First and Foremost a Patient Advocate

CSI Pharmacy’s LaDonna Johnson can’t help wanting to help others.
CSI Pharmacy’s LaDonna Johnson can’t help wanting to help others.

When LaDonna Johnson agreed to participate in a focus group with representatives from Octapharma, she was doing so as a patient. LaDonna, who serves as Patient Advocacy Coordinator for CSI Pharmacy, lives with dermatomyositis (DM), a rare disease of the muscles that also affects the skin. When The Myositis Association (TMA), a support and advocacy organization for those who live with or care for someone with myositis diseases, announced that they were collaborating with the makers of Octagam, a brand of immune globulin (IG) therapy, LaDonna was all in.

“They know about how IG works, but they didn’t know what it was like for patients and how the drug could work for us,” LaDonna says. “So they wanted to get our perspective as patients. Most of all, they wanted to know how we were doing and how we were feeling with this difficult disease.”

Last year, the Swiss pharmaceutical company received FDA approval for Octagam 10% to treat dermatomyositis. This is the first proven therapy for DM to receive FDA approval for any myositis disease, even though it has been used off-label to treat these conditions for many years. The focus group, one of two held at Octapharma’s corporate office in Paramus, New Jersey last month, was organized to help the company better understand the experiences and needs of those who live with this disease.

As she sat around the table with fourteen other patients, telling the story of their years-long diagnostic odyssey, their ongoing symptoms, and the impact immune globulin therapy has had on their lives, LaDonna soon discovered that she was more informed than most. Her experience as the former Membership Services Manager for TMA also gave her far more insight about what people go through when they live with these diseases than the half dozen Octapharma staff members who were there to learn.

As she listened to one person after the other talking about the challenges they faced, it was the patient advocate in her that really kicked in.

When several patients said they struggled to get a diagnosis or adequate treatment because their doctors didn’t know much about myositis, LaDonna insisted they go to the TMA website and download The Physicians Guide to Myositis and give it to their doctors. She suggested they seek out the experts at Johns Hopkins Myositis Center or one of several other myositis centers across the country. And she reminded them that TMA has an Annual Patient Conference where they and their loved ones can learn more about their disease and how to live more fully with it.

TMA’s Annual Conference was another resource LaDonna recommended for those who felt isolated because they have never met another person with myositis before and their family didn’t understand what it was like for them. She also suggested patients join TMA, find a local support group, or go online and join one of the virtual groups through TMA or one of the other myositis organizations, such as Myositis Support and Education (MSU) or, for those with juvenile myositis, Cure JM.

“It just seemed like I had information that people needed,” LaDonna says. “Everyone was telling their story, and I’m just telling them what they need to do to find the resources they need. And both the patients and the Octapharma people, they were more appreciative of that than anything else.”

Despite being one of the most informed people in the room, however, LaDonna came home with a new appreciation for this global pharmaceutical company. She was impressed, for example, to learn that Octapharma is a family-owned company. And she was amazed that it takes around a thousand plasma donations to make one vial of immune globulin. Most of all, she was impressed by the company’s empathy for people who rely on their products.

“They said it wasn’t about the money,” LaDonna says. “It’s about making sure that they are reaching who they need to reach, and that people are feeling better. In fact, their goal is for everyone to go into remission, so they don’t have to use this medicine anymore.”

In addition to DM, LaDonna also lives with several other autoimmune conditions, along with diabetes that began as a side effect of using prednisone in high does. She’s hopeful that her DM will go into remission without needing to use IG therapy. But if she ever does need it, she knows where she will go for help. And if she does need it, she’ll have that much more experience to share with others.

“We’re not an island unto ourselves,” LaDonna says. “Everyone is doing the best they can, but it’s hard when you don’t have the right kind of resources. I just wanted to give everybody the tools they need.”

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