‘Fearful for the future’: Father, daughter fight different forms of MS

Even when it strikes people within the same family, multiple sclerosis isn’t necessarily one disease.

For Michael Bunting, it’s an illness that has left him unable to walk, makes it difficult for him to speak, forced him to fight to keep his job during his working years, and has no effective treatment. For his daughter, Rebecca Kuchar, it’s a condition that has several treatment options, hasn’t prevented her from working, and hasn’t taken away her ability to walk — although she’s worried that one day it might.

The reason is the father and daughter have two different forms of the disease. Both involve the body’s immune system attacking the protective covering around nerve fibers and the fibers themselves.

But Kuchar has relapsing MS, which causes her symptoms to flare in cycles, followed by long periods of recovery. For that form of the illness, there are now more treatment options than ever, thanks to the last two decades of medical research.

Bunting, however, has progressive MS — his symptoms don’t come in cycles, but his overall condition steadily declines, with no end in sight. Medical science hasn’t given him any more options than he had when his condition was diagnosed in 1983. There are no approved treatments, so he’s tried everything his doctors have wanted to try on him, including, for a while, chemotherapy.

The main challenge the father and daughter, both living in the Detroit area, have in common: Both are spending heavily on treatments, and neither one has a cure in sight.

“All of us are incredibly fearful for the future,” Kuchar, 37, said. “I don’t know whether I’m going to wake up tomorrow and be blind. I don’t know whether I’m going to wake up tomorrow and be in a wheelchair.”

That’s why she needs a cure, not just treatments, for her symptoms: “I literally dream every night of waking up to someone saying, ‘We’ve got it.’”

Read more: Fighting the deadliest diseases, one step at a time

Multiple sclerosis is among the chronic diseases that have stubbornly resisted a cure despite advances in medical science and the development of more effective treatments for other conditions.

It’s also among the diseases that can get overlooked in Washington. Unlike cancer, it doesn’t have its own institute at the National Institutes of Health, or a specific amount of money set aside in President Obama’s Precision Medicine Initiative. And unlike Alzheimer’s disease, it doesn’t have its own funding increase guaranteed in the spending bills now working their way through Congress.

While cancer research is expected to get an estimated $5.4 billion in federal funding this fiscal year — followed by $3.1 billion for HIV/AIDS, nearly $2 billion for cardiovascular disease, and more than $1 billion for diabetes — multiple sclerosis is expected to get just $103 million.

But it’s still a disease that makes it extremely difficult for people to live their lives. They have numbness or weakness in their limbs, they feel uncoordinated, they get blurred or double vision, they get a tingling sensation, their speech gets slurred, and it becomes hard to think. For some, like Bunting, the disease advances to the point where they can’t walk anymore.

Research on the disease has clearly advanced over the years — at least for people with relapsing MS. There are currently 13 treatments that can slow the progression of that form of the disease and three that can soften the impact of relapses.

But people with relapsing MS who receive treatments can still experience crippling symptoms.

During a relapse, “I can’t walk, I can’t talk, I can’t open my eyes. … It’s literally like you run out of batteries,” Kuchar said. “It’s like I’m underwater with sandbags going uphill. It feels like that kind of fatigue.”

Kuchar, whose multiple sclerosis was diagnosed shortly after her first daughter was born, just gave birth to her second daughter after the pregnancy forced her to put her normal treatments on hold. Usually, she takes injections of Copaxone, one of the medications that attempts to slow the progression of the disease. But as long as she was pregnant, she couldn’t take any medications for the disease.

So Kuchar’s doctors had to work out a plan to restart her medications after the birth, starting with steroids to bring any emerging symptoms under control. That’s especially important since she got hit with a relapse right after her first daughter was born.

For Bunting, the consequences of the illness have been even more disastrous. It hit him when his kids — including Rebecca — were young, robbing him of the ability to play with them and eventually confining him to a wheelchair. “I couldn’t jump, I couldn’t dance, I couldn’t do those kinds of things you normally do with your family members,” he said.

Bunting has tried a variety of medications, but even the ones that have been developed for relapsing MS don’t work very well on his progressive MS because the two forms of the disease work differently.

Now 66, Bunting also takes Copaxone, as well as a medication called Baclofen that relieves muscle spasms, and two compound therapies. The Copaxone isn’t meant for progressive MS, but he takes it “because there’s nothing else for him,” according to his wife, Ann.

It’s an expensive disease. The Copaxone alone is $4,000 a month, and that’s before other doctors’ bills. Bunting and his wife are retired now, with Medicare as their primary source of health coverage and a Blue Cross Blue Shield plan to pay for the expenses that aren’t covered by Medicare, including drug costs. The insurance limits their drug bills to an average of $300 to $400 a month — but there are other issues, like the limits Medicare places on the amount of physical therapy Bunting can get.

Kuchar, meanwhile, expects to pay as much as $10,000 out of pocket this year for her own MS treatments and medical appointments.

Despite all of their struggles, Kuchar still sounds hopeful that medical research will be advanced enough to be more helpful to her children, even if they do face an elevated risk of developing the disease. “We’re talking today in an age where we’re hopeful that by the time my daughter is in her teens, that medical research will be so much even further advanced. … That’s my hope,” she said.

Bunting, however, is less optimistic.

“Let’s put it in perspective: They’ve been after cancer for 40 years, 45 years, and they’re still looking,” he said. “So I have no idea how long it’s going to take them to come up with a solution to MS.”