Marjorie Williams had grown accustomed to regular calls from her medical equipment provider to check on how many catheters she had left, so when they called this July she didn’t think anything of it. She couldn’t have known that her world was about to be turned upside down. “Thank God I was lying in bed when I answered the phone because I almost passed out,” she says.
Her supplier informed her that the Centers for Medicare and Medicaid Services had forced them to slash the amount of catheters she received monthly from 510 to 200, starting immediately. While 200 catheters may sound like a lot, for Williams, who lives with a paralyzed, neurogenic bladder as a result of lupus and transverse myelitis, it was only enough to cover half a month. That forced her to either face using an in-dwelling catheter, which dramatically raised the risk of infections because of her already compromised autoimmune system, or to find a source for and the money to pay for catheters on her own.
“I couldn’t believe I basically had nine days to come up with a Plan B,” she recalls. That phone call set off a frantic two months that would force Williams to become an advocate and, with the help of United Spinal and many others, stand up to CMS for the medical equipment she needed.
By the time Williams reached out to United Spinal’s Resource Center in the weeks following the call, she was near her wit’s end. Ten days of phone calls to CMS had only proved more confusing. “I was told so many different answers, ‘No it should be fine.’ ‘It’s covered.’ ‘It should be covered.’”
Resource Center Director Bill Fertig sensed the urgency of Williams’ situation. “She had tried to fight but it was such an onerous process that she got beat down,” recalls Fertig. He quickly connected her with United Spinal’s policy team to brainstorm solutions.
Senior Policy Associate Jasey Cardenas got in touch with Williams as soon as he got off the phone with Fertig. He urged her to get in touch with her local representative to have them advocate on her behalf. The next day she was in her representative’s in-district office. “If you had told me that an alien had landed in my living room I would have sooner believed that than me discussing my private body function with my congressman down the street, but this is the position I was in thanks to CMS hiring people who have no concept of spinal cord injury,” says Williams.
Working with her congress¬man, Williams learned that the decision to cut her catheter supply had been made by CGS Administrators, a third-party group working for CMS. Williams had tried to explain to them how her neurogenic bladder differed from normal bladders, requiring unpredictable, prolonged bouts of frequent catheterization. She had documentation from eight different specialists, her own primary care physician and her medical advocate but so far, her mes¬sage had fallen on deaf ears.
“All of her doctors agreed that the chief medical officer for CGS was not making the correct assessment of her bladder,” says Cardenas. “It was completely different but he was ignoring that fact.”
While Williams was working with United Spinal’s policy team to resolve the issue with CMS, she was scouring eBay for catheters that fit her need. Fertig connected her with Re¬source Center nurse specialist Jane Wierbicky, who provided alternative sources and possible financial resources to aid her. Fertig also sent United Spinal position papers to help Williams understand the policy issues underlying her struggle.
After almost two weeks of agitation, and numerous calls and emails between Williams and United Spinal staff, the CGS chief medical officer finally contacted her. “I tried to educate him about immunosuppression and neurogenic bladder and I realized he still didn’t understand what the neurogenic bladder was,” says Williams.
While her education didn’t immediately result in a reversal of the decision to cut her catheter supply, it signaled that Williams’ case had the third-party administrator’s attention. Another phone call, this time with Williams’ primary care provider, finally closed the deal. Williams received a letter stating CGS had decided to make a policy provision allowing her 350 catheters per month.
Williams is still angered by the fact that CGS’ decision applies only to her and the possibility that others could face the same struggle she did. But she is thankful that she no longer has to scour eBay for catheters or risk compromising her health further. “I was extremely lucky,” she says. “I was very, very overwhelmed. Thanks to the help of my physicians, and Jasey and Bill and Alex