Jasmine Espy was diagnosed with Hidradenitis Suppurativa (HS) when she was around 14 years old, though she experienced her first nodule at age 11. Throughout her journey, Jasmine experienced what many people living with HS, an immune-mediated inflammatory disease, experience: nodules, abscesses, severe scarring, and tunneling, which can occur anywhere there is a hair follicle but appeared for her in the armpits, groin, back, thighs, chest, breasts, and buttocks.^1,2 These symptoms were often accompanied by debilitating pain, with flares characterized by intensified inflammatory symptoms, including discharge and itching.³ 

After studying journalism and film in undergrad and grad school, Jasmine decided to use her voice to advance the awareness of HS and became an advocate in the community, founding a non-profit advocacy group, The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID). She also serves as the Co-Chair of the Hidradenitis Suppurativa (HS) Coalition. Convened by UCB, the HS Coalition is a multi-stakeholder group of leading advocates and healthcare professionals assembled to address the health inequities people living with HS face and help transform the policy and access landscape in the United States. 

This is an example of the sustainable growth and commitment that UCB seeks to achieve together with communities to create solutions that provide long-term value to improve the lives of people living with severe diseases. We aim for long-term value creation to contribute to an equitable and prosperous society for all.

UCB’s Commitment to Sustainable Access and Pricing Transparency

Three years ago, UCB released its first-ever U.S. Sustainable Access and Pricing Transparency Report, which outlined UCB’s commitment to an innovative, competitive, and value-based system and advanced a dialogue on how to make our healthcare system stronger and more accessible. 

This year’s report not only underscores our commitment to people, not just disease, and those who care for them, but also highlights our work to deliver affordable access and account for the value of our medicines and other solutions. We undertake initiatives beyond delivering medicines to improve how the healthcare system – and its twisting set of intermediates that dictate access – operates for people living with severe diseases.   

From our engagements with people living with HS like Jasmine, we know they experience stigma associated with the physical symptoms of the disease and face additional challenges to accessing care, in part due to delay in diagnosis and restrictive insurance policies.⁴ Furthermore, people in the black community experience higher rates of disease, which can exacerbate the challenges that people with HS encounter.⁵   

“The hidradenitis suppurative (HS) Coalition aims to bring together clinical experts, healthcare professionals, advocacy leaders, and those living with HS together with one unified voice in order to bring positive policy changes in the U.S.,” said Co-Chair Jasmine Espy. “Our mission is to bring greater awareness to what it’s like to live with or care for someone with HS, to spotlight health inequities, and to advocate for equitable access and achievable federal and state policy solutions to achieve better outcomes.”

This is only one example in one disease area. We work with stakeholders throughout the healthcare system to promote affordable and equitable access to care for all people living with severe diseases. 

Making Our Medicines Accessible to Those Who Need Them

This year’s report comes after an unprecedented year delivering new treatment options to people impacted by severe diseases. We had three U.S. FDA approvals for novel medicines for the treatment of rare neurological and immunological diseases, as part of numerous other approvals and launches from UCB around the world.

As we deliver new medicines for people living with severe diseases, we continue to follow a value-based pricing approach to support access to all of our medicines. UCB also works to ensure our medicines are accessible to those who need them by considering patient out-of-pocket costs when negotiating formulary access with payers and offering patient assistance programs. In 2023, our U.S. patient assistance programs supported 74,064 patients. 

Advancing Policies to Build a More Sustainable Healthcare System

Our efforts remain focused on policies that improve patient affordability and preserve the patient-provider relationship. 

We know too many people encounter frustrating barriers to accessing the medicines their physicians prescribe for them. From our work convening the HS Coalition and meeting with other patient communities, we understand the barriers people living with severe diseases encounter. We actively support the patient community to advance policies designed to remove impediments to healthcare providers’ ability to prescribe the most appropriate therapy and preserve manufacturers’ ability to provide assistance for patients who cannot afford needed medicines. 

Despite policy headwinds like certain provisions within the Inflation Reduction Act, UCB is driving change through transparency on current access and affordability challenges to facilitate critical conversations to move our healthcare system forward in ways that better serve people living with severe diseases.

References:

1. Lee, Erika Yue et al. “What is hidradenitis suppurativa?” Canadian family physician Medecin de famille canadien vol. 63,2 (2017): 114-120.
2. Ingram, JR. The epidemiology of hidradenitis suppurativa. Br J Dermatol. 2020 Dec;183(6):990-998. doi: 10.1111/bjd.19435. Epub 2020 Sep 3. PMID: 32880911.
3. Sarfo, A, Butt, M and Kirby, J. Periodic worsening, or flare, in hidradenitis suppurativa: the perspective of people with hidradenitis. Br J Dermatol. 2020;182:218-219.
4. Vinkel C, Thomsen SF. Hidradenitis Suppurativa: Causes, Features, and Current Treatments. J Clin Aesthet Dermatol. 2018;11(10):17-23.
5. Gavidia, M.  Worse Outcomes Seen Among Black Patients With Hidradenitis Suppurativa. AJMC. October 5, 2022. Accessed February 1, 2024. www.ajmc.com/view/worse-outcomes-seen-among-black-patients-with-hidradenitis-suppurativa.