|It's ever so easy to get stretched thin. One opportunity after another presents itself that we just can't bear to turn down. This Monday evening, for instance, I was fortunate to be part of a committee meeting after work for a "Member in Discernment" at my church, who is entering the process to become ordained. He picked me partly because he wanted an activist/ unconventional perspective, so he'd better watch out, right? Tuesday night I had a meeting at our local NAMI (National Alliance on Mental Illness), Wednesday was ballroom dancing with my sweetie, and Thursday, tonight, I'm speaking for the local PFLAG group. A wonderful but jam-packed week, one of 52 others that probably look very similar to yours.
How do you, personally, decide what projects to take on? My goal has been to ask myself if a project is 1)important/ necessary; 2) something I REALLY care about 3) possible, even if it is both a long-shot and far in the future; and 4) my personal contribution is filling a hole that would possibly not be filled without me. I think I've mostly fallen down on #4, because if it is important and cranks my tractor, I want to jump on even if there are plenty of others who could probably do it better.
Of course, advocacy isn't the only community work needed-there are all sorts of tasks that are more of a service or maintenance nature. Why do we need to include advocacy as a special category? By definition, advocacy is "the act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support." To me, it means participating in intentional, directional, strategic changing of a situation currently unacceptable. I believe all of us ought to pick one or two areas of advocacy, unless we are either perfectly satisfied with the way all things are now, and then come together in groups to accomplish our goals.
I made a list, a really long list, of things I think ought to and could be changed, even if it would be a long shot or take a long time. I meditated on that list and slept on it. For quite a few of the items I really care about, I don't have personal skills or means to tackle, but fortunately there are others who do-in that case, I can probably help the best just by saying I agree when the time comes and showing up for their rallies. The rest gradually arranged themselves into a range of short, medium and long term projects, all centered around one of two things-access to healthcare and quality healthcare.
I'm going to stick with the push for Medicare for All, no matter how long it takes. If we get that even one year earlier than we would when we run out of other alternatives, that's 45,000 people who didn't have to die early. In the short term, I will do my best to advocate for secure and sufficient funding of Medicaid and all children's healthcare services, the Medicaid Expansion, and the best possible construction of Alabama's Exchanges (all for the purpose of improving access to care), at the same time as I make sure you know our fractured insurance system isn't solving the problem. I'm going to keep working with my NAMI friends (the National Alliance on Mental Illness) at the state and local level for improved access to good mental healthcare. I'm going to stand with the other women of this state to insist on access to reproductive health services.
Of course access to insurance is not enough to provide access to care. Having an insurance card is meaningless not only if you can't afford to use that card but also if there is no doorway of care open to you. We need to convince our physicians to accept all forms of insurance, especially the public and military versions, to strengthen the networks of care in our rural areas, and to allow allied health professionals such as nurse practitioners, nurse midwives, and physical therapists to practice independently. They are trained to do this, and the evidence is strong that they can do so effectively. I tried last year to convince some groups of organized medicine in my state, but the turf battles rage on. This year I'm planning to go straight to the public, in hopes that this will encourage other physicians in agreement to speak out. Our outdated state licensing is certainly possible to change in the near term, but only if we can show legislators the public is strongly behind them.
Another kind of access barrier is trickier and could persist even with good insurance and sufficient provider distribution-the barrier of social attitudes that close our minds towards both persons and evidence. In this category, I'd place persistent public misunderstanding of mental illness and addiction, which creates shame in those so affected and makes it less likely they will seek help. Such stigma also means a higher likelihood patients will receive ineffective treatment or be jailed, instead of having access to the most current, evidence-based services. Attitudes towards sexual orientation do the same thing, if either a patient or physician avoids discussing sexual health questions. Even marriage rights fall into this category. Because same sex couples are unable to share legal parenthood of their children in our state, one parent must have written permission from the other to obtain medical care for the children. I believe the opportunity to repeal DOMA may be near. How do we advocate for social change? A lot can happen with simple willingness to share our understanding openly in conversation, to stand in public solidarity with those who are marginalized, and to object when we hear or see hurtful language and actions.
In terms of healthcare quality, I'm going to continue advocating that we limit legislation of specific medical treatments, because the science changes too rapidly for us to be legally bound to a given regimen of care. I'm going to argue against all manner of pay for performance measures, because the evidence shows they create more problems than they solve. I'm going to let you know about specific issues in healthcare quality as they arise, and uncover biases when I can. For instance, drug and device company money influence far too many of our published studies and guidelines. Sadly, physician and researcher biases driven by personal opinion or greed rather than science also turn up, as in the case of circumcision, and those of us who know it are obligated to say so. I will continue to speak for evidence-based practice with my students and within my professional organizations.
Once you know what you want to do, the next step is finding your advocacy partners. One of my goals in this blog is to attract interested friends to help me get a particular piece of the work accomplished. For something as big as stable funding sources for Medicaid, we will need a substantial coalition. I proposed one idea so far but haven't gotten much feedback (thanks to the few who did respond), so maybe it was a dud. I need to know if anyone is able and willing to help me with a plan. Do any of you want to volunteer to form a study group to explore other options and bring them back to LIA? We can't wait until February to start, and I sure can't do it by myself.
What's on your list? Do you have a theme? Have I left out any pressing aspect of healthcare access and quality you think I need to address? Included too many? Please chime in.