“I’m sorry, what?” I said.
The voice repeated, “The results have come back, and they were positive. Mr. Grubbs, your son, Brantley, does have Cystic Fibrosis.”
“Okay… So, what now?”
She continued, “We are going to see you guys in our clinic on Monday, but between now and then, all I want you to do is promise me that you will not get online and start reading everything on the internet about this diagnosis. Can you do that?”
“Yeah… Sure.” I mumbled.
I lied.
Starting when the phone call ended, and continuing into the days and weeks that followed the diagnosis, I did what any parent would do — I obsessively consumed as much information as I could about the diagnosis, the disease, the treatments, and the recommendations for care. But, unlike most other parents to children with Cystic Fibrosis (or simply, CF, as most folks call it), I was a researcher by training. This diagnosis came during my fifth year of graduate training in a Ph.D. program in psychology. So, instead of simply Googling the disease or getting lost in bowels of internet forums, I went straight to PubMed and Google Scholar. I started downloading Cochrane Reviews on CF, reading the latest outcome studies for advanced CF treatments, and perusing clinical trial outcomes for novel therapies.
I’m not sure what I was hoping to accomplish by immersing myself in that scientific literature. I was a psychologist by training, not a biologist or geneticist. Still, I consumed that literature regularly. During those first few weeks after his diagnosis, it afforded me a feeling of control and stability, when everything else felt uncertain. Those journal articles offered me a way to cope with the knowledge that my child had a terminal illness. But, as weeks turned to months, the knowledge in those articles began to impact more than just my emotional stability.
When our son faced nutritional difficulties (a common problem in kids with CF), we turned to the scientific literature to see what could help. When it was time to start our son on nebulized medications and airway clearance techniques (lung problems are also very common with CF), we again turned to that literature to develop a plan on how to care for our son. This pattern of facing a problem and then turning to the scientific literature to understand how to proceed became second nature to us. I joked with my wife that we seemed to follow a Problem to PubMed to Plan routine with every issue with him. But, despite this constant reliance on scientific literature, it wasn’t until Brantley was a bit older that we realized how privileged that made us.
When Brantley was 18 months old, our physician recommended a specific medication for him. It was an expensive medication, costing several thousand dollars for a few months supply; but we agreed wholeheartedly with the recommendation. Unfortunately, our insurance provider did not. They denied coverage for this treatment, stating that it was not medically necessary for him. Our doctor appealed, which was denied. The head of our son’s CF clinic filed a second appeal, which was again denied. Per the insurance company’s standard operating procedures, we were allowed a third and final appeal. For this appeal, our doctor stated that it might be helpful to have a letter from us personally, as the parents. Our doctor told us that such a letter was not likely to make a difference, but that we were running out of other options.
Faced with this final appeal, I found myself returning to old habits. I went to PubMed. I searched for all the information I could find on this treatment. I read a few dozen studies, all of which showed consistent benefit for children with CF.
Armed with this new information, I wrote an appeal letter, citing the relevant literature and including a full bibliography, which laid out why we thought our son needed this therapy.
The medication was approved the next day.
When we received the approval notice, my wife looked at me and said, “We are just so lucky.”
That word, “lucky,” is not something you might expect to hear from a parent of a child with a terminal illness, much less from one who just fought with an insurance company to get a medication covered. But, she was right. She was referring to my job. Specifically, she was referring to the access that my job provides to scholarly literature.
You see, over the months prior to that appeal and approval, we had gotten involved with various online communities for parents of kids with CF. We had seen countless stories of parents fighting insurance companies to get medications covered. Sadly, we had seen almost as many stories of parents seeing their first, second, and final appeals denied. Our appeal was approved, and I genuinely believe that the reason ours was not denied was a direct result of my access to scholarly literature.
For the entirety of Brantley’s life, our family has had limitless access to scientific literature because of my job. First as a graduate student, next as a pre-doctoral intern, and now as an assistant professor at a research university, my university affiliations have afforded me access to cutting edge research and recommendations — research and recommendations that only a tiny percentage of CF parents have access to.
In many ways that extend far beyond the two stories I told above, our access to scientific literature has impacted how we care for our son. His medication regimen, his diet, his exercise routines, and even his social engagements are all, in some way, informed by current scientific literature. In this way, despite his diagnosis and all that it entails, our family is so incredibly privileged. And frankly, it should not be this way. The privileges afforded to our family because of my job should not be limited to a lucky few parents and family members who have access to a university repository.
Science can (and should!) be conducted with the benefit of the public in mind; but part of that benefit is having open access to that science. For thousands of parents like us (with kids with CF) and millions more people affected in some way by disease or difficulty, access to current scientific findings is prohibitively expensive or altogether impossible. But it doesn’t have to be this way. This is why I am such an advocate for the Open Science Framework and for Open Science across all disciplines. Open science does not just promote integrity and progress, it also provides our research to the public at large. For me personally, open science is not just a way to save my field (and goodness knows, psychology does need some saving!); it can save lives.
— Joshua B. Grubbs, Ph.D.
