Advocacy takes many forms...
- We, as headache and Migraine doctors advocate on behalf of our patients.
- Many of our patients advocate on behalf of the larger headache community, and
- Senators and members of the House who are supportive of headache advocate to their colleagues on our behalf.
But what do we advocate for? When I and other headache specialists descend on Congress each year, we have what is know as our “ask”. This is political speak for the specific request we are making. The “ask” can range from something as specific as the congressperson’s signature on a letter to their colleagues or another government official to something as sweeping as endorsement of a bill before Congress.
But how do we advocate for something more abstract? Congress thinks largely in terms of dollars and cents. The assumption is that there is only so much money (the validity of that assumption is for another blog at another time and place), and if there is to be more money for headache research, money must be taken away from somewhere else. This is the kind of advocacy that is the bread and butter of Washington politics. I am interested (as are most headache sufferers and those who care for them) in advocacy at many levels, and in this blog I want to consider advocacy at a much less global, more local level. How do we advocate within the community, within the patient family and even to the patients themselves? The message that Migraine is not “just a headache,” the message that Migraine can and should be managed as the chronic disease that it is, is just as important as finding funding for exploration of the pathophysiology of the disease and new investigational drugs.
The tools are the same:
- education,
- visibility, and
- relevance.
When we go to Washington, we don’t always see the elected official. In fact, more often, we see a bright young aide known as the “legislative assistant for health affairs” (L.A.) or some similar title. But whether we are talking with the Senate Majority Leader or the L.A., I have yet to meet anyone who, once they understand the true nature of Migraine and its impact on the individual, their family, and on larger society, does not fully support our efforts to improve the situation. Now that we have been doing this for a few years, we don’t have to start from ground zero each time as we did in the beginning. Headache is now “on their radar,” and we are able to refine our arguments and tie them to other issues important to the legislator.
We need to do the same thing at home.
- We need to do a better job educating patients, families and the community about headache. This is grass roots advocacy. We start with educating the patient that Migraine is a real, chronic, inherited disease, not a “psychological” problem.
- We need to educate patients to the fact that not all triggers are knowable, much less predictable and avoidable – that Migraines will come (hopefully infrequently and be easily treated) and when they do, it is not necessarily due to any fault of the patient.
- We need to involve families in the patient care process – help family members understand what it is to have a Migraine and what things can worsen the pain and what can help. We need to help families understand that no Migraineur in their right mind would wish a headache on themselves no matter how importune it may seem.
- And then we need to go out into our communities to raise awareness of the impact Migraine has on our society, our economy and our culture.
To illustrate both the need for and the absence of advocacy at this level, a comparison with diabetes is instructive. Both diabetes and Migraine are serious, chronic diseases. Both develop and progress through a combination of controllable and uncontrollable factors (e.g. diet versus genetics), both can ruin lives and both represent huge drains on the healthcare system. Forgetting for a moment that annual NIH funding for diabetes is over a billion dollars, and just under ten million for Migraine, the public perception is that diabetes is more disabling than Migraine. There is specific coding (required in order for physicians and nurses to bill insurance) for diabetes patient education, but not for Migraine patient education. This underscores the perception that Migraine education is not valued as a means of reducing health costs or managing the disease.
In order to bring about the changes we seek in headache care in this country, it is not sufficient to send thirty or forty headache experts to Washington each year, although this is hugely important. It is incumbent on each of us as headache sufferers and others involved in the headache community to advocate for our cause in every available forum and at every level, starting with individual headache sufferers who do not seek care because they don’t understand their disease.
And of course, never forget to encourage the newly educated to write to their elected officials! The voice of the people remains the most potent voice we have for change.
Rob Cowan
AHDA Board Member
Vice President, Headache Cooperative of the Pacific
