A Rant About Health Insurance and a Shout Out to the Cystic Fibrosis Foundation

What would you do if your child broke a bone and needed surgery? This happened to a family that had purchased health insurance from Anthem Blue Cross Blue Shield of California. The parents had the presence of mind to go to the emergency room of a hospital in their network, but many of the doctor's involved in their child's surgery at that hospital were out of network, and the family is receiving huge bills. If this happened to your child, would you have thought to question, in the midst of an emergency, whether specific doctors affiliated with your covered hospital were also covered by your insurance?

Like this family, ours was struggling with a health insurance nightmare. My nine-year-old granddaughter, who has cystic fibrosis, needed Anthem Blue Cross Blue Shield of Indiana to agree to cover her continuing care at Riley Children's Hospital Cystic Fibrosis Center. This is the only treatment center for CF in the state. Yet a nurse reviewing the request at BCBS turned it down, stating that there was a random pulmonologist in her health insurance network who could provide "adequate" care. No way was this true.

All of my daughter's attempts to get BCBS to communicate with a nurse at Riley to reverse this terrible decision failed. And then Aaron from the Cystic Fibrosis Foundation's Compass came to our rescue. Compass is a part of the Foundation that helps patients with CF to navigate insurance, financial, legal and other issues.

Aaron was able to get BCBS to agree to cover my granddaughter's care for 90 days. I'm not sure why Anthem wants to revisit this every 90 days, as sadly my granddaughter will not miraculously be cured of CF. How we wish that could happen. I guess Anthem hopes if it puts enough obstacles in our path, we will stop bothering them and pay out of pocket. So I hope Aaron will help my daughter advocate for more care near the end of June and again near the end of September and December. Then, we can hope there will be an affordable health insurance plan available that will cover the pediatrician, my granddaughter's medication, the Children's Hospital and the CF Center. Even then, it may not cover every provider connected with the hospital or center. This is truly insane.

How lucky we are to have the amazing Cystic Fibrosis Foundation in our corner. The Foundation has been there for us since my granddaughter was diagnosed with CF almost seven years ago. At the time, I felt like I had been punched in the gut. My grandchild was not supposed to struggle with a serious condition. That's not the natural order of things. At the time the CF diagnosis was made, my daughter had just given birth to her second child (thankfully he did not have it). Instead of joy over his birth, I was grappling with what CF would mean for my darling little granddaughter.

With the help of the Foundation, everyone acclimated to a new normal. My granddaughter learned to swallow countless "medicine balls" (enzymes) and other medications at the tender age of four, much preferable to having to eat them in applesauce. The Foundation helped her obtain her "jiggle vest" to loosen the mucus in her lungs. It also funded the research that enabled scientists at Vertex to develop a new medication that targets the root cause of the genetic mutation she inherited from her father. My granddaughter is lucky to be among the 4% of people with CF helped by Kalydeco. She had been relatively healthy prior to being diagnosed. So far, she is thriving since she started taking Kalydeco almost four years ago.

If you have any doubts that the health insurance industry is the evil empire, check out some of these patient stories. It's reassuring to know there are some good guys like Aaron out there to help my granddaughter receive the care she needs. Soon, our family will be participating in the Cystic Fibrosis Foundation's Great Strides Walk. The Foundation is an awesome organization that raises and invests hundreds of millions of dollars to support the development of new CF drugs and therapies. Research is helping to develop other promising new drugs, and almost all money donated to the Cystic Fibrosis Foundation goes directly to fund this research. We walk to support the work of this amazing organization. Please consider supporting our team, Ava's All-Stars.

And we walk this year in honor of Aaron, our advocate who worked hard to ensure my granddaughter received the care she needs. My granddaughter is an amazingly brave child who received the coach's award for her swim team for showing the best effort, sportsmanship, improvement, and character. I just wish the health insurance industry tried to emulate these qualities.