Category: ACR

New ACR White Paper Highlights Health Care Challenges Affecting the Rheumatic Disease Community

Posted on by Grayson

The following is a press release from ACR released on May 11:

The American College of Rheumatology (ACR) today announced the launch of a new white paper, “Rheumatic Diseases in America: Confronting the Challenge,” which provides an overview of the current health care challenges facing the rheumatic disease community and highlights the importance of receiving timely and appropriate treatment from a rheumatology health professional.

Released during Arthritis Awareness Month, the white paper aims to educate policymakers, health care professionals, members of the media and the general public about rheumatic diseases, which affect approximately 54 million adults and at least 300,000 children in the United States alone.

“Rheumatology is a broad discipline that covers a wide variety of diseases that affect a person’s joints, musculoskeletal systems, immune system and many other organs,” said Dr. Suleman Bhana, Chair of the ACR’s Communications and Marketing Committee. “With this white paper, we aim to create an accessible, introductory resource for those interested in learning more about rheumatic disease, current treatment options, and the health care and lifestyle challenges patients with rheumatic disease face.”

The white paper is written and designed to appeal to multiple audiences and consists of four key sections:

I. Rheumatology 101

This section provides an introduction to what a rheumatic disease is, describes the role of a rheumatologist, and discusses the importance of early and appropriate treatment. Patients and their family members – particularly those who may have been recently diagnosed with a rheumatic disease – may find this section helpful in understanding what to expect after a diagnosis. Health care professionals may also find this section to be an important resource for conversations with patients to reinforce the importance of timely and accurate diagnosis, and why coordinating care between specialists is so important.

There are over 100 different rheumatic diseases and conditions, some of the most common include: rheumatoid arthritis, lupus, gout, scleroderma, juvenile idiopathic arthritis, psoriatic arthritis, ankylosing spondylitis and Sjögren’s syndrome. This white paper discusses what some of these diseases are and how they affect different parts of the body.

II. Rheumatic Diseases: Prevalence & Impact

Rheumatic diseases in America are extremely common. According to the CDC, an estimated 54 million Americans – 1 in 4 – have a doctor-diagnosed rheumatic disease and some studies have suggested that the actual number of Americans living with these diseases is even higher when accounting for symptoms reported by undiagnosed individuals. The economic toll of rheumatic diseases is also significant. The total cost of rheumatic diseases was recently estimated to be as high as $304 billion annually – greater than the total cost of cancer care in the United States.

For policymakers, the media and the general public, this white paper provides useful statistics that call attention to rheumatic diseases as a public health issue, why solutions are urgently needed to improve patients’ quality of life, and why rheumatology health care professionals are uniquely equipped to help patients manage these diseases.

III. Emerging Trends in Rheumatology

Providers may find the white paper’s discussion of emerging trends in rheumatology – including biosimilars and telehealth – to be helpful in their practice. Rheumatology is a constantly changing field of medicine and these issues will become increasingly important for patients, providers, and the public to understand.

Biosimilars (copies of biologic drugs that are intended to work in the same way as their reference products) represent a new and promising area of rheumatic disease treatment. However, educating patients and providers about their use will continue to be crucial to ensuring their uptake. While recent research has shown that rheumatologists generally have a good understanding and acceptance of biosimilar products, a recent survey found that 29 percent of rheumatic disease patients were unsure whether they had been prescribed a biosimilar drug.

Telehealth, the adoption of which has been catalyzed by the COVID-19 pandemic, represents another important emerging trend in the practice of rheumatology. As many as 66 percent of rheumatic disease patients had an appointment via telehealth in 2020 and these services have been shown to especially benefit individuals with disabilities, those who are in a nursing home, and those living in an area where they would have to travel long distances for treatment.

IV. Access, Affordability & Lifestyle Challenges for People Living with Rheumatic Disease

People living with rheumatic diseases face a variety of access, affordability, and lifestyle challenges associated with their disease. This white paper provides an overview to the public policy issues related to these challenges such as a growing rheumatology workforce shortage, insurer practices that restrict access to care, and rising drug prices that threaten to make treatment unaffordable for many who rely on specialty medications to manage their symptoms.

Solutions are needed to address these issues – and others – that affect the rheumatic disease community. This white paper presents readers with the latest opportunities to get involved with the ACR and Simple Tasks to advocate for better public policy.

To download and read the white paper, CLICK HERE.

ACR COVID-19 Vaccine Guidance Recommends Vaccination, Addresses Immunosuppressant Drugs & Patient Concerns

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The following is a press release from ACR dated February 11.

The American College of Rheumatology (ACR) has released its COVID-19 Vaccine Clinical Guidance Summary that provides an official recommendation to vaccinate rheumatology patients with musculoskeletal, inflammatory and autoimmune diseases.

“Although there is limited data from large population-based studies, it appears that patients with autoimmune and inflammatory conditions are at a higher risk for developing hospitalized COVID-19 compared to the general population and have worse outcomes associated with infection,” said Dr. Jeffrey Curtis, chair of the ACR COVID-19 Vaccine Clinical Guidance Task Force. “Based on this concern, the benefit of COVID-19 vaccination outweighs any small, possible risks for new autoimmune reactions or disease flare after vaccination.”

The guidance was developed by a multi-disciplinary panel of nine rheumatologists, two infectious disease specialists, and two public health experts and is intended to give direction to providers treating rheumatology patients on how to best use COVID-19 vaccines, as well as facilitate implementation of vaccination strategies for rheumatology patients.

“Our members have been inundated with questions and concerns from their patients on whether they should receive the vaccine,” said Dr. David Karp, President of the ACR. “We hope the guidance will provide them evidence-based reassurance that their patients will benefit from being vaccinated and guidance on how to best incorporate it into their treatment plans to maximize vaccine efficacy.”

Important considerations and caveats on how to approach vaccination are included for patients with high disease activity and/or those taking immunosuppressant treatments. These include recommendations to modify certain treatments such as methotrexate, JAK inhibitors (e.g., baricitinib, tofacitinib, upadacitinib) and some biologics (e.g., abatacept and rituximab) that alter the immune system’s response in ways that might affect vaccine response.

The panel based their recommendations on the use and timing of immunomodulatory medications on evidence extrapolated from their immunologic effects as they relate to other vaccines and vaccine types. As such, these and other recommendations made by the task force should be considered ‘conditional.’

“There was vigorous debate on several topics such as the expected magnitude of benefit of vaccination for patients receiving therapies that substantially alter or suppress the immune system (e.g., high dose steroids),” said Curtis. “Ultimately, the task force agreed that in almost all cases, proceeding with vaccination and obtaining at least a partial response would be better than deferring vaccination, since deferring provides no protection at all. Given the lack of direct evidence for these vaccines in rheumatology patients, the panel applied general immunologic principles observed with other vaccines to make recommendations on how to increase the likelihood of a favorable vaccine response.”

“For example, an RA patient with well-controlled disease may benefit from holding a dose of methotrexate immediately following vaccination,” added Karp. “In the case of drugs with long dosing intervals such as rituximab, there are some circumstances where it may be beneficial to time the vaccine around when the last dose was given to maximize the vaccine’s efficacy. We encourage clinicians to study the charts we’ve provided in the summary for details on how they can time various medications to ensure maximum success.”

Given the uncertainty surrounding when alternative vaccine types will become available, the task force focused on the two mRNA COVID-19 vaccines available in the U.S. at the time of their deliberation. No preference for one vaccine over another was stated, and patients are recommended to receive whichever of the mRNA vaccines is available to them.

“With efficacy about the same for both vaccines, we felt it was not important which brand patients received. Realistically, many individuals will not have a choice, as availability varies by site and region. Therefore, it was important to assure providers and patients this was not a factor to consider when discussing vaccination. However, patients should stick to the same vaccine brand for both injections,” stated Curtis.

The ACR has voiced that recommendations in the guidance should not replace clinical judgement, and decisions about individual patients should be made as part of shared decision-making with patients that considers their underlying health condition(s), disease activity level, current treatments, risk of exposure to SARS-CoV-2 and geography. Patients are also encouraged to continue following all public health guidelines regarding mask wearing, physical distancing and other preventive measures even after vaccination.

Future changes are expected to the guidance as more safety and efficacy data about the existing two mRNA vaccines, other vaccine platforms, and vaccine response specific to rheumatic disease patients become available.

“This is very much a ‘living document,’ and the task force already has plans to evaluate additional data in the coming weeks,” said Curtis. “We desperately need direct evidence from high quality research. To reach that goal, we would issue a call to action for patients, providers and researchers to mobilize and support the important research efforts that are underway to study vaccine effectiveness and safety in rheumatology patients.”

The ACR is hosting a town hall with members of the task force on Tuesday, Feb. 16, at 7:30 p.m. EST to discuss the guidance and answer questions about the recommendations. Members of the press are invited to attend and encouraged to register online. Questions about the guidance can be submitted when registering.

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.

American College of Rheumatology Launches Digital Health Coaching Program for Black and Latina Women with Lupus

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The following is a press release from the ACR dated today:

The American College of Rheumatology (ACR), in partnership with Pack Health, launched two digital health coaching programs to reduce health disparities among Black women and Latinas living with systemic lupus erythematosus (lupus). The ACR’s Collaborative Initiatives (COIN) department, which houses The Lupus Initiative, will lead the efforts.

The ACR is launching the programs to address a lack of digital health coaching options for the lupus community. The ACR’s COIN department, which concerns itself with advancing health equity and eliminating health disparities, sought funding and community support to create tools that will assist Black women and Latinas living with the disease. Hopefully, having a digital health coaching program specific to this population will help with navigating daily barriers and issues they face in self-management.

The first program is a one-year, $100,000 medical education grant. It runs until Oct.15, 2021, and will provide digital health coaching for 15 individuals with lupus for three months.

The goals are to:

  • Increase patient self-efficacy to engage in recommended lifestyle behaviors and adhere to treatment recommendations;
  • improve adherence to recommended lifestyle and behaviors; and
  • produce insights into program acceptability, patient barriers and lupus disease burden, among other things.

The second program, known as Lupus Engagement through Activity and Digital Resources (LEADR), is a two-year, $299,000 grant-funded through the Office of Minority Health. It will run until Oct. 30, 2022 and plans to reach 200 Black and Latina women in Georgia. LEADR aims to:

  • Encourage more medical providers to discuss and refer their patients to a digital health coaching program,
  • increase physical activity among Black women and Latinas with lupus, reduce negative health outcomes associated with lupus, and ultimately reduce lupus health disparities.

“Building on evidence-based approaches, LEADR’s community-driven health equity model is a unique way to address the complex, multi-faceted need for more providers to recommend physical activity and adherence among African American women and Latinas with lupus,” said Rosalind Ramsey-Goldman, MD, chair of the ACR’s Collaborative Initiatives Committee. “The ACR is singularly qualified, and positioned, to develop and implement a lasting program that improves physical activity among this particular population.”

The ACR has partnered with Pack Health, a health coaching company specializing in providing digital support to people with chronic conditions, to execute the programs. Pack Health will create curriculums and deliver one-on-one health coaching to the target populations. The ACR will lead the programs and leverage its membership, collaborations and TLI resources to achieve the outcomes.

“The focus of these programs is to develop and provide meaningful, data-driven, one-on-one support to improve the self-management skills for people with lupus,” said Kelly Brassil, PhD, RN, Pack Health’s Director of Medial Affairs. “Pack Health’s key objectives are to conduct literature reviews and collect qualitative data to understand patient needs and experiences, use what we learn to inform program development, and, in turn, better serve the needs of the lupus community. Additionally, we plan to enhance and specialize our physical activity content for individuals living with lupus, with a special emphasis on Black and Latina women.”

Lupus is a chronic disease that causes systemic inflammation affecting the skin, joints and multiple organs like the kidneys, heart and brain. It is estimated that 1.5 million Americans have a form of the condition.  According to the Centers for Disease Control and Prevention, Black women are three times more likely to get lupus than white women, and lupus is also more common in Hispanic, Asian, and Native American and Alaskan Native women. Additionally, Black and Hispanic women usually get lupus at a younger age and have more severe symptoms, including kidney problems, than women of other groups.

61 Healthcare Groups Urge Congress to Support Implementation of the Medicare Physician Fee Schedule Final Rule, Waive Budget Neutrality Requirement

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The following is a press release issued today by ACR:

Today, more than 60 healthcare stakeholders, representing Medicare providers,  signed a letter urging congressional leaders to support bipartisan legislation that would implement the Centers for Medicare and Medicaid Service’s (CMS) Calendar Year 2021 Medicare Physician Fee Schedule (MPFS) final rule as written, and provide for a one-year waiver of budget neutrality adjustments to avoid payment reductions to providers during the COVID-19 public health emergency.

If enacted, H.R. 8505 , which was introduced by Representatives Michael Burgess (R-TX) and Bobby Rush (D-IL), would ensure that long overdue rate increases for evaluation and management (E/M) services provided by rheumatologists, neurologists, and other cognitive specialists under Medicare – as finalized by CMS in its final rule – would not lead to rate cuts to other medical specialties or to physical and occupational therapists, many of which are an integral part of the rheumatology patient care team. This is a legislative solution that meets the needs of all stakeholders by allowing CMS to implement the final rule, on schedule, while funding offsets to the reimbursement reductions using funds allotted for provider support during the public health emergency.

“H.R. 8505 is a win-win solution for all medical specialties, and we encourage congressional leaders to swiftly pass this legislation,” said David Karp, MD, PhD president of the American College of Rheumatology (ACR), the group leading the letter. “Current E/M reimbursement rates suppress patient access to diagnosis, treatment, and health maintenance at a time when demand for care is increasing. If this dire situation is not addressed as planned in the MPFS, then patient access to care will continue to decline.”

In 2018, CMS proposed a code collapse that would have resulted in significant cuts to rheumatology care provided to Medicare beneficiaries. But after hearing the concerns raised by the patient and specialty provider community, CMS finalized a new proposal that reflects the recommendations of the American Medical Association, the ACR and over 170 other specialty societies and state medical associations. When enacted, the new rule will provide long overdue updates to Medicare reimbursement for time-intensive healthcare services including examinations, disease diagnosis, risk assessments and care coordination.

“The E/M improvements that will go into effect in January 2021 are critical to the continued delivery of high-quality rheumatology care for millions of Medicare beneficiaries,” said Karp. “Budget neutrality via H.R. 8505 is a fair and reasonable approach to ensure these needed updates are not made at the expense of other specialties.”

Recap of #ACR20 Day One

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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.