Young Rheumatology Patients Not Counseled on Sexual Health

Young Rheumatology Patients Not Counseled on Sexual Health

Brittany M. Huynh, MD, MPH, presented an abstract at ACR Convergence of her paper, Adolescent and Young Adult Rheumatology Patient Reports of Reproductive Health Screening and Counseling in the Clinical Setting.

In this paper, Huynh and her colleagues found that only 38% of pediatric rheumatologists were screening patients between 14-23 years of age for sexual activity. Only 17% of patients surveyed had conversations with their rheumy about pregnancy prevention.

Thankfully, this number was higher for the 36% of surveyed patients that were on teratogenic drugs — those that would harm a fetus. 54% of these patients were screened for sexual activity and 44% were counseled on avoiding pregnancy. However, only 62% of these patients knew their medications would harm a fetus.

We already know that there’s a general lack of these conversations happening across healthcare. Many healthcare providers don’t feel like they know enough about this topic to talk to their patients. Others may struggle with getting their pediatric patient alone to have these conversations without a parent or caregiver present.

As a sex educator, I also wonder how many of these conversations were affected by the overturn of Roe v. Wade. Many clinic systems and professional organizations have struggled with how to highlight the importance of this issue. That’s especially true in states banning similar conversations or punishing healthcare providers for having them.

For any rheumatology professionals looking into how to have these conversations, consider reaching out! I’m always happy to talk shop, consult, or work with your clinic on how to best serve this population.

Photo from The Gender Spectrum // VICE

The Association of Rheumatology Professionals Selects Long Time Physical Therapist to Lead the Organization

The following is a press release issued by the ACR on Nov 14, 2023:

Today, the Association of Rheumatology Professionals (ARP), a division of the American College of Rheumatology (ACR), announced the appointment of Aileen Ledingham, PT, MS, PhD as the ARP’s  58th president during ACR Convergence 2023, the ACR’s annual meeting.

“The ARP has been a professional home for me for more than a decade—providing the support, resources and educational value needed to excel in my rheumatology career,” said Ledingham. “To now be trusted to lead this organization and all it does to serve rheumatology health professionals and their patients is a true honor.”

As an ARP member, Ledingham has held various leadership positions including co-chair of the ACR membership & awards committee and chair of the ARP eLearning subcommittee. She has also been a member of the ACR finance and education committees, and the ARP nominations and appointments committee. For the past few years, she has been a member of the ARP executive committee as secretary and president-elect leading up to her appointment as ARP president.

Ledingham earned a bachelor’s degree in physical therapy from Northeastern University, a master’s degree in pediatric physical therapy from Long Island University, and a doctorate in rehabilitation sciences from Boston University. She is currently a physical therapist clinical scientist working at Mount Auburn Hospital in Cambridge, Massachusetts. Her research interest is in the field of knee osteoarthritis, specifically on how to help patients use exercise and physical activity to improve their quality of life.

Ledingham’s term begins this month along with the recently appointed 2023-2024 ARP Executive Committee:

  • President Elect – Adam Goode, PT, DPT, PhD
  • Secretary – Becki Cleveland, PhD
  • Immediate Past President – Kori Dewing, ARNP, DNP
  • Practice Committee Chair – Annelle Reed, CPNP, MSN
  • eLearning Committee Chair – Adena Batterman, MSW
  • ARP AMPC Chair – Priscilla Calvache, MSW, LCSW
  • Member-at-Large, Finance – Jillian Rose-Smith, MSW, MPH, PhD
  • Member-at-Large – Bharati Bhardwaja, PharmD, BCPS, LSSBB
  • Member-at-Large – Yvonne Golightly, PT, MS, PhD
  • Committee on Research Liaison – Kaleb Michaud, PhD
  • Committee on Government Affairs Liaison – Donald Miller, PharmD, FASHP
  • ACR Representative – Sam Lim, MD, MPH

The ARP, which serves more than 1,200 members, exists to equip rheumatology professionals with the tools needed to provide quality care for patients with rheumatic and musculoskeletal diseases. ARP members include nurses, nurse practitioners, occupational therapists, physician assistants, physical therapists, pharmacists, practice managers, researchers, social workers and other non-physician professionals in various rheumatology and healthcare settings.

About the Association of Rheumatology Professionals

The Association of Rheumatology Professionals (ARP) is a division of the American College of Rheumatology built by rheumatology professionals, for rheumatology professionals. Our goal is to empower rheumatology professionals by providing education, advocacy, and practice management tools. For more information, visit rheumatology.org/about 

ACR Launches Biosimilar Patient Education Campaign for Rheumatic Disease Awareness Month

The following is a press release issued by the ACR September 12, 2023.

The American College of Rheumatology (ACR) today launched its patient education campaign, Biosimilars & You: A Guide to for Patients with Rheumatic Disease as part of Rheumatic Disease Awareness Month (RDAM). The campaign aims to help individuals diagnosed with a rheumatic disease better understand what biosimilars are and that these therapies may offer a treatment option as safe and effective as the original biologic they are based upon.

A 2023 survey looking at US patients’ attitudes about biosimilars found that patients expressed a desire to know more about biosimilars in general and specifically about how they compare with original biologics, their benefits, and their cost. The ACR, in consultation with practicing rheumatologists and rheumatology health professionals, developed resources, which include a video; an infographic; a patient fact sheet, and additional materials, to meet this need.

“Biosimilars are a class of medications that rheumatologists have long been prescribing in the US and Europe to successfully treat rheumatic conditions,” said Marcus Snow, MD, chair of the ACR Committee on Rheumatologic Care and spokesperson for RDAM 2023. “They go through a very stringent review process with the FDA and are verified to be just as safe as the biologics they are based upon. With so many new biosimilars available this year, we knew patients would have questions and providers would be seeking resources to share with their patients.”

More than 58.5 million American adults have been diagnosed with a rheumatic disease, and an estimated 300,000 children live with some type of juvenile arthritis. Prior to the advent of biosimilar therapies, there has been only one medication healthcare providers could prescribe for their patients with rheumatoid arthritis, psoriatic arthritis, lupus, and several other rheumatic diseases over the past decade. With new biosimilars available, the hope is that in addition to more options for treatment, there may also be potential for cost savings for patients. However, this has yet to be determined.

“With more and more biosimilars becoming available, it’s important to note that they are not synonymous with a ‘generic drug’ because they are not identical to the original biologic,” Snow said. “The difference between biosimilars and the original reference biologic compares to the difference between two buildings created from the same blueprints. The buildings will look the same, be the same height and have the same number of rooms and functionality. But they might have different paint colors, doorknobs, or other small differences. However, those differences do not change how the building functions; both have a sound foundation. ”

The ACR aims to be a one-stop shop for patients and their healthcare providers to learn more about biosimilars. View all biosimilar resources from the patient education campaign at www.RDAM.org.

ACR Whitepaper Shows that Rheumatologists help Reduce Hospitalization Costs and Readmissions and Increase Quality of Care for Patients

The following is a press release from the ACR dated August 30, 2023.

The American College of Rheumatology (ACR) has developed a new whitepaper and position statement that outlines the Clinical and Economic Value of Rheumatology in various hospital and practice settings. The documents emphasize the benefit to the quality of patient care when a rheumatologist is a part of the care team and the positive financial impact rheumatologists have on healthcare systems and the economy.

“Many rheumatologists can attest to the value they bring to the care team at a healthcare system,” said Christina Downey, MD, corresponding author of the white paper and chair of the ACR’s government affairs committee. “Our goal with the paper and position statement is to emphasize what that value looks like from a preventive and financial perspective. A rheumatologist on the care team benefits patients, practices, and the economy.”

The paper, an analysis based on adjusted insurance claims data, focuses on two aspects of economic value: preventive value and direct value. The study compared markets with high and low rheumatologist supply and found that markets with an increased supply of rheumatologists had lower costs per patient. Ultimately, having an appropriate supply of rheumatologists is crucial for optimizing patient outcomes and increasing the economic benefits within healthcare systems.

Highlights from the white paper, and emphasized in the position statement, include:

  • Markets with a high supply of rheumatologists had lower average costs per patient for emergency room visits and hospitalizations than those with a low supply.
  • Rheumatologists generate $3.5M annually in revenue for healthcare systems by calculating direct and downstream billings associated with a full-time equivalent (FTE) rheumatologist. The calculation includes office visits, lab testing, radiology services, therapy referrals, consultations, etc.
  • The preventive value of rheumatology care was estimated to be $2,762 per patient per year, representing the cost savings associated with a high supply of rheumatologists.
  • The need for expensive and invasive joint replacement surgery due to rheumatoid arthritis has fallen substantially in recent years because of medications that only rheumatologists have the experience and expertise to administer.
  • Appropriate medical therapy with disease-modifying anti-rheumatic drugs (DMARDs) or biologics provided by rheumatologists can significantly decrease disease activity, modify comorbidities, and improve the quality of life for patients with rheumatoid arthritis (RA).
  • Systemic lupus erythematosus (SLE) is among the leading causes of death of young women in the United States. They have higher disease activity, morbidity, and mortality, which often leads to one of the highest 30-day hospital readmission rates among chronic diseases in the nation. Access to a rheumatology clinic post-discharge reduces rates of readmission in this group.
  • Rheumatologists have developed electronic registries, such as the Rheumatology Informatics System for Effectiveness (RISE), to nationally track and improve the quality of care administered by rheumatologists. This registry provides timely feedback on the performance of 24 quality metrics like functional status and receipt of DMARD prescriptions for RA patients.

“Emphasizing the impact rheumatologists have on the entire medical community is more important than ever, especially as we contend with an impending rheumatology workforce shortage coupled with an expected increase in patient demand for rheumatologic care” Downey said. “This paper supports our recruitment and sustainability efforts for the specialty by spotlighting the significant contributions we make every day and every year to patient outcomes, hospitals, and other healthcare practices.”

An ACR task force, commissioned by the ACR board of directors, worked with ECG Management Consultants to analyze the value of care given by rheumatologists. ECG has worked with other specialties, such as primary care, to help quantify their economic value.

View the full Clinical and Economic Value of Rheumatology: An Analysis of Market Supply and Utilization in the United States whitepaper and position statement at https://rheumatology.org/policy-position-statements.

ACR Reacts to List of Initial Drugs Impacted by Medicare Drug Price Negotiation Program

The following is a press release issued by the ACR on Tuesday, August 29, 2023.

The American College of Rheumatology (ACR) issued its initial reaction to the recent announcement from the Centers for Medicare & Medicaid Services (CMS) regarding which ten drugs will be subject to pricing negotiations, including Enbrel and Stelara, medications frequently used to treat rheumatic diseases.

As part of the implementation of the Inflation Reduction Act, Medicare can now negotiate the price of select medicines directly with pharmaceutical companies.

“It’s clear that lower costs are needed to improve rheumatology patients’ access to necessary drug therapies and treatments. High drug costs create an enormous financial burden for too many Americans living with rheumatic disease,” said Douglas White, MD, PhD, president of the ACR. “However, even with anticipated lower costs from negotiations, there is concern that patient access will remain limited if Congress fails to exempt Medicare Part B reimbursements from the sequestration reductions included in the Budget Control Act of 2011. On behalf of rheumatology providers, we are optimistic that these negotiations will yield savings for our patients. However, we ask that policymakers address the root causes of drug pricing increases throughout the drug supply chain to truly help patients afford their medications.”

ACR Introduces New Guidelines to Screen, Monitor and Treat Interstitial Lung Disease in Patients with Rheumatic Conditions

The following is a press release issued by the ACR on August 22, 2023:

The American College of Rheumatology (ACR) released summaries of two new guidelines for the Screening and Monitoring of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Disease and for the Treatment of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases (SARDs). The guideline summaries provide recommendations for screening, monitoring, and treating patients with rheumatic conditions like rheumatoid arthritis, systemic sclerosis (SSc), and idiopathic inflammatory myopathies (IIM) who may be at risk of interstitial lung disease (ILD) development or progression.

“Interstitial lung disease is a major cause of morbidity and mortality across several systemic autoimmune rheumatic diseases,” said Sindhu R. Johnson, MD, Ph.D., lead author on the guidelines and director of the University of Toronto’s clinical epidemiology & healthcare research program. “Guidance was needed for which tests to use for screening and monitoring this particular disease.”

A few recommendations from the guidelines include:

  • A conditional recommendation to screen patients at high risk of ILD with HRCT chest, PFTs, or both
  • A conditional recommendation to monitor ILD progression with PFTs and/or HRCT chest, albeit with different frequency.
  • A conditional recommendation to monitor with ambulatory desaturation testing.
  • A conditional recommendation against screening and monitoring with a 6-minute walk test distance (6MWD), chest radiography, and bronchoscopy.
  • For people with SARD-ILD other than SSc-ILD, we conditionally recommend glucocorticoids as a short-term, first-line ILD treatment.
  • A strong recommendation against glucocorticoids as a first-line ILD treatment for people with systemic sclerosis-associated ILD.
  • A conditional recommendation for use of mycophenolate, rituximab, cyclophosphamide, and azathioprine as first-line ILD treatment options.
  • A conditional recommendation against using leflunomide, methotrexate, TNF inhibitors, and abatacept as first-line ILD treatment options.
  • For people with SARD-ILD progression despite first ILD treatment, it is conditionally recommended to use mycophenolate, rituximab, cyclophosphamide, and nintedanib as treatment options.
  • For people with Sjogren’s-ILD and IIM-ILD progression despite first ILD treatment, a conditional recommendation against using tocilizumab as a treatment option.

“In those with systemic sclerosis-ILD, we strongly recommend against using glucocorticoids as a first-line ILD therapy or after ILD progression because glucocorticoids confer an increased risk of scleroderma renal crisis,” said Johnson. “Given the moderate certainty of the evidence for harm and low certainty of the evidence for benefit, we voted strongly against using this treatment for patients with systemic sclerosis-ILD.”

These new recommendations will provide guidance for clinicians on the screening, monitoring, and use of a wide range of treatments for patients with rheumatic diseases. The ACR developed these with the best available evidence and consensus across a range of expert opinions and incorporated patient values and preferences. These guidelines may reduce regional variation in patient care and may be used for patient advocacy.

“We know that early detection and hastened referral to care, in collaboration with pulmonology, is critical for the best patient outcomes,” said Sonye K. Danoff, MD, Ph.D., guideline author, pulmonologist and director of the Interstitial Lung Disease/ Pulmonary Fibrosis program at Johns Hopkins University School of Medicine. “Because symptoms of ILD (cough, shortness of breath, fatigue) can be subtle or result from other common diseases, the diagnosis of ILD can be delayed. Increasing awareness of the groups at highest risk for developing ILD and implementing appropriate screening and treatment practices should have long-term benefits.”

Full manuscripts have been submitted for journal peer review. Both are anticipated to be published in rheumatology journals by early 2024. View the complete summaries of the guideline recommendations at https://rheumatology.org/interstitial-lung-disease-guideline.

ACR Launches New Toolkit Aimed at Measuring RA Outcomes

The following is a press release issued by the ACR today August 9, 2023:

The American College of Rheumatology (ACR) is excited to announce the launch of its brand-new Rheumatoid Arthritis (RA) Measures Toolkit. In recent years, the landscape of RA care has witnessed remarkable progress, greatly improving outcomes for patients living with this chronic condition. The key to this success: vigilant monitoring of disease activity and functional status, which has enabled rheumatologists to tailor therapies and optimize treatment outcomes. The new RA Measures Toolkit will help rheumatologists and their practices harness the power of standardized RA outcome measures.

“There are currently no national resources available for rheumatologists that guide the effective implementation, collection, and use of disease activity and functional status outcomes for people with RA,” said Jinoos Yazdany, MD, MPH, Professor of Medicine and Chief of Rheumatology at San Francisco General Hospital, University of California, San Francisco and one of the lead authors of the RA Measures Toolkit. “We wanted to develop a tool that allows our community to share best practices and innovations in collecting RA outcomes.”

The toolkit includes a wealth of resources like training guides for nurses and medical assistants who are administering RA outcome surveys (e.g., RAPID-3, PROMIS-PF or patient global assessments), copies of the ACR recommended RA outcome measures (including versions in Spanish and Chinese), sample workflows that rheumatologists are using in different electronic health record systems, and videos featuring best practices from rheumatologists with highly effective strategies for collecting RA measures.

The toolkit also includes guidance on utilizing the ACR’s RISE registry, a powerful tool for tracking performance on the collection of RA measures. With RISE, rheumatologists can effectively monitor and evaluate the implementation of RA measures in their practice and track performance in the Quality Payment Program (QPP).

The new toolkit is not just an asset when it comes to providing rheumatologists with standardized outcome measures for assessing disease activity and functional status for people with RA, it’s also helpful for training medical staff on collecting RA outcome measures.

“Collecting RA outcome measures accurately and efficiently requires a team-based approach that includes nursing staff. Proper training of staff ensures that surveys are administered accurately and consistently, leading to reliable data collection,” said Yazdany. “Moreover, training can help staff engage patients, emphasizing the importance of collecting this information. By providing training materials for staff, the toolkit saves time and allows rheumatologists to focus on taking care of patients.”

The authors of the toolkit interviewed dozens of rheumatologists and their staff to gather best practices and innovations for collecting RA outcomes.

“The information gathered in the toolkit allows our community to learn from both the successes and challenges encountered by our colleagues. The toolkit includes examples of successful clinic workflows, tips for efficient RA outcome measure collection, as well as interviews with high-performing practices,” said Dr. Yazdany.

The RA Measures toolkit e-book can be viewed in full online at https://ratoolkit.kotobee.com/#/.

ACR Significantly Concerned with MedPAC’s Latest Recommendations to Cut Part B Drug Reimbursement

The following is a press release from ACR dated June 15, 2023:

The American College of Rheumatology (ACR) today expressed disappointment that the Medicare Payment Advisory Commission (MedPAC) has recommended yet another cut to physician reimbursement for infusing life-altering treatments as part of its June 2023 Report to the Congress: Medicare and the Health Care Delivery System.

In a letter to MedPAC, ACR took issue with the organization’s recommendation to Congress to keep a six percent add-on payment for the lowest-cost drugs, reduce the add-on payment for mid-to-high-level drugs, and add a payment cap for the costliest drugs.

“While we support efforts to rein in the cost of prescription drugs, we firmly believe that this policy would jeopardize provider practices and patients’ health by reducing access to life-changing provider-administered therapies,” said Douglas White, MD, PhD, president of the ACR. “We urge Congress to address the high cost of drugs at the root cause, like the opaque pharmacy benefit manager business practices, and not at the expense of providers.”

In its recommendation, MedPAC asserted that providers prescribe and administer the highest-price medications in order to receive higher reimbursement. ACR firmly rejects this premise. Administering Medicare Part B drugs in provider offices requires rheumatologists to buy the drug in bulk, maintain full-time staff to administer the treatment, and only bill Medicare after it has been given to the patient.

The six percent of the average sales price (ASP) add-on does not incentivize high-cost treatments, but rather offsets the costs of acquiring, storing, and administering treatments. As written, MedPAC’s recommendation would force providers to cut back on offering cutting-edge therapies or offer these medications at a loss, severely limiting patients’ access to medication and threatening practice viability.

“As providers, it is our job to prescribe the most appropriate treatment for our patients. The add-on payments are not considered in our clinical decision-making. We are concerned that policymakers are concentrating on these add-on payments rather than focusing on policies that address the true cause of drug prices,” said Christina Downey, MD, chair of ACR’s Government Affairs Committee. “The ACR will always express concern when provider payments to administer drugs are eschewed by widely supported policies. Hopefully, the bipartisan movement to reform the PBMs industry will yield meaningful change, and patients will see the benefits.”

ACR Endorses Strengthening Medicare for Patients and Providers Act

The following is a press release issued by the ACR as of yesterday, April 24, 2023:

Today, the American College of Rheumatology (ACR) commended the introduction of the Strengthening Medicare for Patients and Providers Act (H.R. 2474), a bipartisan bill intended to update Medicare physician payments to reflect the impact of the broader economy on physician practices.

The legislation, introduced by Reps. Raul Ruiz, M.D. (D-CA), Larry Bucshon, M.D. (R-IN), Ami Bera, M.D. (D-CA), and Mariannette Miller-Meeks, M.D. (R-IA), would adjust the Medicare Physician Fee Schedule (MPFS) based on inflationary updates measured by the Medicare Economic Index (MEI).

“For too long, specialty providers, like rheumatologists, have faced considerable uncertainty regarding their ability to continue providing needed care to patients,” said Douglas White, MD, PhD, president of the American College of Rheumatology. “The Strengthening Medicare for Patients and Providers Act represents a long-overdue adjustment to the Medicare Physician Fee Schedule that will help stabilize physician practices and ensure that beneficiaries have timely access to rheumatological care.”

The MPFS is the only major fee schedule without an automatic inflationary update. Consequently, Medicare provider reimbursement has failed to keep pace with broader economic realities. Recent analysis from the American Medical Association (AMA) demonstrates that when adjusted for inflation, Medicare physician payments declined 26% from 2001 to 2023, as consumer and practice costs rose.

“This legislation would allow Medicare to more accurately reflect the cost of practicing medicine, which has increased dramatically in recent years,” said Christina Downey, MD, chair of ACR’s Government Affairs Committee. “ACR looks forward to working to advance this important policy reform that will help build a sustainable payment system and protect access to care for patients with serious, chronic diseases.”