What You Should Know About Augmentation Therapy
I am often asked if there is any difference in the treatment of patients who have COPD vs COPD caused by Alpha 1. Alpha-1 Antitrypsin Deficiency, known as Alpha-1, is a genetic condition passed from parents to their children through their genes.
Alpha-1 may result in severe lung disease in adults and/or liver disease at any age. So your doctor may decide to put you on weekly infusions of augmentation therapy.
There are three different manufacturers of augmentation therapies. They are CSL Behring which makes Zemaria. Grifols, which makes Prolastin C. Takeda, which makes Aralast NP Glassia.
What is augmentation therapy?
Augmentation therapy uses alpha-1 antitrypsin protein (AAT) from the blood plasma of healthy human donors to augment (increase) the Alpha-1 levels circulating in the blood and lungs of those diagnosed with emphysema.
The therapy is administered by a weekly intravenous infusion and is considered ongoing until other therapies become available.
The primary goal of augmentation therapy is to increase the level of alpha-1 protein in the lungs. Alpha-1 antitrypsin protects the lungs from the destructive effects of neutrophil elastase, an enzyme released by our body’s white blood cells as they respond to inflammation or infection.
Many friends I know infuse and do it differently depending on their insurance. Some infuse at home, some in an infusion center, and some at the hospital.
They do this once a week for the rest of their lives. I also know some who infuse themselves. Some learned to do it independently for convenience and save money by not having a nurse come in.
Still, others learned after Covid so they wouldn’t have to have their nurses come into their homes and possibly expose them to Covid or other things like cold, flu, etc.
Who should receive augmentation therapy?
Augmentation therapy should be given to individuals with documented emphysema and severe Alpha-1, defined as individuals with two abnormal alpha-1 genes. However, there has been some controversy about giving augmentation therapy to anyone with mild or severe lung disease.
Just like blood donation, plasma donation has slowed since covid. It takes an average of 900 donors to infuse 1 Alpha patient for one year. They need donors, so if you know anyone who likes to donate, share this info with them. The donation centers will pay you for each donation, and I believe you can donate every other day.
So while helping others, you can help yourself also. My son donates to help others in need and also likes getting compensated.
He would still donate even if he didn’t get paid, but it is a nice incentive also. I do know some Alpha patients with only one defective gene who also infuse.
Many of us don’t like the term “carrier” because we know just as many carriers who are just as sick as the ones with two defective genes.
Unlike cystic fibrosis carriers, who can only pass on the gene but not get sick, Alpha-1 carriers can carry on the gene but also get sick.
One of the bad things about infusions, like other drugs out there, is the price. I have heard it could take anywhere from $2,000.00-$10,000.00 a week to infuse an Alpha-1 patient.
A lot of insurance companies may not cover it. Thank goodness for some programs out there that will help to pay or will help with copays if insurance is not willing to cover it.
One of them is NORD, which is the National Organization For Rare Disorders. You can visit The Alpha-1 Foundation website for a list of others.
If you have any questions or comments, please direct them below in the comment section.
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