Chiron is a sweet, kind, smart, bubbly 13-year-old who was born with Cystic Fibrosis. For those who don’t know, CF is a genetic condition which causes thick, sticky mucous to build up in his body, primarily in his lungs and digestive track. It is a disease that he works hard everyday to fight, but you would never know it if you know Chiron because he is a fun-loving, caring kid who just wants to be viewed as “normal” and live life to the fullest.

The last three years have been hard in Chiron’s CF journey. He lost 25% of his lung function rather suddenly despite all the hospitalizations and medication trials. We were eventually able to stop the decline but have been unable to get his numbers back up. We had mostly resigned ourselves to a “new normal.”

Enter Trikafta  

In the fall of 2019 the FDA approved a gene modulator for Chiron and thousands of others with CF that has been making significant improvements in lung and body function for many, many people, on average 15% lung function improvements. This is unheard of in a disease like CF that is chronic and progressive. Due to his declining numbers, Chiron was approved for the medicine quickly and in November 2019 we got his first box.

After two months on the medicine here is what we notice: his cough is less overall, he is not constantly relapsing into a new cough, when we do activities, such as skiing, he has much more stamina and no longer has days where he is so tired after only a couple of runs that we need to rest. Chiron just got sick last week for the first time since being on the medicine. Normally when this happens, we are ready to call the doctors asap to get him on medicines because it means it is going to go directly into his lungs, cause an exacerbation and we will have to fight it hard. This time it started to move into his lungs just a little bit but stopped. THIS HAS NOT HAPPENED IN YEARS!! The medicine is working and we are so grateful.

Enter Insurance Company Nightmare

The problem with Trikafta is that the medicine costs about $30,000 a month. It is insane. We were able to get Chiron insurance approval and because last year we had met our insurance out-of-pocket maximum it was covered. However, because some of Chiron’s medicines are so specialized, every January we have to go through the insurance nightmare of changes in approved pharmacies, re-authorizations, renegotiations, appeals…it always sucks but this year for the first time ever we have hit a situation that we can’t find our way around.

It’s a very long tale- Chiron’s mom has been fighting with the insurance companies and the drug manufacturer for the last 4 weeks- but the short version is that Chiron’s primary insurance will only fill the medicine at one specialty pharmacy and Chiron’s secondary insurance, through the state, will only cover it through a different specialty pharmacy. They refuse to work with one another. We have appealed, plotted and schemed, talked to patient assistance programs, and pleaded and cried and freaked out. The simple truth is that rather than Chiron’s secondary insurance picking up our $8,000 deductible like usual, we are responsible for it and cannot fill Chiron’s medicine until we can pay it. The drug manufacturer has a patient assistance program to help but there is a HORRIBLE law that if a patient has a Medicaid insurance (Chiron’s secondary due to medical need) they are not allowed to give any assistance. How insane is it that the people who most need help (Medicaid recipients and people with high medical need) are barred from getting outside financial assistance by patient programs if they have state insurance?! Chiron’s mom has worked in the medical and insurance industries for years, has turned over every rock and talked to dozens of people to get help but this rock seems immovable and we are running out of time. We only have two weeks until we need to order his medicine again.

So here we are, asking for help from our community because honestly when things aren’t working and there is nowhere else to go, we always have each other. We humbly ask of you now that if you are able to help and have anything to give to this cause we would really appreciate it and promise to return the favor to those who come to us in need of help. Our hearts break when we think of Chiron not being able to access this medicine that is making such a difference in his life because of an insurance company technicality.    

Since time is of the essence, we would appreciate it if you would share this campaign with your communities as well. Thank you to everyone.