Opportunity Knocking: COVID-19 and Advocacy
The global pandemic is one of those things that is obviously a bad thing. With it comes a unique opportunity though, and the primary immunodeficiency community and those with other immuno-compromising conditions cannot afford to let it pass us by. For once, the entire world is talking about what it means to be immunocompromised and what we can do to protect those people. Many of the things that this community of patients has been advocating about for years is center-stage right now, and we have to capitalize on the media attention to advance the conversation.
Patients that are immunocompromised, especially those of us with primary immunodeficiency, are more prone to severe, frequent, and long-lasting infections. Your minor cold or sinus infection could become fatal to us. It could also just as easily turn into an infection that lasts for months, requiring several courses of antibiotics (or even IV antibiotics) to treat and clear up. We are forced to take more sick time than the average employee because of this. Sometimes, we even have to dip into our vacation days, because we don’t have enough sick days for the year. Some cannot work at all, because their condition is too debilitating to be in a public work environment daily.
Many of the amenities that would have benefited our community for years became accessible overnight when the pandemic hit the US: easier access to grocery delivery and curbside pickups, more frequent cleaning of public places, telehealth visits with our providers that were covered by insurance, greater awareness of the dangers of exposing immunocompromised individuals to pathogens when you go to work/school sick, more flexible attendance policies for people when they are sick, and greater awareness around the importance of plasma donation. We could certainly be bitter that these things only came about when illness affected the “healthy” community instead of just us, but instead, I think we should choose to look at it as an opportunity for greater awareness.
We need to make sure people understand why it is important for us to continue to have the option of telehealth visits during cold and flu season. It is too easy for us to catch something and become very ill after sitting in a crowded waiting room while everyone around us is coughing and sniffling. We need people to understand how many infections we may be able to avoid if our coworkers, friends, and family were more mindful of staying away from us and staying home when they are sick. It would also drastically improve employment options if our employers gave us an option to work from home without penalties when we are sick.
Lastly, convalescent COVID-19 plasma has been talked about in a big way. Major celebrities like Tom Hanks are sharing on their social media about the importance of plasma donation, but let’s remind everyone that plasma donors are ALWAYS essential, even when the donor does not have COVID-19 antibodies. I am able to go about a more normal life because plasma-based therapies full of antibodies to many different pathogens exist. Plasma therapies also treat conditions like hemophilia, Alpha-1 Antitrypsan Deficiency, and even some types of cancers and neurological conditions. Plasma, like many other blood products, always seems to be in shortage or on the brink of shortage. Those of us on immunoglobulin therapies are potentially one product recall away from another major global shortage. Yet, plasma treatments are often the only options available for the patients that need it, and they are often lifelong therapies. If just a few of our friends became regular plasma donors, we may be able to help make a huge dent in the need for plasma products.
We all have to make an effort to take advantage of the public’s attention to make sure that these changes endure beyond the scope of this pandemic. It is okay to be frustrated by the fact that many of the amenities only came about when everyone else needed them, but we also have to be more vocal than ever to make sure that we are educating the public about why these very important changes must still be available to us when COVID-19 is no longer a major public health concern. We may very well have the perfect opportunity to make life after COVID-19 easier for all of us and for the generation of patients that come after us. It is time to push harder than we ever have for the sake of our entire patient community.
