In the past, ALS Advocacy Day on Capitol Hill has been a frenetic affair. It almost has to be when groups of ALS Advocates from across the country descend on the Capitol with maps in hand, ready to weave the halls and go from meeting to meeting with Senators, Representatives, and staff to tell the story of people with ALS and how Congress can help. It is a fruitful, yet exhausting, day for all involved.
This year, however, the knock on a door was replaced by the ring of the phone. For the safety of all involved, people with ALS, chapter staff, and board members couldn’t travel to Washington D.C. for the day. As with much in our world today, the visits had to be done remotely.
To be sure, the day was still a busy one. Anna Zelinske, Director of Programs and Services for Patient Care for the ALS Association St. Louis Regional Chapter, board member Mark Calmes, and four people with ALS and their families served by our chapter started their calls early in the morning, and didn’t finish until late in the afternoon. All told, seven meetings were held with Representatives and staff from Missouri and Illinois, part of a nation-wide effort of more than 350 meetings overall.
“I don’t know that I can really put into words how exhausted I was when we were finished,” says Zelinske.
Part of the exhaustion was caused because most of the calls were substantive. Staff did not merely listen, but had questions about specific legislation and research projects.
“We were asked to try and stay between 15 and 20 minutes (for the calls),” says Zelinske. “But right off the bat our first call went over 20 minutes, and that was pretty much how it went all day. And that was mostly because there was so much back-and-forth. Each call was different, but everyone was receptive.”
One of the advantages to doing the visits remotely was that more people with ALS were able to be involved. Because travel is expensive and can be difficult for people with ALS, usually only two people with ALS served by the chapter are able to travel to D.C. and visit Capitol Hill. This year, four people with ALS and their families were able to take part and share their stories.
“That was what I was most excited about having virtual visits,” says Zelinske. “I knew that meant we could include more advocates than we could typically bring to Washington. The phone calls definitely took away the ability to show legislators what ALS looks like, but including more advocates helped build their experiences in discussing issues that are important to them with people who are in powerful positions that impact change.”
Board member Mark Calmes agreed that while the process was easier doing visits virtually, the opportunity for in-person contact was missing. “(W)e do lose a lot from not having face-to-face contact. We lose the humanity of the situation. If a staffer has never seen someone with ALS, especially someone in a wheelchair and on a ventilator, they will not get the emotional connection. They will not see the pain and suffering of the individuals and caregivers,” he says. “Conversely, we can’t look them in the eye and show our sincerity, nor can we see theirs when they commit to working with us or offer to investigate our asks.”
But even with the lack of face-to-face contact this year, there still seemed to be genuine attention given to the calls by those on Capitol Hill. In addition to questions about legislation and research, a topic of interest to many was the ALS Caucus. Since 2019, ALS Caucuses have been launched in both the Senate and the House of Representatives, creating even more momentum around ALS legislation and funding. “There was interest in the ALS Caucus, (and staff) expressed some interest in reaching out to other members to see about becoming involved,” says Zelinske.
One specific interaction Zelinske recalls was with Lacy Clay (D-MO), who took part in the call with his staff. While Clay had participated in the call from the start, Zelinske noticed a change when Steve Ziegler, who has ALS and has met Clay before, told his story.
“It was obvious while he was on the call with Steve and (Steve’s wife) Lynn that he understood that was where his attention needed to be. He really gave them his full attention,” Zelinske says. “Steve got emotional talking about his young son, and (Representative Clay) was very compassionate towards him and told him to take as much time as he needed. You could tell he understood that this is where I need to be right now.”
The hope, of course, is that next year our staff and advocates will be able to travel to Washington and meet with members of Congress in person, but even over the phone and even during a time of many issues competing for our attention, the messages from people with ALS still resonate on Capitol Hill. We thank everyone who has committed to help us on the search for treatments, and cure. ALS doesn’t stop, and neither do we.