On March 10, the Amputee Coalition of America (ACA) hosted nearly 200 people with amputations and patient advocates from 34 states in Washington DC, where these citizen lobbyists urged Congress members to support prosthetic parity. Their message was simple: Arms and legs are not a luxury!
Many of these activists told their own stories of fighting with insurance companies to try to get the prosthetic devices that they need to work and live.
“Insurance companies are unrealistically limiting reimbursement of prosthetic arms and legs or summarily electing not to cover them at all,” said Kendra Calhoun, ACA president and CEO. “We intend to turn this tide, and this event is a great example of the grassroots support we have from across the country to do so. Arms and legs are not luxury items. Mobility is a serious issue for amputees who want to keep their jobs, take care of their families, and live healthy, active lives.”
Jeffrey Cain, MD, is a bilateral lower-limb amputee and a member of the ACA board of directors and medical advisory committee. He used himself as an example of how prosthetic devices can help people with amputations function in their daily lives and contribute to society.
“Being able to have prosthetic devices means that I can take care of my patients and teach medical students,” Cain said.
Unfortunately, working people with employer-provided health insurance plans are often the ones with the biggest problems, Cain noted, “because employer-provided insurance plans are increasingly introducing unreasonable limits and caps. If you have a job in America-if you are a hardworking member of society-you can’t afford a leg to stand on. It’s gotten that bad.”
In fact, some insurance companies are providing coverage for only one prosthesis per lifetime, or eliminating coverage completely, the ACA said.
“Even for older adults, it is absurd to expect them to use only one prosthesis in their lifetime,” Calhoun said. “No one would expect a person to wear a single pair of shoes their entire life, and prosthetic devices should be no different.”
These practices by insurers pose especially serious challenges for families of children with limb loss.
Rick Castro, of Connecticut, took two of his children to the event because he wanted to try to get better prosthetic coverage for all families, including his own. Castro’s four-year-old daughter Jennifer was born missing part of her arm below the elbow, and Castro is well aware that as she grows she’ll need several expensive prosthetic devices.
“When people find out that their insurance company doesn’t provide fair coverage for prosthetic devices, what do they do?” Cain asked. “They mortgage their homes, raid their children’s college funds, go into debt, turn to government programs for assistance, or are forced to have bake sales to try to pay for these medically necessary and often very expensive devices. That’s pretty sad, especially when they’ve paid their insurance premiums for years for this very purpose.”
David Ross, of New York, New York, lost part of his right hand and his right leg above the knee after he was mugged and thrown in front of a subway in 1997. He’s seen what happens when people with amputations have to settle for devices that are not really what they need because of the limitations in their insurance policies, and that’s what brought him to Capitol Hill.
“It’s a shame that a lot of my fellow amputees who have already had to get over a traumatic accident or [were] born without a limb have to fight for something that should already be included in their insurance policy,” Ross said.
Robert D. Doty Jr., MD, who lost his left arm as a result of a car falling on him, has had problems with his insurance company not understanding-or acknowledging-his prosthetic needs.
“My carrier did not want to cover a body-powered prosthesis after covering a myoelectric prosthesis,” Doty said. “The company said that one prosthesis is as good as another and that they can do the same thing, which is not true. I can’t do anything around water, liquids, chemicals, or heavy machinery or do any heaving lifting with my myoelectric prosthesis without damaging it. It’s great for doing fine, precise work, but if I’m going to be doing heavy lifting or working around water or liquids, a body-powered prosthesis is better. I really need both.”
As these nearly 200 citizen lobbyists hustled from office to office, they made it clear that they want change. In a single day, they made more than 60 Senate visits and more than 100 House visits. In addition, 26 organizations, including disability rights groups and O&P professional organizations, have now signed on with the ACA to help move this legislation forward.
“We are thrilled with the results of the day,” said Morgan Sheets, the ACA’s national advocacy director. “We are already hearing from House and Senate members who are interested in co-sponsoring our bills and supporting our efforts for fair coverage of artificial arms and legs. The turnout exceeded our expectations, and the great enthusiasm of the participants has certainly encouraged us to continue this important fight for fairness.”