THEY ALREADY TRIED EVERYTHING.
HOW DO YOU GET PATIENTS WITH A DEBILITATING DISEASE TO TRY AGAIN?
First, you let them know you get it. Then, you help them recognize whether they’ve been looking at the wrong things– which means there is another way forward.
Pharmaceutical company Alexion.
Consumer/patient disease for refractory generalized myasthenia gravis (MG)
Educate patients about a certain branch of their disease, one they typically don’t know they have: refractory MG vs. generalized MG. Once this distinction is understood, the reasons for failures with their previous treatments are clear and accurate knowledge about their condition can empower them to find new paths forward. Encouraging patients to continue collaborating with their doctors was a focus.
Note: concepts are in sketch and unpublished.
Convey the patients’ experience to them– the heterogeneity of the disease not only among patients, but throughout a single day for any one patient. It’s the way that this condition can rob patients of the most basic forms of independence, making every little daily task a struggle; the reminder that they are more than their disease.