Gunner’s Current HealthCare


Since birth, Gunner has been on his father’s healthcare plan which is provided by his employer, the state of West Virginia.

Getting Gunner to an Accredited CF Center

After diagnosis, our insurance agency told us that we had to go to the West Virginia University (WVU) CF Center for Gunner’s care. This was impractical as it is located 3 hours away from our home compared to the Children’s National CF Center in Washington, D.C. which is located only 1 1/2 hours away. In addition, the care center data for the CF Center at Children’s National is significantly higher than the data for the WVU CF Center. (While the data can’t tell you everything about a CF accredited care center, it can tell you which centers are meeting the health goals for patients established by the CF Foundation. The difference in data scores for the CF centers at Children’s National and WVU is significant.)

After speaking with a representative and explaining our travel situation, the insurance agency agreed to allow the Children’s National CF Center to be covered under “in-network” costs.

Getting Gunner the Best Care

Because of the outstanding reputation of the University of Minnesota (UMN) CF Center (having the highest data scores in the nation), we contacted their center and asked if Gunner could visit the UMN CF Center for consultations to add to his excellent care he receives from the Children’s National CF Center. They accepted Gunner as a patient as long as we pay the additional costs our healthcare won’t pay since UMN is “out-of-network.” While this can get costly, it is important to us that Gunner is seen by the best cystic fibrosis specialists in the country. 

The Financials

While our current medical costs can be high, we are saving for Gunner’s future expenses which will be higher. Family and friends have already donated over $2,000 for Gunner’s medical bills which we have put into a savings account.

Here is a quick explantation of our costs for our current insurance program:

Monthly Insurance Premium                $150

“In-Network” Providers and Services

Yearly Family Out of Pocket Maximum          $1,250

Yearly Family Deductible Maximum                $400

While these deductibles are being met, our insurance company pays 80% of all costs that are within their allowed “reasonable and customary charges.” After the 2 deductibles are met, our insurance pays all costs that are within their allowed “reasonable and customary charges” at 100%.

“Out-of-Network” Providers and Services
Yearly Family Out of Pocket Maximum           $2,500

Yearly Family Deductible Maximum                $400

While these deductibles are being met, our insurance pays 60% of all costs that are within their allowed “reasonable and customary charges” and 100% of these “reasonable charges” after the “out-of-network” deductibles have been met.

1 Month Supply Non-Generic Drugs                 $50

1 Month Supply Generic Drugs                          about $15


Currently, Gunner is enrolled in a drug manufacturer program for his pancreatic enzymes. We receive his enzymes and daily vitamins free until he turns 4. After that, we will be responsible for the charges. For Gunner’s current dose of enzymes (2 capsules per meal) which will increase as he grows, it will cost $1,000 for a 3 month supply.

We know that as Gunner grows and his disease advances prescription drug costs and hospital stays will increase our financial burden. Newer drugs which have proven to be effective in maintaining lung function can cost thousands for a 1 month supply. However, the Cystic Fibrosis Foundation has many resources including a pharmacy for CF patients which buys the drugs CF patients need in bulk to reduce costs. They also have a legal hotline to help CF families get the most out of their insurance company, government, and drug manufacturer programs. In addition, we have found that some hospitals and doctors groups will give discounts on charges if you pay your bill within 30 days.

While the financial costs of taking care of a CF child are high and dealing with the complexities and bureaucracy of the insurance industry is time consuming, it is worth it. We happily pay these costs to keep Gunner healthy, and we know that there are existing programs out there, public and private, that will help us when costs increase.

CF Foundation Care Center Data

CF Foundation Page on Health Insurance 

CF Foundation Page on Patient Assistance Programs 

CF Foundation Legal Hotline

This website is a project of Students for Life of America.