Immune Deficiency Foundation

WASHINGTON, May 19, 2023 /PRNewswire/ -- The PI Conference, first launched two decades ago, brings together individuals and families across the nation to learn, connect, and network. The theme is "navigating the primary immunodeficiency journey" and sessions will be offered within one of three tracks: Skimming the Surface – this information is for those who are recently diagnosed and want to learn about broad topics that affect the PI community Deep Dive – this information is geared toward those who are interested in more in-depth medical or scientific topics Rare of the Rare – These sessions are targeted to the rarest of rare diagnoses and for those who are not necessarily antibody deficient  In 2023, IDF is pleased to welcome Academy Award-nominated executive producer and writer Emily V. Gordon, who will join in on a fireside chat discussing her journey to diagnosis with Still's disease and common variable immune deficiency (CVID). The conference will feature world-class immunologists and life management experts who will provide sessions on various topics related to PI. There will also be opportunities for peer connection, exhibitor engagement, special events, and more. Primary immunodeficiencies (PIs), also known as inborn errors of immunity (IEI), are a group of more than 450 rare, chronic conditions in which part of the body's immune system is missing or does not function correctly. According to the National Institutes of Health, there are approximately 500,000 individuals in the U.S. with a PI. These conditions are caused by hereditary genetic defects and can affect anyone, regardless of age, gender, or ethnicity. PI can cause infection, malignancy (cancer), allergy, autoimmunity, autoinflammation, or any simultaneous combination of these issues. Sponsors of the PI Conference include CSL Behring, Takeda, and Grifols. ABOUT THE IMMUNE DEFICIENCY FOUNDATION: The Immune Deficiency Foundation (IDF), founded in 1980, is the leading source of information for people looking for answers to questions about PI. Whether you've been recently diagnosed, you've been living with PI for years, or you think you may have PI, we are here to help. IDF offers programs designed to engage, connect, and empower families to live longer, stronger, and healthier lives. SOURCE Immune Deficiency Foundation

WASHINGTON, April 11, 2023 /PRNewswire/ -- The IDF Walk for Primary Immunodeficiency (PI), first established in 2013, brings together communities across the nation to gather and raise both funds and awareness for PI and the immunocompromised community in general. Fundraising can be done in teams or individually, and locations vary by year. Funds raised from these events are used to support research projects focused on the diagnosis and treatment of primary immunodeficiency. Primary immunodeficiencies (PIs), also known as inborn errors of immunity (IEI), are a group of more than 450 rare, chronic conditions in which part of the body's immune system is missing or does not function correctly. According to the National Institutes of Health, there are approximately 500,000 individuals in the U.S. with a PI. These conditions are caused by hereditary genetic defects and can affect anyone, regardless of age, gender, or ethnicity. PI can cause infection, malignancy (cancer), allergy, autoimmunity, autoinflammation, or any simultaneous combination of these issues. In 2023, Walk events will be held in Boston (Franklin Park Zoo) on September 9, Charlotte (Discovery Place Science) on July 29, Dallas (Dallas Zoo) on October 21, Milwaukee (Milwaukee Zoo) on August 5, Philadelphia (Philadelphia Zoo) on July 15, San Francisco (San Francisco Zoo) on August 19, St. Louis (Saint Louis Science Center) on September 23, and Tampa (Tampa Zoo) on October 7. Additionally, there is a virtual option (Walk for PI Coast to Coast) for those who are unable to participate at the announced event locations. The Walk for PI is presented by Takeda. Additional national sponsors include CSL Behring, Grifols, Horizon Therapeutics, and Pfizer. ABOUT THE IMMUNE DEFICIENCY FOUNDATION: The Immune Deficiency Foundation (IDF), founded in 1980, is the leading source of information for people looking for answers to questions about PI. Whether you've been recently diagnosed, you've been living with PI for years, or you think you may have PI, we are here to help. IDF offers programs designed to engage, connect, and empower families to live longer, stronger, and healthier lives. SOURCE Immune Deficiency Foundation

HELP Copays Act Would Protect Treatment Affordability for Vulnerable Patients WASHINGTON, Feb. 10, 2023 /PRNewswire/ -- Today, the Immune Deficiency Foundation (IDF) joined 75 national patient and provider advocacy groups that make up the All Copays Count Coalition to applaud the reintroduction of the Help Ensure Lower Patient (HELP) Copays Act, bipartisan federal legislation to ensure vulnerable patients can access and afford the necessary and lifesaving medications prescribed by their doctors. The HELP Copays Act (H.R. 830) would require insurers and pharmacy benefit managers (PBMs) to count the value of copay assistance for covered prescription drugs toward patient cost-sharing requirements in individual, small group, and employer-sponsored health plans. H.R. 830 is championed by a bipartisan group of members of the House of Representatives, including Representatives Earl "Buddy" Carter (R-GA), Nanette Diaz Barragán (D-CA), Brian Fitzpatrick (R-PA), Diana DeGette (D-CO), Mariannette Miller-Meeks (R-IA), Bonnie Watson Coleman (D-NJ), and Yvette Clarke (D-NY). "IDF has been vocal about the harm copay accumulators pose to patient access to critical medications and has galvanized support for state-level bans across the country, said Lynn Albizo, Vice President of Public Policy at the Immune Deficiency Fund. "We are pleased to see the HELP Copays Act introduced to fight the same health insurance practice at the federal level. IDF strongly believes that #AllCopaysCount and patients should not be penalized for using assistance programs to afford their medications." Too frequently, health plans and PBMs have instituted copay accumulator adjustment policies that don't count the value of copay assistance from drug manufacturers and non-profits towards a patient's out-of-pocket maximum or annual deductible. Copay accumulator policies enable plans and PBMs to "double dip" to increase profits and often leave patients with a "copay surprise" at the pharmacy counter when their assistance has run out and they are still responsible for the full amount of their deductible. According to a 2023 report from The AIDS Institute, at least two-thirds (64%) of health plans in the country include a copay accumulator adjustment policy. In 24 states, more than half of all plans include a copay accumulator adjustment policy. A new video from the AIDS Institute explains more about how copay accumulators harm patient access. SOURCE Immune Deficiency Foundation