Limb loss can make being active in New Jersey expensive. These resources can help

Connie Hanafy should have been celebrating freedom. After four years of struggling with complex regional pain syndrome, when hyperactive nerves caused her near-constant agony, Hanafy had her right leg amputated below the knee.

Hanafy wanted to return to her athletic lifestyle, playing soccer, surfing and riding horses like when she was growing up in Delran. Her insurance company had other ideas.

Hanafy was able to get a prosthesis so she could walk again. But a running blade? Something she could use to jump into a pool, lake or the Jersey Shore breakers? Or to smoothly kick a soccer ball with her two daughters?

Absolutely not.

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That made Hanafy’s disappointment shift to anger.

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She already knew the sobering Centers for Disease Control and Prevention statistics. Nearly one in four Americans is living with a disability, about 14% of which impact mobility. Nearly half of those adults with disabilities get no aerobic physical activity.

Hanafy likened the lack of coverage for activity-specific prostheses to how insurance companies handle Type 2 diabetes, which is frequently linked with obesity. Diabetes treatment is covered, but Hanafy doesn’t think there’s enough incentive to help improve someone’s lifestyle before she gets sick.

“You should be treated mind, body and soul as a whole,” said Hanafy, a 37-year-old single mom in Sewell who works with hospice patients.

“Having a limb difference, I don’t want to deal with it. I want to do what I want to do without having a $50,000 (specialized) prosthetic leg and paying out of pocket for it because it’s deemed not medically necessary. It is necessary.”

Though most employer-sponsored and Affordable Care Act plans include “medically necessary” prosthetic devices in their Essential Health Benefits, that coverage is not universally available. Medicaid skips those benefits in states like Oklahoma, Texas and Mississippi. Medicare Part B — which covers durable medical equipment, a category that includes canes and walkers as well as prostheses — requires patients to pay 20% of the cost, which is approximately $5,000 for a basic lower leg.

“If the device(s) are determined to be medically necessary based on a diagnosis by a doctor or other licensed practitioner, they can be covered. It’s case-by-case depending on the situation,” New Jersey Department of Human Services spokesman Tom Hester said via email.

“Medicaid and Medicare cover specialty equipment to support activities of daily living. Medical equipment required exclusively for sports would not be covered by either program.”



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