The primary immunodeficiency (PI) community has unique needs that are unfamiliar to most policymakers. To overcome healthcare barriers faced by our community, the Immune Deficiency Foundation (IDF) maintains a robust advocacy program focused on national, state, and local healthcare issues.
Although specific issues vary over time, our efforts strive to make access to quality care a top priority. This includes access to all treatments, all sites of care, and specialists. The IDF Advocacy Center has a comprehensive list of resources and tools that will help you become informed about relevant policies that effect your life and information about participating in our advocacy campaigns where you can ensure your voice is heard!
Patients’ Access to Treatments Act (PATA, HR 1600)
H.R. 1600, the Patients’ Access to Treatments Act (PATA), seeks to restrain high out-of-pocket costs for specialty medications like immunoglobulin. This bipartisan legislation will help ensure patients with chronic, disabling and life threatening conditions to access the treatments they need. It would limit out-of-pocket costs for medications in a specialty drug tier (typically Tier IV or higher) to the dollar amount applicable to the drugs in a non-preferred brand drug tier.Click here for more information.
Medicare IVIG Demonstration Project
In January 2013, the Medicare IVIG Access Act (HR 1845) was signed into law by President Barack Obama, creating a three-year demonstration project for Medicare Part B recipients with a PI. It will study the impact of paying for intravenous immunoglobulin (IVIG) home infusions. Click here for more information.
IDF advocates that patients have access to safe and effective biologic and biosimilar medicines. Biologic medicines are made from living organisms and are far more complex than traditional chemical drugs. Biosimilars are medicines that are highly similar, but not identical to biological medicines. Because of the uniqueness and complexity of biologics, biosimilars are not generic copies of biologic medicines. The FDA has the authority to approve biosimilars and there are many key decisions that are unknown that can impact patient safety. Click here for more information
IDF SCID Newborn Screening Campaign
Get the facts about the IDF SCID Newborn Screening Campaign using the Newborn Screening Toolkit to become a successful advocate. Our goal is to have all states screen newborns for Severe Combined Immune Deficiency (SCID). Click here for more information.
Some commercial health insurance policies are now moving vital medications (mostly biologics such as immunoglobulin which patients with primary immunodeficiency rely on) into “specialty tiers” that utilize high patient cost-sharing methods. These specialty tiers are now commonly requiring patients to pay a percentage of the actual cost of these drugs – from 25% to 33% or more – often costing hundreds, even thousands, of dollars per month for a single medication. These practices are placing medically necessary treatments out of reach for average Americans. Click here for more information.
IDF will periodically post status reports, links to other websites, and explanations of various provisions of the Affordable Care Act as well as implementation reports. Click here for more information
IDF advocates against harmful insurance preferred product formularies and policies for immunoglobulin (Ig) replacement therapy. IDF believes that physicians, in consultation with their patients, should make decisions about changes in IVIG treatment as they are in the best position to understand the specific medical history and unique needs of each patient. Please contact IDF if your insurance plan is instituting a preferred product formulary for Ig therapy. Click here for more information.
Whether through a letter, email, phone call, or face-to-face meeting with elected officials, you are the vital voice on legislation and policies impacting the PI community.
Contact us to learn more about becoming an advocate: 800-296-4433 or firstname.lastname@example.org
Maddie, a teen vounteer for IDF, created this inspiring, short video based on her experiences advocating for patients with primary immunodeficiency on Capitol Hill and leading successful fundraising teams for IDF Walk for Primary Immunodeficiency.
Click here for more Advocacy Channel videos.