The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Yesterday, the Centers for Medicare and Medicaid Services (CMS), issued guidance and rules to provide flexibilities to healthcare providers during this pandemic. The flexibilities are intended to let providers practice however they need to and wherever patients need to be during this time – whether it is using hospital buildings not normally used for patient care in order to better isolate those with Coronavirus (COVID-19) or allowing providers to better serve patients in their homes.
As we outlined in the March 30 blog post about home infusions, the current COVID-19 pandemic demonstrates just how important it is for those individuals with primary immunodeficiency (PI), and others with compromised immune systems, to avoid potentially dangerous healthcare environments. Many in our community rely on immunoglobulin (Ig) treatment, whether administered intravenously (IVIG) or subcutaneously (SCIG). We are happy to report that in response to strong advocacy by a coalition of patient groups including the Immune Deficiency Foundation (IDF), CMS has expanded access to home health services during this pandemic, providing additional options for individuals with PI to receive home Ig therapies.
In addition, in response to CMS’s actions, private health insurance plans that are part of America’s Health Insurance Plans (AHIP) have committed to matching the waivers provided by Medicare to facilitate access to home care during this time.
If you are a Medicare beneficiary with PI and do not currently receive IVIG therapy at home, there are now multiple options to move your care to the home.
Additionally, CMS has made many allowances for providers to practice telehealth. Therefore, you should be able to receive your infusion in the home by a nurse and any other services that you need via telehealth. Talk to your providers about your options. Medicare beneficiaries already had access to SCIG treatment in the home as a part of the Part B home infusion therapy services benefit, so should continue to have that option during this time.
IDF continues to work with Congress and with CMS to ensure full access to therapeutic options in the home during this pandemic and beyond. While ensuring people are able to stay in their homes during the pandemic is of immediate and utmost priority, we are hopeful that we can extend some of the flexibilities to ensure permanent access to services in the home beyond this crisis and beyond the current expiration of the demonstration project in December of this year.
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
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