Roses May Have Thorns, but a Rose Is Still a Rose
A few weeks ago, my wife and I attended the Rose Ball, an annual fundraising event for the Connecticut chapter of the Cystic Fibrosis (CF) Foundation. The name of the event honors the story of a young boy who, after hearing the name of his disease for the first time, pronounced it “65 Roses,” which started a tradition among children in the CF community and ties the work of the CF Foundation to the rose, which they note is an ancient symbol of love.
This was our fifth or sixth Rose Ball, but we’ve been supporting the organization in various ways for many years. Each time we attend the ball, we get asked the same question: What is your connection to Cystic Fibrosis? Do you have a child or a close relative with CF? Why do you support the cause?
The answer is complicated.
Our oldest was born nine weeks premature, and the NICU was a two-hour drive away. Consequently, my wife would stay the night at David’s House, where the families of kids being treated at the hospital could stay for a small fee. She’d spend her days at the NICU, and I would commute back and forth to work.
At the time, I was blissfully ignorant. The day my son was born, I asked the physician’s assistant what to expect. She said there would be some ups and downs for the next three to six months, but to try not to ride the roller coaster because in the long run, everything would be okay.
And so it was for the most part. We met other families like us staying at David’s House while their kids were cared for in the NICU. It was a trying time, but the majority of us knew things were getting a little better every day, and there was light at the end of the tunnel.
Then one Saturday morning I met someone new – a mother getting ready for her day, packing lunch in the kitchen. Her children were not in the NICU; they were there for a scheduled week-long hospital stay to undergo treatment to clear out their lungs.
She told me about them in a very matter-a-fact manner, lacking much emotion. They had Cystic Fibrosis. They were 18 years old. They couldn’t participate in sports because CF reduced their lung capacity. And oh, by the way, she added, they will likely succumb to the disease in the next five or six years, as most CF victims died by their mid-twenties at the time.
What do you say to that? I didn’t know what to say or how to react. She had obviously accepted the circumstances and outlook a long time ago – not that she was happy about it – but she was making the best of what life had dealt her and her kids.
It is now 25 years later, and people with CF are living into their forties. The FDA recently approved yet another drug treatment that is producing positive results for those with CF diagnoses, and gene therapy has offered a potential cure that currently needs to solve a “transportation” problem. (Specifically, they have to determine how to get past the mucus in the lungs to deliver a virus with the RNA “fix” into the lung cells.)
Cystic Fibrosis is not alone in making great strides toward a cure. Since 1983, when Congress passed the Orphan Drug Act providing financial incentives to researchers and pharmaceutical companies working to find cures for genetic diseases that afflict a very small percentage of the population, the research and trials have progressed to a tipping point. After nearly 35 years, the fruits of the labor are emerging with a trickle of a few therapies/drugs in the last two or three years and another 10 to 20 anticipated approvals in the next couple of years.
These therapies/drugs are, for now, expensive. Many people in our industry and in academic circles as well seem concerned with the up-front cost of these new treatments. But I think this is myopic – like focusing on the thorns on the stem of a rose, rather than the bigger picture of the rose itself.
I’ve spent the last 20 years of my life working in Stop Loss insurance, which was designed to help finance many of the expensive medical treatments and services that are performed to make people’s lives better. Costs are certainly top-of-mind and meant to be managed appropriately, but there is a long-term benefit to be considered as well – a topic I can go deeper into at some other time.
As for now, we at HM Insurance Group, as part of the Highmark Health organization, are included in an overarching mission to make people’s health experience remarkable, freeing them to be their best. With that in mind, I embrace and celebrate what is clearly an exciting time in which our families, friends and neighbors are getting the opportunity to live this experience due to the medical advancements now available (which, in the end, is why we attend the Rose Ball).