'All Hands on Deck' for Hidradenitis Suppurativa: HS Foundation Spotlights Advocacy, Education Initiatives

The Hidradenitis Suppurativa (HS) Foundation is an organization dedicated to enhancing the lives of individuals affected by HS. At the core of its mission is a commitment to advocacy, education, and research, aiming to create a world where no one suffers from HS.

Through its various initiatives, the Foundation seeks to address the needs of both patients and medical professionals, offering the latest treatment guidelines, online courses, and an annual international conference, the Symposium on Hidradenitis Suppurativa Advances, to disseminate cutting-edge knowledge on HS.

Hadar Lev-Tov, MD, MAS, is the president of the HS Foundation, as well as an associate professor in the Dr Phillip Frost Department of Dermatology and Cutaneous Surgery at the University of Miami's Miller School of Medicine.

Lev-Tov recently spoke with Dermatology Times to discuss recent advances in HS, the evolution of HS research, upcoming efforts of the HS Foundation, and more.

"We need an all hands on deck approach to better understand what is causing HS," he said.

Q&A

Q: Were there any particularly notable studies, advancements, or discussions regarding hidradenitis suppurativa at the AAD conference this year?

A: HS continues to be at the forefront of pharmacological innovation in dermatology. Discussions and data about the use of JAK-STAT inhibitors as a pill option for patients is exciting and various molecules are making their way through phase 2 and 3 studies and coming closer to the clinic. The inhibition of the IL-17 pathway remained front and center in many lectures. A new class of medications known as nanobodies is being studied in HS, illustrating again that HS is where pharma comes to innovate. Interestingly, new data about the potential benefit of B cell modulation was reported in a clinical trial, supporting previous pre-clinical research.

Q: As the president of the HS Foundation, what are your thoughts on how the field of dermatology is evolving in its approach to diagnosing and treating hidradenitis suppurativa?

A: We have made significant progress in our disease awareness and treatment modalities in HS. However, the gaps in our knowledge and available therapies are still significant and have direct impact on our patients. Substantial challenges remain especially in producing meaningful data about disease etiology. Additionally, the field will benefit from a study about the natural history of the disease so we can learn, for example, who might be the patients that will progress rapidly and require early escalation of treatment. Hopefully, increasing our knowledge in these two areas will inform the creation of more specific and effective therapies. In the interim, the Foundation is committed to improving the lives of people with HS by supporting research, education, treatment and building our advocacy arm.

Q: Could you highlight any emerging trends or areas of focus in the management of hidradenitis suppurativa that clinicians should be aware of?

A: Despite large phase three trials showing efficacy in treating HS with biologics, these drugs remain underutilized. Dermatologists should be empowered to take on patients with moderate to severe HS and offer these effective therapies. The Foundation remains the most trusted source for clinicians to receive support. For example, prior authorization letter templates are available for a free download on the HS Foundation website: https://www.hs-foundation.org/for-clinicians/prior-authorization-templates

Q: In your opinion, what are the most pressing challenges or unmet needs in the field of hidradenitis suppurativa treatment?

A: As mentioned, we need treatments that target the cause of the diease. In the interim, developing surgical techniques, wound care solutions, simplified treatment pathways, and objective biomarkers remain some of the lower hanging fruits.

Q: How do you envision the collaboration between clinicians, researchers, and patient advocacy groups like the HS Foundation shaping the future of hidradenitis suppurativa care?

A: We need an all hands on deck approach to better understand what is causing HS. Therefore, all stakeholders should collaborate to create research programs in HS. I am encouraged by the uptick in the NIH funding for HS, however, more support is needed and I hope that other funding agencies will join the effort as well. For its part, the Foundation has substantially increased its grant portfolio and will continue to support HS research and HS researchers.

Q: What advice or insights would you offer to dermatologists and health care providers who are looking to improve their understanding and management of hidradenitis suppurativa?

A: The HS Foundation and other organizations have put forward substantial educational materials and the Symposium on Hidradenitis Suppurativa Advances (SHSA) remains the leading meeting in "everything HS" - https://www.hs-foundation.org/events . The AAD meeting has sessions that focus on HS for dermatologists who treat HS routinely and those who wish to start. The Foundation is collaborating with many educational organizations to bring HS education to the clinicians who see it, even beyond the dermatologist's office (e.g., Family Medicine, OB/GYN, Emergency Medicine, etc.). Thankfully, it is now virtually impossible to go to a dermatology meeting and not see at least one lecture on HS. The Foundation also has developed a program to support clinicians who wish to receive mentorship by national experts with the hope these new physicians will also become HS experts.

Q: Are there any specific initiatives or projects that the HS Foundation is currently undertaking to further support clinicians and patients that you would like to spotlight?

A: The Foundation is committed to improving resident education. For example, the HS Academy event is a highly sought after weekend HS “bootcamp” for dermatology residents. Each year over 175 residents apply for roughly 135 spots at the HS Academy, where five HS experts, including one HS patient, train and educate residents in all aspects of the diagnosis and care of HS: https://www.hs-foundation.org/events

Q: Looking ahead, what are your expectations for the coming year in terms of advancements, research priorities, or developments in the field of hidradenitis suppurativa, and how do you anticipate these will benefit clinicians and patients?

A: The Foundation is ambitiously looking to become a leader in HS advocacy in order to narrow the current gaps in disease research, treatment, and awareness. 

Q: Is there anything else we didn’t discuss that you feel is important for dermatology professionals to know or consider?

A: The HS Foundation is a great resource for both patients and clinicians. Please refer your patients to the HS Foundation for a wealth of information about living with HS, as well as links to other helpful resources and HS-related organizations: https://www.hs-foundation.org/