My nine-year-old granddaughter has cystic fibrosis. Apparently, the nurse at Blue Cross Blue Shield authorized to rule on healthcare coverage appeals doesn't know much about CF. She rejected a letter from the only pediatric CF center in my granddaughter's state justifying her continuing care there. So for this uninformed nurse and anyone out there who doesn't know what a serious disease CF is, let me enlighten you.
"Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients."
Cystic fibrosis is a serious inherited chronic disease. If each parent has a recessive gene for CF, there is a one-in-four chance they will have a child with CF. It turns out, my daughter inherited her recessive gene from me. Although we didn't know it until after the fact, my daughter and I are both carriers. Unfortunately, her husband is also a carrier. Back when my granddaughter was born, testing for the CF gene was not part of a standard prenatal workup. Her parents did not have any known history of CF in their families, so it never crossed anyone's mind to test for this gene.
Like the 30,000 children and adults in the United States living with CF, my granddaughter's daily routine includes airway clearance to help loosen and get rid of the mucus that can build up in her lungs. She uses an inflatable purple "jiggle vest" that vibrates her chest at a high frequency to help loosen and thin this mucus. She also takes inhaled medications delivered through a nebulizer to keep her lungs clear. Sometimes, she is also on antibiotics to fight infections. Every time she eats, she needs to take pancreatic enzymes to improve the absorption of vital nutrients. And she is one of the lucky four percent of people with CF who are helped by a new medication, Kalydeco, which targets the genetic mutation she inherited from her father.
Her insurance now refuses to cover the only pediatric CF Care Center within 100 miles of her home, the one she has been going to since her diagnosis over six years ago. BCBS rejected her doctor's appeal because there is a pulmonologist in her area who is part of their network, which became narrow this year and excluded the center and pediatric hospital. The nurse who made this decision thinks that the pulmonologist is good enough, even though he doesn't specialize in treating CF patients. Furthermore, the nurse ruled that if my granddaughter has to be hospitalized, not uncommon for kids with CF, she can no longer go to the children's hospital that specializes in her disease. I guess she thinks any old hospital will do.
Well, it won't.
My husband is a doctor so I naively thought he would be able to navigate the vast network of prompts in the insurance company and the hospital voicemail systems more quickly than us common folk to untangle this healthcare nightmare. First, he tackled the insurance company. After waiting on hold and being disconnected several times, he never reached a human being. Our daughter was right. The only way to reach BCBS was through a fax sent by the CF center. After the denial, the only avenue of communication was what's called a "peer review." That means a nurse from BCBS talks to a nurse at the CF center. Except that doesn't happen because the CF nurse has to hang up after being on hold for 90 minutes and leaves a message. The BCBS nurse never calls back.
We try to tackle the problem at the hospital end. Amazingly, most of the phone numbers for various departments are disconnected. No worry. There are over 20 phone numbers listed, several supposedly direct links to the billing and insurance department. After an hour, my husband reaches a human being (aka a customer service representative) who tells him the hospital has no idea which insurance it accepts. Nor is there a way to discuss the $900-plus bill for our granddaughter's last check-up at the CF clinic. Go online to find a form. Call the insurance company to see if the policy will cover this bill. We are back to square one.
So this rant is for the decision-maker who sent us down this insane path by turning down the doctor's appeal, and to all of the customer service representatives who appreciate our calls but can't help us. None of you seem to know much about CF or care very much about the health of an amazingly brave little girl. Do any of you have children, grandchildren, nieces or nephews, or kids who are special in your life? I assume you do and I also assume you would want to do everything possible to ensure their wellbeing. And yet, you have no problem relegating my granddaughter to second-class care that could endanger her life.
Let me introduce you to my granddaughter. She's a bright, beautiful, spirited, and spunky third grader. She is also an excellent swimmer who came in first in her state for her age group in the 400-meter IM. She has worked hard to develop this stamina, which is good for her lungs. She's a big sister to two little brothers and loves to read. Currently, she favors Land of Stories and Ever After High. My granddaughter adores animals and hopes to become a vet. She also enjoys school and works hard to do well. Above all, she's my grandchild and I love her. So no, I won't accept your cost saving but life-endangering decision, and neither will her parents.
I hope BCBS will recognize the error of its decision. Good preventative care for a child with CF can prevent an expensive hospitalization. If you don't care about my granddaughter, ponder the bottom line. And know that I will come after you with the best weapon I have, my voice.
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