A proud member of the World PI Week Steering Committee, the Immune Deficiency Foundation (IDF) is the national non-profit organization in the U.S. dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases (PI) through advocacy, education and research. This World PI Week, the campaign focuses on ensuring access to life-saving immunoglobulin (Ig) replacement therapy—something IDF has been fighting for in the U.S. for many years.
Ig therapy is one of the most important and successful therapies for people with PI. On the IDF website, www.primaryimmune.org, the most viewed page over the last two years is the treatment information on Ig therapy with 256,248 page views. The most frequently asked questions at IDF Education Meetings are in regards to Ig therapy. From the 2012 IDF survey, IDF Primary Immune Deficiency Diseases in America, approximately 75% of patients surveyed are treated with Ig therapy.
Advocating for the Community
Because so many people living with PI depend on lifelong Ig therapy, IDF’s advocacy efforts focus on access to this lifesaving treatment. The Foundation works to knock down barriers to proper treatment and care. As more insurance companies attempt to manage and even curb the use of Ig therapy in people with PI, IDF continually expands its advocacy education programs through increased emphasis on state legislative and insurance issues. The Foundation collaborates with other patient organizations on public policy and legislative matters to leverage its resources on federal and state healthcare issues.
Private insurance denial of Ig therapies and patterns of cost shifting to patients is attracting more attention and has the capacity to minimize the problems currently faced by Medicare beneficiaries in the U.S. In addition, with the changes that the Affordable Care Act (ACA) has had on the overall healthcare system and the PI community, it is clear that the need for IDF advocacy is critical now more than ever. IDF believes that healthcare professionals, in consultation with their patients, should make decisions about care and changes in treatment. Currently, IDF is working with other organizations to advocate for our community and others with rare, chronic diseases as the U.S. government looks to repeal the ACA. We also are working to ensure that Medicare beneficiaries have access to subcutaneous Ig therapy (SCIG), which has become a concern because of changes in reimbursement. As a result of the 21st Century Cures Act, there will be a large scale disruption to care for Medicare beneficiaries whose lives depend on access to such lifesaving treatments.
IDF employs successful advocacy tactics to include cultivating relationships with legislators and Members of Congress, and meeting with and providing policy comments to government officials to increase awareness of issues important to the PI community, particularly access to Ig therapy. In 2017, IDF will host its annual IDF Advocacy Day on Capitol Hill during World PI Week.
Patient education is central to the mission of IDF. The Foundation offers a full spectrum of educational publications developed by experts for individuals, families and healthcare professionals, many of which address Ig therapy, including the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, 5th Edition, IDF Diagnostic & Clinical Care Guidelines for Primary Immunodeficiency Diseases, 3rd Edition and the IDF Clinical Focus Subcutaneous Immunoglobulin Replacement. IDF does not charge individuals or healthcare professionals for materials, which are available for order or download from the IDF website.
Each year IDF holds educational programs throughout the U.S. featuring sessions from experienced healthcare professionals and life-management experts. Ig therapy is a regular topic of discussion, offering unique opportunities for people with PI to ask questions and meet others going through similar experiences.
Year round, online and by phone, IDF answers inquiries and assists individuals and families living with PI with a broad array of questions related not only about Ig therapy but also regarding diagnosis, treatment, health insurance, peer support, physician location and literature requests, among other topics. Each year, IDF receives more than 4,000 requests, including hundreds of questions about Ig therapy.
To provide data about PI, IDF has conducted more than 40 major surveys of patients and healthcare professionals since 1995. IDF survey data has been used effectively with the government in quantifying the impact of the Ig shortage several years ago, in helping change clinical trial design, and more recently in demonstrating the impact of reimbursement changes on patient care. This data is used by immunologists and other physicians in educational sessions that outline patient treatment and diagnosis experiences, as well as by industry in understanding the demand for, and efficacy of Ig therapy. IDF survey data is often cited in medical journals, government sponsored reports, by media and has been the basis of several articles in peer-reviewed journals.
IDF has conducted National Treatment Surveys in the U.S. (1997, 2003, 2008, 2013). Released in 2013, the National Treatment Survey and SF 12, a survey that is a valid measure of physical and mental health, taught IDF what experiences the PI community faces with Ig therapy, including intravenous immunoglobulin (IVIG) and subcutaneous immunoglobulin (SCIG). That data illustrated that proper diagnosis and therapy can be a tremendous benefit to those with PI. 61% of those who were diagnosed with a PI and currently on Ig therapy reported their general health as good or better, compared to only 15% who reported their health as good or better prior to diagnosis and treatment for their PI. 55% of those surveyed were using IVIG, and 45% were using SCIG.
IDF provides the data that has a measurable impact on the conversation surrounding people with PI and the treatments they rely upon.
Through advocacy, education and research, IDF works to ensure that all individuals and families living with PI have access to life-saving Ig therapy.