Living with MS: A Perspective on the Patient Journey
In honor of Multiple Sclerosis (MS) Awareness Month, an MS patient and advocate at CoverMyMeds voices her experience and shared commitment to getting people the medicine they need to live healthier lives.
Despite nearly 1 million Americans suffering from multiple sclerosis (MS),MS Prevalence, National Multiple Sclerosis Society, 2020 many are still unfamiliar with the disease. That’s likely due in part to what Brigette Bartlett, technical account manager at CoverMyMeds, said when speaking of her own diagnosis: MS is often an invisible disease.
MS affects the central nervous system; Myelin sheaths that insulate connections between nerve cells are thought to be progressively destroyed by the immune system in a process called demyelination. Areas of the brain in which myelin is lost — called lesions — become hardened into scars (“sclera”), which are observed during MRI scans and negatively impact the speed at which nerve cells communicate. As a result of demyelination, patients can experience impaired vision, sensory and motor functions.What is MS?, MS International Federation, 2021,Multiple Sclerosis, National Organization for Rare Diseases, 2020
All current therapies for MS are considered specialty medications, which means patients diagnosed with the disease face significant challenges in accessing, affording and adhering to their prescribed therapies.Make MS Medications Accessible: Recommendations, National Multiple Sclerosis Society, 2019 Supporting patients throughout the complicated specialty journey — and helping make workflows for their providers and care teams more efficient — is an important step toward helping them live healthier lives.
To truly understand MS and the challenges patients face daily, we interviewed a member of the CoverMyMeds team who has first-hand experience with the disease. Here, Brigette Bartlett, account manager, shares how MS has affected her life.
After diagnosis, challenges and a new normal
Let’s start with your experience with MS and then discuss your advocacy efforts. Can you describe how MS has affected your life? When did you first hear about it?
I was diagnosed with MS in 2015. I experienced numbness and tingling in different parts of my body until eventually I couldn't feel my left leg or arm. I remember going to a restaurant and having to lean on walls to walk.
When I went to the doctor, they said it was either a brain tumor, an infectious disease or MS. I had no idea what MS was. After my diagnosis, a relationship and several friendships ended. Often, I was too exhausted to go out with friends after work and on the weekends — this put a strain on friendships.
Thank you for sharing that difficult story. From your answer, there seems to be a need for additional MS awareness and patient advocacy. You hadn't heard of the illness before it personally affected you. What has been your experience with treatments for MS? Is it tough to get on therapy?
Starting MS therapies can be difficult. After my diagnosis, I was prescribed an MS medication and it took four months to start therapy. In addition to lab work, my insurance required prior authorization (PA). I was initially denied therapy and asked to try a painful injectable, but my doctor appealed, and I was eventually prescribed an oral drug.
Since then, I’ve changed insurance a few times. Each time, the process starts all over again. Before taking the medication for the first time, or after accidentally missing a dose, I had to be monitored in case of an adverse event, which was tough to coordinate with my schedule. Also, my medication was only available through the mail and had to be signed for.
For someone with MS, in which physical exhaustion is a common symptom, it isn’t easy to start therapy. The process was frustrating, because I had no control or visibility into what was going on — and I couldn’t get straight answers on the status of my prescription.
Fortunately, I’ve not had an MS flare-up for several years and have been able to suspend therapy. I want to see how my body will react without medication, or figure out if I even need medication, and to think about starting a family.
For someone with MS, in which physical exhaustion is a common symptom, it isn’t easy to start therapy. The process was frustrating because I had no control or visibility into what was going on and could not get straight answers on the status of my prescription.
Brigette Bartlett
Starting a specialty therapy isn't easy, and MS patients may need additional support during the process. What else do you want people to know about MS and MS patients? How can people get involved to help?
I want people to know that no two MS patients are the same. However, we're all hoping and fighting for the same cure.
To find a cure, we need to continue spreading awareness and funding research into MS. Events like Walk MS are perfect opportunities to show support and make donations.
The latest healthcare insights, floated right to your inbox.
