a red-filtered hand in pain with text next to it: "Unifying SJIA and Still’s disease"

Unifying SJIA and Still’s disease

Posted on by Grayson

EULAR and PReS have published a journal article detailing “the diagnosis and management of Still’s disease, comprising systemic juvenile idiopathic arthritis and adult-onset Still’s disease.”

This combination will help to solidify that SJIA and AOSD are the same disease. It will also help clarify what treatment should look like, for those who have decent access to healthcare. The author issue 14 recommendations, with 3 on diagnosis, 2 on treatment timing, 3 on treatment options, and the rest focused on complications and issues to watch out for.

Check out the Medical Xpress article that goes into a high-level look at the article. You can also check out the full open-access article itself.

DeepCure’s AI Platform Creates Novel Brd4 Inhibitor

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The following is an excerpt of an article on Drug Discovery Trends, dated 9/9/2024:

The company’s first AI-generated drug candidate, DC-9476, a selective Brd4 BD2 inhibitor, embodies this approach, showing promise in preclinical models of autoimmune diseases like rheumatoid arthritis (RA) and Still’s disease. In RA models, DC-9476 demonstrated superior efficacy compared to standard treatments, including TNF-alpha inhibitors, IL-6 inhibitors, and the JAK inhibitor tofacitinib. DeepCure recently announced a collaboration with the Leeds Institute of Rheumatic and Musculoskeletal Medicine (LIRMM) to test DC-9476 in RA.

Read the full article here

ACR Encourages Patients to Implement Self-Management Strategies #RDAM

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The following is a press release from ACR dated September 9, 2024:

The ACR Encourages Patients with Rheumatic Diseases to Implement Self-Management Strategies to Improve Quality of Life

American College of Rheumatology (ACR) experts identified research suggesting that patient self-management is not as prevalent as it should or could be despite the improvements patients experience when implemented. This is due, in part, to many patients lacking awareness and motivation to self-manage and thinking the only way to control their disease is by taking their medication.

Today, the ACR launched its patient education campaign, Self-Management for Patients Living with Rheumatic Conditions for Rheumatic Disease Awareness Month (RDAM). The campaign addresses the current knowledge gap, educates patients about self-management techniques, and encourages them to collaborate actively with their rheumatology healthcare team to manage their rheumatic condition.

The campaign does not delve into self-care practices yet focuses on self-management strategies for managing a patient’s rheumatic condition.

“One thing that is important to note is that self-management is often used interchangeably with self-care, but they are different. Self-management is an individual’s day-to-day management of their chronic conditions over the course of an illness,” says Bhakti Shah, MD, a rheumatologist with Crystal Run Healthcare in Middletown, N.Y., and the campaign’s medical spokesperson. “Self-care consists of those tasks performed by healthy people to prevent illness rather than manage an existing illness.”

The campaign highlights five overarching strategies patients can incorporate in their lives. They are:

  • Stress Management –Rheumatic conditions can impact a person’s physical and mental health. Patients can create relaxation practices like meditation, self-reflection, or journaling.
  • Medication Adherence –Patients should partner with a clinician to understand their medications, what aspects of their disease they treat, and the importance of continuing these medications.
  • Lifestyle Changes –Regular exercise and eating a healthy diet are essential for general well-being and may help improve symptoms.
  • Communicate and Collaborate with a Healthcare Team –Patients should maintain open communication with their rheumatology healthcare team, including the rheumatologist, physical therapist, and other specialists.
  • Maintain a Support System—Patients should ask family or friends for help when needed, especially during a flare.

“Each patient encounter is an opportunity for rheumatologists (and rheumatology health professionals) to remind patients to incorporate self-management techniques in their lives. During my patient visits, I try to review topics such as medication adherence, physical activity and quality of life and I remind them that we are a team and collaboration will lead to improved outcomes for them,” Dr. Shah continues. “We hope this campaign will empower patients to take a more proactive role in their treatment journey.”

Rheumatic Disease Awareness Month is recognized each September, drawing attention to more than 100 conditions under the umbrella of rheumatic diseases. Rheumatoid arthritis, osteoarthritis, and lupus are some of the most commonly known. Others include Sjögren’s syndrome, gout, scleroderma, and psoriatic arthritis. More than 53.2 million American adults—one in four—have been diagnosed with rheumatic disease.

To view the full self-management toolkit, visit www.RDAM.org.

I caught COVID (and it's still horrible)

I Caught COVID (and it’s still horrible)

Posted on by Grayson

At the beginning of this month, my partner and I attended a super-spreader event — GenCon. We masked the entire time, unless we were eating. But, those one-way protections were still not enough to save us.

On the evening of Saturday the 3rd, while still there, my partner tested positive for COVID after only having minor runny nose symptoms and a tickle in their throat.

We drove home overnight. On Sunday, we got them to urgent care for a script of Paxlovid.

Knowing that my positive test would come within days, I spent some of my energy Monday to wrangle a Paxlovid script for myself, which I started on the 6th. It was a good thing, too, as my symptoms really hit hard on the morning of the 6th.

I woke up with a gunky throat, small cough, and some intense chills.

My Paxlovid tips: Take Paxlovid with some food already in your stomach. Follow it up with a lot of water and some more food. These things will help limit the horrid taste that will otherwise float up your throat and into your mouth… and make you want to vomit.

The bulk of my infection was relatively normal. I napped here and there. I had some nasty heartburn.

After sleeping 18/24 hours Saturday and finishing my Paxlovid Sunday, I was finally feeling better — not 100%, but probably 75-80% physically and 90% mentally.

I was very grateful my illness hit a couple days following my partner’s, and that their mom watched the dogs for a few extra days.

By Monday the 12th, I was asymptomatic and testing negative. I still rested a lot over the week, as to not tempt the long COVID deities.

On Thursday evening, I was supposed to fly out to Atlanta to attend the National LGBTQ Health Conference. I woke up that morning with a runny nose, which I had attributed to missing a dose of allergy medication the night before.

But, after hearing about someone else dealing with possible COVID symptoms, I took a home test… which was heavily positive. That line was THICK. A second home test showed positive, too. After a few minutes of crying, I headed over to urgent care for a confirmation PCR test. 

And, of course, I’m in the 20% of people who get rebound COVID.

I canceled my travel plans.

Folks at urgent care were really delightful, and I had wonderful interactions with everyone there. We decided against another round of Paxlovid, mostly because there isn’t much evidence to prove that it’s helpful. The real trick is to just treat and monitor symptoms.

I spent a little over an hour canceling my travel plans and preparing for another several days of isolation.

By the evening, my left eye was leaking sinus fluid along with my left nostril. My left eye was also beginning to swell.

Halfway through the day on Friday, I began to itch all over. By the evening, I figured this was a COVID-related rash, as that’s not uncommon in rebound infections especially. It was bad enough that I had to take dye-free Benadryl to help. My partner drew me a nice, warm bath to relax in for a while, too.

When I woke up at 3:45 am, my Benadryl had worn off… and my whole body was swollen and covered in rash. And that was after two regular antihistamines, adding in another allergy med, dye-free Benadryl, and using my Benadryl anti-itch spray.

My left eye was horribly worse, too.

Grayson with a swollen left eye

After lying awake on my couch for half an hour waiting for another Benadryl to kick in, I began to really grapple with the idea that this rebound COVID infection had sent me into a full-on Still’s Disease flare-up.

Knowing that COVID can cause cytokine storms — and that’s essentially what Macrophage Activation Syndrome is — I had to get medical attention.

I wasn’t bad enough to feel like an ER trip was warranted. So, I set up an urgent care appointment Saturday at 10:30 am. And, I’m glad I did. My rash and swelling continued to progress through the early morning hours. My skin felt bruised because of the inflammation, and my left eye was so swollen that I could not easily find my occipital bone.

For the first time, someone at urgent care KNEW Still’s, and agreed that I needed a prednisone burst. He even asked what dosage I usually start at.

As a rare disease patient, I’m so used to being dismissed or having to completely explain my condition(s) to providers. The fact that I didn’t have to do that felt revolutionary. My Quality of Life went from 4 to 8 over the course of a few hours.

And, honestly? I wanted to cry.

Within just an hour of starting prednisone, my eye got less puffy and I was generally less swollen. My fingers, hands, and wrists were still swollen, but much less so. And, most importantly, I was no longer covered in rash (although I still had a few spots).

When I woke up Sunday, after a full night’s sleep, I was covered in rash again. Thankfully, it was nowhere near as bad as the day before. It easily dissipated after I waited for steroids to kick in. Unfortunately, I developed more congestion symptoms again, including some throat gunk.

With it now being Monday, I’ve begun to cough up more phlegm. This is, in part, because I’ve started to take Mucinex. This mucus is far too thick to cough up without help, at least for me. My Still’s rash is still present, although it continues to fade more a few hours after taking my prednisone burst.

I’ll continue to update here with my experience over the next few days and weeks as necessary.

 

Early September Update

I continued to test positive for COVID until August 25. The last few days were very heavily taxing on my mental health.

My dysautonomia symptoms have drastically returned, too. Not that they were really gone, but they were relatively rare. Now, we’re back to nearly daily incidences of symptoms.

My Still’s Disease is also more active. I’ve had more occurrences of rash, especially following showers.

 

What’s worked well

Your mileage may vary, but this is what has been helpful for me:

  • Having a caring partner, ready and willing to help with literally anything and everything
  • Seeking medical help quickly when needed and being prepared to advocate for myself as needed
  • Mucinex
  • Dye-free Benadryl and anti-itch Benadryl spray
  • Extra anti-histamines (for me, this has meant adding loratadine and the above mentioned Benadryl to my already-daily cetirizine and famotidine)
  • Sitting on a plush blanket to not further anger rash-covered body parts
  • Making sure I eat a little bit every couple of hours, regardless of how hungry I may be
  • Resting in a warm bath
  • Our dogs, who have spent time kissing where my rash has been and cuddling me to help me feel better

Dean sitting on the couch Hank snuggled up by my side

Regardless of whether or not you’ve had COVID yet, please mask. Continue to take other precautions as well, including not meeting in groups even outdoors without masks, washing hands and sanitizing them often, switching out KN95 masks for new ones regularly (at least daily if possible), and possibly using CPC mouthwash and nasal sprays.

Infection numbers are horrible right now and have been for a few weeks.

A map of the United States color-coded in shades of maroon, orange and gray displaying SARS-CoV-2 Wastewater Viral Activity level as of August 1, 2024, where deeper tones correlate to higher viral activity and gray indicates “Insufficient,” or “No Data.” Text above the map reads “Very High” or “High” levels in 44 states. Viral activity is “Moderate” in 4 states, “Low” in 2 states, and data is unavailable for North Dakota, Guam, Puerto Rico, and the U.S. Virgin Islands. At the bottom, text reads People’s CDC. Source: CDC.

People aren’t even testing, thinking they only have allergies or colds. Even for the most healthy person, this is dangerous — but incredibly more so for those of us with underlying health issues.

ACR Responds to Congressional Hearing on Private Practice Challenges

Posted on by Grayson

The following is a press release from ACR dated June 24, 2024:

The American College of Rheumatology (ACR) has submitted to the United States House Committee on Ways and Means Health Subcommittee a response to the recent subcommittee hearing, The Collapse of Private Practice: Examining the Challenges Facing Independent Medicine, highlighting issues facing private practices, including inadequate reimbursement for Medicare physicians, burdensome prior authorization policies, and the growing shortage of physicians in the workforce.

In its letter, ACR notes that rising inflation, cuts to reimbursements to below the cost of treating Medicare patients and growing operating costs threaten the viability of private practices. To address these concerns, ACR advocates for legislation to address two persistent challenges impacting Medicare payment to physicians: inflation and a mandatory budget-neutrality requirement. The Strengthening Medicare for Patients and Providers Act (H.R. 2474) would add a permanent annual inflationary update for Medicare physician payments, while the Provider Reimbursement Stability Act (H.R 6371) would help to curtail the negative impact of budget neutrality requirements by raising the current budget neutrality threshold from $20 million to $53 million and requiring its regular re-evaluation.

Given the administrative burden created by costly prior authorization policies, ACR noted its support for efforts to streamline the process so that healthcare team members can spend less time negotiating with insurance companies and more time taking care of patients.

Finally, the shrinking physician workforce creates significant challenges across the healthcare continuum. Unless policymakers intervene, the problem will continue to worsen as fewer physicians are asked to meet the treatment needs of a growing and aging patient population. To address this issue, ACR recommends policies to increase training opportunities, address burnout and early retirement in the healthcare workforce, mitigate the impact of medical education debt, and expand workforce access for visa-holding physicians.

“Private practices are essential to our communities and should be supported by policy,” the letter concludes. “The ACR looks forward to partnering with the Ways & Means Health subcommittee as legislative solutions are considered.”

ACR’s full response letter is available here.

ACR Applauds Re-introduction of Legislation to Reform PA Policies

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The following is a press release issued by ACR and dated June 12, 2024:

The American College of Rheumatology (ACR), representing more than 9,100 rheumatologists and rheumatology professionals, applauds the reintroduction of the bipartisan, bicameral Improving Seniors Timely Access to Care Act by U.S. Senators Sherrod Brown (OH), Roger Marshall (KS), Kyrsten Sinema (AZ), and John Thune (SD) as well as Congressmen Ami Bera (CA-6), Larry Bucshon (IN-8), Suzan DelBene (WA-1), and Mike Kelly (PA-16).

“The prior authorization process has become unmanageable for both doctors and patients. Insurer red tape imposes a significant burden on clinicians, leading to unnecessary and unclear delays, or even outright denials of patient care,” shared Dr. Deborah Dyett Desir, president of the ACR. She also praised the legislative efforts to address these issues: “We applaud lawmakers’ leadership in pushing legislation that streamlines the prior authorization process. This bill enhances transparency and urges insurers to adopt evidence-based medical guidelines in their prior authorization decisions.”

The new bill is based on legislation that unanimously passed the U.S. House of Representatives and garnered over 50 Senate co-sponsors in the last Congress. The Improving Seniors Timely Access to Care Act of 2024 includes changes to reflect policies implemented by CMS since the last attempt at passage, which have the benefit of reducing the legislation’s Congressional Budget Office (CBO) score – the stumbling block for the Senate in the 117th.

Payers use prior authorization to limit or control access to specific medical treatments and services, often defaulting to denial of treatments that are ultimately approved in over 95% of cases. Since the requirements for prior authorization are not uniform, the process frequently involves hours of paperwork and administrative strain for physicians and healthcare professionals, often preventing patients from promptly accessing their best treatment options.

“ACR stands united with hundreds of physicians, patients, hospitals, and other key stakeholders in endorsing this bill,” Dr. Desir stated. “This legislation represents a crucial initial step toward alleviating the burdensome prior authorization process. We strongly urge Congress to act swiftly and pass this bill,” she concluded.

Rheumatologists Advocate for Payer Transparency, Health Equity, and Financial Relief for MA Beneficiaries in RFI Response

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The following is a press release issued by ACR dated June 3, 2024:

The American College of Rheumatology (ACR) has submitted its response to the Centers for Medicare & Medicaid Services (CMS) request for information (RFI) and feedback from stakeholders on how best to enhance Medicare Advantage (MA) data capabilities and increase public transparency.

“Given more than half of Medicare beneficiaries are now choosing Medicare Advantage plans, we applaud CMS for more closely examining this program and, in particular, its impact on those living with complex chronic and acute conditions—including many rheumatic diseases that require specialized expertise and care,” said Dr. Christina Downey, chair of ACR’s Government Affairs Committee. “More reporting and greater transparency around prior authorization processes, care quality, health equity, MA market competition, and prescription drug plans can inform CMS’ decision to implement policies that improve the system for physicians and the healthcare experience for patients.”

ACR notes in its response letter that, “for too long, prior authorization policies by MA-managed care plans have been burdensome and time-consuming and have delayed care for beneficiaries.” To begin addressing this issue, the ACR requests that CMS make publicly available certain metrics on prior authorization, including requests, denials, response rates, reasons for denials, and frequency of denials categorized by type of service. ACR also joined a similar request letter from the Regulatory Relief Coalition asking CMS to implement policies that remove prior authorization barriers to timely care.

ACR also asks CMS to collect and report metrics that would help to better evaluate care quality and outcomes, including value-based care arrangements and efforts to meet health equity goals. This reporting should evaluate potential care disparities faced by MA beneficiaries of color by looking at the prevalence of certain diseases, enrollment in low-rated plans, access to 5-star plans, care outcomes, and average annual premiums. Additional reporting on the percentage of MA beneficiaries under 65 would help paint a clearer picture of how plan design and features impact various populations.

Additionally, given the growth of MA plans, ACR requests that policies support a truly competitive healthcare market. Concerns about consolidation and its impact on quality-of-care prompted ACR to request CMS evaluate bidding figures from each MA plan on an annual basis juxtaposed to the Herfindahl-Hirschman Index score of the markets in which each MA plan operates. Both pre- and post-merger analyses should look at the changes in average annual premiums by the state of residence, plan type, calendar year, and the number of rheumatologists each MA beneficiary has in-network. Consolidation has driven many independent rheumatologists out of practice and limited beneficiaries’ access to care, particularly in underserved communities challenged with accessing a local rheumatologist.

Finally, ACR asks that CMS look specifically at MA prescription drug plans to evaluate their quarterly listings of medications MA beneficiaries have access to and the percentage of MA beneficiaries who reach their out-of-pocket limits every year. Policies that limit choice or increase the cost burden for patients often lead patients to ration their doses or even abandon treatment altogether; in fact, according to recent research, 70% of new patients opt out of filling their prescriptions due to cost. Instead, ACR strongly supports patients having access to the right treatment and any necessary reference products at the right time.

“As the agency begins to explore changes and improvements to MA, ACR stands by as a resource to help ensure that enrollees with rheumatic diseases have better access to the quality care they deserve,” concluded Dr. Downey.

ACR Launches a New, Virtual Resource to Support PCPs

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The following is a press release from ACR dated May 28, 2024:

The American College of Rheumatology recently launched Rheumatology for Primary Care, a new resource for primary care physicians (PCP) and advanced practice providers (APP) offering them expanded support and guidance to identify rheumatic diseases in their patients. As the healthcare professionals who often are the first to encounter patients experiencing symptoms consistent with autoimmune conditions like rheumatoid arthritis, gout, and lupus, the ACR hopes to supplement the decreasing rheumatology workforce with the support of PCPs and APPs.

Rheumatology for Primary Care is the latest initiative from the College that provides primary care professionals with tools for patient medical workups, early treatments, medications, referrals to a rheumatology specialist, and more. It is a quick reference tool for PCPs to use when caring for patients before or between their visits to a rheumatologist. The resource includes information about:

  • Symptoms of rheumatic conditions such as fever, rashes, or joint pain and associated medical workups for each
  • The various disease types with images and descriptions
  • Case studies
  • Labs to consider and when to order them
  • Common rheumatology medications and treatment considerations

“By creating this resource for our primary care colleagues, we can help reinforce rheumatology skills amid a pending workforce shortage and most importantly, meet patients’ needs,” said Beth Jonas, MD, member of the ACR Workforce Solutions Committee and past chair of the ACR’s Committee on Training. “We want rheumatologists to have the support they need at a time when physician availability and patient access can be challenging.”

It is expected that 67M American adults and more than 300K children will have a doctor-diagnosed rheumatic condition over the next several years.

“Many patients with rheumatic symptoms spend months, even years, waiting for an appropriate diagnosis for treatment. The more knowledgeable a primary care physician or APP is regarding appropriate referrals for rheumatic diseases, the faster patients can receive proper diagnosis and better care. Creating this tool was a prudent decision by the ACR and is a sensible next step in working collaboratively with our primary care colleagues,” Jonas concluded.

For more information, visit rheumforprimarycare.org.

Uveitis Patients Who Are Male, Black, and on Medicaid Have Worse Outcomes

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From more than 65 million patient records, researchers identified 1,346 children (median age at diagnosis, 11 years; 72.7% girls; 71.92% white; 5.5% Black) who were diagnosed with JIA-associated uveitis, most of whom had commercial insurance coverage (53.4%) or Medicaid (25.2%).

After adjusting for race and insurance, researchers reported that risk for blindness was higher among boys (HR = 2.15), and when adjusting for sex and insurance, the risk for 20/200 or worse vision was 2.5-fold higher among Black or African American patients (HR = 2.54). Among patients with Medicaid insurance, the risk for blindness was more than double, after adjusting for sex and race (HR = 2.23).

Read more

ACR Cheers Funding for Rheumatology Research, Workforce Relief Inclusion

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The following is a press release issued by ACR on March 25, 2024:

The American College of Rheumatology (ACR) today expressed strong support for several key measures included in the Fiscal Year (FY) 2024 budget. The budget allocates crucial funding to the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) for research on arthritis risks, outcomes, and treatments among service members; secures a significant funding increase for the National Institutes of Health (NIH), the cornerstone of medical research in the United States; and extends the Conrad 30 program. This program allows foreign-trained physicians to seamlessly enter the United States healthcare workforce after residency completion.

“The ACR applauds Congress for including provisions in the budget that prioritize the future of rheumatology. This budget recognizes the critical need for both a stronger physician workforce and continued research funding for arthritis and rheumatic diseases, ultimately benefiting millions of patients,” said Deborah Dyett Desir, MD, president of the ACR.

The Further Consolidated Appropriations Act of 2024 delivers a win for veterans and active-duty service members. The act allocates $10 million in the CDMRP for needed arthritis-related research among those who serve our nation. This targeted funding is crucial considering the alarming statistic that one in three veterans is battling arthritis, making it the second leading cause of medical discharge from the Army. By supporting research in this area, the CDMRP benefits veterans and service members and contributes to a broader understanding of rheumatic diseases.

This package also secures a notable funding boost for the NIH, reversing earlier proposals for deep cuts. Importantly, it protects funding for the National Institute of Allergy and Infectious Diseases (NIAID), which plays an important role in ongoing public health battles. This robust NIH funding ensures continued progress in critical medical research, including advancements in treatments and prevention strategies for rheumatic diseases.

The final spending bill also includes an extension of the Conrad 30 program, which allows U.S.-educated and trained physicians with a J-1 visa to enter the American medical workforce upon the completion of their residency. This delivers a much-needed boost to the American medical workforce given the current physician shortage. Typically, J-1 visa-holders training in the U.S. must return to their home country for two years after their program ends before they can apply for a work visa or green card to work in America. Each Conrad 30 waiver translates directly to a physician serving patients in underserved communities, for at least three years, who might otherwise face limited access to care.

“This budget represents a major victory for the 53.2 million Americans living with physician-diagnosed rheumatic conditions,” said Desir. “Including these vital programs promises to unlock significant patient care and research advancements in the coming years. We eagerly await the positive impact this will have on millions of lives.”