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.
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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 that 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 monitoring what’s happening and is committed to keeping our community up to date with proactive communications.
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 enforcement policies for B1/B2 visa holders by the United States Customs and Border Patrol (USCBP). 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.
As of September 19, 2022, the United States District Court has granted a preliminary injunction that prevents U.S. Customs and Border Protection (CBP) from enforcing a ban that affects Mexican nationals entering the United States with B1/B2 visas to donate plasma. Lifting the restrictions on donors from Mexico will help increase donation levels for the time being, but this is an issue we continue to track closely.
The Immune Deficiency Foundation (IDF), the Plasma Protein Therapeutics Association (PPTA), and other organizations that have communities that rely on plasma-derived therapies sent letters to the Department of Homeland Security on the negative consequences of banning donation by B1/B2 visa holders and earlier this year took specific legal action in an effort to have the ban revoked.
In addition, Plasma Hero, an IDF initiative to raise awareness about and celebrate plasma donors, featured stories of Mexican citizens who were regular donors prior to the ban. The features showcased the donors' personal motivations for giving and their feelings on the temporary ban on donations, and how it was impacting their lives.
While it is important to note this injunction is temporary, we are pleased that our advocacy efforts appear to have made a difference and that a permanent solution isn’t far away. In fact, the U.S. Department of Health and Human Services recently launched “Giving=Living”, a nationwide educational campaign to encourage plasma and blood donations. We look forward to continuing to work with government, organizational, and community partners to continue to raise awareness about this critical issue.
As always, 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 idf@primaryimmune.org to let us know what’s happening or to share a question.
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
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