NEW YORK, NY (March 16, 2022)

People with disabilities who need catheters face significant challenges in getting health insurers to adequately cover the cost of supplies, leading some to even re-use their catheters, according to a study released today by the Spina Bifida Association and Duke Health.

The study reports that among all catheter users surveyed, the average annual out-of-pocket cost for catheters and catheter supplies is $789, and for users who must pay anything out-of-pocket, the average annual cost is $1,464.

The average amount that individuals pay out-of-pocket for catheters and catheter supplies varies significantly by type of health plan and by brand of commercial plan.

Among the catheter users surveyed with commercial coverage, those with United Healthcare reported having the lowest coverage, with 42 percent surveyed reporting that United Healthcare covered none of the catheter costs.

The average annual out-of-pocket costs for catheters and catheter supplies for users surveyed that were insured by United Healthcare was $2,188, followed by BlueCross BlueShield ($1,670) and Aetna ($1,385).

Cigna had the highest catheter coverage of the commercial health plans included in the report. Among the catheter users surveyed, 79 percent reported that the insurer covered “all or some” of their catheter costs.

More than one in ten (12%) of the users surveyed report reusing catheters, with a majority citing cost issues and lack of health plan coverage as a factor.

“Life can be challenging enough for people with disabilities and their families, and it’s unfair that insurance companies are only adding to this burden by refusing to cover every day, crucial medical supplies,” said Jenna Davis, whose 2-year-old daughter Merritt relies on catheters due to living with Spina Bifida.

“When our insurance company denied coverage for Merritt’s catheters, we were stunned. They had lumped catheters in the same supply category as bandages and gauze. Merritt uses over one thousand catheters a year, so to pay out of pocket for these, we’re talking thousands and thousands of dollars in excess medical costs,” added Davis.

People with a public or government health plan reported having better coverage for catheters than did those with a commercial or private plans, paying the least out-of-pocket (an average of $531/year).

The study, which surveyed 2,510 people with disabilities, was conducted to determine to what extent catheters are being covered by health insurers and health plans. The report was co-sponsored by United Spinal Association, Christopher & Dana Reeve Foundation, and Paralyzed Veterans of America.

The Spina Bifida Association along with all partner organizations and allied stakeholders will work with Congressional and federal agency officials to ensure that all people with disabilities who use catheters have the access and coverage they need to prescribed medical supplies to maintain their own health and to avoid costly and avoidable hospital readmissions, infection and even death.

To access a PDF of the full report, visit https://www.spinabifidaassociation.org/wp-content/uploads/Catheter-Survey-Key-Findings.pdf.

About the Spina Bifida Association

The Spina Bifida Association (SBA), founded in 1973, is the only national voluntary health agency dedicated to Spina Bifida. The mission is to build a better and brighter future for all those impacted by Spina Bifida. Fueled by dedicated healthcare providers, parents, adults, caregivers, and others, we are committed to helping people live longer, healthier lives through Research, Education & Support, Clinical Care, Network Building, and Advocacy.

About Duke Health

Duke Health is committed to conducting innovative basic and clinical research, rapidly translating breakthrough discoveries to patient care and population health, providing a unique educational experience to future clinical and scientific leaders, improving the health of populations, and actively seeking policy and intervention-based solutions to complex global health challenges. Underlying these ambitions is a belief that Duke Health is a destination for outstanding people and a dedication to continually explore new ways to help our people grow, collaborate and succeed.

About the Reeve Foundation

The Christopher & Dana Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research and improving the quality of life for individuals and families impacted by paralysis. By uniting the brightest minds in the field, we are working tirelessly to accelerate scientific discovery across the field of spinal cord research by investing in labs across the globe. Additionally, through a cooperative agreement with the Administration for Community Living, the Reeve Foundation’s National Paralysis Resource Center (NPRC) promotes the health, well-being, and independence of people living with paralysis, providing comprehensive information, resources, and referral services assisting over 100,000 individuals and families since its launch in 2002. The Reeve Foundation is committed to elevating our community’s voices and needs to achieve greater representation and independence. We meet all 20 of the Better Business Bureau’s standards for charity accountability and hold the BBB’s Charity Seal. For more information, please visit our website at www.ChristopherReeve.org or call 800-225-0292.

About Paralyzed Veterans of America
Paralyzed Veterans of America is a 501(c)(3) non-profit and the only congressionally chartered veterans service organization dedicated solely for the benefit and representation of veterans with spinal cord injury or diseases like MS and ALS. For 75 years, the organization has ensured that veterans receive the benefits earned through service to our nation; monitored their care in VA spinal cord injury units; and funded research and education in the search for a cure and improved care for individuals with paralysis.

As a life-long partner and advocate for veterans and all people with disabilities, Paralyzed Veterans of America also develops training and career services, works to ensure accessibility in public buildings and spaces, and provides health and rehabilitation opportunities through sports and recreation. With more than 70 offices and 33 chapters, Paralyzed Veterans of America serves veterans, their families, and caregivers in all 50 states, the District of Columbia, and Puerto Rico. Learn more at PVA.org.

About United Spinal Association

Formed in 1946 by paralyzed veterans, United Spinal is a national 501(c)(3) nonprofit membership organization dedicated to empowering people with spinal cord injuries and disorders (SCI/D), including veterans, to live successful and fulfilling lives. Membership is free and open to all individuals with SCI/D, with over 53,000 members across 49 chapters nationwide. Known for its revolutionary advocacy efforts, United Spinal played a significant role in writing the Americans with Disabilities Act, provided important contributions to the Fair Housing Amendments Act and the Air Carrier Access Act, and was instrumental in attaining sidewalk curb ramps and accessible public transportation in New York City, which created the standard accessibility model used in many United States cities.