Katie MacDonald is highly engaged with patient advocacy as the Director of Operations for Miles for Migraine and the Director of Federal Policy for Alliance for Headache Disorders Advocacy.
In this interview with Katie MacDonald, we asked her about the patient perspective of living with migraine.
Since I am not a physician, it may be hard for me to accurately represent what the biggest challenge is. My suspicion is that in some cases, as patients become more engaged in advocacy, and thus their own care plans, they may have higher demands and expectations from their providers. As a patient advocate, of course I feel that the more educated and engaged the patient population is, the better disease outcomes will be.
Migraine is a disease that impacts the whole person. Clearly there is a severe shortage of providers in the field of headache medicine and the time that providers have to spend with a patient during an appointment is increasingly squeezed. Appointments are rarely long enough to review changes in symptoms, modify treatment plans and address the most pressing questions that patients have. In a world with unlimited resources and time, it would be ideal if the appointments for care included a behavioral health care audit and resources to help patients address the impacts this disease has on their mood (e.g., depression), ability to cope with side effects from medication or the disease itself (e.g., brain fog, concentration issues) and understanding when a patient needs to be referred out to other specialists for more in-depth care (e.g., gastroenterology, psychology, nutrition, physical therapy or exercise coaching). Patients should also be educated about the importance of advocacy as part of their treatment plan. It can’t be up to the small number of providers to drive change; patients MUST get engaged.
Another area that is often overlooked is the burden of dealing with barriers to access treatments. While the provider’s office is often looped back in to assist with prior authorizations, much work falls on the already exhausted patient to advocate with their pharmacy, their insurance carrier, etc. to get the medications, test and treatments prescribed by their provider.
There are many benefits of patient advocacy groups. First, these organizations create opportunity for engaged, like-minded individuals to direct their energy towards making a difference – both for themselves and others. Secondly, while everyone can make a difference as an individual, collaborating with existing groups or organizations is an opportunity to amplify voices and drive change in a more organized fashion. In other words, rather than each individual working to combat the stigma of migraine, a group can come up with more of a project plan approach and get hundreds or thousands of advocates moving in the same direction. Finally, patient groups are a key method for providers, industry, and the general public to better understand the impact of a disease on patients and the areas that a patient community feel need to be addressed most.
The handling of or creation of balance in your life with migraine is certainly a challenge. I would propose that it’s not just work-life balance, but work-life-migraine balance that needs to be considered. In my case, I remember when I was in a long cycle of work-migraine balance with no time for “life” at all. It was a routine of get up; go to work and give it my all; leave work (often early) and go home, straight to bed, get up the next day and go to work. This is not sustainable.
Living with migraine requires a person to be extra diligent about their own self-care. Creating predictable routines, including time for relaxation, planning for a fun event – perhaps one that can easily be rescheduled – to have something to look forward to. Just like health care professionals face issues with burn out, so too do patients and patient advocates. It’s important to be realistic about how much you can commit to and learn to say no sometimes. You will be a more effective advocate if you give yourself the space to focus on your own self-care vs if you try and give too much. At the same time, I think it’s good to acknowledge that participation in patient groups can provide a patient with the sense of belonging and contribution that we all seek; this can become a source of energy for many.
I’m not sure there is a single most common concern. Some of the ones I hear of most frequently include:
There are so many. Migraine can have huge impacts on a person’s sense of self-worth and self-confidence. The often unpredictable nature of attacks leave patients doubting their ability to make plans. The more patients have to cancel, the more likely they are to just stop making plans all together. Without events and social interactions, patients become more isolated which can lead to further issues with co-morbid conditions like depression and anxiety. It’s not uncommon to hear a person with migraine say they feel like their world has become very small.
As Dr. Paul Mathew says, it’s not My-graine, it’s We-graine – migraine is a disease that impacts not just those people who have attacks, but everyone around them – their friends, family, coworkers, etc.