May 21, 2026

From advocacy and healthcare policy to clinical guidance and emerging research, this issue highlights the latest developments shaping the future of rheumatology care, practice, and patient access. Explore updated JIA treatment guidelines, Capitol Hill advocacy efforts, new RISE registry insights, and more below.

ACR Releases Updated Treatment Guidelines for Juvenile Idiopathic Arthritis

The ACR has released updated clinical practice guidelines for the treatment of juvenile idiopathic arthritis (JIA), providing clinicians and families with clearer, evidence-based recommendations for managing this complex childhood disease. These guidelines reflect the latest research and therapies, emphasizing early, effective control of inflammation to protect growing joints and improve long-term outcomes.

The updated recommendations support more proactive use of disease-modifying antirheumatic drugs (DMARDs) and biologics in appropriate patients, while reducing reliance on prolonged NSAID and glucocorticoid use. They also offer refined guidance for treating systemic JIA and macrophage activation syndrome, as well as practical advice on monitoring, tapering therapy, and shared decision-making with families. Together, these updates aim to help care teams achieve more rapid and consistent disease remission for children living with JIA.

Read the press release →

Watch the video →

ACR Advocates Head to Capitol Hill to Push for Affordable Treatments and Stronger Patient Access

At this year’s Rheum Advocacy Conference, members of the ACR/ARP and patients will bring a unified message to Capitol Hill that patients with rheumatic diseases need more affordable treatments and reliable access to care.

As members and patients meet face-to-face with lawmakers, they will highlight several policy priorities aimed at lowering costs, improving coverage, and protecting access to essential therapies for millions of patients nationwide.

Making Treatments More Affordable

Skyrocketing drug costs remain one of the most significant barriers to care for patients with rheumatic diseases. ACR/ARP members and patients will urge Congress to advance policies that increase transparency and accountability in the prescription drug supply chain, particularly among pharmacy benefit managers (PBMs).

By supporting PBM transparency reforms, advocates aim to shine a light on pricing practices that can drive up out-of-pocket costs and limit patient access to needed medications. Greater oversight can help ensure that savings are passed on to patients rather than absorbed within the system.

Take action →

Protecting Access to Complex Therapies

Many rheumatology patients on Medicare rely on physician-administered therapies covered under Part B. However, ongoing reimbursement challenges threaten the sustainability of these treatments in community-based settings.

ACR members will call on Congress to support the Protecting Patient Access to Cancer and Complex Therapies Act, which would stabilize Medicare reimbursement and help ensure that patients on Medicare can continue receiving infusions and other advanced therapies in their local communities—without unnecessary delays or disruptions.

Take action →

Safeguarding Medicare Access

Medicare remains a lifeline for many patients with chronic rheumatic conditions, yet payment instability and administrative burdens can make it harder for providers to deliver care.

During their meetings, ACR advocates will emphasize the need for long-term Medicare payment reform, including solutions that address physician payment cuts and support practice sustainability. Ensuring a stable Medicare system is critical to maintaining access for seniors and individuals with disabilities who depend on consistent, specialized care.

Take action →

Protecting Medicaid Coverage

Medicaid plays a vital role in covering vulnerable populations, including low-income adults and children living with rheumatic diseases. Proposed changes that limit eligibility or reduce benefits could have serious consequences for patient outcomes.

Advocates will urge lawmakers to protect and strengthen Medicaid by preserving coverage, maintaining access to specialists, and ensuring that patients can receive timely, appropriate treatment regardless of income.

Take action →

A Unified Voice on Capitol Hill

By advocating for PBM transparency, stable Medicare reimbursement, and strong Medicaid protections, ACR/ARP members and patients are working to advance policies that put patients first. Their message to Congress is clear: improving affordability and access to care is essential to better outcomes for people living with rheumatic diseases. Add your voice by contacting your lawmakers through the action links above.

Practice Innovation Summit Returns with Focus on Sustainability and Strategy

The ACR will host its second annual Practice Innovation Summit, November 6–7 in Orlando, Florida, immediately preceding ACR Convergence 2026. The two-day meeting will bring together rheumatologists, practice leaders, administrators, and advanced practice providers to explore strategies for strengthening independent rheumatology practices.

Focused on today’s evolving healthcare landscape, the summit will cover financial performance, operational efficiency, workforce stability, and long-term sustainability. Sessions will address billing and coding, payer dynamics, workforce retention, infusion management, artificial intelligence, contracting strategies, and practice operations.

Friday’s agenda emphasizes reimbursement, operations, and innovation, including coding optimization, audit readiness, infusion models, AI integration, ultrasound use, and workforce challenges. The program also includes advocacy and policy updates on private practice issues, payer trends, and insurance-related developments. A networking reception will connect attendees, fellows-in-training, and practice administrators.

Saturday will focus on long-term strategy and leadership, with sessions on value-based contracting, financial oversight, workforce recruitment and retention, and onboarding advanced practice providers. A dedicated track for office managers and operations staff will highlight their role in practice success.

The summit reflects ACR’s ongoing commitment to supporting independent rheumatology practices facing reimbursement pressures, administrative burden, workforce shortages, and market consolidation. Registration details and speaker information will be announced soon. Save the dates and contact the ACR’s practice team at practice@rheumatology.org if you have questions about this year’s Practice Innovation Summit.

Healthcare on the Docket: SCOTUS Makes Treatment Access Decision with Rheumatology Impact

The ACR has been tracking an access issue in the Supreme Court (SCOTUS) over the past few weeks after the state of Louisiana filed suit against the Food and Drug Administration (FDA) claiming that mail-order mifepristone “cancels Louisiana’s ban on medical abortions and undermines its policy” on abortion access. The 5th U.S. Circuit Court of Appeals previously stopped mail-order mifepristone access even in states without abortion restrictions, requiring it be dispensed in person. Over 60% of abortions in the U.S. involve medication abortion, and about one-quarter of all U.S. abortions are now provided through telehealth since the Dobbs v. Jackson Women's Health Organization decision, a 2022 U.S. Supreme Court ruling that eliminated the federal constitutional right to abortion. SCOTUS paused that Court of Appeals decision through two administrative stays at the request of two manufacturers of mifepristone, GenBioPro and Danco Laboratories. On May 14, SCOTUS decided that mifepristone will remain available via telehealth and dispensed via mail-order pharmacies while the FDA’s appeal proceeds in court.

As stated in the ACR’s Health Policy Statements, the College is deeply concerned about policies interfering with patient-physician shared-decision making. Rheumatology patients often face complex conditions in which it may be medically necessary to delay, and in some cases terminate, a pregnancy to prevent serious or life-threatening complications of chronic inflammatory diseases. Planning for a medically safe pregnancy often requires access to contraception or the use of assisted reproductive technology. Restrictions that limit these options may endanger patient safety or quality of life and hinder the physician’s ability to provide evidence-based care. ACR opposes policies or court decisions that limit access to comprehensive reproductive healthcare.

The Missing Link: How RISE’s Tokenized Data Fills Critical Gaps in Rheumatology Research

The ACR’s RISE (Rheumatology Informatics System for Effectiveness) registry now enables data linkages through tokenization, expanding how clinicians and investigators can understand patients with chronic conditions beyond what is captured during routine rheumatology clinic visits. Powered by advances in tokenization, deidentification, and data linkage, this capability allows disparate healthcare data sources to be connected securely while preserving patient privacy.

According to Jeffery Curtis, MD, MPH, Professor of Medicine in the Division of Clinical Immunology and Rheumatology at the University of Alabama at Birmingham and board certified in both rheumatology and clinical informatics this marks a major step forward for the field and for RISE. Long known for aggregating electronic health record (EHR) data from more than 1,000 rheumatologists, RISE can now offer researchers linked data that extends visibility beyond the registry’s traditional boundaries.

“RISE has a huge number of strengths as the world’s largest electronic health record (EHR)-enabled rheumatology registry,” Dr. Curtis explained. “But it only includes the data captured by rheumatologists recorded at routine rheumatology provider visits.” By offering tokenized data for research, RISE can broaden that view, enabling investigators to study critical aspects of patient care, such as visits to other specialists, hospitalizations, and medication adherence, that have historically been absent in RISE which has been limited to data recorded from rheumatology providers in their EHR.

Defining the Technology: Tokenization and Data Linkage

At the core of this capacity are two related concepts: tokenization and data linkage.

Data linkage refers to the process of connecting information from multiple healthcare systems, such as electronic medical records, insurance claims, pharmacy data, other registries, and other types of data (e.g., patient registries, lab data. information about social determinants of health) to create a more comprehensive patient record. As Dr. Curtis described, “data linkage enables understanding what is going on with patients beyond the confines of what gets recorded at rheumatology visits; it allows us to know what’s happening in the larger healthcare ecosystem.”

Tokenization, meanwhile, is a privacy-preserving mechanism that makes data linkages possible. It converts identifiable personal information, such as name, sex, and date of birth, into a unique, encrypted string that cannot be reverse engineered.

Dr. Curtis likened the process to a historical encryption system: “Tokenization is like the Enigma code machine used during World War 2; I take identifiable information about a patient, run it through an algorithm, and the algorithm turns that previously identifiable information into a long string of characters that cannot be linked back to the individual.”

Because multiple data systems can generate the same token using identical algorithms, datasets can be linked without sharing sensitive identifying details. “We can share those tokens, because they don’t doesn’t mean anything out of context,” Dr. Curtis said.

Filling Critical Data Gaps

The ability to link datasets can help address important gaps in rheumatology research and patient care.

One key gap has been visibility into care provided outside the rheumatologist’s office. “Did they see a pulmonologist, or a nephrologist? What did your patient’s primary care physician do?” Dr. Curtis asked. “You can’t know with rheumatology-only EHR data.”

Another major gap involves medication adherence. Physicians may prescribe treatments, but without pharmacy data, they cannot confirm whether prescriptions are filled or taken consistently. “Using only EHR data, I know about what was prescribed to the patient, but I don’t have the slightest idea whether the patient filled it once, 12 times, or maybe the patient never even picked it up,” Dr. Curtis noted. With linked pharmacy claims, however, “I know that patient received 30 days of prednisone on this day, and this day, and this day, each time that they refilled it.”

Other previously siloed outcomes include hospitalizations and mortality. “When you die, you don’t go back and see your rheumatologist,” Dr. Curtis said. Events like hospitalized heart attacks, infections, or fractures are not typically and systematically captured in specialty care records. “All of those gaps are only knowable with externally linked data.”

Broader Impact: Expansion and Increased Knowledge

As healthcare continues to become more data-driven, tokenization and data linkage represent a pivotal step forward, one that offers a more comprehensive way to understand rheumatic diseases and ultimately improve patient care.

To learn more about how you can make research discoveries with tokenized data, reach out to the ACR RISE team at RISE@rheumatology.org. or visit the RISE for Discovery page.

Disclosures: Jeffery Curtis, MD, MPH

ACR Raises Concerns Over UnitedHealthcare Policy on Lupus Diagnostic Test

The ACR is urging UnitedHealthcare to reconsider its decision to designate the AVISE® Lupus test (PLA code 0312U) as non-reimbursable, citing concerns about reduced access to an important diagnostic tool for systemic lupus erythematosus (SLE).

In a March 16, 2026, letter to UnitedHealthcare, the ACR emphasized the challenges of diagnosing lupus, particularly in early stages when symptoms are nonspecific and traditional biomarkers may be inconclusive. The College highlighted evidence supporting multianalyte assays with complement activation products (CB-CAPs), noting their ability to both improve diagnostic accuracy and identify patients with active lupus, potentially reducing unnecessary delays in care.

The ACR encouraged UnitedHealthcare to adopt clear clinical criteria that support appropriate use rather than a blanket non-reimbursement policy. The ACR remains committed to working collaboratively to ensure patients have access to timely diagnosis and care.

New RISE Registry Research Webinar: How Switching Anti-TNF Biologics Impacts RA Disease Activity

What happens when patients with persistent RA symptoms switch from IV infliximab to IV golimumab? Researcher John R. P. Tesser, MD, FACP, FACR, MACR, from Arizona Arthritis & Rheumatology used ACR RISE registry data that reveals significant improvements.

Join us for a free 30-minute webinar on June 10 at 3:00 PM ET to hear:

• Key findings showing mean CDAI scores improved from 21.3 to 14.1 within 6-9 months post-switch
• Real-world evidence on sustained disease control throughout 12 months
• Practical insights for managing patients who may benefit from biologic switching
• Live Q&A to address your clinical questions

This is a valuable opportunity to learn how research using RISE registry data is informing treatment decisions and improving patient outcomes in rheumatology.

Disclosures: John R. P. Tesser, MD, FACP, FACR, MACR