When you or someone you love is diagnosed with a severe, chronic disease, your whole life can change. Just ask Cydney, who was diagnosed with hidradenitis suppurativa (HS) by her dermatologist when she was a teenager.

“One of my biggest ‘Aha!’ moments was learning I could be nicer to myself despite what I see in that mirror,” Cydney says when reflecting on her decades-long journey. 

HS is a chronic, recurring, painful, and debilitating inflammatory skin disease.¹ For the estimated 0.1% of people in the U.S. living with HS, the symptoms are painful and include nodules, abscesses, and tunneling (channels connecting with each other and leading out of the skin) that typically occur in the armpits, groin, and buttocks.^1,2,3 The psychological and emotional burden is high, with patients feeling isolated, experiencing embarrassment, social isolation, and low self-esteem.^4,5 

The average time from symptom onset to HS diagnosis is 10 years, with more than three misdiagnoses along the way.⁶ This delay in diagnosis can result in the disease progressing to more severe HS, particularly for people with aggressive progression.⁶

Understanding Patient Needs and Bridging the Gaps with Healthcare Providers (HCPs)

To help raise awareness of HS and address the gap in diagnosis, UCB is launching “MakeHStory,” a disease education program featuring stories of people living with HS, like Cydney.

Grounded in the same insights from people living with HS, and their HCPs, the program includes both HCP- and patient-focused components. The recently launched HCP website offers providers a suite of materials, including downloadable in-office tools, that can support their ongoing care of people living with HS. Looking ahead, a patient-focused website will mobilize individuals to have a conversation with their HCPs about their HS care and treatment options.  

“It means so much to me to know that I am helping other people in the HS community feel heard and know that they are not alone,” said Cydney.

Defining Care Barriers to Strategically Address Access Challenges

In addition to educating about HS, it is important to understand the barriers people may face in accessing treatment, once diagnosed.

The HS Coalition, a leading group of patient advocates and healthcare professionals convened by UCB, is an independent, multi-stakeholder coalition aimed at addressing health inequities in HS with a focus on transforming the policy and access landscape in the U.S.  The coalition is presenting new research at SHSA that aims to better evaluate state and district-level factors that influence care access and outcomes for patients with HS in the U.S.  

The research showed that, depending on which state they live in, people living with HS in the U.S. face different challenges to accessing care, in part due to delay in diagnosis and restrictive insurance policies. These differences compound the existing health inequity in HS.

We’re proud to contribute to the HS community in ways that go beyond the medicine. To learn more about UCB’s commitment to patients, visit ucb-usa.com/Patients.

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. Garg A, et al. Real-world findings on the characteristics and treatment exposures of patients with hidradenitis suppurativa from US claims data. Dermatol Ther (Heidelb). 2022 Dec 31. doi: 10.1007/s13555-022-00872-1. Epub ahead of print. PMID: 36585607.
4. Shukla N, Paul M, Halley M, et al. Identifying barriers to care and research in hidradenitis suppurativa: findings from a patient engagement event. Br J Dermatol. 2020;182(6):1490-1492. doi:10.1111/bjd.18818.
5. Mahon JM, et al. An Update on Health-Related Quality of Life and Patient-Reported Outcomes in Hidradenitis Suppurativa. 2020. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7021915/. Accessed May 2023.
6. Kokolakis G, Wolk K, Schneider-Burrus S, et al. Delayed diagnosis of hidradenitis suppurativa and its effect on patients and healthcare system. Dermatology. 2020;236(5):421-430.