November was alpha-1 antitrypsin deficiency (A1AD) awareness month, and A1AD is certainly a rare disease which deserves more awareness. Even with universal healthcare in Canada, many patients who have alpha-1 antitrypsin deficiency are unable to access the necessary treatment.
Alpha-1 Antitrypsin Deficiency
This condition is the result of a deficient alpha-1 antitrypsin protein within the blood. This protein is essential for protecting the lungs.
Without sufficient levels of this protein, patients have very little lung protection. The lungs progressively become more damaged, and some patients end up needing a lung transplant.
Currently, the only treatment option is plasma protein replacement therapy, otherwise known as augmentation therapy. This treatment slows the progression of the damage, but it doesn’t cure the disease.
Accessing Treatment
This treatment can be life changing for patients but unfortunately, many patients don’t have access to it. The COVID-19 pandemic has made accessing this treatment all the more important. This means that some patients have had to uproot their families and move to British Columbia (BC) or Quebec to get the treatment they need.
Not only is there only one treatment in Canada, there’s also been only one singular brand. It’s called Prolastin-C, and the government has not permitted its national access. They say that its availability in BC and Quebec doesn’t warrant national access.
Thankfully, this year another brand was reviewed – Zemaira. The goal is to establish an augmentation therapy category in the nation’s blood system. Advocates have been trying for this since 2017. Had this review happened four years earlier, who knows how many lives would be saved.
