Protests, rallies, and marches have never been my thing. From my perspective, it’s always felt a bit creepy to be part of a big crowd of people all screaming the same thing in unison — even something I fervently believe.
Moreover, I am the New Hampshire’s Consumer Advocate, meaning I head up the scrappy little state agency tasked with advancing the interests of residential utility customers at our Public Utilities Commission and elsewhere. Resolute nonpartisanship is the right approach to a job like this, for all sorts of reasons. Especially in New Hampshire where (unlike, e.g., Vermont) the Overton Window of public policy discourse has long been open wide and success requires constructive relationships with lawmakers and other officials of goodwill from across the political and ideological spectrum.
So maybe someone somewhere will say “gotcha!” when they spy the image above, taken by the photographer who was (I think) taking the official pictures on behalf of the sponsors of the big and energetic anti-Trump rally that took place outside the State House in Concord on the cold and rainy afternoon of Saturday, April 5. That’s me in my Cystic Fibrosis Foundation hat, near someone else’s “We Are All Immigrants” sign.
One of the few of the estimated 2,000 people who showed up without a sign, I stationed myself near the front of the rally because I wanted to make sure I could hear and see the speakers. So I should not have been surprised, and in fact I am not surprised, to have been photographed. I have no regrets and I offer no apologies.
I have a conscience, and I am a dad. What drove me into the streets, as the father of a young adult who lives with cystic fibrosis, was President Trump’s decision to gut the National Institutes of Health (“NIH”) and the Food & Drug Administration (“FDA”). These two institutions are essential to the remarkable and mostly privately funded success we have achieved over my daughter’s lifetime, largely via the Cystic Fibrosis Foundation, in reducing CF to a curious medical footnote instead of a killer. We are almost there.
All of the medical progress we have achieved — i.e., the availability of miracle drugs like Trikafta, Alyftrek and similar “modulator” therapies that finally address the cause of cystic fibrosis at the cellular level — are built upon the bedrock of basic science research that has occurred under the aegis of the NIH. The grandest breakthrough of all was the discovery of the CF gene in 1989; it is no coincidence that Francis Collins, a geneticist who played a key role, later went on to lead the NIH.
Likewise, the existence of a vigilant and effective FDA — to assure that new medications like Trikaftra, Pulmozyme, Tobi, and others that are helping to assure my daughter will long outlive her baby boomer dad are safe and effective — is essential to our success. Just like you can’t have a pastrami sandwich without the rye bread, we cannot conquer cystic fibrosis without both the meat of what the CF Foundation does and the assistance provided on either end by the NIH and the FDA.
Here’s where my conscience comes in. To me, the gratuitous and thoroughly illogical harm being done to these two agencies can have no rational explanation. So it reveals the utter lunacy, nihilism, and authoritarianism that President Trump and his lieutenants bring to their work — all of it. If these people are so willing to casually dump on the cystic fibrosis community — generally, a well-endowed and cohesive crowd — there can’t be any depths to which these autocrats will not sink, especially because the head of the Office and Management and Budget, Russell Vought, is himself a cystic fibrosis dad. The emperor is naked.
Do I tempt fate, given the pendency of a bill in the New Hampshire General Court to abolish my office, sponsored by a group of influential Republicans with libertarian leanings? I can only hope not.
One of the most well-articulated speeches at the State House protest came from Representative Matt Wilhelm of Manchester, chair of the House Democratic Caucus. He rattled off a long litany of partisan objections to the state’s biennial budget as recently approved by the Republican majority of the House Finance Committee. To me this was an interesting but regrettable feature of the anti-Trump protest. Though I have my opinions about the state budget as it is developing, these questions fall squarely into the realm of matters about which I continue to avoid public comment (beyond, of course, thanking House Finance for toying with but ultimately rejecting the idea of embedding the “abolish the OCA” bill in the budget itself). My point is that one can still have respect for, and a commitment to earnest engagement with, fervent partisans across the spectrum — even ones who seek the demise of the Office of the Consumer Advocate — while publicly speaking out at the national level for leaving in place things like the Rule of Law and our global leadership in the quest to overcome disease and advance the frontiers of science.
Finally, a plea to my friends at the Cystic Fibrosis Foundation: Do as I have done!
Much as prudential considerations lead me to maintain a resolutely nonpartisan stance, the CFF stays out of politics as a tax-exempt 501(c)(3) nonprofit (and an organization that counts many generous Republicans among its donors). On April 2, the CFF issued a statement expressing alarm about the changes at the NIH and the FDA. Declared the Foundation: “The incredible progress in cystic fibrosis treatment and care is possible because of the support and scientific expertise provided by the FDA and NIH. While it is reasonable to ensure that these agencies are operating effectively and efficiently, enacting such abrupt and sweeping cuts to the workforce will hinder critical scientific advancements and delay patient access to safe and effective transformative therapies in the future.”
This is not enough, given the state of siege in which we find ourselves. I want the Cystic Fibrosis Foundation to rally CF Nation to this cause.
That’s why I made a point of carrying no sign, but wearing my CF Foundation hat to the protest on Saturday at the State House. I am active in the CFF, serving as the annual giving chair for our chapter (and, by the way, if you donate to the CFF annual fund this month, you’ll be helping to assure that my former spouse makes good on her promise to match up to $15,000 in such gifts). Since I am neither an employee nor a fiduciary of the CF Foundation, I felt at liberty to wear whatever headgear I wanted to the protest.
Cystic Fibrosis was simply a mysterious killer of babies and little kids until the discovery of the disease 1938 (at, by the way, a Columbia University pathology lab). Since then, the U.S. has led the world’s quest to out-smart this disease, and nothing animates me more than knowing I and my family are playing our small part in this noble effort. In the name of continuing this work, it is past time to take to the streets and I want our leaders to do more than clutch their pearls — I want them to lead us.
[Selfie — proving how much I enjoy looking scruffy when the weekend rolls around.]