Patients, nurses urge passage of H4162 to expand access to ostomy supplies

Testifiers at a Massachusetts legislative hearing urged lawmakers to pass H4162 to ensure consistent access to ostomy supplies that patients and clinicians say are medically necessary.

Supporters said inadequate insurance coverage, surprise product substitutions by suppliers and administrative delays force patients to reuse supplies, buy replacements out of pocket, or seek emergency care. They asked the committee to favorably report House Bill 4162 to require more reliable coverage and supply processes.

The issue matters because ostomy appliances are used continuously to replace internal bodily functions and, when supplies fail, patients can suffer skin breakdown, infection, hospitalization and severe limits on daily activity. Advocates said current coverage practices threaten dignity and drive avoidable health care costs.

Martha Bernstetter, a certified wound, ostomy and continence nurse at Beth Israel Deaconess Medical Center, described frequent provider time spent “finding loopholes to ensure my patients get the supplies that they need.” She said product switching and insurer-imposed limits can cause leakage, skin breakdown and emergency department visits, and cited a 2024 survey finding that 50 percent of respondents experienced nonmedical product switching, with 64 percent of those reporting negative outcomes such as leakage or additional care needs.

“My team and I field multiple patient calls throughout the week dealing with this very issue,” Bernstetter said.

Patient speakers described day-to-day consequences. Rebecca West said she has lived with chronic pain but also underscored how ostomy supply denials and restrictive quantity limits forced some patients to improvise. Eva Hosey, a high school senior who had an ostomy as a teenager, said her insurer approved 20 pouches per month while she requires roughly 60 per month because she uses two pouches per day when administering medications — “This prescription gets denied every month by my supplier and has to be appealed each time,” she told the committee.

Kayla Caba, founder of Connecting Pieces (a nonprofit that distributes ostomy supplies), said her organization regularly fields requests from children at Children’s Hospital, veterans and homeless neighbors who arrive at emergency departments without basics because insurance did not cover their supplies. She said delays or denials sometimes force patients to reuse pouches or substitute household items.

Sarah Thompson, a certified wound, ostomy and continence nurse specialist at Brigham and Women’s Hospital, said her clinic logs about 3,000 ostomy/fistula patient visits a year and receives an average of 10 calls per week from patients needing help with supplies. She described a case of a patient with 16 emergency visits or admissions in four months tied to supply problems and urged reform to reduce both harm and system costs.

Speakers emphasized the scarcity of specialized nurses: “There is an estimated 1,000,000 ostomates in the U.S. and only about 10,000 certified ostomy nurses,” Bernstetter said, arguing that insurance policies should not substitute cost-based decisions for clinician recommendations.

Testifiers asked that H4162 ensure coverage for individualized supplies, limit nonmedical switching without clinician and patient consent, and simplify prior authorization and refill processes. They argued those steps would preserve dignity, reduce avoidable emergency care and lower overall costs.

Advocates concluded by asking the committee to move H4162 forward; no committee actions or votes were reported during the hearing.

Ending: Witnesses asked the committee to favorably report H4162 and to work with clinicians and patient groups to craft final language that preserves clinical discretion and patient choice.