment.

This survey was created to help gather the stories of folks who are having trouble getting medical care during COVID. Stories will be shared to create awareness and support advocacy. (Respondents can choose whether or not to share anonymously.)

Who should take the survey?

Please take the survey if you or someone you know had a hard time getting medical treatment during COVID due to limited medical personnel and supplies/equipment shortages and you suspect part or all of the reason you did not receive necessary care was based on discrimination including but not limited to your weight, disability, race, age, or other factors.

Take the survey if you have been delaying necessary medical care because you worry if you do get COVID that you will be deprioritized for life-saving medical treatment based on your weight, disability, race, age, or other factors.

Take the survey if you work at a health care organization and have concerns about the care rationing policy, or how it is implemented.

Link to the Survey

The survey is available in English and Spanish.

Please help spread the word. They will be reviewing answers on an ongoing basis.