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‘Compromised: Life Without Immunity' profiles families affected by PI

June 27, 2024
Ben Everett receives IVIG
Ben Everett, 11, shown here receiving his intravenous immunoglobulin (IVIG) replacement therapy, is one of several people with primary immunodeficiency (PI) featured in the recently released documentary, "Compromised: Life Without Immunity."

The Immune Deficiency Foundation hosted a special screening of its much-anticipated documentary “Compromised: Life Without Immunity” at the 2024 PI Conference, held June 20-22 in Chicago. The film, directed and created by staff member Zachary Moore, depicts the lives of several primary immunodeficiency (PI) community members, as they recount their journeys to diagnosis, explain their treatments, and discuss how PI has impacted them and their families.

The documentary features Ben Everett, 11, diagnosed with common variable immunodeficiency (CVID), and his parents, Kim Everett, also diagnosed with PI, and Matt Everett, of Los Angeles, California; Dionne Stalling, 54, of St. Louis, Missouri, who is diagnosed with CVID and founded Rare and Black; Victoria Medl, 20, of New Jersey, who has an unspecified PI and is a student Rutgers University, and her mother, Agnes Medl; Shane Brisson, 54, diagnosed with chronic granulomatous disease (CGD), who works as a magazine creative director and lives in St. Petersburg, Florida; Jerry Shorten, 37, diagnosed with severe combined immunodeficiency (SCID), who is a residential developer in Houston, Texas; and Yvette Shorten, mother to Jerry and two other sons, both of whom passed away from complications of SCID.

“It’s hard living in the PI world. Everything seems so much scarier, and we never know what the next illness will be or just how serious something could be. It’s just a different risk level, a different level of awareness,” said Kim Everett, in the documentary.

“I wish that outside of the PI world people could understand that sometimes a cold isn’t just a cold and that just because they aren't very sick that doesn’t mean that they don't have what could be a very serious infection for a PI patient.”

Themes of determination, longing, acceptance, joy, and hope carry viewers through the PI experience as the individuals interviewed describe their lives.

“I think it will always be a struggle for PI patients whether it's fighting for insurance, convincing the doctors we need to do these other tests, getting to an immunologist, or just getting that referral can be difficult,” said Brisson in the film.

Moore said he interviewed dozens of persons with PI before choosing to focus on the final group featured in the film. While each person’s story is different, the common thread is that despite facing great adversity, the interviewees find ways to overcome both physical and emotional challenges.

“I think the film marries the difficulty and impossibility of the decisions people affected by PI have to make just to get their treatment, live their lives, and have families with the joy they’re still capable of feeling and the happiness they’re still capable of finding,” said Moore, who filmed 20 hours of footage to create the documentary.

Interspersed between the five segments of patients sharing their stories are healthcare providers who discuss the hardships PI patients face such as time to diagnosis, barriers to treatment, and co-morbidities due to PI.

Dr. Manish Butte, immunologist and division chief of pediatric immunology, allergy and rheumatology at the University of California, Los Angeles; Colleen Dansereau, a certified nurse practitioner who is the director of clinical operations in the gene therapy program at Boston Children’s Hospital; Dr. Vivian Hernandez-Trujillo, immunologist and director of the division of allergy and immunology at Nicklaus Children’s Hospital; Dr. Stacey Clardy, autoimmune neurologist at the University of Utah; and nurse Rita Morales share insight into their patients’ struggles and reveal their own frustrations as advocates.

The medical community lacks immunologists, creating a greater burden on those who do choose that profession, they explain. Further complicating matters is pushback from insurance companies on coverage for treatment. Time spent wrangling with insurance companies for prior authorizations to cover medicine like immunoglobulin (Ig) replacement therapy could be spent treating patients.

“I could see… maybe 10 more patients a week,” said Hernandez-Trujillo. “That would be so important and so helpful but instead, we’re having to spend the time justifying the treatment that we know is meant to help the patient.”

The documentary shows how those with PI balance both hope and fear in their lives, and a prime example is Medl, who is pursuing a medical degree at Rutgers. Medl is candid about how she has goals, including building a career in medicine, but wonders if they are attainable.

“My biggest concern for my future is that I have a lot of dreams and aspirations and I want to live a very full and fulfilling life. I want to get married, and I want to have children and I want to build a family and I want to be an amazing physician,” she said. “I’m just scared that I won’t be able to do that, or I won’t be able to be there for my family.”

In the end, the film makes clear that people affected by PI share an important trait—resilience.

“When I think about the zebras and IDF, we are chosen, we are peculiar, we are different, but we serve a purpose, we are special, especially in God’s eyes,” said Yvette Shorten. “Inspiration comes in different ways and sometimes you can inspire someone who doesn’t have a medical issue but may just have lost that hope, but when they see from around the world the multitude of people who are thriving and living (with PI), how can you not have that hope and that light and that inspiration to share with others? I mean, it’s amazing.”