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

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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.

Study: Mental Health Professional Shortage Areas

Posted on by Grayson

Did you know that 34% of Americans live in areas with a shortage of mental health providers?

One group is looking to study this in a project titled Understanding Pathways to Care For Individuals in Mental Health Professional Shortage Areas, with Investigators Dr. Munmun De Choudhury and Dr. Neha Kumar. This project is a joint research initiative between the SocWeb and TanDeM Labs at the Georgia Institute of Technology, along with various partners and stakeholders from community-based mental health advocacy organizations.

What Am I Being Asked To Do?
You are being asked to be a volunteer in a research study. This page will give you key information to help you decide if you would like to participate.  Your participation is voluntary. As you read, please feel free to ask any questions you may have about the research.

What Is This Study About and What Procedures Will You be Asked to Follow?
The purpose of this study is to better understand how people find access to mental healthcare. You will be asked survey questions about yourself, as well as the different resources you use to feel better when you are not feeling well.

If you decide to be in this study, you will be asked survey questions about where you live and how you have sought support for mental health concerns. You will not be compensated for participation in this study

Are There Any Risks or Discomforts you Might Experience by Being in this Study?
Survey questions deal with your mental health background and may touch on topics you do not want to discuss. You are not required to answer any questions and choose to not answer and move to a different question or choose to stop participating in the study at any time.

What Are the Reasons You Might Want to Volunteer For This Study?
You are not likely to benefit in any way from joining this study. However, your participation in this study may assist researchers in understanding how people in resource-limited areas find access to mental healthcare.

Study link

Questions about the Study
If you have any questions about the study, please reach out to Sachin Pendse.

ACR Applauds Bipartisan Letter Urging Congressional Action to Avoid Looming “Medicare Cliff”

Posted on by Grayson

The following is a press release from the ACR that came out today.

The American College of Rheumatology (ACR) applauds the 247 Members of Congress who signed a letter urging Congressional leadership to address several cuts that would reduce Medicare reimbursements for health care providers by nearly 10 percent starting Jan. 1, 2022. These cuts would severely impact rheumatology practices already straining to recover from the COVID-19 pandemic, potentially jeopardizing patient access to care.

“The ACR thanks Reps. Bera and Bucshon, and all the other members of Congress who are calling on Congressional leadership to address the looming ‘Medicare cliff,’” said David Karp, MD, PhD, president of the ACR. “Extending physician payment adjustments for an additional year will help maintain providers’ operational stability that is still affected by the pandemic and ensure people living with rheumatic diseases do not see their care disrupted.”

Spearheaded by Representatives Ami Bera (D-CA) and Larry Bucshon (R-IN), the letter calls on Congress to addresses the imminent payment cuts stemming from an expiring adjustment to the Medicare Physician Fee Schedule (PFS) as well as the Medicare sequester and the Statutory Pay-As-You-Go (PAYGO) Act that cumulatively would cut reimbursements by a total of 9.75 percent next year.

The letter also calls for a future effort to establish broader, long-term reforms to ensure stability within the Medicare payment system as well as adequately incentivize high-quality care. Noting that the Physician Fee Schedule has failed to keep up with inflation over the years, the lawmakers argue that cuts to specialty providers could seriously jeopardize the stability of America’s health care delivery system at a time when so many providers are still only beginning to recover from the disruption caused by COVID-19.

Background on the “Medicare Cliff”

The looming payment cuts, which have been colloquially referred to as the “Medicare Cliff” stem from a confluence of three separate provisions that are all set to be implemented at the same time.

At the end of 2020, Congress attempted to mitigate the financial impact of the pandemic on health care providers by including a one-time 3.75 percent payment increases for all PFS services in the Consolidated Appropriations Act of 2021. This payment adjustment afforded some short-term stability for health care professionals struggling with the impact of the COVID-19 pandemic but is expiring at the end of the calendar year while providers still struggle with COVID’s impact.

At the same time, providers are also facing a 2 percent cut due to the expiring moratorium on the Medicare sequester. The sequester – which automatically cuts Medicare spending across-the-board – has been in place since 2013 but has almost always been suspended by Congress. The current suspension expires at the end of this year.

Finally, providers are facing an additional 4 percent payment cut due to the Pay-As-You-Go (PAYGO) budget rule, which requires mandatory spending increases to be offset by tax increases or cuts to other areas of mandatory spending. Because the American Rescue Plan that Congress passed earlier this year did not include such an offset, the PAYGO rule will be triggered unless Congress decides to waive it.

View the letter here.