“These are not therapies that provide a small measure of comfort or a little bit of increased ability. These are lifesaving and life-changing.”
John, living with a primary immune disease
“Education is critical when it comes to those of us who receive plasma protein therapies. For example, many people are familiar with hemophilia. They may have heard of something like Factor VIII, Factor IX, but most people don’t necessarily know about primary immunodeficiency diseases and the immunoglobulins that we receive, or the Alpha-1 community and the plasma protein therapies that they receive. So, it’s critical for them to understand what all these different therapies do, how they are life-changing and even life-saving, but also that they come from the same source: plasma.
“We each individually play our own part in our own way, but there are also times when we need to band together and make sure that people understand that these are not isolated little pockets of patient communities. There are a lot of people out there who benefit from plasma protein therapies. By working together, by finding some common areas, we can elevate the conversation and educate larger groups of people with simple messages about plasma protein therapies, ones that really work and are relevant no matter which therapy or condition.
“A message like “How Is Your Day?” is a good question to ask, and it is also a conversation starter. It is an entry point into what some people might see as a daunting and complicated area that they probably never dealt with before. By asking that sort of question as the entry point to discuss and make people aware of the reality of life with a rare and chronic condition, and how people benefit from a plasma protein therapy, it’s just a great way to start.“If I only had a minute to talk to policy makers, I would make sure that they understood the impact that plasma protein therapies have on patients like me. These are not therapies that provide a small measure of comfort or a little bit of increased ability. These are lifesaving and life-changing. By focusing on them, making sure that there is access to them, that they are safe, that they are efficacious, and that as many people as can use them are able to have access to plasma protein therapies. That way, people like me become less of a drain on the system because when we are on these therapies, we do well. We’re productive members of society, we’re able to be a part of the community that we want to be a part of.
“Policy makers have to consider that we are different, our therapies are different, our needs are different. These are highly regulated and highly effective therapies, and I think that it’s really critical for policy makers, decision makers and the world at large to understand just what goes into these truly miraculous therapies. It’s complicated and complex, but it’s worth it.”