Below is a press release dated May 7, 2026 from ACR:

New research using death certificate data from 52,942 females, reveals that systemic lupus erythematosus (lupus) is a leading cause of years of potential life lost among young women in the United States, underscoring the disease’s significant and often underrecognized public health burden.

The study, titled “Lupus, a leading cause of years of potential life lost in young women: implications for public health priorities and research funding,” published in ACR Open Rheumatology, finds that lupus disproportionately affects women during their most productive years, contributing to premature mortality and long-term societal impact.

Years of potential life lost (YPLL) is a key public health metric that measures premature death. The study shows that lupus ranks among the top causes of YPLL in young women. This study adds to the authors’ previous work that showed that lupus is among the leading causes of death —particularly among Black, Hispanic, and other historically underserved populations—highlighting persistent health disparities.

“These findings reinforce what the rheumatology community has long observed: lupus is not only a chronic disease but a life-threatening condition that cuts lives short,” said lead researcher Ram Raj Singh, M.D. at the David Geffen School of Medicine at the University of California at Los Angeles (UCLA).  “Despite this, it remains underfunded relative to its impact.”

Key findings from the study include:

• Lupus is a leading contributor to premature mortality among women of reproductive age.
• The societal and economic costs of lupus are amplified by its impact during peak working and caregiving years.

The authors emphasize that the findings should prompt policymakers and research agencies to re-evaluate funding priorities. Despite its high burden, lupus research funding has historically lagged behind other diseases with comparable or lower YPLL.

Advocates say the study strengthens the case for:

• Increased federal investment in lupus research through agencies such as the National Institutes of Health (NIH).
• Expanded access to early diagnosis and specialized care.
• Development of safe, effective, and affordable treatments for lupus.
• Public health initiatives aimed at reducing disparities and improving outcomes in high-risk populations.

“Addressing lupus requires a coordinated national strategy,” said Andras Perl, MD, PhD, Editor-in-Chief of ACR Open Rheumatology. “We have an opportunity to save lives by investing in research, improving access to care, and raising awareness of this devastating disease.”

Lupus is a chronic autoimmune disease in which the immune system attacks healthy tissues, leading to inflammation and damage across multiple organ systems. There is currently no cure.

The following is a press release from ACR dated September 9, 2024:

The ACR Encourages Patients with Rheumatic Diseases to Implement Self-Management Strategies to Improve Quality of Life

American College of Rheumatology (ACR) experts identified research suggesting that patient self-management is not as prevalent as it should or could be despite the improvements patients experience when implemented. This is due, in part, to many patients lacking awareness and motivation to self-manage and thinking the only way to control their disease is by taking their medication.

Today, the ACR launched its patient education campaign, Self-Management for Patients Living with Rheumatic Conditions for Rheumatic Disease Awareness Month (RDAM). The campaign addresses the current knowledge gap, educates patients about self-management techniques, and encourages them to collaborate actively with their rheumatology healthcare team to manage their rheumatic condition.

The campaign does not delve into self-care practices yet focuses on self-management strategies for managing a patient’s rheumatic condition.

“One thing that is important to note is that self-management is often used interchangeably with self-care, but they are different. Self-management is an individual’s day-to-day management of their chronic conditions over the course of an illness,” says Bhakti Shah, MD, a rheumatologist with Crystal Run Healthcare in Middletown, N.Y., and the campaign’s medical spokesperson. “Self-care consists of those tasks performed by healthy people to prevent illness rather than manage an existing illness.”

The campaign highlights five overarching strategies patients can incorporate in their lives. They are:

• Stress Management –Rheumatic conditions can impact a person’s physical and mental health. Patients can create relaxation practices like meditation, self-reflection, or journaling.
• Medication Adherence –Patients should partner with a clinician to understand their medications, what aspects of their disease they treat, and the importance of continuing these medications.
• Lifestyle Changes –Regular exercise and eating a healthy diet are essential for general well-being and may help improve symptoms.
• Communicate and Collaborate with a Healthcare Team –Patients should maintain open communication with their rheumatology healthcare team, including the rheumatologist, physical therapist, and other specialists.
• Maintain a Support System—Patients should ask family or friends for help when needed, especially during a flare.

“Each patient encounter is an opportunity for rheumatologists (and rheumatology health professionals) to remind patients to incorporate self-management techniques in their lives. During my patient visits, I try to review topics such as medication adherence, physical activity and quality of life and I remind them that we are a team and collaboration will lead to improved outcomes for them,” Dr. Shah continues. “We hope this campaign will empower patients to take a more proactive role in their treatment journey.”

Rheumatic Disease Awareness Month is recognized each September, drawing attention to more than 100 conditions under the umbrella of rheumatic diseases. Rheumatoid arthritis, osteoarthritis, and lupus are some of the most commonly known. Others include Sjögren’s syndrome, gout, scleroderma, and psoriatic arthritis. More than 53.2 million American adults—one in four—have been diagnosed with rheumatic disease.

To view the full self-management toolkit, visit www.RDAM.org.

The following is a press release from ACR dated June 24, 2024:

The American College of Rheumatology (ACR) has submitted to the United States House Committee on Ways and Means Health Subcommittee a response to the recent subcommittee hearing, The Collapse of Private Practice: Examining the Challenges Facing Independent Medicine, highlighting issues facing private practices, including inadequate reimbursement for Medicare physicians, burdensome prior authorization policies, and the growing shortage of physicians in the workforce.

In its letter, ACR notes that rising inflation, cuts to reimbursements to below the cost of treating Medicare patients and growing operating costs threaten the viability of private practices. To address these concerns, ACR advocates for legislation to address two persistent challenges impacting Medicare payment to physicians: inflation and a mandatory budget-neutrality requirement. The Strengthening Medicare for Patients and Providers Act (H.R. 2474) would add a permanent annual inflationary update for Medicare physician payments, while the Provider Reimbursement Stability Act (H.R 6371) would help to curtail the negative impact of budget neutrality requirements by raising the current budget neutrality threshold from $20 million to $53 million and requiring its regular re-evaluation.

Given the administrative burden created by costly prior authorization policies, ACR noted its support for efforts to streamline the process so that healthcare team members can spend less time negotiating with insurance companies and more time taking care of patients.

Finally, the shrinking physician workforce creates significant challenges across the healthcare continuum. Unless policymakers intervene, the problem will continue to worsen as fewer physicians are asked to meet the treatment needs of a growing and aging patient population. To address this issue, ACR recommends policies to increase training opportunities, address burnout and early retirement in the healthcare workforce, mitigate the impact of medical education debt, and expand workforce access for visa-holding physicians.

“Private practices are essential to our communities and should be supported by policy,” the letter concludes. “The ACR looks forward to partnering with the Ways & Means Health subcommittee as legislative solutions are considered.”

ACR’s full response letter is available here.