As a patient with alpha-1 antitrypsin deficiency (AATD) who has asthma and emphysema, I try to stay thankful for what I have, like health insurance, as well as the little things in life. Medically speaking, I may not have good “quality of life” ahead, but I am working hard on it.
I won an important battle recently: My insurance will cover my infusions. Originally, I was denied coverage because my AATD genotype is PiZZ instead of PiSZ. After many appeals, it was approved. I kept asking questions until we found the problem, which was the number of allowed grams of medicine requested. It was almost 1,000 times more than the amount approved.
We don’t know how or why it happened, but I am relieved that we found the problem and it’s been resolved. After a 6-month interim period, I will start getting augmentation therapy again to slow down the progression of the diseases in my lungs.
I cannot tell you how much lighter and more hopeful I feel. This medication is expensive and has to be approved by a doctor and the insurance company. I’m sure I could not afford the thousands of dollars it would cost. Thankfully, my insurance will cover everything.
Read more about experimental therapies for AATD
This is not something they would normally do, as I don’t fit the category of the typical patient with PiZZ receiving augmentation therapy. They found another program that, for some reason, made it possible. It was a bit of a stretch for the insurance company, and I credit them for getting me the help I needed.
I think this can happen with certain insurance companies, and I have heard of many patients who never got the augmentation therapy they needed. It saddens me. I am sure, in many cases, the need was not recognized, or the numbers were skewed.
The sad part is if the need is left unmet, the patient can, later on, be so ill that they cannot receive infusion therapy. If they did, it could further damage their medical state. Dealing with regret for not having fought for this right would make it harder to bear.
I am counting myself blessed. I couldn’t have done it alone, so my patient navigator with the pharmacy and the patient advocate with the drug manufacturer helped a great deal. They walked me through how to fight the coverage denials and then let me do it. There are times when the doctor’s word is all that is needed. I think this kind of thing happens more than I originally thought, and the long process of getting it right is tiresome. I thought I would give up so many times when we didn’t know why it wasn’t working to get everything approved.
Read more about treatment for AATD
There are some downsides to therapy, like getting poked every week, but overall, I can’t imagine how much worse my life could get 25 years from now, at 60 years of age, without it. That’s around the age a lot of people retire. I often wonder how much worse my shortness of breath can get. When you have to think every day about how you’re going to get a deep breath at 36 years of age, you think about these kinds of things. I think anyone would.
There is a chance, with this medication, that I could live to 70 years of age or beyond. Having not yet found the career I want or started a family, I think there is a lot to look forward to, so I’m hopeful.
There are many things that humans need to be able to look forward to. So many patients with AATD get a diagnosis and feel as if we have gotten a death sentence or life in prison. Even people who are “carriers” wonder what’s ahead for them. I see it all the time in my main support group. If more years of higher quality of life is something augmentation therapy is offering, then I want to do what it takes to get it.