Haley Naik, MD, MHSc, FAAD, is a leader in immune-mediated skin disease research and an expert on hidradenitis suppurativa (HS). Her research team primarily focuses on the underlying mechanisms of HS to better understand the impact of HS on patients. Dr Naik also provides specialty care for HS patients through the UCSF Hidradenitis Suppurativa Clinic, which she established. She joined The Dermatologist prior to her session at the American Academy of Dermatology Virtual Meeting Experience 2021 to discuss the current medical and surgical management options for HS.
Can you briefly discuss how to approach selecting which surgical therapies to use in which patients with hidradenitis suppurativa?
Unfortunately, we don't have much high-quality evidence to guide our surgical management of HS. Clinically, determining a surgical plan for a patient with HS starts with accurate staging—by using the Hurley staging system—to determine if patients have Hurley stage 1, 2 or 3 disease. Stage 1 disease is characterized by intermittent inflammatory nodules and abscesses. Stage 2 disease is characterized by development of localized tunnels. Stage 3 disease is characterized by multiple interconnected tunnels at a given body site.
Patients who have either Hurley stage 2 or Hurley stage 3 disease are candidates for surgical intervention. Hurley stage 2 disease is typically amenable to deroofing procedures, whereas stage 3 disease, which is characterized by multiple interconnected tunnels, may require wide local excision procedures.
There is an ongoing consensus effort led by Chris Sayed, MD, at the University of North Carolina and others that is aimed at better defining HS surgical procedures. This is a first foundational step towards getting high quality surgical evidence into the literature.
Additionally, there is some evidence to support laser therapies, and specifically laser hair removal, for HS. This seems to be mostly effective for prevention of HS lesions in people who have mild to moderate disease, but it also has been shown to be promising for patients who have existing HS lesions as well.
Can you describe the patient’s experience of living with hidradenitis suppurativa?
The best way to describe a patient's experience is really in their own words. A few years ago, we conducted a focus group comprising HS patients who were moderators on Facebook support groups1 that were dedicated to HS.
They described their experience living with HS in the following ways:
- “Pain is the most important factor."
- “Living with this disease became a nightmare.”
- “I was suffering physically and emotionally.”
- “I had to advocate for myself [with regard to health care]”
- “HS is an isolating, debilitating disease”
- “Everything deteriorates.”
These are the kinds of devastating experiences that patients relayed to us in the context of that focus group.
In my own words, I would say that patients with HS face many different types of stigma that impact their mental, emotional, and physical well-being and their quality of life.
HS disproportionately affects women and African Americans in the United States. This patient population already faces stigma due to their gender and race. HS is also associated with obesity, and so patients with HS can face stigma related to their body habitus. We also know that HS is associated with cigarette smoking and cigarette smoking is quite stigmatized in our modern-day culture. Finally, patients with HS experienced stigma related to their disease, which is malodorous and disfiguring.
A study you were part of in June 20202 found that despite the high rate of HS exacerbation during pregnancy and postpartum, most of these patients did not receive HS-directed medical treatment or care from a dermatologist during pregnancy. How does the medical and surgical management of these patients differ from other cases of HS?
Although there are some special considerations for HS treatment during pregnancy and breastfeeding, in many ways, HS management in pregnant patients should not fundamentally differ from HS management in nonpregnant patients. What I mean by that is that regardless of one's pregnancy status, their HS should continue to be treated.
The challenge is that many HS patients within this single center study were not getting treatment for their HS during their pregnancy. As a result, many of them were experiencing disease flares throughout pregnancy and postpartum. That's really the gap that we are talking about here.
We know that it is important to help maintain disease control throughout pregnancy and postpartum to ensure the continued health of mom and development of the baby. Many biologic therapies and some antibiotics are generally safe during pregnancy and breastfeeding. In counseling our patients about HS treatment, we need to have deliberate discussions about the true risks and benefits of systemic treatments during pregnancy and postpartum. Some biologic treatments, including TNF inhibitors, do cross the placental barrier in the third trimester, and this can impact the baby's vaccination schedule.
Typically, for my patients, I advocate for them to continue the treatments that are helping them maintain good disease control throughout their pregnancy if the treatments are considered safe for the baby. I also ask them to establish care with a pediatrician prior to delivery and come up with a plan for breastfeeding and vaccination schedule for the baby. This is the key—a safe and uneventful pregnancy in the setting of HS requires some coordinated planning with doctors.
In your October 2020 study,3 it is noted that, “several immunomodulatory treatments currently approved for other indications are being clinically tested in [HS].” Can you describe to us what these future treatments are and what benefits they offer in treating HS?
There are several targeted therapies that are being tested for the treatment of HS. Many of these drugs have been tested and approved for use in other inflammatory skin conditions, such as psoriasis. Examples include IL-23 inhibitors, IL-17 inhibitors, JAK inhibitors, and so on.
These drugs target HS-associated inflammation. They control the inflammation associated with this disease, thereby improving the pain and reducing flare frequency and intensity. At the end of the day, the most important benefit that we hope will come from some of these new therapies is that they will allow people to live healthy and productive lives.
Finally, regarding HS medical and surgical managements, what key takeaways do you want to share with other dermatologists?
One of the most important things that I want to impart to my colleagues is that HS is an excruciating disease. It is incumbent upon us to take this pain seriously. We are now beginning to understand that there is an inflammatory component to the pain that these patients experience, but we are also now learning that there's also a neuropathic component. I'd advocate for dermatologists to pull on the sleeves of their colleagues in pain medicine and collaborate to help patients better manage their pain.
A second key takeaway is that there has been a shift in the paradigm of the way that we treat HS. Historically, HS was thought to be a surgical disease. It was a disease that we believed could be treated by removing all the tissue that was affected and all the tissue that could potentially be affected. And that was how we managed this condition. We now have better medical therapies to manage HS and the paradigm for how we treat HS has shifted. Now, HS treatment starts with medical therapies to control the inflammatory component of the disease. Once HS inflammation is under control, then we can turn to our surgical colleagues and ask them to help us remove irreversibly damaged tissue.
This paradigm shift is important for a couple of different reasons. One, we know that inflammatory wounds do not heal. It is really important to control inflammation before we create a surgical wound so that we can ensure good surgical outcomes. Second, we know that simply removing affected or potentially affected tissue will not prevent new lesions from developing. Preventing new HS lesions from forming is one of the goals of medical treatments. For all these reasons, it's important that patients are optimized on medical treatments before, during, and after their surgical procedures.
A third important take-home point that has come to the forefront over the last several years, is that the tunnel in HS should really be understood as the first sign of disease progression. When we observe tunnels in our patients, we should have a low threshold for aggressive management with medical, and eventually surgical, therapies to prevent tissue destruction that could potentially alter the course of this disease.
The final takeaway I’d like to share is that there are a lot of new therapies on the horizon for HS. The future of this disease and our ability to successfully manage it and help patients lead healthy, productive, pain-free lives is bright.
References
- 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
- Lyons AB, Peacock A, McKenzie SA, et al. Evaluation of Hidradenitis Suppurativa Disease Course During Pregnancy and Postpartum. JAMA Dermatol. 2020;156(6):681-685. doi:10.1001/jamadermatol.2020.0777
- Lowe MM, Naik HB, Clancy S, et al. Immunopathogenesis of hidradenitis suppurativa and response to anti-TNF-α therapy. JCI Insight. Published online October 2, 2020;5(19):e139932. doi:10.1172/jci.insight.139932