IDF Advocacy Center



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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!

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Our Advocacy Campaigns

Current Action Alerts

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.

21st Century Cures
Click here for more information.

Federal Campaigns

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.

Biosimilars
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

State Campaigns

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.

Specialty Tiers
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.

Affordable Care Act

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

Overcoming Private Insurance Barriers

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.

IDF Advocates for You

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.

  • Become a Health Access Advocate
  • IDF Advocacy Day

Contact us to learn more about becoming an advocate: 800-296-4433 or info@primaryimmune.org

IDF Advocacy Channel

Click here for more Advocacy Channel videos.


IDF Advocacy Channel
The IDF Advocacy Channel videos communicate the powerful messages and stories of our patients to impact policy decisions. Focusing on patient advocacy on behalf of IDF public policy issues, this channel empowers the entire patient community. From those who share their personal stories to those who see others in similar situations standing up and making their voices heard, these videos tell powerful stories. IDF needs you to be a part of this important effort. Contact us to share your story!

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