Why We Must Stop Normalizing the “Pregnancy Itch”
February 18, 2026 | HearFromHer, RareDisease
In the world of rare diseases, success is often measured by the speed of diagnosis. However, for women facing rare liver conditions like Intrahepatic Cholestasis of Pregnancy (ICP), the medical system often defaults to “normalizing” debilitating symptoms.
Listen to the full episode here.
In the latest episode of the Hear From Her podcast, Tatyana Kushner (Weill Cornell Medicine) and Andrea Goldstein (Mirum Pharmaceuticals), discuss why this status quo is dangerous. While ICP might present as “just an itch,” it is a complex condition where elevated bile acids can lead to severe risks for the infant, including respiratory distress or stillbirth.
The Data Behind the Disparities Recent research led by Dr. Kushner suggests a 70% recurrence rate for ICP in subsequent pregnancies. Furthermore, the data reveals significant racial disparities; for instance, while Primary Biliary Cholangitis (PBC) was long thought to be a condition primarily affecting Northern European women, it is now clear that women of color face significant barriers to diagnosis and access to care.
Listen to the full episode here.
The Future of Care: Genetics and Advocacy
- Genetic Insights: Lowering the threshold for genetic testing can help women understand their risks before they even conceive.
- Interdisciplinary Action: Effective management requires a “bridge” between hepatologists and OB-GYNs to ensure symptoms aren’t dismissed at the first point of contact.
- Clinical Courage: Despite the challenges of conducting trials in pregnant populations, “compassionate use” programs and innovative research are paving the way for new treatments.
As Andrea Goldstein puts it, “Every failure in a study leads to key learnings that help us be successful the next time.” For the modern clinician and patient alike, the goal is clear: don’t just learn the system—have the courage to change it. Listen to the full episode here.
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For more information, please contact Jelena Spyropoulos.
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