Debbie Perkins’ persistent smile makes it hard to gauge how difficult multiple sclerosis makes her life.
She’ll tell you about calling 911 because she was too weak to get up after a fall. But she follows that with a smile and a plug for how nice the Norman firefighters are.
In the midst of listing off the nine medications she takes, she’ll explain how grateful she is for their benefits.
Perkins decided early on in her disease that multiple sclerosis was not going to take over her life.
“I have my moments, when I fall or when I’m weak or when I’m just not having a good day,” Perkins said. “I get depressed, and I might cry, but the fortunate thing for me is, I just look around and think, ‘Look what all you have.’”
Perkins considers herself one of the lucky ones, for she has had access to health care. There are more than 3,400 people in Oklahoma living with multiple sclerosis, according to the National Multiple Sclerosis Society’s Oklahoma chapter.
Multiple sclerosis, or MS, is an unpredictable disease of the central nervous system, according to the National Institute of Neurological Disorders and Stroke.
Most people experience their first symptoms, often times blurred vision or blindness in one eye, between 20 and 40, according to the institute. Symptoms of the disease can range from relatively mild to partial or complete paralysis, according to the institute.
There is no cure for multiple sclerosis, but Perkins’ physician, Dr. Gabriel Pardo, is optimistic there will be significant medical advances in treatment options for MS patients.
Since the early 1990s, treatments for multiple sclerosis have continued to improve, said Pardo, director of the Oklahoma Medical Research Foundation’s Multiple Sclerosis Center of Excellence.
The first three long-term treatments for multiple sclerosis became available in the 1990s and were dubbed the “A-B-C” drugs because of their brand names: Avonex, Betaseron, and Copaxone, according to the Multiple Sclerosis Association of America.
Currently, there are multiple MS drugs that are in different stages of development, Pardo said. For example, there are three drugs that are expected to finalize their Phase III trials and seek FDA approval over the next few years.
The current treatments don’t work for everyone, and these new drugs bring hope for multiple sclerosis patients who have yet to see relief from their disease, Pardo said.
“Having other medications that work through different mechanisms open the possibility for us finding a medication that works for that given patient,” Pardo said.
There’s a bigger conversation around finding a cure for MS, too.
If researchers can cure multiple sclerosis, there’s hope they can cure other autoimmune diseases, too.
Drugs are expensive
For example, BG-12, which is expected to get approval from the U.S. Food and Drug Administration in the next few months, has shown promise in treating not only multiple sclerosis, but also psoriasis, another autoimmune disease, Pardo said.
However, the price of these drugs remains high for patients.
For example, Perkins, 54, takes eight pills a day and self injects another medicine every other day.
Her insurance pays $56,500 per year for her medicine.
She pays about $3,400. Her injections cost $3,569. Ampyra, a drug used to improve multiple sclerosis patients’ ability to walk, costs $1,200. One of Perkins’ anti-fatigue medicines costs $2,719 for a 60-day supply.
On average, someone with multiple sclerosis will pay about $50,000 per year for their treatment.
Perkins retired in 2010 after 15 years working in health care.
Thanks to her past employers, she’s insured and has a pension.
But not all MS patients have access to health care or the financial means to afford treatment, said Jennifer Philp, the programs and services manager at National Multiple Sclerosis Society Oklahoma.
“Even with good health insurance, it’s a very expensive disease,” Philp said.
It’s not uncommon for an MS patient to have frequent visits with their neurologists and other health care providers, she said. There’s significant follow-up associated with treatment, and oftentimes, a patient is also being treated for symptom management.
“If you don’t have access to good health insurance, then you’re talking thousands and thousands and thousands of dollars for a given individual,” Philp said. “Even if you do have health insurance, it can be quite costly, and people’s out-of-pocket expenses can be greatly exaggerated just because of a chronic disease they have no control over.”
In the 1990s, Perkins was a single mother living paycheck to paycheck. She wanted more for herself and her children, and she had always dreamed of being a nurse.
It seemed like a good time to finally live that dream. But while in the middle of nursing school, Perkins was diagnosed with multiple sclerosis.
That was about 20 years ago. Today Perkins uses a motorized wheelchair because walking has become more difficult. She drives using a conversion van, which cost her about $24,000 to convert.
Perkins regularly attends a Pilates class in Norman that helps her retain strength in her legs.
She works in her garden and spends time with her toddler grandson.
She’s found retirement to be pleasant, regardless of the fact that the fatigue of MS can sometimes slow her down.
“God has made me realize I have so much to be thankful for,” Perkins said.
“My disease is not a death sentence. It is disabling, but it’s not a death sentence.”