John Clark, a fourth-grader at Mars Area Elementary School, traveled to Harrisburg June 2 with his father, Jarrod, to advocate for the So Every Body Can Move Act. Submitted photo

Using past health battles as an inspiration to help others, a local fourth-grader and his father are advocating for state legislation that would require insurance to fully cover prosthetics and orthotics, something they say would drastically help patients and those post-operation.

John Clark, a student at Mars Area Elementary School, and his father, Jarrod, are supporters of Senate Bill 1360 — the So Every Body Can Move Act. The bipartisan bill would expand access to orthotic and prosthetic devices to those with limb loss and mobility impairments. They’ve traveled to Harrisburg to meet with legislators and speak on behalf of others.

“I think it’s important that people know these devices are not about extras and freebies. These are things that help people live a safe and happy life,” said Jarrod Clark. “These prosthetics can cost thousands to tens of thousands of dollars. There are charitable foundations that help out, but they’re only able to give away a couple a year.”

In November 2023, John Clark underwent two open-heart surgeries, a heart transplant and a partial leg amputation. This occurred after a dental procedure caused a bacteria to travel to John’s heart. During the procedure, a massive stroke and subsequent cardiac arrest caused his body to shut down certain functions, resulting in the amputation.

Since then, he has joined the Pennsylvania Orthotic & Prosthetic Society, which brought together advocates, patients, families and providers from across the state to speak in support of the So Every Body Can Move Act.

The advocacy is part of various efforts in recent years by the Clarks to support others with similar experiences to John’s. The family started an annual 5k race and 1k walk, called John’s Journey that has raised thousands of dollars for families in the hospital waiting for transplants. It was “something he wanted to do,” Jarrod said.

“Since John got out of hospital, he wanted to find a way to give back to families still in the hospital, going through similar transplants and procedures,” Jarrod Clark said.

While at an appointment at Union Orthotics and Prosthetics, the Clarks noticed a poster on the wall advocating for the legislation.

“We saw something on the wall and they told me it was legislation they were trying to help pass. We found out what it’s all about. We reached out to the organization and they said they were looking for people to advocated on behalf of others in Harrisburg,” Jarrod Clark said. “And John told me he wanted to go.”

In Harrisburg, John got the opportunity to share his story and talk to legislators about why the legislation is important and how it will benefit others like him.

The authors of the legislation claim that insurers in Pennsylvania often deny coverage for medically necessary devices that help restore physical activity. They also exclude from coverage devices needed for bathing and showering and “fail to cover devices that allow individuals to return to their lives as holistically as possible.”

Nationwide, millions of Americans have experienced either limb loss or limb difference. When taking into account mobility impairments and other health conditions that require such devices, that number adds up to 276,000 Pennsylvanians, according to a legislative memo attached to the senate bill.

John Clark, a fourth-grader at Mars Area Elementary School, traveled to Harrisburg June 2 with his father, Jarrod, to advocate for the So Every Body Can Move Act. Submitted photo

“More than 276,000 Pennsylvanians, including veterans and children, live with limb loss or limb difference yet many cannot access the O&P devices required to safely move, work, care for their families or participate in physical activity. According to the World Health Organization, physical activity is vital to health and is not just defined as being able to get out of the house to go to work. Participation in sports, fitness, exercise and daily tasks, such as cleaning and gardening, are essential components as well,” the memo reads. “Therefore, when a physician determines that a device is necessary to regain maximum function, there should be no questions or doubts.”

The legislation, if approved, would make insurers obligated to cover devices needed for physical activity and hygiene, reimbursing O&P care at levels at least equivalent to Medicare and prohibit discriminatory denials.

When John visited the Capitol to advocate for children, veterans and other amputees, he told legislators, “The right prosthetic doesn’t help me walk. It helps me live.”