Equal accessTHREE drugs being recommended for the first time by the National Multiple Sclerosis Society to control the disease are priced out of reach for many island patients.
urged to power trio
of MS drugs
The drugs are effective
but far too costly for many
patients, officials say
By Helen Altonn
Costs average about $10,000 a year or more for the "ABC" drugs -- Avonex, Betaseron and Copaxone -- said Lyn Moku, manager of the society's Hawaii Division.
Studies have shown the drugs can reduce the number and severity of attacks for patients with the remitting-relaxing form of MS, and they also slow progression of the disease, she said.
However, they affect people differently, and patients who can tolerate only one are telling her they may not be able to pay for it, she said.
Multiple sclerosis is a chronic disease of the central nervous system.
The ABC drugs are the first to treat the underlying causes rather than just symptoms, said Susan Sliegel, director of state, local and government relations for the Washington-based national society. It is important that doctors be able to prescribe the most appropriate drug because of side effects and different reactions, she said. "We have really been advocating equal access to all three drugs."
But all three of the injectable drugs are expensive, and costs are going up for Kaiser Permanente members.
Kaiser has switched from a monthly co-payment for a 30-day supply of doses to per-injection co-payments, Moku said. It is also raising its co-pay cost under some plans from $7 to $10 next month.
"It's just such a drastic change. It really does not provide equal access for drugs because of the cost for an injection," Moku said. "For some of them, it's just pricing them out of their range.
"Right now it's a Copaxone issue," she added, because it must be injected daily. Avonex is injected weekly, and Betaseron every other day.
For some Kaiser members, costs will go to $320 per month for Copaxone, $160 per month for Betaseron and $40 for Avonex, Moku said.
Kaiser spokeswoman Jan Kagehiro said: "Raising co-pays keeps the overall premium as affordable as possible. ... Our overall drug costs have been going up 15 to 20 percent per year, and we don't see an end to that trend in sight."
Hawaii Medical Service Association (HMSA) members in PPO plans pay 20 percent for drugs, said vice president Cliff Cisco. That would amount to about $160 for a month's supply of Avonex injections and $180 for Copaxone, he said.
HMSA's Health Plan Hawaii pays 100 percent for drugs, he said.
Kai Mathiesen, 41, is among residents with multiple sclerosis who are joining the campaign to make the drugs affordable.
Diagnosed with MS three years ago, "I was very disabled by the disease, and it's the medication that has kept me where I'm at," she said.
Mathiesen was working part time earlier this year, but was able to return full time to her job as administrator for residential services for Catholic Charities on Nov. 1.
"In fact, I'm working way more than full time. There is no way I would have been able to do it if I was not on Avonex."
Avonex works well for her, but both Avonex and Betaseron have "pages of side effects." Copaxone is the best, but also the most expensive.
Mathiesen's neurologist wanted her on Copaxone because Betaseron was not working for her. But Avonex is the only drug she can afford with Kaiser's change to per-dose payments. She is paying $28 per month.
"Usually it's not the way to go," she said, explaining that Avonex causes flulike symptoms in some people and is hard on the liver. "But I'm on it and it's working great."
Moku said the Hawaii Division, patients and supporters are writing letters to doctors, hospitals, insurance officials and local and national policy makers to get changes.
Sliegel said the national society is "advocating on many fronts" to ease the situation for MS patients, including promoting prescription drug coverage through Congress.
Besides making the drugs affordable, Mathiesen said, "We would give anything if they were available in oral form. Some people are so disabled, they can't give their own shot."