Mark Hayward's City Matters: She wants to keep walking
Susan McGrath loves motorcycles.
At 15, she would push an off-road cycle 1 1/2 miles to a nearby school parking lot, where she taught herself to ride. Once she got her license, she drove to school on a 125 Suzuki. And as a young adult, she hung out with bikers.
Despite those high-torqued years, McGrath, who has multiple sclerosis, shudders at the thought of hopping onto another kind of motorized vehicle - a wheelchair with shock absorbers, memory-foam padding and a video-game-like joy stick - that New Hampshire Medicaid purchased about a year ago.
The machine, which Internet sites offer for $5,900, sits idle in a bedroom corner in her Manchester apartment, its tires showroom clean. She stacks clutter on it.
"I won't use it," said McGrath, who is 53. "I have a little bit of ability. To get my butt in the wheelchair, I'll lose what I got left."
McGrath is in a two-year battle with the state bureaucrats over the best way to address her MS, an incurable disease that attacks nerve cells, including those in the legs she needs - and wants - to walk with.
The state says wheelchair. Her doctor and her physical therapist say she would benefit from a functional electrical stimulator.
The FES device would strap onto her left leg and thigh and deliver electrical impulses to stimulate damaged nerves in her leg. The goal is to reverse her foot drop, the medical term for the stiff left foot that stymies her walking. (In a trial use of an FES, McGrath was able to increase her walking range from 50 feet to 650 feet, according to her case's paperwork.)
"It only makes sense. If you're sitting, your muscles go. If you're up and moving around, if the muscle is stimulated and being used, they have to be strengthened," McGrath said.
The state has said no, emphatically so, to McGrath's requests for an FES. In December 2010, the state Department of Health and Human Services rejected her doctor's prescription for the device. A year later, a state official denied McGrath's appeal.
"There is nothing in the record that excludes the possibility that another disease, a prior injury, or even surgery could be the cause of (McGrath's) foot drop," reads the ruling, which McGrath provided.
So McGrath uses a cane and grabs walls, furniture and whatever else to steady herself. Her back is angled forward at the waist. She walks clumsily, dragging her left foot and leg.
She visited the New Hampshire Union Leader last month after falling and bruising her forehead, eyes and the bridge of her nose.
To be sure, the FES favored by McGrath, the Bioness L300 model, does not work for everyone, according to message boards at www.msconnection.org. Nearly all people posting on the message board complained about insurance not paying for the device. Some coughed up the money themselves. The prices ranged from $1,500 to $7,000.
In his December 2011 ruling, the presiding officer wrote that the Medicare system, which state Medicaid uses for guidance, only provides an FES for people with spinal cord injuries. The ruling notes that private insurance companies have similar restrictions.
Her lawyer argued that MS damages nerves; nerves are in the spine; so MS qualifies as a spinal cord injury.
The hearing officer - Paul Bernard Esq. - bought that argument. But he then started splitting nerve cells.
McGrath has MS and foot drop, but there is no evidence the foot drop is caused by a spinal cord injury as opposed to a brain injury, he wrote.
"Recall that Medicare only covers the FES for a spinal cord injury, not a brain injury; and that MS affects both the brain and spinal cord," Bernard wrote.
McGrath's pro-bono lawyer filed an appeal to the state Supreme Court, but withdrew it late last year. Nick Holmes, president of Nelson, Kinder and Mosseau law firm, said there were technical issues with the first case, so his firm has to start over. Any decision will take months, he said.
"Unfortunately, there are no shortcuts. You have to go back to square one," Holmes said.
On the political side, McGrath has testified in favor of a House bill that would loosen up Medicaid regulations on devices such as the FES. That bill was retained in committee, meaning nothing will happen fast.
So she waits.
McGrath said her MS was diagnosed eight years ago. She used to work in quality control departments at local manufacturers. She's lost so much to MS: her job, a house, a condo, her friends. Even some teeth have fallen out, the side effects of one of the nine medications on her desk.
She lives on Supplemental Security Income, food stamps and Section 8 housing vouchers. She spends her day fighting bureaucrats for those benefits, watching television and advocating for MS patients on social media.
She fears she will one day fall and break a bone, which would send her to a nursing home.
"This disease has destroyed me," McGrath said. "I hate the person I have become."