Heard on the street (and on the phone, and during and in-person conversation, and by text….)
IFs and THENs:
If [the healthcare system] was just ______, then ______ !
You’ll have your own variations to fill in there, like:
- If healthcare was less expensive, then more people could get care!
- If doctors would spend more time with me, then I could get my questions answered!
- If insurance would just cover it, then my client could get the treatment she needs!
- If there were more specialists to cover my ailment, then I wouldn’t have to wait so long for an appointment!
…. and the list goes on and on.
In the 15 years I’ve been working in patient empowerment and advocacy, I have been asked hundreds of times to work on fixing those kinds of problems. I’ve been invited to Washington, DC. I’ve been asked to sit on committees, I’ve been hired as a consultant…
Once I started The Alliance of Professional Health Advocates in 2009, I determined that I would not work on such issues anymore. Period.
Those are all policy issues. They are mostly only affected by changes in laws or large systems. Because in the United States, the only changes that ever take place in the healthcare system require one to follow-the-money. If the system can’t extract more money for it, or save itself money, then it probably isn’t going to happen.
Cynical much? Yes. Most certainly. But rooted in reality.
So why do I raise this point today?
I’ve been contacted by two different groups in the last few weeks to work on policy in Washington. I was asked because, with my track record, and with APHA’s growing membership roster behind me, I could provide some clout that the requesting group could use.
And, again, I said no. That is not where my efforts are going to be spent.
But it’s important I share this perspective, and the reasoning behind it with you – thus this post. Because those of you who are interested in these things, and especially those who are working in advocacy, need to understand how this sort of decision is made. Because someday (if not already) you will get the same request. And you’ll have to make a decision for yourself.
Here’s my take:
Trying to update or change policy is a long-game. When we identify a change needed in the system, then it takes (at a minimum) months, and more like years before that change or update is actually word-smithed, agreed upon, signed into law, and enacted. Years. (In the case of healthcare reform, it took decades!)
If someone is sick and needs help TODAY then what good does YEARS do? As advocates, we support individuals, one at a time, who need help with the system TODAY.
Changing policy is like trying to turn the Titanic. And sadly, as we have seen over these years, the outcomes haven’t been appreciably different. There’s been as much positive change to healthcare as there were rescues from the Titanic.
A problem arises when we, as a membership organization, try to represent one point-of-view. We didn’t invite members to join by stating a specific point-of-view, so we would be making a change to our core and mission if we decided to do so.
With hundreds of members, some of whom have been members for the entire 10 years of our existence, and short of doing surveys and surveys about opinions, it would be impossible for us to know what policies members would support. We could have as many opinions as we have members! An example:
Many members (mostly newbies who haven’t lived in our advocacy world very long) think it would be great if health insurance began to reimburse advocates so they would want us to work on policy that would result in that outcome.
However, there are many members (and I hope MORE members) who would NOT want reimbursement for their work, because they understand how that would undermine independent advocacy and be harmful to our clients.
I believe it would be next to impossible to find ONE concrete policy which all members would be willing to support.
And, just as important:
Trying to work on policy requires travel to Washington or Ottawa or any state or provincial capital to meet with the right people, sit on panels and in hearings, costs time and money. And where do you think that money would come from?
It would have to come from APHA’s membership. From YOU. We would have to raise dues, and we would have to focus on ONE point of view, even if we knew not all members supported it. So, as a member, you would know your dues were raised in order to represent something you might not believe in.
Not gonna happen!
It’s worth mentioning here that in NO way, do I want to give the impression that I don’t believe that advocate policy makers and supporters aren’t doing important work. They most certainly are! If you personally work in a policy arena for advocacy or patient outcomes improvement, then I want you to know how impressive that is. Go get ’em!
But let me state APHA’s policy clearly: we will continue to support you, and your advocacy success, and the focus of helping patients who need help today, without raising your dues to support something you might not believe in.
We’re sure you’ll support our policy because it benefits YOU and YOUR CLIENTS.
And THAT’s why we are here.
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