This visit has a little bit more excitement and a whole bunch of extra nerves when we walked into St. Vincent’s hospital this time. Last time we were at the clinic we were just waiting and hopeful for the news for Trikafta to be approved for Maddox’s age group, 6-11. The excitement started when I met with the CF team in Washington D.C. during the advocacy days. All things were pointing for it to be approved in time for his 6th birthday. Here we are, a few weeks out from his birthday having a completely different conversation with Dr. Pete and the team. Trikafta has been approved for the ages of 6-11! What does this mean?
It’s not a cure, but darnit we are getting really close. The mutations that Maddox has is on the list of approved mutations for him to take it. It’s two pills in the morning and one pill at night and need to be taken with food. That’s it. These three pills have giving other CF’ers a complete change in their life. They are gaining weight, weaning off of medication and treatments, and are just feeling over all better. So where does Maddox fall into this?
In order for Maddox to be eligible to take the medication, we have to check certain things off of the prior authorization list in order for it to be prescribed and eventually approved by the doctors and insurance. 1) Eye exam – the foundation is monitoring all CF’ers and their vision for potential cataract issues. (Check). Maddox has his eye exam before we left for vacation in May.
From here on out Maddox will need to have a quarterly blood draw to check on the enzyme levels with regards to his kidneys. We just completed this last week and was probably one of the worst blood draws a mother could go through emotionally. Maddox has such bad experiences with blood draws in the past that after 45 minutes of talking, bribing, negotiating and calling daddy, the nursing team had to step in to get the test completed. Worst experience ever – he handled his surgeries so much better. But the test results are back and that is all within normal ranges. These blood draw appointments suck already, but to have to go through it emotionally as a mom is just taxing on the soul.
Next, we need him to turn 6! On his 6th birthday the prescription request will be sent. It can’t be sent until he is 6 per the insurance rules. At this point, there is not much more we can do. Billie has it marked for first thing on his birthday to call right away in the morning to insurance. She stated that some insurances have approved the prescription within 10 minutes – others have taken a few weeks as their systems have not been updated for his age bracket. We are now in the waiting game.
Maddox completed his normal lung capacity tests and the respiratory therapist, Wendy, told me that everything looked ok on her end. We met with the a new physical therapist and she had Maddox do a bunch of new exercises and tests to make sure that his body is functioning together as best as a 6 year old’s body can. He gained some weight and is slowly but surely growing taller. The team is concerned that he may have another underlying condition that his hindering his growth. Mom instincts tell me that it’s because he isn’t absorbing the nutrients as he needs. At our next blood draw, more panels will be requested to rule out other potential concerns. Can’t wait.
At this point, it will be the longest few weeks as we wait for him to turn 6, wait for the prescription to be submitted and wait to see what insurance says. Hopefully, in the next few weeks, I will have updates on how his body is reacting to the medications and what the future can hold for my little hero. I can’t believe it’s been 6 years on our CF journey. Time is legit flying by.