Traci Goforth among the ‘medically uninsurable'

When Traci Goforth´s face went numb, she didn´t think much about it.

It was just the left side. It didn´t hurt. It wasn´t even that uncomfortable.

"It was just like I went to the dentist and had Novocain ," she remembers.

Traci and her boyfriend, Mark, were about to head from their home in Campbell , Calif., to a convention in San Diego.

They were in the seafood business. He still is, though they´ve been married and divorced since then. Later, the two would relocate their company to an odd place for fishmongers: Cloverdale Road in Boise.

But back then, Goforth was 32 and had two young daughters. She wasn´t worried, though. She was active. Athletic.

She didn´t even see the doctor for three weeks.

But the feeling crept up to her forehead. Over to her ear. Down to her chin.

Her internist just asked a bunch of questions, then sent her to a neurologist. The neurologist was old -- close to retirement, she remembers -- and he tested her motor skills.

He pricked the skin on her arms, but she could feel that just fine.

His best guess: Trigeminal neuralgia. She remembers that quite clearly. Try-jem-in-al, she explains , as if she heard it just yesterday.

The doctor described it as an infection in one of her head´s main nerves.

"He told me it would go away," she says.

It didn´t.

"I was just getting more numb," she says. "But I wasn´t panicking. I didn´t think it was anything bad."

NOW

Politicians including Newt Gingrich blame the rising costs of health care on the "third party payer."

The thinking goes: If insurance companies pay for your doctor visits, you won´t care how expensive they are. If you don´t care how expensive they are, you won´t eat better. You´ll get fat. You´ll get diabetes and heart disease and all manner of preventable and expensive diseases.

But what about the people who simply get sick?

THEN

Goforth found a new neurologist, and an MRI was scheduled sometime during the week.

What Goforth remembers most is when she got the call. It was a Friday. The doctor wanted to see her on Monday.

Three days later? Now she was worried.

"I got mad at him," she says. "You jerk. Am I dying? Do I have a brain tumor?"

She and Mark and her father persuaded the doctor to meet them that Friday night. One look at the scan showed him she didn´t have an infection.

An MRI device shoots radio waves at protons in the body, exciting and relaxing them in measurable ways. In the brain, these protons are generally in the hydrogen atoms of water.

Because different brain tissues have different densities of water, these machines can map these tissues -- and highlight those that shouldn´t be there.

Brain tumors are easily spotted. So are lesions and scars formed when the lining of the nerves has been damaged.

When this lining -- called myelin -- is scarred, the nerves themselves lose some function. Some people see double, or see blurry. Others feel like their legs are weak. They battle spasms.

Goforth´s face went numb.

This process of scarring is called sclerosis. When doctors can confirm at least two episodes of the myelin lesions, they can make the diagnosis: multiple sclerosis.

This is what Goforth remembers passed through her head: MS cripples people. Mark will lose interest. Who will take care of the girls?

"I was thinking, ´What is it?´ " she says. "But I know that people are in wheelchairs. ... To me, multiple sclerosis meant you are disabled in a wheelchair for the rest of your life."

The doctors gave Goforth a high dose of steroids. She and Mark were days from a planned vacation.

"Go to Hawaii," the doctor said. "Have a good time. You deserve it."

Her face puffed up.

"Like a balloon," she says.

"Like a frickin´ balloon," she says on another occasion.

She didn´t enjoy the trip.

"I got mad," she says. "I got sad. I went through the whole gamut of feelings."

But the steroids fought the inflammation, and her nerves recovered.

The doctor explained that MS wasn´t a death sentence. Most patients aren´t in wheelchairs. Many live normal lives.

And for almost a decade, Goforth did.

THE FACTS

Some 2.5 million people are diagnosed with MS, including about 400,000 in the United States.

No one knows why people like Goforth get the disease.

Your chances are a little higher if one of your parents has it, so maybe it´s genetic. Folks from colder regions seem to get it more than folks who live closer to the equator, so maybe it´s geographical. Women get it more than men, so maybe gender plays a role.

MS doesn´t affect everyone the same way. Some people suffer severe damage quickly. Others live for decades with few visible symptoms.

Doctors break it into four areas of severity, and Goforth was lucky to be experiencing the lowest -- "relapsing-remitting."

Throughout the 1990s, she saw the neurologist very little. She got married. She had another child -- a boy this time.

In 1999, the family moved to Idaho, and a healthy and confident Goforth didn´t even find a local neurologist.

KETCHIKAN, ALASKA: AUGUST 2001

The family was visiting Mark´s relatives in Alaska, but Goforth didn´t feel like doing much.

She didn´t want to step foot on the fishing boat. Her fingers tingled.

When they came home, she spent six weeks on the couch and in bed.

"I was not sick," she says. "I was not tired like I wanted to sleep. It was just that my body felt like it was exhausted."

NOW

Of Americans under age 65 with health insurance, two-thirds are covered by employer-sponsored plans.

If you or a family member don´t qualify for a company plan, you can buy individual insurance on the open market. The companies look at your medical history and your age. They calculate what you could cost them in medical bills.

Sometimes, the risk is simply too great.

Idaho lawmakers, though, have decided over the years that it´s not good policy to let insurance companies deny coverage to the sickest Idahoans.

Today, everyone with insurance pays a premium tax, and part of the money subsidizes a "high-risk reinsurance pool." The state covers the extra risk and mandates a set price based on age and benefits.

A 19-year-old male nonsmoker who wants a basic plan must pay $171 a month. A 60-something woman who smokes can be looking at more than $1,000.

Like most people, Goforth never gave things like this much thought.

She owned a business that provided insurance. Her family had a lot of money. Her house in Eagle was big and beautiful and getting more valuable every year.

THEN

After that Alaska trip, and the weeks of exhaustion that followed, Goforth finally saw an Idaho neurologist.

He prescribed another dose of steroids -- a smaller one, though, than what she needed the first time.

He also told her about some innovations in treating the disease. New drugs could slow relapsing-remitting MS, which, while slow, can eventually cause enough nerve damage to affect quality of life.

He told her about a drug called Copaxone, invented in Israel and now used in more than 44 countries. Studies were showing that the drug could inhibit the progress of relapsing-remitting MS.

But she would have to give herself a shot every single day. Perhaps for the rest of her life.

She wasn´t worried about the costs -- insurance would pay for it. She decided to give it a try.

Her first shot was the morning of Sept. 14, 2001.

"I remember because of 9/11," she said. "It was right after that."

NOW

Goforth likely would not meet your expectations of a woman battling what can be a devastating chronic disease.

"You would never know I have it," she says, tan and energetic, perched on the edge of her seat at one of her hangouts, Rembrandts Coffee House in Eagle.

Surrounded by bright-colored paintings in the roomy converted church, Goforth could be any other of the professionals or middle-class moms who fill this place in the afternoons.

Now, both of Goforth´s daughters have gone to college at Cal Poly-San Luis Obispo, not far from where they spent their early years.

She and Mark are divorced now. Ryan, her youngest child, is 12 years old. Goforth and her boyfriend, Shawn Hammond , are remodeling the bathrooms in her house.

In all of this, over all these years, one event had the greatest impact on her life. It wasn´t the daily shot regimen. It wasn´t even the diagnosis of the disease.

It was an unexpected consequence of her divorce.

THE FACTS

On the Goforths´ seafood company´s group insurance plan, Goforth´s Copaxone prescription cost her about $25 a month.

On the state-mandated insurance provided by the high-risk pool, she has to pay half of the costs out of pocket. And her state-subsidized bill just went up: to $746 a month.

At the pharmacy, the clerks just shake their heads.

THEN

Mark kept Traci on his company´s insurance for a while, but in a small group, one expensive patient can drive up the costs for everybody. The company couldn´t afford to keep her on the rolls.

Then her father pulled some strings at the company he owned in California. She did a little work and got on the payroll and insurance rolls. But he sold the business soon after, and in December 2004, she was left to face the open insurance market.

Her doctors don´t want her on her feet all day. Working 40-hour weeks could speed the disease, they tell her.

When Goforth called the insurance broker who handles her car and home insurance, she told him everything.

"I´ll get back to you," he said. "Don´t plan on it being real inexpensive."

She looked to Medicare, the federal program that provides health care to aging Americans. She inquired about Medicaid, paid for with state and federal dollars to help low-income Idahoans and people with special health needs. She tried Social Security, which offers financial aid to people with disabilities.

"I was not old enough for Medicare," she says. "Not sick enough for disability."

Neither poor nor disabled enough for Medicaid.

She thought about moving to Canada, where laws hold prescription-drug costs in check.

"Seriously," she says.

The broker pointed her to the high-risk insurance pool. She now pays $415 a month in premiums, a $2,000 deductible and half of all her drug costs. Even if she faces no other health problems in a year, that´s almost $14,000 in medical bills.

"I didn´t know where else to go," she said.

Her father helps her pay for it all.

"At my age, it´s quite embarrassing," she says. She´s 43 now. "What am I supposed to do?"

NOW

Goforth sits at the coffee shop. She talks fast, and you get the feeling she could keep up when her two daughters were in their teens.

She talks about her search for work, which hasn´t gone all that well.

She has applied at the school district, thought about Starbucks. Anywhere that has a big enough group of employees that she doesn´t hurt everyone´s chance for a decent insurance plan.

"I would probably work for free," she says. "Just so they would give me insurance."

She doesn´t feel that sorry for herself. She knows many people have it worse.

Still, she gets mad sometimes, thinking about how healthy she feels and acts and how she´s treated so differently by the health-care system because she needs the drugs.

"Some people fall through the cracks," she says. "If you´re not healthy, you can fall through the cracks."

NICE STUFF, NO MONEY

At her home in Eagle, the Copaxone vials fill the butter shelf in her refrigerator.

Bo and Allie, her standard poodles, tear around the big back yard. Traci´s plowing down a sandwich because she has to be in Boise soon for another appointment in another of her always-busy days.

She lives in a dream house -- hers clear after the divorce -- and she knows it. But when she explored downsizing, she realized she´d have to pay more than she did for this home for a much smaller place in another part of town.

Without her father´s help, she couldn´t afford any of it, even with her boyfriend chipping in.

"I´m in this weird position," she says. "I have all this nice stuff, but I have no money."

She thinks about needing to work, whatever it means to her health. But her son Ryan is now in middle school.

"That´s an age when you don´t really want your kids to be home alone," she says.

She´s not sure what´s next, but she plans to make it work.

"I don´t think about it," she says. "I don´t wake up and on a daily basis and think, ´Oh me, I have MS and now I have to get through the day.´

"I brush my teeth, put on my make-up and take my shot. It´s not weird. It´s normal."

Contact reporter Gregory Hahn at ghahnidahostatesman.com or 377-6425.