You are here

Many of the inquiries that we’re receiving are related to individual situations about medications or medical care. These inquiries should always be directed to a physician. The IDF team is following the situation very closely and will continue to provide updates as needed. At the current time, all IDF events scheduled between now and July 1, 2020, are either postponed or being held virtually. Please visit the IDF Calendar of Events for additional details. 

Subscribe to IDF Text Alerts


Actualizaciones Acerca COVID-19 
1 de Abril de 2020 (actualizaciones en español)

Vea las últimas noticias de IDF relacionadas con COVID-19 a continuación, y vuelva a visitar nuestra página seguido para nuevas actualizaciones. Seleccione el enlace a continuación para obtener las últimas noticias de IDF relacionadas con COVID-19. Vuelva regularmente para ver nuevas actualizaciones. Aprende Más>>


Critical Update Now Allows Access to Home Infusions for Medicare Patients
March 31, 2020 (blog post)

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. READ MORE>>


Home Infusion Access
March 30, 2020 (blog post)

The current Coronavirus (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. The very nature of PI means our community is especially vulnerable to viruses like influenza and COVID-19. Ensuring that those with PI have continuous access to at-home intravenous immunoglobulin (IVIG) treatments during a health emergency and beyond is a major focus of the Immune Deficiency Foundation’s (IDF) advocacy. READ MORE>>


It was Bound to Happen
March 27, 2020 (email from IDF President & CEO, John G. Boyle)

This morning, after taking a few minutes to participate in the wonderfully absurd Twitter #FancyFriday, I realized that my morning coffee intake wasn’t having its usual effect. I felt like crud. For anyone whose eyebrows are shooting up–no, I don’t have COVID-19. What I think is happening is that the pace of the last couple of weeks is catching up to me. I’m in awe of the stamina of the healthcare workers, the emergency responders, and the countless unsung heroes who are keeping things moving. Those who are powering through an enormous physical and emotional strain to keep people safe and to keep vital services on track. READ MORE>>


Your Questions Answered: COVID-19 & CGD
March 27, 2020 (blog post)

In an effort to answer some of the most common questions coming in through IDF, we thought that we would address some of the concerns from the CGD Community with Dr. C. Buddy Creech, MD, MPH, Directo of the Vanderbilt Vaccine Research Program and Associate Professor of Pediatric Infectious Disease at Vanderbilt University School of Medicine. Since CGD patients are more at risk for secondary infection due to COVID-19, what can they do to protect themselves? READ MORE>>


Together, We Can Make a Difference
March 26, 2020 (blog post)

This is an extraordinarily difficult time that has left many of us asking, “What more can I do? How can I help?” IDF is about to start a COVID-19 & PI survey project that is anticipated to run throughout the pandemic; there is an urgent need to understand the impact on those with PI. The project will aim to collect data each week on various issues affecting the community. This is our chance, as a community, to do something and do something impactful and important. No one else is currently collecting nationwide COVID-19 data and outcomes on those with PI. If we do not do it and do it now, no one will. We have a tremendous opportunity to make a difference and IDF can’t do this important COVID-19 research without you. READ MORE>>


APHL Poised to Help Newborn Screening Community Overcome Challenges Caused by Pandemic
March 25, 2020 (blog post)

In the midst of the coronavirus pandemic, the Association of Public Health Laboratories (APHL) is assisting state health labs with how best to adapt the process of sharing results of newborn screening tests with parents. Newborn screening is essential for early diagnosis of severe combined immunodeficiency (SCID), a primary immunodeficiency that can be fatal if not diagnosed within the first year of life. READ MORE>>


Telehealth Access Expanded in Response to Coronavirus
March 23, 2020 (blog post)

On March 17, 2020, the Centers for Medicare and Medicaid Services (CMS) temporarily expanded access to telehealth services covered by Medicare so that more people can receive services from their doctors and other healthcare providers without having to travel to a healthcare facility. These changes will allow people with primary immunodeficiency (PI) on Medicare to access needed healthcare without having to unnecessarily expose themselves to infections and will last for the duration of the COVID-19 Public Health Emergency. Under this new policy, Medicare will now pay for office, hospital and other visits furnished by doctors, nurse practitioners, physician assistants and other providers via telehealth, regardless of the location of the patient. READ MORE>>


A Message for Those who use Subcutaneous Immunoglobulin Replacement Therapy (SCIG)
March 20, 2020 (email from IDF President & CEO, John G. Boyle)

When I sent out that first Friday update two weeks ago, I didn’t anticipate that this is where we’d be today. I now manage a team that is teleworking 100%, the good snacks in my pantry are a distant memory, and the 10-year-old (who’s supposed to be on spring break) keeps cycling back to movies he’s watched many times over. READ MORE>>


COVID-19 Video Update
March 18, 2020 

Kathleen Sullivan, MD, Ph.D. is the Chief of Allergy and Immunology at Children's Hospital of Philadelphia and a member of the IDF Physician Advisory Committee.She put together a video update with some helpful information about COVID-19. The information covers updates on treatment, specific concerns for different types of primary immunodeficiency, and vaccine development. WATCH VIDEO>>


Ask IDF: What You're Asking
March 18, 2020 (blog post)

In an effort to answer some of the most common questions coming in through Ask IDF, we thought that we would publically address the top three over the past week. Those questions relate to fever response, workplace rights, and finding data about positive test results in the PI community. READ MORE>>


What Would Mr. Rogers Do?
March 14, 2020 (email from IDF President & CEO, John G. Boyle)

One of the world’s most famous actors just tested positive for coronavirus. In Australia. That’s 10,000 miles away from here. And yet, probably 30+ people in my newsfeeds said that the Tom Hanks news made the entire situation feel more real. Closer to home, if you will. Of course, for those of us with a primary immunodeficiency (PI), it’s felt pretty close to home for weeks now. We didn’t need Mr. Rogers to tell us that. READ MORE>>


IDF Update
March 13, 2020 

As of 3:00 p.m. Friday, March 13, IDF staff will be teleworking and our headquarters in Maryland will be closed. You can still reach out to us in all the ways you always did, you just can't visit our offices.


Ask IDF: We Don't Have All the Answers
March 12, 2020 
(blog post)

The initial Ask IDF inquiries we received about COVID-19 were medical in nature and geared toward individual clinical situations. The only advice that we were able to give in that situation is that your physician is the best primary source of information about specific medical questions. That is still true today. The situation has evolved this week and so have the questions we’ve been receiving through Ask IDF. A few of these scenarios have included scenarios regarding school for your children, masks, the safety of deliveries, and questions about travel. READ MORE>>


COVID-19 Video Update
March 10, 2020 

Kathleen Sullivan, MD, PhD is the Chief of Allergy and Immunology at Children's Hospital of Philadelphia and a member of the IDF Physician Advisory Committee. She put together a video update with some helpful information about COVID-19. The information is divided into five sections, including an update (as of March 10), a description of testing, the topic of lifelong immunity, risks to PI patients, and whether immunoglobulin is protective. WATCH VIDEO>>


Addressing Fear in the Community
March 6, 2020 (email from IDF President & CEO, John G. Boyle)

This morning as I brought my 10-year-old over to the bus, I gave him the news that he’d been dreading: there were now COVID-19 cases in our home state of Maryland. He doesn’t have a PI, but he knows all about my condition, so he was deadly serious when he told me that he was going to lock me in the house to keep me safe. READ MORE>>


COVID-19 Video Update
March 4, 2020 

Kathleen Sullivan, MD, PhD is the Chief of Allergy and Immunology at Children's Hospital of Philadelphia and a member of the IDF Physician Advisory Committee. She put together a video update with some helpful information about COVID-19. The information is divided into five sections. Those sections include an update (as of March 3, 2020), tips on preventing infections, logistical information, and what to do if you get sick. WATCH VIDEO>>


Updated IDF Statement on COVID-19
February 28, 2020

The statement provided information on CDC's three-level warning system and what that might mean for travel, both domestic and international.  It also included links to updated information on plasma therapies form the PPTA. READ MORE>>


Initial IDF Statement on COVID-19
January 28, 2020

This first statement provided some early information on the virus itself, how it might be transmitted, what you can do to protect yourself, and some additional information regarding updates from the Centers for Disease Control. READ MORE>>