Sonia Whyte-Croasdaile
Survivor of Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis (SJS/TEN), a severe cutaneous adverse reaction (SCAR)
My SCARs Story
My name is Sonia Whyte-Croasdaile, and I am a survivor of Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis (SJS/TEN), a life-threatening severe cutaneous adverse reaction (SCAR). What began as what felt like the flu quickly became a fight for my life. My skin blistered and detached. I lost my vision. I could not eat, walk, or even recognize the person in the mirror.
But surviving was only the beginning. The chronic pain, permanent vision damage, and emotional trauma did not end when I left the hospital.
SJS/TEN may be rare, but its consequences are catastrophic. SCARs remain underfunded and under-researched, leaving patients vulnerable and families unprepared. We urgently need dedicated federal investment in SCARs research, prevention strategies, and equitable funding.
"No one should lose their life or their future to a preventable drug reaction."
Suggested Appropriations Language
Rare Disease Day on Capitol Hill 2026
We offer the following language as a resource for members and staff. The messaging is modeled on existing appropriations report conventions and may be adapted for committee use.
ASK 1 — NIH: Prioritize SCARs Research and Reporting Accountability
The Committee recognizes Severe Cutaneous Adverse Drug Reactions (SCARs) as life-threatening immune-mediated conditions with mortality rates ranging from approximately 3 percent to greater than 50 percent and no currently approved targeted therapies. SCARs include Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS) and Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN).
The Committee urges NIH to prioritize research on SCARs within immune-mediated disease portfolios, including support for tissue-level mechanistic studies; biomarker discovery for early diagnosis and risk stratification; and development of targeted, steroid-sparing therapeutic approaches. The Committee further urges cross-institute coordination among NIAID, NIAMS, NHGRI, NCATS, and NCI, and other NIH Institutes, as appropriate. The outcome is to reflect the cross-cutting relevance of these conditions across allergy, immunology, dermatology, infectious disease, oncology, and genomics.
The Committee notes that no SCARs-dedicated consortium currently exists within NIH's Rare Diseases Clinical Research Network (RDCRN) and urges NCATS to consider this gap in future funding opportunities. The Committee requests that NIH provide, in the fiscal year 2027 Congressional Justification, an update on current and planned activities addressing severe cutaneous adverse drug reactions, including cross-institute collaboration efforts.
ASK 2 — FDA: Support SCARs Development Pathways
The Committee encourages the Food and Drug Administration to support the development of targeted therapies for Severe Cutaneous Adverse Drug Reactions (SCARs). These conditions have mortality rates ranging from 3 percent to greater than 50 percent and no currently approved treatments.
Specifically, the Committee encourages FDA to evaluate SCARs-related therapeutic candidates for Breakthrough Therapy or Rare Disease designation eligibility, to facilitate externally led scientific drug development meetings focused on SCARs consistent with the Scientific EXPERT Act (S. 822 / H.R. 1532), and to support biomarker qualification efforts that could enable early diagnosis and risk stratification in future clinical trials.