Category: ACR

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.”

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.

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.”

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.

The following is a press release issued by ACR today:

The American College of Rheumatology (ACR) today applauded the Centers for Medicare and Medicaid Services (CMS) for taking steps to appropriately value cognitive care and expand telehealth access in its CY 2021 Physician Fee Schedule (PFS) Proposed Rule.

“The ACR commends CMS for recognizing the historic undervaluing of the services provided by rheumatologists and other cognitive care providers, and for taking steps in this proposed rule to more appropriately reimburse the complex care they provide to Medicare patients,” said ACR President, Ellen Gravallese, MD. “This is good news for the 54 million Americans who live with rheumatic disease – many of whom are current Medicare beneficiaries or will enter the Medicare system one day – and will help to ensure they continue to receive the healthcare services they need and deserve.”

Evaluation and management (E/M) services provided by cognitive specialists, including rheumatologists, have historically been undervalued by Medicare. A 2018 report from the Medicare Payment and Advisory Commission (MedPAC) found that healthcare services billed under E/M codes – which include examinations, disease diagnosis, risk assessments, and care coordination – are grossly under-compensated, creating significant patient access issues and contributing to workforce shortages.

If implemented as written, the 2021 PFS proposed rule will address these historic issues and increase patient access by improving office visit payments and expanding telehealth services.