IDF Advocacy
Primary immunodeficiency diseases are relatively rare and chronic conditions, many of which require expensive therapy. As a result, individuals with primary immunodeficiency diseases deal with a variety of issues, which range from state of the art information about diagnosis and treatment, health insurance, access to care, employment, and schooling, to name just a few areas of concern. IDF helps patients and families with questions surrounding these issues every day, and has developed many publications and programs to meet their needs.
In order to help solve some of the problems that our community faces, IDF maintains a full-scale advocacy program focused on national and local healthcare issues. The IDF professional staff, its consultants and volunteers work in collaboration with Congress, the Department of Health and Human Services and its agencies, including the Food and Drug Administration, the Centers for Disease Control, the Centers for Medicaid and Medicare Services, the National Institutes of Health, as well as other agencies to impact decisions that affect primary immunodeficient patients and their families.
Although the specific issues may change, the IDF advocacy program focuses on three main areas:
- Access to quality health care
- Blood product safety and availability
- Funding for medical and scientific research
Grassroots Advocacy
The Importance of Grassroots Advocacy
Grassroots advocacy is the expression of popular support (or opposition) for a position that demonstrates the depth of constituent support and gives legislators an added degree of confidence in their position. You don't need to be a professional lobbyist to influence how policy and legisation are created. Grassroots advocacy helps to personalize an issue. The PIDD patient community has unique needs that most legislators are not familiar with. All you need is personal experience, factual information to back up your personal experience, knowledge of who the key decision-makers and what is most likely to influence them. IDF can provide the factural and political information necessary for a successful advocacy campagin. But really, it all starts with you.
The IDF Grassroots Advocacy Toolkit
You can become a standard of excellence for grassroots advocacy. With a basic understanding of the "Do's and Don'ts" of letter writing and telephoning legislators; writing letters to newspapers or engaging talk radio; and a strong understanding of the issues; you can be part of an unbeatable team that can help ensure that patients with PIDD receive the quality of care that they deserve.
Keeping IDF Informed of all Grassroots Activity
For a grassroots advocacy campaign to work to its full potential, we must all be on the same page. Please take heed of the following reminders:
- Please forward or copy IDF on all e-mails correspondances with legislative offices using llamotte@primaryimmune.org or idf@primaryimmune.org.
- The same should be taken in consideration with mailed letters, please send us a copy or scan and e-mail us a copy of all correspondances that occur.
