The push to remove harmful chemicals from urinary catheters
By BetterCaths Coalition Staff
After five years of advocating for catheter user health education on their risk for bladder cancer, the BetterCaths Health Equity Coalition has come together to drive legislation to protect people with disabilities from the harmful phthalate chemical DEHP that is present in some urinary catheters.
Iowa State Representative Josh Turek (D-Iowa) has introduced the Better Caths for Iowa Act (H.F. 387) to review the use and reimbursement of certain catheters under the Medicaid program — specifically urinary catheters made with the harmful chemical DEHP.
A four-time Paralympian who was born with spina bifida, Turek and his basketball team most recently brought home gold from the 2020 Tokyo Paralympics.
“Bladder cancer took the life of Dale Ericksen, my wheelchair basketball coach at Southwestern Minnesota State University,” says Turek. “I introduced this bill to improve health equity for Iowans with disabilities and I encourage state and federal representatives nationwide to introduce similar legislation.”
BetterCaths, a grassroots volunteer organization of bladder cancer survivors who use catheters, disability advocates and urological industry experts, assisted in drafting the bill’s language and provided supporting clinical evidence.
The legislative effort was established in honor of Karen Fernbaugh-Roy, a licensed clinical social worker who was paralyzed during an armed robbery. Fernbaugh-Roy served as the 2019 Ms. Wheelchair America and has advocated for health equity and health access for people with disabilities for decades.
Fernbaugh-Roy used urinary catheters made with DEHP, a known carcinogen, for more than 20 years before discovering her invasive medical supplies had a cancer warning label on them.
She was unaware about the warnings because her doctor and her medical supply provider had failed to inform her that some catheters have cancer warning labels. They also did not inform her that she had a much higher risk for developing bladder cancer due to using urinary catheters.
Two years after this horrifying realization, Fernbaugh-Roy was diagnosed with a high-grade endothelial bladder cancer.
In 2022, more than 140 urinary catheter users responded to a BetterCaths research survey that found:
- 90% of respondents were not told by their doctor or catheter supplier if the catheter they presently use has a known carcinogen warning label.
- 90% of survey respondents did not have the opportunity to choose alternatives to catheters with carcinogen warning labels.
Most people also don’t realize what the DEHP exposure level is for someone who uses urinary catheters that are made with this toxic chemical.
- If you use an intermittent catheter 6 times per day, every day (365 days/yr), for 20 years, you will put that DEHP catheter inside your body 43,800 times.
- If you use an indwelling catheter 24 hours per day, every day (365 days/yr), for 20 years, you will have that DEHP catheter inside your body on a constant basis for 7,300 days.
Learn more about the issue and supporting clinical evidence at www.BetterCaths.com.