My new role with the ALS Association, and a report from the trenches

Earlier this year, I began a term serving as a member of the ALS Association Board of Trustees, and also agreed to serve as Chair of the ALS Association Public Policy Committee. 

This was just before news broke of a dangerous new virus, COVID 19.

Over the past month, the Association has been in full emergency response mode as we respond to the dozens of  challenges COVID 19 creates for people with ALS, their families, the ALS clinics and ALSA chapters serving them, and for ALS research centers. Needless to say, it has been a baptism by fire for me.  

COVID 19 presents unique and exceptional dangers to people with ALS. Many to most of us with ALS have, in varying degrees, weakened respiratory functions, and so are at greater risk if we contract the disease and it spreads to our lungs. We may also face difficulties accessing critical care at hospitals where triage protocols could cite either our ALS diagnosis, or our reduced respiratory capacity, or both, as exclusionary criteria (though the Association is working hard on this issue, see more below).

Even if we avoid the virus ourselves, the support systems we rely on are being disrupted. Clinics are having to shift to remote consultations (in the long run, the shift to telemedicine is a good thing, but in the short run disruptive). Some families with a person with ALS are losing jobs and income. Some family caregivers with jobs outside the home are having to calculate how to provide care without exposing the person with ALS to possible infection. Families are also having to decide how to balance social distancing with the need for professional home care givers to support people with ALS. Lower income households are no doubt under particular strain.

At the same time, the 39 chapters in the Association’s federated system are – like all non-profits in this crisis – soon to face significant financial shortfalls as their fund-raising events have been cancelled. Some are in a better position to weather the storm than others. For them, the challenge is that demand for care services is spiking even as their resources will start to dwindle. The longer and deeper the economic crisis is, the worse the financial pressures will grow on non-profits, and on everyone else. The Association leadership is actively working on strategies to ensure that chapters and the services they deliver to people with ALS will be safeguarded.

There is more, but I think you get the point. 

What you need to know, if you are a person with ALS or a caregiver reading this, is that my new perch in the Association affords me a close look at how the organization is responding to the crisis,  and I can report with confidence that it is getting very good grades at crisis response.

In big ways and small, the Association’s team of professionals and volunteers are effectively troubleshooting immediate challenges, and planning to deal with medium and long term challenges. My new colleagues are working very long hours, late into the evenings and on weekends, working to ensure that care services are able to meet new needs, that guidance to people with ALS is clear and accessible, that clinics are reaching out to patients, that disruptions to research are managed and minimized, and that the Association maximizes its impact on critical public policy issues effecting people with ALS by signing onto letters and petitions with coalitions of patient advocacy groups.  The dedication these individuals have to the well-being of people with ALS is really coming out in this crisis.

You may agree or disagree with some decisions or positions the ALS Association has taken over the years, but know this – these are very good people working very hard on our behalf, often on issues that get no visibility but which have outsized impact.  They include skilled professionals with no direct personal link to ALS, but also hundreds of volunteers on boards and task forces at the national and chapter level, most of whom are former or current caregivers of a loved one with ALS, or people living with ALS, like myself. I am proud to work with this group.

I’m working most closely with our public policy response and so can speak to that in more detail.  Over the past month the Association’s lean but very effective public policy team has signed onto over a dozen coalition letters and petitions, including some that seek to protect people with disabilities from discrimination in health care related to COVID-19, and that guarantee that an ALS diagnosis is never used as an automatic exclusionary criteria in triage. These are going to be, literally, matters of life of death for some of us if triage is required in our areas. The ALS Association leadership team has had rich and – for me – emotionally draining debates over the positions we are advocating for, the principles that should undergird these positions, and the ethical and moral responsibility we have both to people with ALS and to the greater good. I have won some of the debates and lost some. But what has impressed me is the culture of open debate and the deep commitment to ethical principles that permeates the organization. That bodes well for the many policy decisions the Association will have to make in coming months as we respond to new health and economic challenges posed by COVID 19.

I’m a political scientist by profession, and so am not naïve when it comes to the study of organizations and organizational politics. No organization is perfect. They are built by and populated by humans, and are as flawed as we are – sometimes even more so. I can see the imperfections in the Association and the areas where it can, and will, be improved.  I also see opportunities for more effective cooperation and coordination across the many ALS care service, research, and advocacy groups, and hope that is something we can all work toward.

I don’t know how long I have before ALS progression forces me to stop advocacy work, but with the time I have left I hope I can be part of a collective effort to  get us closer to therapies that halt or reverse ALS, promote public policies that advance the interests of people with ALS and related diseases, and provide the best care services possible, so that people with ALS can live longer and better lives. The better we can work together, the faster we will achieve these goals.