You are here

Statement of Patient Support

April 17, 2020

As a part of the Immune Deficiency Foundation (IDF)’s mission to improve the diagnosis, treatment, and quality of life of persons with primary immunodeficiencies (PI), the IDF supports policies and actions that ensure that patients with PI have access to health coverage and appropriate medical care.

While strides have been made to increase health insurance coverage among the population, health insurance that covers all of the needs of a patient with PI is not always available or affordable. In these cases, the IDF supports the ability of non-profits and manufacturers of

Immunoglobulin (Ig) products to administer charitable assistance programs to help patients afford health care.

During the coronavirus (COVID-19) pandemic, many people are experiencing job loss or reduced hours, which may result in loss of health insurance and/or financial resources to pay for medical care.  We are hearing from the PI community that they need financial help to be able to afford their medications, insurance premiums, and other expenses. Therefore, we strongly endorse efforts to increase support to patients including allocating additional funding to patient assistance programs that provide financial aid to patients with PI.

There are more than 250,000 individuals living with PI in the United States and many more that go undiagnosed. IDF is the national patient organization dedicated to improving the diagnosis, treatment, and quality of life of people affected by PI through fostering a community empowered by advocacy, education, and research. PIs include more than 400 types of rare, chronic disorders in which part of the body's immune system is missing or functions improperly. Fortunately, most people with PI can live healthy productive lives if they receive lifelong immunoglobulin infusion treatments. Because of the high cost of this treatment, many patients, even with insurance, rely upon assistance programs to receive their treatment. During challenging times, the need becomes even greater.

Due to the COVID-19 pandemic, our patients are in danger of losing their access to the quality healthcare that they require to maintain their standard of living. As the pandemic continues to ravage both the physical health of our country and our economy, we are becoming increasingly concerned about the prospects that patients with PI will face. We strongly urge support for efforts to ensure patient assistance programs are available as an integral safety net to keep families from financial ruin. Circumstances are rapidly changing, and it is imperative that patients with PI not lose their healthcare coverage or access to their lifesaving treatments during this pandemic and beyond.