The Frontlines of Specialty Pharmacy: MS from a Patient Perspective
Multiple sclerosis advocate discusses the difficulties patients face during treatment.
Multiple sclerosis advocate discusses the difficulties patients face during treatment.
You were just diagnosed with multiple sclerosis (MS). How do you react? Do you allow the diagnosis to overwhelm you? Do you sit down and let the disease take over your life? Or do you stand up and fight? Do you take initiative? Do you aim to make a difference?
For Weyman Johnson, the decision to become an advocate for MS came well before his diagnosis with the disease. His diagnosis in early 1990 was one of four that affected his family. His father, sister, and aunt all were diagnosed with MS in adulthood as well.
Because of his years of experience with the disease prior to diagnosis, Johnson said he wasn’t shocked or scared when his doctor broke the news. Instead of feeling sorry for himself, he worried for his family.
“I was concerned that it all seemed to be piling up on my parents. I knew it was something they didn’t want to hear,” he explained.
Even with the effects of the disease fresh in his mind due to years of watching his father struggle with MS, Johnson maintained a positive attitude in the face of diagnosis.
“I knew a lot about the disease, so I knew that it has a wide range of heterogeneity,” Johnson said. “Everybody’s different. I knew that my course didn’t have to be the same as others that I had seen and I just needed to take care of myself.”
Johnson’s course of treatment was much different than others he had encountered. With extremely moderate symptoms and generally good health, Johnson was able to keep his job and keep working through his disease. In fact, he did not officially go on a treatment regimen until the late 1990s.
“I heard one of the chief medical officers and a volunteer with the National Multiple Sclerosis Society (NMSS) give a speech to the Georgia chapter of the NMSS and he made an interesting observation,” Johnson explained. “He said that he had treated a lot of people and had a lot of people as friends who had a benign course of the disease when they were in their middle age years, but now they’re in their 70s and they’re not having good 70s. He was recommending that if you have a diagnosis, we have enough experience now with these treatments and the early ones that are not harmful didn’t have a lot of side effects at all, that you ought to be on one. I thought, I want good 70s. For about 17 years I’ve been on one of the disease modifying therapies now.”
While Johnson hasn’t noted any particular advantage to being on the medication due to the fact that his symptoms were generally kept under control, he does note that certain doctors claim the regimen helps in other areas that are not related to MS.
“My present neurologist is glad that I have done this and recommends that I continue on the same treatment, probably indefinitely. I’ve had other doctors say, ‘what you’re taking isn’t interferon and it’s probably making you healthier generally.’ I don’t know that that’s true but I like the optimism that shows,” Johnson said.
Optimism is something that comes easily to Johnson. He is grateful for the fact that his disease course has not been as severe as others he has encountered because it makes being a patient, as well as an advocate, less stressful.
“I may not have had to face [difficulties] the way somebody who had severe symptoms would face it. Somebody with severe symptoms would have difficulty some days putting the energy in that I have every day. I do have some problems with fatigue, but they’re not bad,” Johnson said.
He also noted that some patients with MS may have difficulty being open about their disease, feeling as if they are advocating solely for themselves.
“I don’t know that I would have that problem because that’s just not my personality type, but I can understand that issue,” he added.
But being an advocate has never been a problem for Johnson. In fact, he says he feels fulfilled being involved in the advancement of the MS movement.
Johnson became involved in the movement through a friend and former work colleague of his father named Rease Inge.
“He was active with the Georgia chapter of the NMSS in the 1980s. In fact, he was the chair, I think, when he picked up the phone, called me and said, ‘I think it’s high time you came and helped me.’ And so I did,” Johnson recalled.
Since then, Johnson has served on the boards of various MS organizations, such as the Georgia chapter of the NMSS. He currently serves as the chair of the Multiple Sclerosis International Federation, and he served as chair of NMSS from 2005 to 2009. His efforts to advance the MS movement have given him nothing but joy.
From his years of service to the MS movement, Johnson has observed a few key areas that make patients’ lives problematic. High costs and unknowledgeable professionals make the battle against MS even more difficult for patients, according to Johnson.
“I’m not one to say that the pharmaceutical companies are the villains in this, though I wish they were more transparent about how the pricing works because I just have a lot of frustration with that. There’s really not a sensible basis for it. It’s a big societal problem and I don’t think we’ve yet figured out a way to think about it clearly,” said Johnson of the high cost of MS drugs.
Medications can cost patients up to $50,000 per year, making access to these treatments a constant financial struggle.
Even with the high costs of medication, however, Johnson said that patient adherence is not as problematic as it once was.
“Some time ago when all they had were injectables, a lot of people were uncomfortable with that. One of the things now is that the market has provided a number of orals that have some side effects, but they’re doing pretty well,” Johnson said. “A lot of my neurologist friends are starting their newly diagnosed patients with MS on one of the orals, such that then compliance is not as much of a problem. As long as the person can get access and has good insurance, they’ll be able to take something that’s easy.”
But for patients diagnosed some time ago, this was not always the case. In fact, when Johnson’s father was originally diagnosed, a treatment option did not yet exist for MS, making his life particularly difficult to manage.
“There was nothing. There was no disease modifying therapy. There was nothing to be done except to take general care of yourself. I saw [my father’s] frustration because being diagnosed then is not the same as being diagnosed after the Americans with Disabilities Act,” Jonhson said. “There’s not only legal protection now, but more societal acceptance of the disability movement and of persons with disabilities remaining active in life.”
But even as Johnson’s father was taken away from the workforce due to his disease, he did not allow the limitations to suppress his will to participate in life. Like his son, he was resilient in the face of his diagnosis and found creative ways to continue participating in daily activities.
Johnson attributes his, his father’s and his sister's strength in the face of disease to the support of his “care partners,” his mother, wife and brother-in-law. Care partner is the phrase Johnson uses to describe those who help patients with MS manage their disease. He says this phrase properly illustrates the dynamic patients should have with their caregivers.
“I’ve just seen all of them, in addition to my uncle who was married to my father’s sister, respond very courageously but without turning the person with the disability into an object,” he noted. “Without treating them in any way that could ever be interpreted as condescending or as making the decisions for that person. Rather, they just sustain the person and act as a person.”
While Johnson maintains a positive attitude about the state of MS support, he says there is still much work to be done in regards to getting proper funding for the National Institutes of Health and scientific research in general.
“It’s really one of the problems that we have right now: there’s much to be thankful for with the development of very good treatment for relapsing remitting MS over a couple of decades, but there really is not anything for progressive or severe MS,” Johnson said.
But Johnson remains hopeful that the efforts spearheaded by the United States and the MS International Federation, the UK MS Society, the Italian MS Society, and the Canadian MS Society, to conduct further research into this area will yield positive results for patients with MS around the world.
Johnson encourages those who have been diagnosed with MS to join in the movement, stating that their involvement could help them as well as others.
“Get involved with your local MS society chapter wherever you live, because you can learn more and at the same time help other people to learn more and you can help to raise money to promote research into the disease generally,” Johnson urged. “Be aware that your disease course will not necessarily be the course you've read about. But that’s all the more reason you need to learn more and you need to get involved and meet more people who are affected by the disease and try to help to find answers.”
Johnson’s advocacy is awe-inspiring, with nearly 30 years’ experience in the MS movement. As he looks towards the future, he sees nothing but hope and advancements to be made in the fight against the disease that has run rampant throughout his family. He holds his head high and continues to be a part of something greater than himself, not allowing the limitations of MS to take over his life like it can for so many others.