News staff writer
The Birmingham News
Tony Tanner, Jessie Tehranchi and Henry Levkoff are among a new generation of people afflicted with multiple sclerosis who are manag ing their illness with medications.
But they are not cured. MS destroys my elin, which makes up a sheath that covers and protects nerves like the insulation on electrical wires. The result is numbness that can creep up an arm or leg until feeling is gone. MS may lead to visual disturbances, vertigo and, finally, disabling paralysis that is usually irreversible.
In the 1990s, the Food and Drug Administration approved what are now
known as the A-B-C drugs — Avonex, Betaseron and Copaxone. These drugs
have given Tanner, Mrs. Tehranchi and Lefkoff weapons in a battle to slow
A recent study published in the New Eng land Journal of Medicine showed the effectiveness of one of these drugs — Avonex. The drug delayed MS significantly in almost half the patients who took it. In some cases it appeared to halt the disease, although the pa tients were only followed for three years.
The study raised questions about why only about one-third of people with MS are taking the drugs. There are barriers such as fear of injections, side effects and a cost of between $10,000 and $12,000 a year, which is usually covered by insurance, Medicare or assistance programs.
In addition, MS diagnoses are sometimes uncertain, leading to uncertainty about treatment. Also, newly diagnosed people often feel fine, leading to delays in starting treatment when it is most crucial — before irreversible nerve damage occurs.
And the drugs don't work in everyone.
''These are not cures," said Dr. John N. Whitaker, chairman of the University of Alabama at Birmingham's Department of Neurology and a renowned expert on MS. ''But it's truly made a difference in the management of this disease."
An estimated 350,000 people in the United States have MS, and about 4,000 of them are in Alabama. Only 100,000 people with MS in the United States are taking the A-B-C drugs, Whitaker said.
''There are certainly more pa tients who warrant treatment," Whitaker said.
Tanner, Mrs. Tehranchi and Levkoff take different A-B-C drugs, with the same hope of slowing MS.
Tony Tanner leans his crutch against a rich, wooden cabinet in his den, which is filled with mementos of his family and his accomplishments as one of the founders of HealthSouth.
He was diagnosed with multiple sclerosis in 1986, when he was 38, just after HealthSouth began offering its stock to the public.
Tanner remembers lying in bed, "taking inventory" of his body.
He knew a young woman who had MS and she had quickly deteriorated to point of needing a wheelchair.
"I thought: 'That ain't going to be me; it can't be me.'"
He kept working, and so did the dis ease. In 1993, he fell in an airport in Mexico and couldn't get up. He was treated with steroids intravenously, and soon started taking Betaseron, which had just been approved by the Food and Drug Administration.
"I've been on it ever since," he said.
For Tanner, there's no question about taking Betaseron for his multiple sclerosis, even though it requires injections under his skin every other day.
Tanner, 51, of Hoover has lost some function in his right legs, arm and hand, but believes his condition would be much worse without Betaseron.
"It's been proven," he said.
The drug can be a hassle. It costs about $10,000 a year, but Tanner's insurance reimburses him for most of that. Betaseron requires refrigeration, and there are little red spots where he gives himself shots in the leg.
"I've got my red marks, but it's not bad," he said. "Some people do have skin breakdown."
He retired early this past De cember, and still takes trips with his wife and enjoys life.
"You accommodate," he said. "You be what you can."
One of the things Tanner de cided to be was head of the Ala bama Multiple Sclerosis Society, and he sits on the board of the National Multiple Sclerosis Society.
He often talks with people who have just been diagnosed with MS, and tells them to quickly get on one of the A-B-C drugs.
"It's a matter of working with what you've got," he said. But he acknowledged that sometimes, "it is hard; it is so hard."
Jessie Tehranchi, 51, of Vestavia Hills, was diagnosed with multiple sclerosis in 1987 after she lost her vision.
"When I was first diag nosed, there was really no drug," she recalled.
She ended up in a wheelchair in 1995 and then started on Betaseron to slow her MS.
But Mrs. Tehranchi didn't like giving herself shots every other day. The Betaseron gave her flulike symptoms at first and shots left her with "horrible bruises."
So she stopped taking it. A year later, a doctor per suaded her to go on Avonex, which was approved by the FDA in 1996. It requires injections in a muscle once a week, and Mrs. Tehranchi's husband gives her shots.
Avonex is "just doing its job perfectly," said Mrs. Tehranchi, a former elementary school teacher.
She understands that it won't cure her. "It's just going to slow down the progression." She has lost much of the use of her legs, but her upper body strength is pretty good, she said. Like many people with MS, she is devastated by heat. "It shuts you down," she said.
Medicare pays for her Avonex, which costs about $11,000 a year, but she's constantly con cerned that the money will be cut off.
"It's pretty darn frightening," she said. "It's a nightmare when you've got that threatening."
Mrs. Tehranchi is active in health care issues and believes strongly that people diagnosed with MS should start shots as soon as possible.
"For people who don't have access to these drugs, life is cruel," she said.
She's had a friend with MS who decided against taking the drugs.
"One of them didn't want to deal with the shots," she said. "That's often the reason people don't take it."
She watched her friend deteriorate, Mrs. Tehranchi said.
"These drugs are working," she said. "The choice of not taking them is too risky."
Henry Levkoff, 43, of Homewood, was diagnosed 16 years ago with MS. "I was having balance problems and tingling and numbness around my waist," he re called.
At first, he didn't tell anybody but his wife. He continued working as an advertising copywriter, but went on disability last year after suffering from overwhelm ing fatigue and memory loss.
"The fatigue factor is great on MS," he said. "It's been a struggle."
He started taking weekly injections of Avonex, but couldn't stand it.
"I could not tolerate the side effects," he said. "It was like injecting myself with the flu. It made it very difficult to get up and work."? Then, he started on Copaxone, which came out in Decem ber 1996 and requires daily injections under the skin. "The difference in the side effects was remarkable," he said.
The medication costs about $1,100 a month, and it's paid for through his wife's insurance. He used to have a policy that paid only 80 percent, he said. "That added up very quickly."
Once in awhile he gives himself the shots, but usually his wife does it since he's pretty jittery, Levkoff said.
"Giving myself a shot is some times like giving myself a tattoo," Levkoff said. "It's tough — jabbing yourself with a needle."
He's convinced that the shots work, but acknowledged that it takes "a leap of faith." He'll never stop the medication, he said.
"There's some things you don't gamble with, and this is one of them. You don't gamble with what you can't afford to lose."
He hopes the shots allow him to continue helping to raise his two children, an 11-year-old and a 4-year-old.
"Psychologically, when you find out you have a disease, you try to press
ahead," he said. "You don't have much control with this disease. But this
medi cine give you some control."
© 2000 The Birmingham News.