April 9, 2026
The Rheum Advocate
FDA Warns of Serious, Sometimes Fatal Liver Injury Linked to Tavneos (Avacopan) in ANCA-Associated Vasculitis Patients
The Federal Drug Administration (FDA) has issued a Drug Safety Communication warning of serious, sometimes fatal drug induced liver injury (DILI), including vanishing bile duct syndrome (VBDS), in patients treated with Tavneos (avacopan) for severe active ANCA associated vasculitis.
Adverse events:
- FDA identified 76 postmarketing DILI cases with a likely link to avacopan; 74 were serious, including 54 hospitalizations and 8 deaths.
- Seven patients developed biopsy confirmed VBDS; all were hospitalized and three died, with median onset 46 days after starting therapy.
FDA recommends the following:
Monitoring and management
- Checking liver tests every two weeks for the first month, monthly for the next five months, and then as clinically indicated
- Promptly discontinue Tavneos treatment, evaluate patients, and consider alternative treatments for patients with severe active ANCA-associated vasculitis if:
- Alanine aminotransferase (ALT) or aspartate aminotransferase (AST) is >3 times the upper limit of normal (ULN) or alkaline phosphatase (ALP) is >2 times the ULN
- A patient presents with evidence of symptomatic cholestasis such as jaundice or pruritus
- If liver test abnormalities or symptoms of liver injury do not improve, patients should be referred to a hepatologist for further evaluation
Counseling and reporting
- Counsel patients to report fatigue, nausea, itching, pale stools, jaundice, dark urine, abdominal swelling, or right upper quadrant pain promptly
- Suspected Tavneos associated liver injury should be reported to FDA MedWatch and factored into shared decision making about ANCA associated vasculitis treatment strategies
For more information contact the FDA at 855-543-DRUG (3784) or druginfo@fda.hhs.gov.
Using ACR’s Legislative Action Center to Protect Rheumatology Care
Every individual advocate plays a critical role in federal policymaking for rheumatology. By contacting lawmakers directly, rheumatology professionals and patients can highlight real world impacts of legislative and regulatory decisions on access to care, treatment affordability, and the rheumatology workforce. The ACR’s action alerts make taking action easy and a natural extension of professional responsibility to protect patients and the specialty.
Key federal issue campaigns
The legislative action alert center organizes ACR’s current advocacy priorities into themed federal campaigns, each with ready to send communications that users can personalize.
Research Funding
- Urge Congress to fund arthritis research at the Department of Defense
- Urge Congress to protect funding for biomedical research
Barriers to Access
- Urge Congress to protect patient access to vaccines
- Urge Congress to protect Medicaid
- Modernize Prior Authorization and ensure access to care
- Step therapy: patients first instead of "Fail First"
Physician Payment
- Stabilize reimbursement to protect patient access to complex rheumatology therapies
- To Preserve access to care, Congress must repair Medicare’s broken payment system
Access to Treatments
- Protect patients from soaring out-of-pocket costs
- Make pharmacy benefit managers transparent & accountable
Medical Workforce
- Urge Congress to reduce barriers for qualified healthcare professionals to serve U.S. patients
- Increase the pipeline for the medical workforce by easing the burden of education debt
- Grow the medical workforce to adequately meet patient demand
Telehealth
Each campaign gives advocates a focused policy ask and a direct route to communicate that ask to Congress.
Staying engaged with action alerts
To make advocacy easy and timely, the ACR encourages visitors to subscribe to legislative action alerts from the action center. These alerts notify subscribers when Congress is considering key bills or regulatory changes with major implications for rheumatology. With this system, members receive concise background information plus a pre-drafted message, so they can respond quickly when their voice is most likely to influence the outcome.
ACR Members Drive National Impact with Letter to Editor Campaign
ACR members turned their expertise into action this year partnering with patients and other professionals to place letters to the editor (LTE) in outlets across the country. These LTE’s elevated ACR’s priority issues in trusted local media, helping policymakers understand how federal decisions affect real rheumatology issues and patients in their home districts.
Between the start of ACR Convergence in November 2025 through March 2026, 35 members across 23 states contributed to 22 published LTEs, generating an estimated reach of more than 21 million people and an estimated media value of nearly $200,000. Topics ranged from Medicare physician payment reform and access to rheumatology care, to vaccine policy, Medicaid cuts, research funding, and pharmacy benefit manager transparency.
By securing placements in local and regional outlets—from major metropolitan newspapers to community publications, the campaign translated complex policy priorities into narratives grounded in patient and provider experience. This visibility not only amplified ACR’s advocacy agenda but also validated it through the voices of those living and working with rheumatic disease every day. Thank you to all members who participated in this project!
More LTE opportunities are planned as ACR continues to mobilize members as advocates in their own communities. Interested in participating in the next LTE effort?
Make Your Voice Heard! Your Guide to Voting Resources
As a member of the rheumatology community, your voice plays a critical role in shaping the future of patient care. While RheumPAC and ACR’s Washington, DC team are working to educate current lawmakers about the issues that matter most to you and your patients, building the next Congress is just as important.
One of the most effective ways to make an impact is by participating in the electoral process. The ACR encourages you to take advantage of the resources below to stay informed, ensure you are registered, and understand your voting options:
- Vote.org: A trusted, nonpartisan resource to check your voter registration status, find your polling place, and review what is on your local ballot
- Vot-ER: A nonpartisan organization focused on integrating civic engagement into healthcare, offering tools designed specifically for healthcare professionals and settings
Before Election Day on November 6, 2026, be sure to confirm your polling location, voting hours, and any state-specific requirements by visiting your state’s Board of Elections website.
By staying informed and participating in the voting process, you help ensure that policymakers understand the real-world challenges facing rheumatology professionals and the patients you serve.
The ACR does not endorse, represent, or guarantee the accuracy or reliability of information obtained from third-party sources.
New Direct Line to IPSC Expands Member Resources for Independent Practice
The ACR’s Independent Practice Subcommittee (IPSC) has launched a new dedicated email address — ipsc@rheumatology.org — to better connect with members and streamline communication.
The IPSC focuses specifically on the needs and challenges facing rheumatologists in independent and community-based practice settings. Its work includes elevating issues confronting private practice rheumatologists, while ensuring that the perspectives of private practice physicians are reflected across the ACR.
Why this matters for members
The new email address provides a direct and accessible way for members to engage with the IPSC, whether you are currently in independent practice or considering a transition. The subcommittee serves as a valuable resource for:
- Navigating practice management challenges
- Sharing real-world issues affecting independent rheumatology practices
- Exploring pathways to starting, maintaining, or transitioning to private practice
Members are encouraged to reach out to ipsc@rheumatology.org with questions, concerns, or ideas. The IPSC relies on member input to guide its work and ensure that ACR initiatives reflect the realities of independent practice.
Don’t Miss This Webinar! Get Ready for New Lupus Quality Measures in 2026 MIPS Reporting
Join us May 15 for a 30-minute webinar to learn how to implement new lupus quality measures now available in the ACR’s RISE registry and reportable for the 2026 MIPS performance year.
Developed with CDC support, these measures address key gaps in systemic lupus erythematosus (SLE) care and focus on:
- Appropriate hydroxychloroquine use
- Reducing prolonged glucocorticoid exposure
- Capturing patient-reported physical function
Hear directly from the volunteer leaders behind the measures and get practical guidance on using RISE data to identify care gaps, improve outcomes, and support your MIPS reporting.