Allan Appel Photo.
Kolodny and Novak before their presentation to Yale Medical School staffers.
Herb Kolodny lost his leg in a six-year battle with cancer, and he had time to think about the major life change that was coming to him as an amputee.
Brenda Novak lost hers suddenly in a life-threatening accident when she was on a development project in west Africa and falling equipment crushed her limb.
When they each woke up from their surgeries, they could have benefited mightily if an amputee, one who had already navigated the pain and adjustment, the insurance coverage and prosthetics challenges, had entered their rooms and modeled what recovery looks like.
No one was doing that then. Now Kolodny and Novak have decided to become that person.
Two years ago they founded the Connecticut Amputee Network (CAN) to legislative advocacy, education, and organizational networking for people who have lost limbs.
In 2018 Kolodny and Novak and their more than 100 informal members successfully lobbied the state legislature to pass PA18-69, An Act Concerning Health Insurance Coverage for Prosthetic Devices, whose main feature is that prosthetics coverage must be equal to or better than Medicare.
The new law also mandates that the new prosthetics coverage also include micro-processor technology — or C [for computer]-LEG, as Kolodny and Novak call their high-tech appendages.
That was critical, Novak and Kolodny pointed out in a Friday presentation to 50 orthopedic surgeons, other docs, nurses, and administrators, at the Yale Medical School’s Brady auditorium on Cedar Street.
The C‑Leg, which both Kolodny and Novak received, has sensing technology aiding balance, helping the body anticipate and adapt, so patients can go up and down stairs and do adaptive sports. The C‑Leg is safer than other prosthetic legs. It has been proven to prevent falls — the leading cause of injury and death for amputees of all ages.
When Novak received hers, she reported, it cost $65,000. Private insurance would cover only 30 percent. That no longer is the case, thanks to her group’s efforts.
With that legislative victory behind them, Novak and Kolodny have turned their efforts to informing medical personnel around the state not only about new rights contained in the legislation, but also about the critical role of CPVs, or certified peer visits, in amputee recovery. Peer visits existed before their group started, but they weren’t a widespread practice.
“It would have been helpful if someone had been there to tell me the next step,” Kolodny said. “I ended up in a Gaylord” Specialty Health Care Hospital. Kolodny eventually met Novak as ex-patients, and then together went on to found CAN.
They are both now CPVs, having received training with the national Amputee Coalition.
Last year was all about the legislative initiative. “This year is all about changing the culture of doctors and nurses,” Kolodny said. “Having them think about peer visits to change the mind-set, so that they don’t think of themselves as a shut-in, but with a leg, they can return to their life.”
The organization also connects amputees with groups engaged biking, kayaking, and golfing.
“It’s critical to get to people before they fall into depression,” Kolodny said.
Connecticut has 1,850 new amputees every year, according to Kolodny.
Kolodny and Novak spoke Friday to a group that included Danielle Stone (pictured), a nurse in the orthopedic and spine department at Yale New Haven Health, and Dr. Mary O’Connor, YNNH’s director of the Center for Musculo-Skeletal Care at the Yale School of Medicine, among others.
“We don’t have MDs or even PhDs after our names,” Kolodny told them, “but we have 16 years of life experience” asamputees.
The presentation was received with both admiration and high interest.
Kolodny with his surgeion, Dr. Dieter Lindskog, who did the introductions.
O’Connor, a pediatric oncologist who last year helped inaugurate Yale’s new Center for Musculo-skeletal Care on the old St. Raphael’s campus, recalled having a pediatric patient facing amputation.
There happened to be a television series on at the time, she recalled, that had featured a kid with a prosthetic limb. When O’Connor’s patient saw the program, it gave the child genuine hope.
O’Connor praised Kolodny, Novak and CAN for getting the word out and modeling what they preach.
One of the docs in the audience asked whether CAN members include any veterans, many of whom return from modern wars with prostheses.
The answer was no, although the technology being pioneered by the military works its way down into the increasingly high-tech prosthetic devices available to civilians like themselves, said Novak.
Speakers descending the stairs after their talk.
Novak said that the increasing visibility of young vets with artificial limbs is important, as is the economic benefit of prosthetics, in the long run. “There’s great human and economic benefit” in getting the right prosthesis,” Novak said.
“The less time you spend in a wheel chair, the fewer heart attacks and obesity problems,” Kolodny said.
“And you can say it saves lives,” Novak added.
“How can we help you in your work and what can we do better?” another voice from the audience called out.
“Peer visits!” Kolodny replied. “If you have a patient who’s to have an amputation and who’s terrified — which is quite common — arrange a peer visit.”
Dr. Dieter Lindskog, who oversees Yale’s musculoskeletal orthopedics section and who performed the surgery on Kolodny, agreed. “I’d advise the peer visits to happen beforehand,” he said.
“What you’re doing makes a huge difference,” he added. “You have gone the whole gamut from changing the law to meeting patients in the hospital.”
On the way out of the gathering, Kolodny learned from David Mahler, his prosthetist, that the physician in charge of the amputee group at the Veterans Administration Hospital in West Haven had been listening to the presentation online, and was impressed. He was inviting Kolodny and Novak to make their presentation in West Haven, and would be in touch.