Cydney Carter, a 27-year-old woman from Colorado Springs who has bravely come forward to share her story and raise awareness about hidradenitis suppurativa (HS), inspires us every day to continue creating value for patients, their families, and society.

HS is a recurring, painful and often misunderstood skin condition.ⁱ It can cause painful bumps in areas like the groin and armpits, often mistaken for acne.ⁱⁱ Diagnosed at 17, Carter spent years visiting emergency departments where her abscesses were wrongly treated. The condition, which disproportionately affects women, specifically Black women, is often stigmatized and misunderstood, leading to delayed diagnoses.ⁱⁱⁱ After hiding it for years, Carter now shares her journey through social media to connect with others and combat the stigma surrounding HS.

People like Cydney are a big part of our driving force and why we have not only introduced new treatments and expanded existing therapies in 2024 to cover more conditions, but we've also continued our research and studies to better serve patients, caregivers, and healthcare providers. Some of the disease areas in which we have identified a unique and immense unmet need and continue to innovate are hidradenitis suppurativa, generalized myasthenia gravis (gMG), Dravet syndrome (DS), and Lennox Gastaut syndrome (LGS).

Our Commitment to Unmet Needs
As part of our continued commitment, I’m proud to announce UCB recently published our fourth annual UCB U.S. Sustainable Access and Pricing Transparency Report, highlighting our efforts to tackle the unmet needs of individuals with neurological, immunological, and rare diseases—regardless of how large or small the patient population is.

In this year’s report, we shined a light on this unmet need faced by the patients our medicines serve and the actions we have undertaken to support them through all parts of their disease journey. A big part of our success last year was understanding the entire patient journey—from diagnosis to treatment. For us, it’s not just about the medicine; it's about recognizing the various obstacles patients face, like a provider not fully grasping treatment challenges, financial burdens faced by patients and caregivers, or the emotional toll the disease takes on the individual.

Advancing Partnerships, Programs and Policy Changes that Make a Difference
This understanding has also driven us to create and evolve several cornerstone programs with our partners to address unmet need both directly related to and beyond treatment, including the Hidradenitis Suppurativa report with The Health Policy Partnership; the UCB Myasthenia Gravis Scholarship™, and our Third Annual Health Equity Expo.

Beyond the concerns around diagnosis times, financial burdens of disease, and treatment challenges, we have identified external health system factors that must be addressed to further reduce unmet need for these patients like Cydney. That’s why we are advocating for policy changes that reduce patient out-of-pocket costs and improving access to innovative and specialty medicines, as well as legislation that calls for greater transparency in existing programs like 340B. After all, our medications, especially for rare or severe conditions, only make a difference when patients can access them.

Looking ahead to 2025, I'm energized by the progress we've made and excited about how we can continue to address unmet needs. Collaboration with patients, advocacy groups, and peers remains crucial. We're committed to providing transparent pricing and value information and advocating for policies that benefit the patients our medicines serve now and into the future.

I invite you to dive into our fourth annual UCB U.S. Sustainable Access and Pricing Transparency Report to discover more about areas of unmet need that are important to us, our innovations in 2024, our commitment to responsible pricing and patient access, and the successes of our cornerstone initiatives benefiting patients beyond medicine. It's all about continuing to learn, adapt, and ensure that we're meeting the needs of those who rely on our treatments, and we will continue to honor this commitment.

 

ⁱHidradenitis Suppurativa. UCB. https://www.ucb.com/solutions/diseases/hidradenitis-suppurativa

ⁱⁱHidradenitis Suppurativa. UCB. https://www.ucb.com/solutions/diseases/hidradenitis-suppurativa

ⁱⁱⁱMcCormick, B. (2024, September 27). Hidradenitis suppurativa disproportionately affects black, female patients. AJMC. https://www.ajmc.com/view/hidradenitis-suppurativa-disproportionately-affects-black-female-patients