My youngest daughter started on kuvan several years ago, and very quickly we found that it worked, and we were very happy (older two daughters started kuvan in their teens). Anyhow, Genavieve started kuvan rather young (I don’t remember exactly but I want to say kindergarten or so). She responded and took the medication faithfully every single day. At the end of 2020 our insurance forced her to switch to the generic version which I was told was the exact same medication. I wasn’t happy about it, but decided to just accept it. Unfortunately this meant losing our copay assistance through Biomarin as they are only able to assist with individuals on the name brand. We were lucky enough to get copay assistance through NORD, and after that little issue we sailed forward. Not thinking much about the consequences of going to generic and losing that support from Biomarin until we got a notification from NORD that they were not able to secure funding, and so our copay assistance was gone. This was extremely stressful, but we figured we would be okay since the insurance copay maxed out at $5000. This sucked and we knew it would be horrible, but we had to do what we had to do. January rolled around and we had still hoped that NORD would come through with the medication, but that simply wasn’t happening, so we contacted the pharmacy. It was at that time we found out the pharmacy would not fill our prescription and they kept telling us the copay was high, and they would help us find a program to pay it. A month went by with nothing, and medication running out. Again I called and let them know that I would pay the copay because she needed the medication. More run around and more run around. Finally I convince them to fill the prescription and let me pay the copay only to be told they never got the prior authorization and so we had to wait for that. I kept checking on it and checking on it and it was taking longer than normal. It was so stressful, and finally it came through. Then I find out that the copay is going to be $2000 a month and there is no cap as the copay will no longer go towards our deductible. This put us in panic mode because who can afford $24,000 out of pocket for medication per year. At this point we are completely in panic mode, and we get an email letting us know that we had NORD copay assistance for up to $5000. Okay, not ideal, but we will take that. She finally got her medication the beginning of April, but this put us in a rough spot. One so rough that it caused us to have to make some hard decisions.
Our choice was to take her off the medication and go back to her only eating 6 grams of protein when she had been eating 16-18 for the past 8 yrs or so, or hubby would have to leave his job…..a job he had for almost 31 yrs. He opted to leave his job and take a travel position which had excellent insurance (of course, this insurance costs us a lot of money each month too, but his pay is higher so that helps).
What did this change mean to our family? It means that my husband now travels for work and gets to come home only two days a week if we are lucky. It means the kids and I hardly see him. It also means that I now have to pick up all of the slack at home. In addition to working (thankfully part time) I also have to do all the household stuff I have always done, but also do the things he did because he certainly can’t cram it all in on the two days he is home.
I will admit that at times I want to scream. I want to holler. I want to just have a temper tantrum like a little child because it isn’t fair that insurance companies have the power to make decisions on what is in the best interest of my child medically. How dare they say what medication she needs and what she doesn’t, and how dare they charge such an astronomical fee for copays. This is wrong…..just wrong. Thankfully we were able to make that hard decision, but not everyone is in the same position that we are in. Not everyone could simply switch jobs and uproot their lives for the best interest of their child. I am so grateful to my husband for making this sacrifice. I know it isn’t easy on him, and it definitely isn’t easy on the rest of us as well.
For families whose insurance is telling you to switch to generic be very careful because losing the support of Biomarin can really be problematic in the event something changes with your insurance benefits.
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