The cure: So close, yet so expensive

Lack of insurance prevents woman from receiving simple, but life-altering surgery

By Katie Demeria

WOODSTOCK — Tracy Barb has fluid at the base of her brain, and there is nothing she can do about it.

The condition impacts her ability to keep her balance, the way she thinks, and almost every aspect of her everyday life.

Barb, 45, of Woodstock, was diagnosed in 2011, when she went to the Free Clinic in Woodstock complaining of back pain.

“They did X-rays, and nothing showed up,” Barb said. “But I told them something had to be wrong.”

It was only after a second MRI that doctors discovered the fluid.

The medical term for the condition is hydrocephalus. Barb said she does not have the typical symptoms, the most common of which include chronic headaches. Instead, she deals with extreme dizziness and intense pain.

“I have a hard time walking,” she said. “I can’t stand for long, I can’t sit for long, I can’t lay down for long, either.”

Doctors with the Free Clinic had Barb contact a neurosurgeon in Charlottesville who could help her.

“They said it’s a simple surgery,” she said. “You drill a hole in the skull and put a shunt in that will drain the fluid.”

The Charlottesville surgeon, though, would have to charge Barb 45 percent of the procedure’s cost.

“I couldn’t afford that,” she said. “It takes all that I make right now to be able to live. I have one solution left, and that’s the man upstairs.”

Barb has never been able to visit the Charlottesville surgeon because she cannot afford the consultation.

In order to benefit from Medicaid expansion in Virginia, an individual supporting only themselves would have to make less than $15,521 a year, according to Pam Murphy, executive director of the Free Clinic.

As of now, Barb makes $1,200 a month working part time as a caregiver. She has had to reduce those hours in recent months due to her health conditions.

While her income would possibly allow her to benefit from the expansion, a lack of providers able to take on new Medicaid patients may limit her options.

Barb looked into signing up for an insurance plan through the marketplace provided by the Affordable Care Act — all the options, though, were outside of her price range.

“I would not have a place to live, if I got one,” she said. “I could go to the doctor, but I would not have a home to go back to.”

The pain Barb feels comes from conditions caused by the hydrocephalus, including a bulging herniated disk and spinal stenosis.

“It’s excruciating and constant,” she said.

Her only relief comes from medications prescribed by the Free Clinic. The 12 pills she takes every day treat her pain, her arthritis and the depression she developed after her mother passed away in 2011.

“It was real hard to deal with,” she said. “That, on top of the fact that I was getting crippled up — it was hard to face the fact that I’m getting old so early, and there’s not much I can do about it.”

Many in the area suffer from similar issues. Almost all of the patients receiving treatment from the Free Clinic cannot afford insurance.

Robbin Stuart, 57, of New Market, is also a caregiver. She tried to sign up for an insurance plan through healthcare.gov but was unable to do so.

Stuart does not have Internet access, so she tried signing up over the phone. The difficulties she faced, though, made doing so virtually impossible, she said.

“It was just a hassle from the get-go,” Stuart said.

She is on the lowest poverty tier, she said, and was promised some credit toward her insurance expenses.

“It was shocking to me that the original amount was like $896, and then with the credit, it only went down to $386 a month,” she said. “I can’t afford that.”

Barb has started to come to terms with her health conditions. Her 22-year-old daughter moved back in with her and has been helping her through her dizzy spells.

While Medicaid expansion could potentially help her, she said, as of now, her only option is to live with the pain and pray.

“If telling my story can help at least one person out there, it will have been worth it,” she said.

Contact staff writer Katie Demeria at 540-465-5137 ext. 155, or kdemeria@nvdaily.com