The Immune Deficiency Foundation (IDF) is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. 

Primary immunodeficiency diseases (PI) are a group of more than 200 rare, chronic genetic disorders in which part of the body’s immune system is missing or functions improperly. People with PI can face frequent health problems and often develop serious and debilitating illnesses. In the U.S., there are approximately 250,000 people diagnosed with PI and thousands more go undetected. Although some disorders present at birth or in early childhood, the disorders can affect anyone, regardless of age or gender. Today, with early diagnosis and appropriate therapies, many patients diagnosed with a PI can live healthy, productive lives. 

Many of patients with PI are unable to produce antibodies necessary to fight disease and require regular, lifelong treatments of immunoglobulin replacement (Ig) therapy. Patients in our community are losing access to the medications they desperately need due to a recent trend of shifting more healthcare cost onto the patient, also known as cost sharing. This is especially significant in patients who require medications recently classified into “specialty tiers.” 

Prescriptions for these most expensive medications and treatments are now often accompanied by hefty coinsurance costs, meaning a patient must pay a percentage of the cost of their specialty medications rather than a flat copay amount. For patients with PI who rely on Ig therapy, coinsurance of 20-50% can amount to thousands of dollars per treatment. Unfortunately, it is usually the most chronically ill patients who require specialty tier medications who bear the burden of extreme out of pocket costs.

Many patients nationwide are now forced to choose between the basic necessities of food and housing and their vital medical treatment. One patient in Michigan calculated her expenses on life-saving medication to be equivalent to an extra mortgage payment for months until the out-of-pocket limit ($6,350) was met. A mother in West Virginia was recently being forced to sell her family’s home in order to pay for their child’s specialty tier medication–one lump sum of $12,000. IDF is contacted every day by patients who cannot afford the cost of their medications. 

 

Letter to
U.S. House of Representatives
U.S. Senate
Pass H.R. 460, The Patients' Access to Treatments Act