State senator honored by local nonprofit for spinal cord injury bill

The nonprofit Walking with Anthony recognized State Sen. Jennifer McClellan (D-9th) for her work supporting spinal cord injury patients at its 6th annual charity golf tournament and dinner in Fairfax on Sept. 24.

At the beginning of the Virginia General Assembly’s 2018 session on Jan. 10, McClellan filed a bill allowing the Virginia Department of Aging and Rehabilitative Services to obtain information on spinal cord injuries so that it can develop services, programs, and other resources for victims.

The bill passed both the Senate and House of Delegates unanimously and was signed by Gov. Ralph Northam on Mar. 5, taking effect as law on July 1.

Though she was unable to attend the golf tournament and dinner, which was held at the Country Club of Fairfax on Ox Road, McClellan expressed gratitude the following morning for Walking with Anthony’s decision to honor her at its annual fundraising event.

“I was very honored. I was sorry I couldn’t be with them in person, because I really wanted to share my appreciation,” McClellan said by phone. “Based on the sharing of this data, our agency will be able to develop services to help spinal cord injury victims and know where they are. I think that’s going to have a direct benefit to those people, so it was my pleasure to do the bill.”

According to the National Spinal Cord Injury Statistical Center, an estimated 17,700 people in the U.S. suffer from spinal cord injuries each year, amounting to approximately 54 cases per 1 million people.

Current estimates suggest that approximately 288,000 people with spinal cord injuries live in the U.S.

Data on spinal cord injuries in Virginia, however, has been limited by a lack of information sharing between hospitals and the Department of Aging and Rehabilitative Services, the state agency charged with developing services for people with disabilities.

DARS provides employment services, assistive technology, disability determination, and other resources for a wide range of disabilities, including spinal cord injuries, but prior to McClellan’s bill, hospitals were not required to share information on spinal cord injuries with the state like they do with other medical issues such as brain injuries.

This issue came to McClellan’s attention when she was approached by a constituent who happened to be a founding member of the United Spinal Association of Virginia, a Richmond-based nonprofit dedicated to supporting and advocating for people with spinal cord injuries and disabilities.

Senate Bill 287 directs the commissioner of health to make information contained in the Virginia Statewide Trauma Registry available to DARS so that it can “develop and implement programs and services for persons suffering from spinal cord injuries,” according to Virginia’s Legislative Information System.

The Virginia Statewide Trauma Registry is an online reporting tool for all hospitals that provide emergency services. Hospitals are required to report information on any injured people who are admitted through their doors, transferred to another acute-care facility, or die in the hospital prior to admission.

“Without the data that is needed, we are unable to provide the resources to individuals across the Commonwealth that are newly injured,” United Spinal Association of Virginia founder Sharon Drennan said when speaking in support of S.B. 287. “They can become isolated, and we want to help them become active members of our community. With this data, we can do the outreach we need.”

Drennan’s son has a spinal cord injury, according to Richmond’s ABC8 News, which reported a portion of her Feb. 15 testimony to the House Committee on Health, Welfare and Institutions.

As suggested by its eventual unanimous passage, the bill easily garnered support from McClellan’s colleagues once she and advocates like Drennan brought the problem to their attention.

“People didn’t really realize there’s nothing that requires or authorizes that agency to share the spinal cord injury data with the people who need to use it,” McClellan said. “I think the biggest thing was just raising the awareness that there was that gap.”

The legislation’s success came as a relief to people with spinal cord injuries and their families, including Walking with Anthony president and founder Micki Purcell.

Purcell started Walking with Anthony in 2010 after her son, Anthony, who now serves as the nonprofit’s executive director, broke his neck and was left paralyzed by a diving accident.

Inspired by her son’s love of the Washington Redskins, Purcell recruited the NFL team’s alumni association and charitable foundation as partners for Walking with Anthony’s annual charity golf tournament and dinner to help raise money to support the organization’s mission.

Where organizations like the Christopher and Dana Reeve Foundation concentrate primarily on funding research, Walking with Anthony focuses on providing financial, medical, and emotional support to spinal cord injury victims, raising money to cover rehabilitation therapy, caregiving, equipment, and emergency funds.

Walking with Anthony’s 6th annual charity golf tournament and dinner sold out with 275 participants, including Redskins President Bruce Allen and players Vernon Davis and Jamison Crowder. The event raised more than $300,000, according to the nonprofit.

Along with a morning of golf and live and silent auctions, Walking with Anthony used the dinner to present a $10,000 grant to Richmond native L.J. Smoak, a military veteran who served three tours in Afghanistan and suffered a spinal cord injury in a boating accident. 

Purcell says she wanted to recognize McClellan at this year’s dinner because the state senator “accomplished something most people can’t do” after spinal cord injury patient advocates had previously made little headway when pursuing legislation.

“She had a platform that she could get this done, where I didn’t have that platform, so I’m very excited that she got it done in Virginia,” Purcell said. “I know they’re going to try to do it in every other state. It’s a big deal that she got more resources.”

The spinal cord injury community has seen noticeable progress since Walking with Anthony started eight years ago.

When Anthony Purcell got injured, rehabilitation was such an uncommon practice for spinal cord injury patients that it was only available at a center in California, according to Purcell.

“I took Anthony there, and when I saw how he progressed – he got better, healthier, [more] independent, taking steps, his whole upper body’s better – I decided to start Walking with Anthony to help people get there immediately,” Purcell said.

There still remains work to be done, particularly regarding medical insurance coverage for spinal cord injury victims.

Most insurance is inadequate for covering spinal cord injury patients’ needs. For instance, Anthony Purcell’s insurance ran out after 20 days, even though the initial recovery process requires three to six months on average of intensive physical rehabilitation, according to Walking with Anthony.

When adding in the costs of adaptive equipment like wheelchairs and other living expenses, the estimated lifetime cost of having a spinal cord injury ranges from more than $1 million to nearly $5 million, depending on an individual’s age when injured, education, employment history, and the extent of the injury, according to the National Spinal Cord Injury Statistical Center.

“It’s a horrific injury, it affects the entire family, and insurance doesn’t cover it,” Purcell said. “That’s the main message.”

Walking with Anthony accepts donations through its website walkingwithanthony.org. It has teamed up with the Redskins Charitable Foundation, which includes Purcell on its leadership council, to receive $10 donations when people text WWA to 20222.