Health care in the United States of America is not perfect, but it does have its advantages. I have come across people with alpha-1 antitrypsin deficiency (AATD) from other places who tell me they’re getting denied treatment for this very real condition.
Even Western medicine is limited in what it can accomplish. Healthcare workers are quite aware of that. But not all developed countries recognize AATD as something to treat effectively.
This can mean a lot of depression and anxiety over AATD-related symptoms. It could be something as simple as a blood test showing someone has AATD without any hope of treatment.
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As an empathetic person, I feel what others are feeling with very little effort. I want to help them, but these people in particular seem like they are calling out from behind glass. The willing and able often come to the US for treatment.
Read about therapies for AATD
Nobody wants to be denied treatment for an illness. Additionally, no one wants to feel like there is no light at the end of the tunnel for that. Even now, I am awaiting treatment that was interrupted because of a change in my insurance for three months.
It’s a long story, but in short, I finally got a job that I can handle and now I can’t get augmentation therapy because of the insurance change. Their reasoning is that I am not of the PiZZ genotype, I am PiSZ. If I were, things would be easier.
That’s understandable, but augmentation therapy was helping me to stop/slow chronic obstructive pulmonary disease (COPD) progression. I can look back to when I had COVID. I was getting augmentation therapy then.
Being that sick was hard on my lungs and my body. It’s a well-known fact, in the AATD world, that augmentation therapy can really help minimize permanent damage due to something like a cold (or worse). It’s the protein we AATD patients lack that helps us heal from respiratory illnesses.
Yes, my emotions have taken a hit, but I’m glad I still have options. I am also grateful because I can simply change insurance so I can get them. In places like the United Kingdom, augmentation therapy is not allowed.
In fact, sometimes support groups will not condone people joining if they are not people from the same country as the group. I don’t know all the reasons, but I am guessing it is hard to relate to someone who is fighting a different battle.
We in the US with AATD are fighting a similar battle, but we have resources. We have some specialists in AATD here, and they are less common outside of the US.
I have a lot of opportunities to work here, too, with accommodations. My country is known for that. It’s great to know that wherever I choose to work, there is always another choice just beyond it if it doesn’t work out.
Many of us are on disability. For me, I work because it helps calm my nerves because, for the time being, I can (not everyone can do this). I have it made, really, even though I am presently not getting all of what I feel I need. And I could let that mess with me more than necessary, if I wanted. But my fellow patients with AATD inspire me.
Some of them experience the same thing I have been going through. And they are still fighting. I really appreciate those who have a great attitude but don’t pretend they don’t suffer, either.
It’s a blessing to be on this trip called life with someone else along. It doesn’t happen often, but when we get that glimpse of light, it’s amazing. Affirmation is a powerful thing. Even if a healthcare provider doesn’t have the type of empathy we might want, taking time to try to understand (and help) really does a lot. We have all been in a hard place at some point, so looking at it that way can help them know how to respond.
It’s been amazing to have a doctor familiar with AATD, and who was willing to do what was necessary to help me. That’s what my current pulmonologist is doing right now.
I have learned a lot in the past few years. There is so much hope in gratefulness.
