The Global Hidradenitis Suppurativa Atlas (GHiSA), has released an in-depth report on hidradenitis suppurativa (HS).
This comprehensive document, developed with the backing of the International League of Dermatological Societies (ILDS), delves into various aspects of HS, from diagnosis to its impact on patients’ lives and the available treatment options. The report also sheds light on the significant gaps, barriers, and challenges that exist in the understanding of HS.
ILDS President Henry Lim, MD, a dermatologist at Henry Ford Hospital in Detroit, Michigan, recently spoke with Dermatology Times about the key findings of the report and what he hopes clinicians, health care providers, and policymakers will take away from it in order to work toward a better future for patients with HS.
Transcript
Henry Lim, MD: My name is Henry Lim. I’m a dermatologist at Henry Ford Hospital in Detroit, Michigan. I am the current president of the International League of Dermatological Societies. It is a society that is based in London, an international society consisting of 200 member societies from around the world, over 100 countries representing over 200,000 dermatologists. We do a lot of global activities including close interaction with the World Health Organization, as well as running World Congress of Dermatology with occurs every 4 years. The last one was in Singapore last year. The next one is going to be in 2027 in Guadalajara, Mexico. In addition, we have a foundation called International Foundations of Dermatology, which supports multiple projects around the world.
Within the ILDS, an important project is the so called, “atlases.” These are essentially collecting data either based on site visits to different parts of the world, or based on what is available in the literature, on the various prevalence, as well as management, as well as access to medication, of important dermatological diseases. There are 4 diseases that we are focusing on. One is psoriasis, the Global Psoriasis Atlas has been ongoing for quite a number of years. Then we have just added 3 other diseases, atopic dermatitis, hidradenitis suppurativa, and vitiligo. Those are the newer projects that are ongoing at this time. The Global Psoriasis Atlas continues to go on. In fact, they are going to have a site visit very soon at the end of the year to India.
Coming back to the Global Report on HS, this is, as I mentioned, one of the newer projects that we have, and the Global Report is specifically to look at 1.) the incidence of HS but number 2.) also to educate the public, health care workers, health care providers, as well as policymakers, including the WHO, on the importance of this devastating disease. As clinicians, all of us know about HS being a very severe, disfiguring disease, because of the drainage that can occur in multiple sites. It is affecting very significantly the quality of life as well as the psychological well being of the patients.
Fortunately, in the past few years, there have been very significant research and significant advancements on the treatment and management of HS, as well as the formations of multiple patient support groups to help the patients cope with particular this particular disease. This report highlights that. There are research going on there. However, there is still a lot of education that needs to be done for all the segments that I have mentioned about. Importantly, also the policymakers and WHO, so that people would recognize that this is a devastating disease that requires to have resources put in in terms of research, but also in terms of management so that the patient can have access to the appropriate treatment and the appropriate medication.
Dermatology Times: What were the key findings of the report, as well as gaps/areas for improvement identified?
Lim: The important part is that the report highlights the psychological and disability burden of the patients. The need, in terms of the gap, is that the need for education for health care providers, policymakers, as well as the general public about this disease, so that people would understand the disease more, policymakers will be able to provide resources to manage these diseases, to treat diseases, so the patient would have access to medication. The report also highlights how much we have advanced in terms of our understanding of HS, how much research, how much new treatments, how much new medication, now available for the treatment of HS. Definitely a significant improvement compared to, say, 10-15 years ago. The encouraging part is that in the US, for example, there are a lot of interest on HS and a lot of government fundings that has gone into HS, which is very encouraging for those of us who work with the particular disease. This is true also in Europe; compared to a few years ago, for example, there are many more HS-focused sessions in dermatology meetings around the world.
The important gap is the education, I think to make sure that 1.) the public knows about it, and importantly, the policymakers know about this devastating disease so that they can allocate the appropriate resources to manage these patients.
Dermatology Times: How do you hope clinicians can use the report’s insights to improve patient outcomes?
Lim: I think multiple ways. One is that for those who may not be as familiar with HS, because HS is a devastating disease, but it’s a disease that’s easy to hide, because the disease site, usually in the armpits, in the groin, under the breasts, for example, so the patients can easily hide it, and the average individual may not know that the patient would have HS. However, it will take them sometimes as much as 1 hour to 2 hours in the morning, just to get dressed, to make sure they put on the appropriate dressing, and so on and so forth. Not all health care providers may be aware about HS. This particular report would bring that to their attention, to increase the sensitivity and the awareness of health care providers around the world, not only in the US, but around the world about this particular disease. Number 2 is to familiarize themselves with the manifestation of HS, so that they know this is how HS would look.
But also as importantly, for them to know that there are treatments for it; if they are not comfortable managing themselves, of course, they can seek experts in the area to help with the patients. That is the part that I think is important for health care providers.
The other part that is important is that by having this report, the health care providers would then be able to speak to the policymakers, would be able to interface and interact with the insurance companies, that would need to approve this type of medications for HS, for them to be able to educate the policymakers, the insurance company, that this is a disease that requires treatment and some of the medication could be quite expensive, but nonetheless, it is needed for these patients in order to help with the suffering.
On the ILDS part, for all these Atlas projects, psoriasis, HS, vitiligo, as well as atopic dermatitis, our intention, and we have been doing this, is to highlight this at the WHO level, because the ILDS is the only dermatological association that has official relations status with WHO. Because of that, we can have direct interaction with the various units in WHO that deal with various dermatological diseases. Our role in the ILDS is to increase the visibility of skin diseases, increase the awareness of skin diseases among the WHO colleagues, so that they know the importance of skin disease. We meet with WHO in person, once a year, and I was there in Geneva in March to meet with the various WHO unit leaders, and it was a very, very productive and positive interaction. Having data collected by these atlases and having the reports published, it gives us another piece of very solid information to be able to enhance the awareness of WHO on the various skin diseases.
Dermatology Times: How might this report inform further HS research or treatment advances?
Lim: I think it’s a very important question. The answer is that our hope is that by having this global report, that it would increase the awareness of the policymakers, especially in terms of putting in resources for research that would inform the industry partners also to put in resources on the research. I must say, industry has been very good nowadays in partnering with us in developing new treatments for HS, because based on our understanding of HS, in terms of what we call the pathophysiology, the mechanism of the disease, there are now quite a bit of targeted therapies that can be used for HS, and industry has been very active in partnering with dermatology community, with the dermatology research community, in developing new management for that. Our hope is that this global report would increase that awareness, would increase that effort even more.
[Transcript has been edited for clarity.]