I wrote about frustrations and explanations for why guardianship hasn’t been completed for Gavin. I was explaining how things keep coming up that force us to reprioritize everything. See: I’m going to need an attorney.
Not twenty-four hours go by and we’re slammed once again, with yet another potentially life threatening issue.
I received two very early morning phone calls today. One of from the pharmacy responsible for managing Gavin’s IVIG infusion supplies and the other was from his immunologist.
Turns out that there is an ongoing, nationwide shortage of GAMMAGARD, the life-saving medication that consists of donated antibodies from thousands of people, used to provide Gavin with a temporary, functional immune system. Gavin has something called Common Variable Immunodeficiency, see What the Hell is Common Variable Immunodeficiency. In laymens terms, he has a severely compromised immune system. It’s serious enough for him to have a wish granted last year.
Without this medication, Gavin’s in serious, serious trouble. As it stands, Gavin has two doses left before he’s completely out. That translates into seven days.
Shortly after I got off the phone with the pharmacy, his immunologist called and wants an emergency appointment to discuss our options.
There’s a new medication that she’s considering switching him to because this isn’t the first time GAMMAGARD has gone into shortage status. The last time this happened was different because it was a shortage of specific size vials. They were forced to send out something like 40mg vials for his 30mg dose. That meant wasting 10mg each time and there wasn’t anything we could do about it.
Anyway, we have an emergency appointment in the next couple of days.
I’m not going to lie, this has me sick to my stomach because there are so many things that could go wrong. Gavin could be allergic to the new medication. There’s no guarantee it will even work on him. The new medication could be much harder for his body to cope with, triggering an autonomic crisis. What if insurance won’t cover the new medication?
My mind is putting out these thoughts at the rate of a million a second.
We’re not talking something simple like his inhaler or allergy meds. These IVIG Infusions are helping to keep him alive and healthy-ish.
Logically, I know that things will work out and his doctor won’t let anything happen to him but that doesn’t make this any easier to deal with. Anything is possible until we find a working solution.
We aren’t telling Gavin about this right now because we don’t want him to worry about it unless he has to.
On a side note, I’m not sure why there’s a shortage in the first place. I remember reading that each dose was made up of antibodies from thousands of donors and maybe there’s a shortage related to donors.
What I don’t want to find out is that it’s a patent issue with the pharmaceutical company. I don’t want to learn that they can’t produce enough and because they own the patent, no one else can make a generic version. Life saving medicatios are not a luxury, they’re a human right. Company’s should not be aloud to put profit before human life.
At the end of the day, the reason doesn’t matter. What matters is how we’re going to proceed from here and more importantly, how is Gavin going to react.
The human being is not meant to endure this kind of stress and I’m crumbling right now.
I’m sure, or I hope, your panic was ended quickly, as I hope your son’s doctor or the pharmacy reassured you that GammaGard is but one brand of many brands of IVIG. I, too, like many patients on IVIG, had to switch to a different brand this year because of the shortage of GammaGard. Most people can use the different brands interchangeably. Some will react badly to some brands because of differences in manufacturing, but that isn’t common. So, unless your son has tried multiple brands of IVIG in the past and found GammaGard was the only safe option for him, he will likely do fine on a different brand.
I hope your son is doing well!