During my 41 years of military service, a phrase of leadership resonated with me as I progressed in rank and responsibility: “We pass on what is important through our actions.”
As a cancer survivor, I benefit from our former leaders who in 1971 took action and declared war on cancer by enacting the National Cancer Act. Introducing the bill, Senator Peter Dominick, R-Colo., Noted, “There is a growing consensus that our vast scientific and technological resources should be swiftly mobilized in an unprecedented attack on this devastating disease. Today, the investments and innovations spurred by this law have saved millions of lives.
Now, as a veteran with ALS, I am encouraged to see a common goal among our leaders. ALS’s 100 percent death rate and rapid progression (average lifespan from diagnosis is 2 to 5 years) demands action. The hugely disproportionate impact of ALS on military veterans demands that our leaders fight to honor the sacrifices made by our serving members, veterans and military families. And it’s a full-scale war that we need.
Six months ago, I was advising military leaders on national strategy and policy to protect our nation. Today I cannot read a children’s book to my grandson. ALS eventually cripples every limb and muscle in the body. It suppresses the ability to eat, drink, speak, swallow, and breathe. Death in patients with ALS usually occurs in the form of respiratory failure, often after the loss of all ability to move or speak. Our bodies will become our own coffins. This is the price I will pay for my service.
But our leaders are now rising to the challenge. On December 23, 2021, fifty years to the day after President Richard Nixon enacted the National Cancer Act, President Joe Biden signed the bipartisan “ACT for ALS”. The timing of this new law coincides with big changes in the science of ALS. For the first time ever, promising therapies for ALS are in clinical trials. ACT for ALS will help veterans and non-veterans access these therapies.
The ALS community owes a special debt of gratitude to the President and members of the House and Senate who voted for this bill, proving by their actions that they believe our lives are important. This process was bipartisan at a time of deep division. Members of Parliament have shown courage and conviction in bringing this bill to the president’s desk.
Senators Chris Coons, D-Del., And Lisa Murkowski, R-AK, and Representatives Jeff Fortenberry, R-Neb., And Mike Quigley, D-Ill., Worked tirelessly for eighteen months to move forward this law project.
Senate whips, who by custom have rarely co-sponsored legislation, have come forward for the ALS community: John Thune, RS.D., and Dick Durbin, D-Ill., Signed this bill to fight for us. In the House, Credit Committee Chair Rosa DeLauro, D-Conn., Gave our community the first opportunity to speak out amid the pandemic. Energy & Commerce Health subcommittee chair Anna Eshoo, D-Calif., Then held a full-day hearing, giving the floor to the voiceless, then asking her fellow committee members, “Someone does he dare to vote no? Nobody dared. Energy and Trade Committee Chairman Frank Pallone, DN.J., then moved the bill upstairs to the House.
Many veterans committee leaders carried veterans with ALS on their backs. Julia Brownley, D-Calif., Chair of the House Veterans Health subcommittee, sponsored the bill in its first draft, when it was HR 7071. Elaine Luria, D-Va., Chair of the Disability Assistance and Memorial Affairs subcommittee, was the first VA committee leader to sponsor ACT for ALS. Fighting for disabled veterans and all patients with ALS, she embodied the core values of honor, courage and commitment that guided her service in the Navy. The leaders of the VA Senate committee, Senators John Tester, D-Mont., And Jerry Moran, R-Kan., Co-sponsored the bill, which committee chairs and high-ranking members rarely do.
In times of crisis, leaders lead. They did it. Remember their names.
As with our nation’s war on cancer, ALS requires bipartisan collaboration and engagement, long-term vision, wise investments in the future, creativity, and a fighting spirit. Fifty years after our leaders threw down the gauntlet on cancer, they once again staged an attack on a devastating disease. For this leadership, they are grateful to thousands of current military families – and tens of thousands to come with future ALS diagnoses.
Kevin Robinson is a retired sea captain who served 41 years in active service. He is a member of the Association of Military Officers of America. In July 2021, he was diagnosed with bulbar ALS.
Editor’s Note: This is an editorial and as such the opinions expressed are those of the author. If you would like to respond or would like to submit your own editorial, please contact Military Times Editor-in-Chief Howard Altman, [email protected].