The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
As we head into the final months of 2022, IDF remains focused on the issue of overall plasma supply and the availability of immunoglobulin (Ig) replacement therapy that upwards of 70% of our community relies on to stay healthy and stay alive.
We realize questions about plasma supply will likely always be a concern for our community and that there is a continued sense of uncertainty about this issue. Please know that our team remains vigilant in our monitoring of what’s happening and is committed to keeping our community up to date with proactive communications.
There’s no question blood plasma donation levels and the amount of source plasma were negatively impacted over the past several years by the COVID-19 pandemic and associated restrictions. These factors reduced overall donations by as much as ten percent by some industry estimates.
Fortunately, no pattern or widespread dip in Ig availability has been experienced since the start of the pandemic. In addition, we are not hearing from patients who are having trouble accessing Ig therapy due to lack of availability, which is normally the first sign of major challenges ahead.
The IDF team continues to engage with stakeholders on all sides of this critical issue to be a part of the conversation surrounding plasma supply and how to increase donations throughout the United States and internationally as well.
Challenges to maximizing plasma supply persist, including limitations on the ability of Mexican citizens to cross the United States border to donate due to changes in visa enforcement policies by United States Customs and Border Patrols. These restrictions have been in place for the past year and the true impact on source plasma supply levels and availability of Ig therapy is still to be determined. Recently, a federal court issued a temporary injunction that lifted the restrictions and will help increase donation levels for the time being, but this is an issue we continue to track closely.
As an organization, IDF continues to do all we can to boost blood plasma donations and ensure a safe, reliable, and effective supply of Ig therapy for our community. Plasma supply will be a focus of a session at the 2022 Primary Immunodeficiency Conference and our Plasma Hero program continues to gain traction, building awareness and increasing access to resources for prospective donors. Most importantly, Plasma Hero amplifies the voices of donors, celebrates them for their lifesaving efforts, and recognizes them for the heroes that they are in our community and to others who rely on plasma-derived therapies.
We often field questions from people living with PI and their families asking what they can do to help on this front. Use your own social network and communications with friends and family to try to recruit new plasma donors by sharing how vital it is for members of the PI community and information about Plasma Hero. Know that our team will continue to watch for warning signs of any prospective shortages and will keep the lines of communication open if there is cause for concern.
Our team will continue to use IDF’s website and social media accounts to keep our community updated on developments and news related to plasma supply.
We want to hear from you if you are having problems accessing your Ig replacement therapy or if you have specific questions about this important issue. Contact us at president@primaryimmune.org to let us know what’s happening or to share a question.
Jorey Berry
President and CEO
Immune Deficiency Foundation
Tracy Shaw
Chair of the Board of Trustees
Immune Deficiency Foundation
This content should not be used as a substitute for professional medical advice. In all cases, patients and caregivers should consult their healthcare providers. Each patient’s condition and treatment is unique. The benefits and risks of any treatment should be discussed with the patient’s provider.
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