Catheter Legislation

BetterCaths and Rep. Josh Turek Work to Remove Harmful Chemicals from Catheters

By BetterCaths.com

AAfter 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, Josh 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," Josh shares. "I introduced this bill to improve health equity for Iowans with disabilities," he adds. "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.

Representative Turek's bill has broad support from health advocacy organizations nationwide, including the Iowa Developmental Disabilities Council, the Iowa Chapter of the United Spinal Association and Spinal Cord Peer Support USA (the nation's largest online support community for people who have SCI/D).

Other supporting organizations include the Greater Boston Chapter of United Spinal Association (based in Spaulding Rehab hospital), United Spinal Association of Houston, The Natalie Barnhard Center for SCI Rehabilitation and Recovery and the Western New York Chapter of United Spinal.

Additional national organizations supporting a ban on DEHP in urinary catheters will be announced soon.

BetterCaths community champions who are educating the disability community about this health equity initiative include: Gina Schuh, JD; Linda Norah-Davis, JD; Natalie Barnhard; Chris Collin; Chad Waligura, Ashlee Lundvall; Gloria Suarez; Dani Izzie; Jay Erwin; Erik Kondo; Kim Harrison; Adam Lane; Ashley Olson and Mason Ellis.

The BetterCaths team would love to include you too! Visit BetterCaths.com to join the coalition of disability leaders.

Karen Fernbaugh Roy: Her Bladder Cancer Journey Inspires Legislative Action

The BetterCaths legislative effort was established in honor of Karen Fernbaugh Roy, a licensed clinical social worker who was paralyzed while being robbed at gun point as a college student. Karen served as the 2019 Ms. Wheelchair America and has advocated for health equity and health access for people with disabilities for decades.

Karen 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 did not know previously 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, Karen was diagnosed with a high-grade endothelial bladder cancer.

9 Out of 10 Catheter Users Are Not Educated About Catheter Warning Labels

Sadly, the BetterCaths coalition is aware that Karen's experience is not rare. 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.

Sign the BetterCaths petition to ban DEHP in urinary catheters.

Do you use catheters? Take the BetterCaths user survey!

The Danger of DEHP in Urinary Catheters

Urinary catheters are often made from PVC, a form of plastic. Phthalate chemicals like DEHP (Di(2-ethylhexyl)phthalate) make plastic and PVC products more flexible. A vast body of scientific evidence proves that DEHP causes reproductive and endocrine health issues, and cancer, in humans.

"People who depend on urological catheters to stay alive should not have to worry about cancer-causing chemicals in these invasive medical devices," says Representative Turek.

"I'm particularly concerned about DEHP's association with cancer because the bladder cancer rate for people who use urinary catheters is four times the national average. Patients who have indwelling catheters are diagnosed with bladder cancer from 16 to 28 times the national average," he continues. "Even worse, people who use catheters die eight times more often from bladder cancer than those who don't cath."

"I am honored to build upon the legacy of the Americans with Disabilities Act, which originated in Iowa, by introducing the Better Caths for Iowa Act," Turek adds. "This is a common sense, non-partisan bill."

The Better Caths for Iowa Act is the first piece of legislation in the country that aims to lower the bladder cancer mortality rate for people whose lives depend on using urological catheters. It protects Iowa Medicaid patients from daily exposure to the toxic chemical (DEHP) in some commonly used urinary catheters.

This bill is part of Representative Turek's ongoing effort to improve healthcare for every Iowan and health equity for people with disabilities while promoting fiscally and morally responsible healthcare reform policies.

Iowans who depend on urological catheters for bladder function may have one of the following medical conditions:

• prostate cancer,
• Parkinson's disease,
• spina bifida,
• spinal cord injury,
• traumatic brain injury,
• multiple sclerosis,
• cerebrovascular accident,
• dementia,
• transverse myelitis and
• cauda equina.

The Better Caths for Iowa Act Protects the Disability Community

HF 387, the Better Caths for Iowa Act requires the following actions:

• The Iowa Medicaid program shall not reimburse claims for catheters made with Di(2-ethylhexyl)phthalate (DEHP) until after the completion and pending the results of a historical rate of bladder cancer review that includes the Medicaid director's recommendation regarding which catheters should be reimbursable.
• The Medicaid director shall inform Medicaid providers and patients of the prohibition against reimbursement of catheters made with DEHP during the pendency of the review and shall make available to Medicaid providers and patients a list of alternative products that are not made with DEHP and that are reimbursable under Medicaid when provided to Medicaid recipients during the pendency of the review.

• A historical records review of Medicaid recipients who used catheters made with phthalate chemicals like DEHP to determine whether Iowa Medicaid recipients who use these medical devices made with phthalate chemicals have a higher incidence rate of bladder cancer than the general population.

• Identification of the brands of catheters with DEHP that are correlated with higher levels of bladder cancer in the Iowa Medicaid population of catheter users by comparing the diagnosis codes associated with bladder cancer against individual patient-level data that includes catheter billing at the stock keeping unit level.

• A comparison of the average lifetime cost of care for a Medicaid recipient who uses catheters with the average lifetime cost of care for a Medicaid recipient who has bladder cancer treatment.

• No later than July 1, 2025, the Medicaid director shall issue a report on the findings of the review, submit the report to the governor and the general assembly, and post the report on the department of health and human services internet site.

• The report shall include the Medicaid director's recommendation as to which catheters should be reimbursed under the Medicaid program, including specifically whether catheters made with DEHP should be reimbursed under the Medicaid program.

• This bill and the associated medical review applies to urinary catheters, specifically intermittent and indwelling catheters.

BetterCaths Health Educators Support the Better Caths for Iowans Act

Disability Rights advocate and quadriplegic Gina Schuh, JD, says, "It's egregiously irresponsible of healthcare providers and urologists who do not inform their patients about cancer warning labels on some of the catheters they prescribe and sell to us. They do not give us a choice in whether or not we want to use those invasive medical supplies."

"How can we trust our healthcare providers if they don't inform us of legally required cancer warning labels? The homecare industry depends on disability advocates to lobby on their behalf to protect or advance DME and CRT reimbursement," she continues. "Sadly, this is one of many reasons why many leading community activists will no longer support reimbursement efforts."

Jenn Wolff is an occupational therapist who was paralyzed during surgery to remove a cancerous tumor from her spine. Since her paralysis, Jenn has advocated for health equity and disability justice.

She has guided the Backbones SCI Leader Program, led national grassroots advocacy for United Spinal Association's Users First platform, advocated for disability rights multiple times on Capitol Hill, and created the Upgrade Medicaid initiative in Iowa. Jenn has also served on the board of directors for the North American Spinal Cord Injury Consortium, a scientific research organization.

"It's time for healthcare corporations to take responsibility over the medical equipment and supplies they provide to Americans -- especially Black and Brown, low income, and disabled communities," Jenn emphasizes.

Madonna Crosthwaite Long is famous on Capitol Hill for her hot pink powerchair and is also a recognized advocate for the current CRT Seat Elevation Reimbursement effort. Madonna has played a key role in healthcare advocacy and accessible transportation efforts at the state and national level for more than 20 years.

Guided by her mentor, former Senator Harry Reid, Madonna earned a bachelors' degree in Homeland Security. Today, Madonna serves the disability community as the owner of Summit Services and Supplies in Wyoming.

"I lost my best friend, Amy Malmgren, to bladder cancer. She was a well-known disability advocate, and we often worked the Hill on legislative issues together," Madonna shares. "I'm supporting the BetterCaths initiative in Amy's honor and I speak up on this issue frequently. I will continue to pursue legislative and health policy changes to protect our community."

"From a medical supply provider's perspective, I feel it is my obligation to the community I serve, the community I am part of, to educate them on anything that could be harmful to their health, before I provide any products or services to my customers," Madonna continues. "It is our policy at Summit Services and Supplies to provide appropriate health education and patient choice for every single one of our customers."

Homecare executive Lisa Wells has worked in the urological space since 2009 and teaches healthcare providers nationwide on best practices for supporting patients with disabilities. She has assisted with multiple legislative advocacy efforts on behalf of the Homecare industry and has lobbied on Capitol Hill alongside people with disabilities for healthcare reform and health equity issues.

Lisa created the DEHP health education effort for people with disabilities in 2017, on behalf of catheter manufacturer Cure Medical, when she discovered that some catheter manufacturers were not informing patients of cancer warning labels on their cheapest, oldest products—the ones that are most often given to Medicare and Medicaid beneficiaries.

Lisa states, "I am so thankful for the catheter manufacturers who no longer use, or never used, DEHP in the catheters that are provided to Medicare and Medicaid patients. This is tangible proof that those manufacturers care about protecting people with disabilities first and foremost, before their profits."

"Unfortunately, other catheter manufacturers refuse to remove known carcinogenic chemicals in their oldest, cheapest products, even though they know those products are most often given to low-income people with disabilities on Medicare and Medicaid," she says.

"Not only is that unconscionable, but it is also the reason why the disability community decided to mobilize on their own behalf. This legislative effort is a direct response to those companies' failure to self-regulate despite being fully aware that the rest of their industry peers have done the right thing for patient health and safety by not using DEHP," she emphasizes.

Related Scientific Data and Supporting Evidence for BetterCaths Legislation

Bladder cancer is the most expensive form of cancer to treat. This bill also aims to lower Iowa Medicaid expenditures by reducing the likelihood of bladder cancer among Medicaid patients who use catheters.

Scientific research has shown that phthalates like DEHP interfere with the natural functions of the hormone system, which can cause health problems—particularly cancer and damage to the reproductive system.

In men, hormone damage caused by DEHP can also lead to reproductive sterility.

DEHP exposure has also been linked to learning and behavior problems in children and insulin resistance in adolescents and adults. DEHP exposure has also been connected to children's respiratory and immune system issues, such as asthma and allergies.

For more information, read H.F. 387, the Better Caths for Iowans Act and learn more about the issue and supporting clinical evidence at www.BetterCaths.com.

Bladder cancer is the most expensive form of cancer to treat. This bill also aims to lower Iowa Medicaid expenditures by reducing the likelihood of bladder cancer among Medicaid patients who use catheters.

Scientific research has shown that phthalates like DEHP interfere with the natural functions of the hormone system, which can cause health problems – particularly cancer and damage to the reproductive system.

In men, hormone damage caused by DEHP can also lead to reproductive sterility.

DEHP exposure has also been linked to learning and behavior problems in children and insulin resistance in adolescents and adults. DEHP exposure has also been connected to children's respiratory and immune system issues, such as asthma and allergies.

For More Information

Read H.F. 387, the Better Caths for Iowans Act, at: https://www.legis.iowa.gov/publications/search/document?fq=id:1369604&q=387

Learn more about the issue and supporting clinical evidence at www.BetterCaths.com.

Pre-Register for Abilities Expo Today...It's Free!