What happened this month in the ALS advocacy space must never happen again. It’s up to those of us living with ALS and our supporters to insist that our ALS organizations do better.
What went wrong? Two of our most active ALS advocacy organizations, the ALS Association and IAMALS, were only partially in sync on two bills introduced in Congress designed to improve early access to experimental therapies. One bill, S3872 (“Promising Pathway Act”), was enthusiastically endorsed by both organizations. But on a second bill, HR7071 (“Accelerating Access to Critical Therapies for ALS Act”), they were not in full agreement. IAMALS fully endorsed HR 7071; the ALS Association expressed reservations about the bill in its current form while expressing hope that discussions can be held with the co-sponsors, IAMALS and other stakeholders to address those concerns and strengthen the bill.
There is no reason that these mixed messages needed to happen after the bill was introduced. This was avoidable, and should have been handled long before the bill saw the light of day. What was missing was communication, coordination, and trust, exacerbated by misperceptions. I have heard enough to believe that there is plenty of blame to go around and both organizations could have done better. I am uninterested in a blame game. What I am interested in is seeing that we do better moving forward.
Doing better means routinizing communication and coordination on public policy ideas, initiatives, and draft legislation; creating publicly accessible forums for debates and discussion about possible advocacy ideas, so proposals get a full airing and a wide range of patient voices can weigh in on their merits or shortcomings; and building trust, without which progress on other fronts is impossible.
The good news is that in my conversations with both leaders and members of these two organizations (including many of us who are members of both!) this desire for improved coordination is widely and deeply shared. And I strongly suspect that leaders in the many other ALS care services, research, and advocacy groups feel the same. Everyone understands that better coordination is essential for success, and is an ethical obligation to the community we serve. I am optimistic that we can make this happen. But we need lots of voices in the ALS community to keep insisting on it. As I settle into the role of Chair of the Association’s Public Policy Committee, I promise you this will be a top priority, and I will hold myself accountable to that goal.
I am also optimistic because, as I have gotten to know both volunteers and staff in our many ALS organizations, I am deeply impressed at how dedicated, smart, and hard-working they all are, and how similar our goals and values are. These are good people. They are having to work in a highly fractious ALS organizational environment, but that is something we can change, if we want to.
All this is not to say that ALS organizations must agree on everything. We have to expect differences in policy preferences, strategies, and principles. In fact, robust exchanges of views on public policy and other matters make for better policies. The key is ensuring that those exchanges occur early and often in the process, and that if organizations end up embracing different positions it can be managed in ways that are respectful and don’t overshadow all the many, many other policies, principles, and positions on which we all agree.
Ken's Caucus 