Recap of #ACR20 Day One

Posted on by Grayson

I’m attending the virtual American College of Rheumatology Convergence conference. This post covers the opening sessions for Thursday, November 5th.

Dr. Eric Rubin, MD, Ph.D., talked about COIVD-19 vaccines.

  • Mechanism of immune response might tell us why some immunosuppressed people are at high risk and others aren’t.
  • Safe vaccine for us.
  • Could possibly trigger or suppress pre-existing autoimmunity. This is hard to predict, esp w/ multiple vaccines.
  • Monoclonal antibody therapy is difficult.
    • You have to administer before the patient develops their own antibodies. If they’ve reached that point, there is little if any benefit. It’s not really a sustainable procedure but might be good for high-risk patients if caught early on.
  • Remdesvir can shorten infection length but doesn’t necessarily improve survivability.
  • An immune response from a vaccine is different than those from infection. Population-based studies show little decline in immunity over time while smaller studies are showing some decline. The problem is we don’t know the ideal antibody level to protect someone from infection/re-infection.

Dr. Jinoos Yazdany, MD, MPH, covered the year in review. Perhaps my favorite thing was that hydroxycholoroquine has been definitively shown to not help with COVID-19 at all, even at higher doses. Dr. Yazdany also shared that there is mounting observational evidence that patients who are on over 10 mg of steroids have a higher COVID-19 infection rate.

Dr. Richard Bucala also went through some pivotal research for the following:

1. bit.ly/38arTjI

2. go.nature.com/3oZvM0M

3. go.nature.com/3p0YnTv

4. go.nature.com/32hsHQ9

5. go.nature.com/38fLfUH

6. bit.ly/3l15JUI

That wraps up a small synopsis of today’s session. The conference truly kicks off tomorrow. Feel free to follow me on Twitter where I’ll be sharing my thoughts using the ACR hashtag #ACR20.

Eleven Provider and Patient Organizations Join ACR to Oppose UnitedHealthcare Copay Accumulator Initiative

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Below is a press release on a joint letter the American College of Rheumatology recently sent to UnitedHealthcare urging them to reconsider moving forward with a copay accumulator initiative that would increase out-of-pocket costs with patients for rheumatic diseases.

Eleven provider and patient organizations have joined the American College of Rheumatology (ACR) to petition UnitedHealthcare (UHC) to cancel plans to implement a proposed copay accumulator initiative that would require physicians to share details about their patients’ usage of copay assistance programs. The initiative would prevent funds from assistance programs from being applied towards patients’ annual deductible and out-of-pocket maximums. The groups warn that this would jeopardize patient access to medically necessary therapies by increasing the financial burden of care and lead to an increase in treatment abandonment.

“Rheumatologists treat many patients with chronic conditions like rheumatoid arthritis and lupus that sometimes require using complex biologics to avoid debilitating pain, disability or life-threating complications,” said Chris Phillips, MD, Chair of the ACR’s Insurance Subcommittee. “Unfortunately, biologics are expensive, and for the past few years, insurers have been moving them into ‘specialty tiers’ that require patients to pay a percentage of the actual cost of the drugs. Copay assistance programs thereby preserve patient access to otherwise unaffordable drugs when out-of-pocket expenses are high. The dramatic increase in out-of-pocket expenses will put these treatments out of reach for many patients, potentially leading to disease flares, expensive surgeries, permanent disability, and higher overall health care costs.”

With the annual price of biologic therapies ranging from $22,000 to $44,000, patients who are prescribed biologics on specialty tiers must pay hundreds or thousands of dollars in copayments each month or go without treatment due to prohibitive costs. If copay assistance funds are no longer counted towards deductible and out-of-pocket maximum requirements, patients will have to pay these additional costs. This is particularly concerning for rheumatology patients, because the medications they require are often single-source therapies with no equivalent generic product or therapeutic alternative that is cheaper.

One recent study found that more than one in four specialty brand prescriptions are abandoned during the deductible phase, which is three times higher than the abandonment rate when there is no deductible. These concerns have already led at least four states to prohibit accumulators in individual and small group health plans. The groups also feel that asking physicians to report on the amount their patients receive in copay assistance will put them in an ethically objectionable position.

“Reporting this information knowing that it would likely price a therapy out of reach for a patient who needs it to avoid flares and further disease progression is counter to our oath to first do no harm,” said Phillips. “It would also strain the doctor-patient relationship and would be unethical under AMA guidelines. No one living with a chronic disease should have to choose between their physical and financial health.”

A copy of the group letter to UHC is available here.

ACR Responds to CY2021 Medicare Physician Fee Schedule

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The following is a press release from ACR today:

In comments submitted to the Centers for Medicare and Medicaid Services (CMS), the American College of Rheumatology (ACR) applauded the agency for continuing to recognize the value of rheumatology, and other cognitive care specialties, by affirming changes to Evaluation and Management (E/M) reimbursement to better reflect the work and expertise needed to treat complex patient populations. In addition, the ACR commended CMS for permanently expanding certain telehealth provisions and establishing a single complexity add-on code.

“At a time when specialty providers are facing unprecedented challenges and resource constraints as a result of the COVID-19 pandemic, we appreciate CMS’ continued efforts to implement policies and reforms that will help the rheumatology community navigate these challenges and continue to provide quality care for patients with complex conditions,” said Ellen Gravallese, MD, President of the ACR. “The agency’s continued recognition of the value of E/M services– which have been historically undervalued by Medicare – is a win for the millions of Medicare beneficiaries living with a rheumatic disease and will ensure they can continue to receive the specialty care they need to manage their disease.”

Noting that the COVID-19 public health emergency has precipitated a rapid adoption of telehealth services by many specialties – and that such changes will eventually call for more permanent regulatory flexibility – the ACR expressed concern that current coding, coverage, and payment rates for audio-only telephone E/M services will not continue after the public health emergency is rescinded. The ACR also urged CMS to improve coding and billing guidelines to reflect the administrative complexity of delivering care via telehealth and encouraged the agency to allow direct supervision to be provided to members of the care team using real-time, interactive audio/video and audio-only technology in order to maximize the amount of time focused on delivering patient care. In addition, the ACR expressed support for the extension of telehealth reimbursement for physical and occupational therapy and welcomes the opportunity to work with CMS to demonstrate how telehealth can be effectively used to provide the quality of care necessary for patients living with musculoskeletal and rheumatic diseases.

Lastly, the ACR expressed strong support for the adoption of GPCX1, the single complexity add-on code, that will be available to all specialties for visits that are part of ongoing care related to a patient’s single, serious, or complex chronic condition. However, the rheumatology community disagreed with CMS’ utilization assumption – which impacts reimbursement and evaluation criteria – and urged the agency to move forward with a more reasonable figure in addition to implementing a series of other technical changes to the code.

“The ACR remains committed to partnering with CMS to ensure rheumatology providers can continue delivering the high-quality care our Medicare patients need and deserve,” Dr. Gravallese concluded. “During these unpreceded times, it is imperative that providers are supported via appropriate reimbursement, embracing telehealth, alleviating administrative burden and streamlining programs designed to advance quality care. We look forward to working with CMS as it continues its efforts to realize these goals.”

American College of Rheumatology Secures $7M Grant to Address Gaps in Lupus Care and Treatment

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The following press release was issued by ACR today:

The American College of Rheumatology (ACR) was recently awarded a $7M grant to reduce inequities in symptom recognition, care and disease management of systemic lupus erythematosus (lupus). The grant, which will be led by the ACR’s Collaborative Initiatives (COIN) department, begins on Sept. 30.

Lupus is a chronic disease that causes systemic inflammation affecting the skin, joints and multiple organs like the kidneys, heart and brain. Many patients may also experience fatigue, weight loss, and fever.

“Despite the research and medical advancements in treatment, lupus-related disparities still persist,” said Director of COIN, Starla Hairston Blanks, MBA, MPH. “We know that lupus disproportionately affects persons of color and that it is two to three times more common in African American women compared to White women, often with worse outcomes.”

With funding divided into $1.4M per year through September 2025, the ACR will provide support to communities with the greatest impact of lupus disparities through various programming, like in-person interventions utilizing the allied health team, online and in-person training for clinical professionals and meaningful engagement of racially diverse and medically underserved communities. Efforts will also include:

  • implementing educational sessions for healthcare providers and medical students on the signs and symptoms of lupus with an emphasis on differential diagnosis;
  • utilizing the ACR’s Rheumatology Informatics System for Effectiveness (RISE) registry to expand the quality and use of lupus specific electronic health record tools and disease activity assessments to establish quality measures;
  • increasing the availability of culturally and linguistically appropriate lupus education focused on increasing awareness, disparities, and symptom recognition; and
  • expanding available pediatric-to-adult lupus transition and care coordination materials by engaging and educating school-based health professionals.

Supported by the Centers for Disease Control and Prevention (CDC), the Developing and Disseminating Strategies to Build Sustainable Lupus Awareness, Knowledge, Skills, and Partnerships grant backs organizations carrying out national efforts to increase the number of healthcare providers recognizing the signs and symptoms of lupus and helps them determine the next steps if the condition is suspected.

“ACR’s membership, registry and existing networks create a unique opportunity to leverage its access to healthcare providers and communities most impacted with lupus disparities,” said S. Sam Lim, MD, MPH, chair of the ACR’s Collaborative Initiatives Special Committee. “We have the experience and the initiative to create culturally appropriate information aimed at eliminating health disparities in in this rheumatic disease.”

Rheumatology Leaders and Patient Advocates Urge Congress to Address Care Challenges Exacerbated by COVID-19 During the Virtual “Advocates for Arthritis” Event

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The following is a press release issued by ACR today:

The American College of Rheumatology (ACR) will hold its first virtual Advocates for Arthritis event on Tuesday, Sept. 15, where more than 120 rheumatologists, rheumatology health professionals, and patient advocates will meet with lawmakers via video to discuss the healthcare challenges they are facing in the midst of COVID-19. During the event, advocates will urge lawmakers to adopt legislation that ensures continued delivery of accessible, safe and affordable care throughout this public health emergency and beyond.

“The pandemic has altered almost every aspect of our rheumatology practices,” said ACR President Ellen Gravallese, MD.  “It has impacted our patients’ lives significantly and required us to create new ways of delivering care through improved telehealth and other adaptations.”

Rheumatology providers face significant resource challenges as a result of the current climate. As providers work to balance patient safety and continued access to care, many have been forced to retool their operations, move a significant portion of visits to telehealth, source their own personal protective equipment (PPE), and help patients navigate drug supply challenges – while in many cases operating with less staff due to social distancing protocols, furloughs and layoffs.

Meanwhile, patients are concerned about their ability to access rheumatic care while avoiding exposure to the SARS-CoV-2 virus. A recent national patient survey conducted by the ACR found a 52 percent decline since 2019 among patients who say they are currently being treated by a rheumatology provider. Further, 66 percent of respondents reported using telehealth for rheumatology visits, with  COVID-19 cited as the most common reason. While telehealth has been a welcome option for providers and patients alike, some visits – such as those involving biologic therapy infusions – must be conducted in-person via an office visit.  Additionally, the rheumatology workforce shortage has made it increasingly difficult for patients in rural areas to find a practicing rheumatologist.

According to the latest federal estimates, 54 million Americans have a doctor-diagnosed rheumatic disease. A recent academic study suggests that number that could be as high as 91 million when taking into account symptoms reported by undiagnosed individuals. Even though as many as one-quarter to one-third of U.S. adults may be living with a rheumatic disease, there is an average of only one practicing rheumatologist for every 40,000 people, while it is estimated that the U.S. will need thousands more adult rheumatologists by 2030 to meet the challenges caused by a rapidly aging population and a fast-retiring workforce.

To address these challenges and ensure the continued delivery of high-quality care, rheumatology providers and patients are encouraging Congressional leaders to adopt the following legislative solutions:

  • Health Care at Home Act (H.R. 6644/S. 3741) – This legislation would require all employer-sponsored ERISA-regulated health insurance plans to provide reimbursement for telehealth visits (including audio-only visits) at the same rate as in-office visits for the duration of the COVID-19 Public Health Emergency.
  • The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 4932/S. 2741) – This legislation would expand telehealth services through Medicare and make it easier for patients to connect with their providers.
  • The Resident Physician Shortage Reduction Act (H.R. 1763/S. 348) would better prepare the nation for its next health care crisis by increasing the number of residency positions eligible for Medicare support by 15,000 slots over five years. Further, the legislation requires that at least 50% of the additional 3,000 slots added each fiscal year be directed to a “shortage specialty” residency program as identified by the Health Resources and Services Administration (HRSA), like rheumatology.
  • Funding for the Pediatric Subspecialty Loan Repayment Program (PSLRP). This program supports loan repayment and pediatric provider training experiences for primary care and dentistry providers who serve rural and underserved areas or community-based settings.  Reauthorization of this program was included in the CARES Act but has not been funded.
  • The Healthcare Workforce Resilience Act (H.R. 6788/S. 3599) reallocates to healthcare workers visas that were previously authorized by Congress and have not been used. Of these, 15,000 visas would be reallocated for international medical graduates and 25,000 visas for international nurses to ensure durable immigration status for our vital workforce.

Noting the precarious financial state of cognitive care specialists who treat complex conditions, rheumatology leaders are also urging lawmakers to support the Centers for Medicare & Medicaid Services’ important updates to the Physician Fee Schedule slated to take effect in January 2021. Established in concert with the American Medical Association, these updated reimbursements for complex office visits – also known as “Evaluation and Management” (E/M) visits – are critical to ensuring specialties on the front lines of treating chronic illness can continue serving patients in need.

“While the rheumatology community has adapted to meet these challenges head-on, there is serious concern about the long-term sustainability of this new practice landscape without additional, targeted federal interventions and funding support from lawmakers,” said Gravallese.

“My Disease May Be Invisible, But I’m Not”: Patients Tell Their Stories During September’s Rheumatic Disease Awareness Month

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The following is a press release issued by ACR today:

The American College of Rheumatology (ACR) and Simple Tasks™ will recognize the fifth annual Rheumatic Disease Awareness Month (RDAM) this September with an awareness campaign that focuses on amplifying patient voices and experiences.

The campaign theme, “My Disease May Be Invisible, But I’m Not,” will spotlight the diverse experiences of individuals who live with chronic and sometimes debilitating rheumatic diseases that affect more than 54 million adults and an estimated 300,000 children in the U.S. In a recent survey, two-thirds of Americans living with rheumatic disease reported their disease sometimes feels invisible because they “don’t look sick” to those around them – a finding that illustrates the continued need to increase awareness and end the stigma surrounding chronic diseases.

“During this September’s awareness month and beyond, we encourage all Americans living with rheumatic disease to share their stories, join our community, and participate in the ACR’s ongoing efforts to enact policies that promote safe, effective, affordable and accessible care and treatments,” said Ellen Gravallese, MD, President of the ACR. “Your voices and perspectives are incredibly important.”

The month’s activities include a national patient survey, spotlight videos and blog posts from three patient spokespeople, a satellite media tour, and an interactive “Tell Your Story” feature on the Simple Tasks website.

2020 National Patient Survey

Released during Rheumatic Disease Awareness Month, the survey of more than 1,100 Americans living with rheumatic diseases was conducted to gain a better understanding of the quality of life issues associated with these diseases. Notable survey findings include:

  • 68% of respondents reported their disease sometimes feels invisible because they don’t “look sick” to most people.
  • The vast majority — approximately 83% — reported at least one activity limitation as a result of their disease, including the ability to exercise, work and perform physical activities.
  • Out-of-pocket treatment costs more than doubled from 2019. The median annual out-of-pocket treatment cost in 2020 was $1,000 — up from $475 last year.
  • About 66% of patients reported having a telehealth appointment with their rheumatologist within the past year, with COVID-19 reported as the most common reason.

See the complete 2020 survey findings and more information on the survey methodology.

“Living with an invisible disease is not the end of the road.”

Throughout the month, three patient spokespeople will share their stories and experiences of what it is like to live with an invisible disease.

Georgia State Representative Kim Schofield, of Atlanta, has spent the past 20 years living with lupus and advocating for the lupus patient community. After losing her job because they told her she “didn’t look sick,” Schofield mobilized patient advocates to pass legislation at the state level, in 2014, recognizing lupus as a cause of disability. In 2017, she ran for state office – and won. During her first year in office, Rep. Schofield was able to get appropriations money for lupus research and educate school nurses across the state about lupus.

“Living with an invisible disease is not the end of the road. It is an opportunity for you to explore things in yourself that have not been created or done. It is like rediscovering yourself,” said Rep. Schofield.

An estimated 1.5 million Americans have a form of lupus.

“To me, having an invisible disease is the call to educate the world.”

J. Chandler Woods, of Kingsport, Tennessee, was diagnosed with juvenile idiopathic arthritis when he was 14 years old. When he learned he had arthritis, he was worried he would not be able to continue doing the things he loved, like performing in his high school marching band. Thanks to early diagnosis and access to treatment from a rheumatologist, Woods has been able to manage his symptoms and stay active.

“To me, having an invisible disease is the call to educate the world about what it’s like to live with a disease that may not be identifiable just by looking at somebody,” said Woods.

An estimated 300,000 children in the U.S. live with a form of arthritis.

“Because people can’t always see the signs and symptoms, it’s hard for them to know these are real conditions that impact millions of people.”

Like many with Sjogren’s syndrome, Jill Abbott, of Fargo, North Dakota, experienced fatigue, dry mouth and eyes and joint pain before her diagnosis. Learning to manage a chronic condition while also being a mom is not an easy feat, but Jill has learned that patience and persistence, as well as having healthy habits, are keys to managing her invisible rheumatic disease.

“Because people can’t always see the signs and symptoms of rheumatic diseases, it’s hard for them to know that these are real conditions that impact millions of people,” said Abbott.

An estimated 4 million Americans live with Sjogren’s syndrome.

Along with telling their stories, Schofield, Woods and Abbott will be encouraging others to tell their story to raise awareness during RDAM.

Tell Your Story

The Simple Tasks website will feature opportunities for patients to tell their own stories throughout September. Patients can submit a photo, video or a few of their own words describing their experiences living with an invisible disease, or submit a letter to the editor of their local newspaper discussing this year’s survey findings. Patient submissions will be posted in the “Tell Your Story” gallery at RDAM.org and shared on social media throughout the month using #RDAM.

Cognitive Load & The Pandemic

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There’s an article that’s been going around about Surge Capacity. It’s worth reading, but it also brought up another term for me: cognitive load.

Cognitive load is the thing where it gets really hard to make decisions when you have too many options, like trying to pick from the menu at The Cheesecake Factory. You might make a decision only to lose it while looking at the menu, or you might just struggle to pick the decision that brings the most joy. If you’re like me, you’ll make a panicked decision and get something you likely didn’t want.

Cognitive load is usually used to talk about information absorption. In one common example, our memory is like an iceberg. The top part, visible to all, is our short-term memory. It can take in a fair amount, but can’t really absorb everything we expect it to throughout the day. The bottom part of the berg is our long term memory. For the most part, things that make it there are easy to remember.

When there isn’t enough room in our short-term memory, not only are we overwhelmed but we lose ideas and information. They slide off that tiny tip of the iceberg, freezing in the sea like Jack when Rose wouldn’t share her damn door.

We can prevent this, though, through receiving information in manageable chunks.

Apply that to our world right now… We have SO MUCH information coming our way, from pop culture to politics to social injustice to the absurdity of navigating video meetings that should’ve been emails…

It’s especially easy to get overwhelmed.

Thankfully, there are ways to address cognitive load. We can make life easier for ourselves that also don’t require opting out of important things like staying abreast of current events or being involved in activism.

1) Recognize and acknowledge that we’re not just working or learning or doing other things from home, but doing so during a time of great unrest. Not only does that mean extra stress from the world’s ick, but that we’re also bringing work or school into our comfy spaces. That’s a lot less space for us to be at rest, from a cognitive standpoint.

2) Try to create a space that’s only (as much as possible) for joy. Maybe only watch entertaining things like Great British Bake-Off on the TV in your bedroom versus watching the news, for example. Even if it’s a corner full of fun spooky season decor, find a way to cultivate joy specifically in your living space.

3) Listen to your brain and your body. If you’re doing school or work from home, you have deadlines and I get it. As much as you can, though, try to listen to what your body and mind are telling you. For example, I take breaks to look at social media or move around every 20-60 minutes. Sometimes I need more breaks, sometimes I need fewer.

4) For the people you live with, provide options when asking questions like “What do you want to do/eat/drink?” It’s a lot easier to pick between two concrete options when you’re frozen from cognitive load than to try to pick one thing out of several possibilities. Ask for the same when you need it.

5) If you’re in a position to give them, provide clear instructions to the people around you whether they’re kids or coworkers or partners. If you get instructions, ask for as much clarity as possible.

6) Break up bigger tasks into smaller ones. Have you ever used an organization tool like Asana? You can add a ton of smaller tasks onto a bigger one. Think like that about all the tasks in your day, from showering to cooking to work. If you haven’t used Asana or something similar, let’s talk showering. It’s not just getting into the shower, right? It’s grabbing a towel, going into the bathroom, starting the shower (and fan), taking your clothes off, maybe picking music to listen to – and that’s just before!

7) Think about the best ways you consume or take in information. Is it via audio, visual, text, or by doing? Or another way? Make sure the people around you know your learning style and try to set up the things you take in to match. If visual is best for you, maybe IG or TikTok would be fun break time things. If audio is more your thing, perhaps listening to a podcast or music would be helpful.

8) Be patient! This is a wild time in the world, and it’s not something that’s easy. Give yourself space and grace – space to grow and feel and be human, and grace when you have a rough day or make a mistake.

We’re human and it happens, especially with so much on our plates.

We are dealing with profound grief & loss, on a level that is unquestionably upsetting. What we’ve all lost during the pandemic alone is hard, but throw in it being an election year, all of Cheeto Voldemort’s BS, and bigots galore… It’s understandable to feel some type of way.

We often feel at odds, too, when we find joy during a tumultuous time. One thing a lot of us struggle with is the plurality of our existence, that we can be both excited for the next episode of the show we love and angry at politicians for not addressing racism. Look, it’s okay for that to be difficult to rationalize! Our brains like black & white, not the rainbow of colors and the nuances that happen in life.

We have to remember humans are complicated and our brains are, too

I know that, sometimes, we need to hear these things from someone other than ourselves, so buckle up…

You have permission to exist as a human right now, to feel all of the complicated and possibly upsetting things this time in history is bringing up.

As a feelings nerd, I encourage you to lean into the feelings. Investigate them down to their roots. Is it ‘just’ stuff right now giving you existential dread, or is this bringing up something from your past, too?

We have to fight the effects of chronic stress in our lives because it can literally be deadly. Chronic stress can add to our risk factors for emergency situations, including heart attacks and strokes – and it can bring on chronic pain.

Find your joy!

Eat all the pumpkin spice things and flip off anyone who gives you grief about it. Learn the WAP dance (but watch yourself on that split because I DID NOT). Take time to create videos on Tiktok (or just watch my guinea pig ones). Binge a show you’ve wanted to watch.

I really enjoy my job! There are definitely issues with public health, but my coworkers are really great

And I’m moving! Ian & I move to a 2br this weekend meaning we have a legit office room

American College of Rheumatology’s Annual Meeting Pivots to All-Virtual Format

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The following is a press release from ACR issued today:

In keeping with global efforts to stem the spread of SARS-CoV-2 (COVID-19), the American College of Rheumatology (ACR) will take its annual, face-to-face meeting virtual. ACR Convergence will take place online Nov. 5 – 9.

Originally slated for Nov. 6 – 11 in Washington, D.C., the ACR Convergence planning committee made the decision in late spring to host an all-virtual event in response to the pandemic affecting rheumatologists, rheumatology health professionals and patients with rheumatic diseases—along with the rest of the world.

“In a few short months, dedicated ACR leaders, volunteers and talented staff have pivoted from our original plans to reimagine all aspects of our annual meeting, resulting in an all-virtual, interactive experience for the global rheumatology community,” said ACR President Ellen Gravallese, MD. “Our goal is to present the highest quality educational content in a way that allows everyone to participate, with the unified purpose of improving patient care.”

As expected, there will be changes to how participants access and experience the meeting’s content. This year, the daily educational sessions will be divided into two blocks (10:00 a.m. – 1:00 p.m. ET and 3:00 p.m. – 6:00 p.m. ET) to accommodate meeting participants in different time zones. Each educational block will include live content and time for Q&A, as well as opportunities for interaction with peers. Between educational time blocks, participants will have the opportunity to access community hubs, a unique feature that allows attendees to engage with experts and connect with peers who share the same research or clinical interests.

The ACR Convergence Opening Session has also been revised for this meeting. It will be held Thursday, Nov. 5 at 2:00 p.m. ET, and will include the presidential address, recognition of ACR’s Gold Medal Award recipient, ARP Lifetime Achievement Award, the keynote lecture, and the always popular Year in Review. The 2020 keynote speaker is Eric J. Rubin, MD, editor-in-chief of The New England Journal of Medicine, chair of the Department of Immunology and Infectious Diseases at the Harvard T.H. Chan School of Public Health, Boston, and the Irene Heinz Given Professor of Immunology and Infectious Diseases. Dr. Rubin will discuss COVID-19 and the convergence of infection and inflammation.

Among other things, participants will have opportunities to attend special events, visit the virtual exhibits and schedule private group meetings to connect with their peers. Additionally, all content will be available on demand following the live session so attendees can watch their choice of sessions at a later time.

The ACR is also honored to have Anthony S. Fauci, MD, ACR Master and director of the National Institute of Allergy and Infectious Diseases give a live presentation on Saturday, Nov. 7, at 4 p.m. ET. Dr. Fauci, who delivered the 2017 ACR keynote address, will share valuable insights on COVID-19.

“Future generations will refer to 2020 as a transformative year for education in rheumatology. We hope that the ACR Convergence annual meeting will reflect that transformation in the best possible way,” said Gravallese.

ACR Convergence 2020 registration is now open, and the full program can be viewed at https://www.eventscribe.com/2020/ACRConvergence/agenda.asp?pfp=FullSchedule

Racism is a Public Health Crisis

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More white people are waking up to how insidious racism is. It’s both great and upsetting at the same time. It should not have taken this long for people to see the issue and want to address it.

In public health, we often talk about the notion of racism and discrimination being a part of society’s culture. Some types of discrimination are especially clear in different types of settings. For example, ageism plays a huge role in pain management. Young people aren’t believed about pain. Older folks are presumed to have little quality of life, and are either over or undertreated.

While racism is not just an issue that affects only Black folx, I am focusing this piece mostly on Black pain due to racism.

When we say ‘racism is a public health crisis,’ what does that mean?

The following is from a Rolling Stone article entitled ‘Racism Kills: Why Many Are Declaring It a Public Health Crisis‘ –

When it comes to discussing racism and public health, words matter. Specifically, [Mary] Gregory says that it’s important to refer to racism as a public health “crisis” instead of an “issue.” Not only is it more accurate, she says that racism also meets the four criteria the CDC requires in order for something to be considered a public health problem. That means that (1) it places a large burden on society that continues to increase, and (2) impacts certain parts of the population more than others. In addition to that, (3) there’s evidence that preventative strategies could help, but (4) this hasn’t happened yet. And while we’re on the subject of words, Gregory wants to remind us that when we talk about “race,” we’re really talking about skin color. “There is one race on this planet — homo sapiens — and to use the word ‘race’ in talking about skin color is our first mistake,” she explains.

I highly suggest reading that article. It’s a fantastic picture of racism as a crisis.

Here in Wisconsin, it might be even worse than in some states. Still, despite Milwaukee being one of the most segregated cities in the US, Wisconsin was the first state to declare racism a public health issue.

Let’s examine just some of the ways that racism can impact someone’s life.

 

Environmental Racism

The Flint water crisis is still happening. They still do not have clean water, and it’s been SIX YEARS. The government continues to fail to address this issue in a way they wouldn’t be able to if Flint was full of white middle-class people. The only way they’re getting away with this is because the population is primarily BIPOC (Black, Indigenous, & People of Color) folx living in poverty.

 

Medical Racism

Black folx are around four times more likely to die of pregnancy complications than white folx.

Black people, on average, have a lower life expectancy than whites. In addition to outright physical violence, part of why this occurs is the chronic stress of being Black. As we well know, stress can cause and worsen chronic conditions. Combine this with a lack of access to medical care – or not trusting the medical system because it routinely engages in racism – and it’s a recipe for disaster.

Currently? We know that BIPOC are one of the groups dealing with the most impact from Covid.

 

Police

I recently covered the 2015 murder-by-cop of Madison-local Tony Robinson for my podcasts. You can listen here.

Police continue to murder Black folx at higher rates. The police ‘issue’ isn’t something we ignore, either, as half of all people murdered by cops are disabled.

A lot of people think that means the policing system needs reform. In reality, white people created policing exactly this way. The notion of police in America came out of that of the slave catchers. That’s right – the police developed from a system literally only designed to protect the property, livelihood, and well-being of white people. It likely goes without saying that, as time went on, this also meant the police attacked and oppressed anyone they saw as a threat to that – disabled, trans, queer, BIPOC, etc.

 

Institutional Racism

Each of these types of racism is a part of institutional racism. It’s much worse than most white folx realize.

Moving into the Civil Rights era, white people took special care to ramp up attacks on Black folx. Lawmakers drafted and passed laws around public housing, financial assistance, and many other areas. They did this to specifically target Black communities. These included laws against those convicted of felonies and drug charges living in public housing or lowering their job prospects. This combined with police increasing patrols and arrests in Black communities began to lead to the higher incarceration rates for Black folx – particularly Black men. That later transferred to affect all genders while simultaneously forcing those who are transgender or gender non-conforming into incorrectly gendered facilities where they face additional harm from guards and fellow inmates.

Combine all of that with the increase in social workers stealing children to put them in foster care under false pretenses, the school-to-prison pipeline, and rapid underfunding of any organization that might actually be able to help? It’s a recipe for disaster.

Black people are then gaslit and told that these systemic forms of oppression are their fault. While nothing could be further from the truth, the impact of those lies cannot be understated.

 

Epigenetics

Now, imagine this going on for any of our families for half a millennium. Consider what it would mean if we couldn’t even trace our ancestry back that far because no one had cared to collect our family stories. There’s a lot of trauma that can affect people in many ways.

Epigenetics is the study of how our DNA changes how it expresses itself in response to things like diet, exercise, and stress. Toxic stress can cause long-term problems including post-traumatic stress, changes in brain physiology, and more. These changes pass down through generations. The stress of going through abuse can be passed down to the abused person’s children, etc. This applies to historical trauma, such as slavery, too.

Epigenetics is such a new field of study that we have no knowledge yet around how to help heal those wounds. There is a specific type of post-traumatic stress called Post-Traumatic Slave Syndrome. Things like therapy can be helpful for our own experiences, but can they touch on historic pain? Not really.

 

What do we do now?

If you’re white – and, from my readership stats, I know you probably are – it’s time to start learning. Here are a few resources:

#WTFix Virtual Patient Panel

Posted on by Grayson

Earlier this month, I took part in the #WTFix Patient Panel.

Not heard of WTFix? What’s the Fix? (#WTFix) is a movement focused on helping the health care industry learn from patients while inspiring people to make change through even the smallest fixes. We do this by collecting and amplifying patient stories, seeking creative ways to get people to think differently and challenging the status quo of today’s health care system.

https://youtu.be/3gZVk0CSt3Y