“Adding Tomorrows,” a phrase that appears on the pin I always wear on my lapel, has officially disappeared from the lexicon of the Cystic Fibrosis Foundation. More people than ever are living with cystic fibrosis. I rejoice – and, as the end of the year approaches, I invite you to rejoice with me.
Every year around this time for well over a decade, I have written some version of this message. This year is different. Our nation is in a difficult transition, and not coincidentally, the social media landscape is shifting. Like many people, I am shifting my focus toward the BlueSky platform, which likely means a new and perhaps more receptive audience.
Superficially, this is a pitch -- a request that you join me, as we enter the end-of-year giving season, in donating to the Annual Fund of the Cystic Fibrosis Foundation (CFF). But, at a higher level, I am writing about hope here, within the framework of something that means everything to me.
When I learned, almost 23 years ago, that my baby daughter had cystic fibrosis, the doctors and nurses said we could greet that news with a sense of optimism because CF had a median predicted survival age of 31 years. Had I been born with CF, my parents would likely have watched me die in early childhood.
Today the median predicted survival age -- the number of years a person born with CF now can expect to live -- is fully 61 years. Sixty-one years! Now you see why the CFF has quietly dropped the "Adding Tomorrows" slogan. Most of the tomorrows have already been added, thanks to billions of billions of donated dollars that have been wisely invested in research, treatments, and healthcare innovation.
That the number of people with CF in the United States is growing is good news of a similar type. We are producing people with CF at the same rate as ever -- it is, after all, the second most common inherited, life-shortening genetic condition -- but now, suddenly, CF is an adult disease as well as a childhood condition.
For our CF family, 2024 has been a wonderful, remarkable year. In March, my daughter Rose got to introduce President Biden when he came to New Hampshire to deliver a speech about drug prices. In May, she graduated with honors from Bowdoin. In June, she began a job on the staff of the Governor of Maine. Right before the November election, she was the subject of a feature story that appeared on CNN.
Did these great things happen in spite of the fact that Rose has cystic fibrosis? Not really. I think they happened because she lives with CF.
Certainly the President Biden thing happened for that reason, as did the CNN interview. In 2024, Rose did not just eclipse her dad by becoming the most important state official in the family. She also became the most effective advocate in our family when it comes to making sure that all of the great new CF drugs on the market are affordable and available to all.
Rest assured that I did my share too! I lobbied on Capitol Hill. I testified before the New Hampshire Legislature. In September I helped organize, and then proudly participated in, a protest at Vertex Pharmaceuticals in Boston, commemorating the fact that the annual North American Cystic Fibrosis Conference was taking place just a few blocks away. Hearty thanks to Vertex Save Us and the affiliated Just Treatment! organization for creating the demonstration.
Some people say the CFF is not doing enough to assure global access to breakthrough CF medications, or to rein in the bloated prices for CF drugs being charged by Vertex and other Big Pharma firms here in the U.S. Maybe. But I am proud of the CF Foundation for allowing its big annual conference to include two sessions whose subject was the affordability of CF care -- including the session that became the springboard to the protest over at Vertex. I enthusiastically support the efforts by the CFF's public policy team to assure that patients and families do not get ambushed in the eternal crossfire between drug companies (and other healthcare institutions) and providers of health insurance both outside and inside of government.
As 2025 looms, our family is going to need the public policy efforts of the CFF more than ever. If the Affordable Care Act goes down -- a very, very real possibility -- people with CF and their loved ones will be among the biggest casualties. Exclusions for pre-existing conditions, and lifetime benefit caps -- two familiar features of insurance plans before passage of the Affordable Care Act -- must never be allowed to return. No organization is better positioned to defend the Affordable Care Act than the CF Foundation, and for that reason alone I urge you to join me in supporting the CFF Annual Fund.
Recently I noticed that the Cystic Fibrosis Foundation has a new favorite number: zero.
That's zero as in the number of cures that exist for Cystic Fibrosis. The quest to overcome CF deserves its familiar description as "the greatest story in medicine" given how quickly we've moved from a medical condition that was first diagnosed in 1938 to where we are now. But the story is far, far from over -- as remarkable but expensive research continues. I'm banking on gene therapy, of either the DNA or mRNA varities, or maybe both, becoming the treatment that will finally make CF stand for "cured forever." It feels good to know you're a small part of that story -- another reason to make a donation of any size.
Over the years, I have always been careful to say that no family would ever count itself lucky to be affected by cystic fibrosis -- because of how dangerous and life-shortening this condition remains, even today. Indeed, Rose spent ten days in the hospital not long ago. But then I look around at the wretched politics, the discord, the cynicism, the greed, and the ignorance that swirl around us. That's when I realize how lucky we truly are -- how fortunate it is to have a palpable reason to choose hope in challenging times. I invite you to make that choice along with me as we look ahead.
P.S. Yes the "Make that Geezer Get Those Tattoos" campaign wrapped up in July after a year and, no, I did not raise enough money (an ambitious 65 grand) to require me to cover my body in 65 rose tattoos. But I did get TWO rose tattoos and this offer still stands: Donate $5,000 to the Cystic Fibrosis Foundation in my name or in Rose's name and I will add another Rose tattoo. I will even let the donor choose the location (within reason).
Need the donation link again? Here you go!
P.P.S. I don't know if this is a coincidence or what, but I am amazed by how many of the CF caregivers who have helped Rose over the years are now standing with Rose in the quest to make CF drugs affordable. If you look two pictures up, the woman standing next to me holding the "Shame on Vertex" sign is Lynn Feenan, who for many years was the nurse-coordinator of the pediatric CF program at Dartmouth-Hitchcock Medical Center (DHMC). Lynn has literally stood with me during my hardest hours as a CF dad. Brian O' Sullivan, one of the pediatric pulmonologists at DHMC who has been Rose's CF doctor, has long been an outspoken critic of pharma greed; he and I serve together on one of the public appraisal panels of the Institute for Clinical and Economic Review. Greg Sawicki, the director of the pediatric CF center at Boston Children's Hospital, was an outspoken voice at this year's North American CF Conference in Boston. Is there a causal link? Yes! We've learned to be principled and outspoken and concerned about healthcare affordability from these folks.
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