Deepening DRESS Syndrome Understanding and Awareness at 2024 AAAAI

Wow! What a weekend we had at AAAAI in Washington, D.C. learning about new research in DRESS Syndrome.

DRESS Syndrome Foundation Co-Founder Nancy Szakacsy attends the 2024 AAAAI Annual Meeting in Washington, DC

On Feb. 23 – 26, 2024, allergist/immunologists, allied health, and related healthcare professionals attended the 2024 American Academy of Allergy, Asthma and Immunology (AAAAI) Annual Meeting. This global conference brings together the world’s leading researchers and medical experts who focus in allergic diseases, immunotherapy, skin diseases, and other aligned medical conditions.

As part of our Foundation’s mission, we aim to deepen medical understanding of DRESS Syndrome. To this goal, having a presence at AAAAI allowed our Founders Tasha Tolliver and Nancy Szakacsy to learn about new insights in DRESS Syndrome that can help us better support patients. They also connected with medical experts leading the way in DRESS research and deepened our relationships.

We’re thankful for the opportunity to get behind the scenes with such respected leaders in their field. Here are some top takeaways from our time at 2024 AAAAI:

1. Meaningful progress is happening in DRESS Syndrome research.

We attended multiple sessions about the latest work in DRESS Syndrome, which has revealed great progress in our understanding of this condition. There’s a lot more work to do until we’re able to eliminate severe drug reactions like DRESS, but we’re encouraged to see action happen.

Some research highlights include the following presentations:

• How and when to perform drug allergy testing in delayed, drug hypersensitivity reactions Dr. Elizabeth Phillips and Dr. Jessica Oh Einstein presented the latest information about the appropriate timing to perform drug allergy testing. They also discussed the value of these tests in identifying drugs that cause negative reactions. Dr. Phillips is with Vanderbilt Medical University Center (VMCU) and Dr. Einstein is with the Montefiore Drug Allergy Center and Medicine at Montefiore. For a deeper dive into delayed hypersensitivity drug testing, check out this video.

https://www.youtube.com/watch?v=-KmMF_X5g4g

• Incidence of Serious Cutaneous Adverse Drug Reactions to Oral Antibiotics Erika Y Lee, MsC graduate student at University of Toronto, presented this study. In her discussion, she shared how sulfonamides and cephalosporins are the most reported antibiotics to cause severe drug reactions. Overall, for every 1,000 antibiotic oral prescriptions, two patients will have a reaction and require hospital visits. For cephalosporins, five hospital visits per 1,000 prescriptions could occur.

• The importance of Penicillin allergy de-labeling A big conference topic was how identifying true penicillin allergy in a person can affect their health outcomes. Surprisingly, new research has revealed that 95% of people labeled with a penicillin allergy are actually not allergic to this antibiotic. This mislabeling can create medical complications because patients are more likely to receive broader spectrum antibiotics that can cause DRESS and other severe, adverse drug reactions. Further, patients are more likely to have:

  • Antibiotic-resistant infections

  • Longer hospital stays

  • Increased chances of death

• Factors for predicting if a maculopapular rash will progress to DRESS Dr. Natasorn Lekuthai from Chulalongkorn University presented this study. She shared key findings on factors that can better predict DRESS Syndrome in patients: When researchers observed these factors together, they could help differentiate patients with a maculopapular rash — skin with a combination of a flat, discolored area (macule) and raised bumps (papules) — that would likely progress to DRESS Syndrome. This finding is helpful because it could be an indicator earlier in illness as to whether a patient should stop taking medication, as well as help inform how to best treat them.

  • Vitamin B12 levels

  • Greater amount of body surface the rash covers

  • Time from drug exposure to symptoms

• How DRESS patient’s drug allergies are documented in their electronic health record Dr. Chantal Lemon Soto from Massachusetts General Hospital presented this study. She shared new research that reveals how DRESS Syndrome is often unavailable as a code in electronic records at hospitals. This lack of labeling puts patients with prior drug allergies at risk for re-exposure to allergic reactions. As a result, 1 in 5 patients who’ve previously experienced DRESS Syndrome did not have this detail documented in their health records.

2. We met some of the top SCARs/DRESS allergists/immunologists in person.

Developing relationships with leading medical researchers in DRESS is essential to our mission. These connections also allow us to know DRESS-aware physicians and researchers who we can help guide us to advise patients during their treatment and recovery.

Nancy Szakacsy (left), Dr. Jason Trubiano, Tasha Tolliver, and Dr. Jonny Peter

For example, we’ve been able to connect patients to critical research on genetic risk factors for DRESS Syndrome. These studies are being conducted by the Center for Drug Safety and Immunology (CDSI) at Vanderbilt University Medical Center (VUMC).

We were thrilled to meet and interview:

• Dr. Kim Blumenthal from Massachusetts General Hospital (Boston)

• Dr. Jason Trubiano from the University of Melbourne (Australia)

We were also invited by VUMC to attend the AAAAI Annual Benefit. We were honored to have a seat at the table alongside our medical advisor and friend, Dr. Elizabeth Phillips. The AAAAI Annual Benefit further allowed the opportunity to meet others integral to the advancement of DRESS research. These experts include:

• Dr. Jonny Peter from the University of Cape Town (South Africa)

• Dr. Ana Copaescu from McGill University Health Centre (Canada)

• Dr. Cosby Stone from Vanderbilt University Medical Center (2021 Career Development Awardee)

• Dr. Santiago Alvarez-Arango from John Hopkins University School of Medicine (2023 Career Development Awardee)

A huge thanks to the efforts these medical experts are doing to deepen DRESS medical awareness and understanding.

3. We celebrated Dr. Matt Krantz, a Foundation Faculty Development awardee.

Dr. Matt Krantz of Vanderbilt University Medical Center accepts his award

Dr. Matt Krantz (VUMC) has played in integral role in identifying genetic risk factors for DRESS Syndrome. This distinguished award helps him continue his important studies, specifically in translational genotyping for genetic risk of severe cutaneous adverse drug reactions (SCARs).

We were further honored when Dr. Krantz gave a shout-out to the DRESS Syndrome Foundation and our role in connecting patients to their research studies.

Call to Action: Researchers Need More Government Funding

One major takeaway we have from connecting closely with the medical community is that SCARs researchers direly need more funding. To date, no dedicated government funding exists for SCARs research, unlike many other diseases. Without funding, the research community will be forever held back in their ability to make strides in understanding and eradicating SCARs like DRESS Syndrome. It’s our aim to continue sounding the alarm about the importance of government, institutional, and industry funding — and to help charge a path toward adequately backed research.

Dr. Cosby Stone (left), Dr. Ana Copaescu, Nancy Szakacsy, Tasha Tolliver, Dr. Elizabeth Phillips, Dr. Jonny Peter, and Dr. Jason Trubiano

We envision a world free from severe drug reactions. By attending 2024 AAAAI, we see that, with each year, we’re coming closer to understanding DRESS Syndrome, how to best treat patients, and how we could one day live in a world without DRESS. Every day, we’re learning more that brings us closer to our vision. We walked away from this weekend feeling even more inspired in our mission.

If you’d like to donate to support our advocacy work, your contribution helps ensure we can continue attending essential educational meetings like AAAAI. Every dollar makes a difference.