Chapter contents
I. Introduction
The HS community, including people living with HS, healthcare providers, researchers, and drug company partners, has been working together to help improve care and quality of life for people with HS. The largest survey of HS patients across the world – called the VOICE project – shed light on many unmet needs within the HS community including low disease awareness, late diagnosis of HS, problems accessing providers who know about HS, limited ways of measuring HS, and insufficient options available to treat HS symptoms (e.g., severe pain). However, several efforts are underway to address these unmet needs within the HS community.
II. HS Education and Awareness
Many people still do not know about HS.
For most people with HS symptoms, it takes 7-10 years and more than five healthcare provider visits to receive an HS diagnosis.
It is often difficult for HS patients to find a healthcare provider who knows a lot about HS. A possible solution to this is the development of HS Specialty Clinics with health care providers who are knowledgeable about taking care of HS patients and who work closely with other types of providers such as pain specialists, nutritionists, and wound care providers.
As of January 2023, there are over 50 HS clinics in the United States, but 27 states do not have an HS clinic https://www.hs-foundation.org/hsspecialty clinics). The creation of more HS clinics, especially in areas without them, will be of great benefit.
The Hidradenitis Suppurativa Foundation (HSF) is a non-profit organization with a mission to improve the lives of people affected by HS through research, advocacy, and education.
The HSF website (www.hs-foundation.org) has many resources. There is a section for healthcare providers with published HS treatment guidelines, updates on new research about HS, patient handouts on HS for their offices, and resources for working with insurance companies to obtain HS medications. The HSF website also provides resources for patients, including education about what HS is, the symptoms and causes of HS, treatment options, and explanations of new research results.
To increase education among medical providers, the US and Canadian HSFs have organized an annual scientific Symposium on Hidradenitis Suppurativa Advances (SHSA).
Founded in 2016, this is a meeting that brings together providers from all over the world to share recent research findings and discuss new and better ways of caring for patients with HS. In addition, the HSF has created two new programs to develop the next generation of HS providers: the HS Mentorship Program and the HS Academy (also known as the HS Resident Symposium). The goal of the HS Mentorship Program is to have young doctors work with and learn from HS experts, to be able to become HS experts themselves. The HS Academy is a conference intended to teach young doctors the skills to best care for their patients with HS. In addition to provider education, the HSF also works to educate patients and the community.
The HSF recently started the HS Spotlight, a yearly program that educates patients about HS. The HS Spotlight has several different types of health care providers talk about pain management, mental health, wound care, and overall wellness in the context of living with HS.
Another exciting educational resource is the 2022 publication of a new textbook called A Comprehensive Guide to Hidradenitis Suppurativa to help improve HS patient care by all healthcare providers.
In addition to the HSF, there are several other non-profit organizations that provide support and education to patients.
In the last several years, groups such as Hope for HS, HS Connect, and HS Warriors have been founded, among many others. These HS communities have grown to become one of the most important sources of support and education for patients.
Working together, drug companies, the HSF, and several non-profit support groups have increased HS awareness. Through social media campaigns as well as TV and radio advertisements for medications, we are starting to see a rising awareness of HS in both the medical community and the general public. In addition, over the last several years, HS Awareness Week (the first week in June) has been recognized by increasing numbers of states throughout the US and Canada.
III. Improvements in Patient Care
To improve patient care, the US and Canadian HSFs published the North American HS Management Guidelines in 2019. These guidelines developed by HS experts give providers the tools to evaluate and care for HS patients. The guidelines tell providers how best to determine HS severity, test for other associated conditions (also called comorbidities) and choose the best treatment options for each patient. They include information on medications, procedures, and wound care – all of which are important components of treating HS. Comorbidity screening guidelines for HS were published in 2021 and include recommendations on which associated conditions to look for in HS patients, including joint pains, diabetes, high blood pressure, high cholesterol, and mental health problems. These guidelines are all available on the HSF website. More guidelines are currently being created, including how to best care for people with HS in certain situations (for example, those who are pregnant, have cancer, or have severe heart problems).
Recent research from the COVID-19 HS Registry provides important information on how COVID-19 affects HS patients and interacts with HS medications. Patient registries are an important type of research in which investigators collect data on patients who have a condition, and then follow patients over time to evaluate their disease course and also response to treatments. The COVID-19 HS Registry collected information from HS patients all around the world who developed COVID-19. The registry data showed that the use of biologic therapy was not associated with increased COVID-19 severity in HS patients. This study helped providers give recommendations to HS patients about medication use during the COVID-19 pandemic.
In addition, a recently published consensus paper by a group of HS experts provided recommendations on COVID-19 vaccinations, infection risks, and considerations on medication use during the pandemic.
IV. New Ways to Measure HS
There is a group of patients, physicians and drug company partners who are working together to find new and improved ways of measuring HS and how it affects patients’ lives, called HISTORIC (which stands for HIdradenitis SuppuraTiva cORe outcomes set International Collaboration).
This group is developing new surveys and tools to measure HS symptoms, HS skin changes, HS pain, and the effect of HS on daily life. These tools will be helpful for new HS studies and eventually for clinical care.
V. New Treatment Options
Studies show that almost half of HS patients are dissatisfied with the current treatment options for HS. It is therefore extremely important that we find new treatments for patients. There are currently a number of new drugs being studied in clinical trials for HS that are discussed in detail in Chapter 29. Currently, most of the research on HS happens in North America and Europe. Work is being done to expand HS research to more countries, as well as include more patients of different racial groups in clinical trials.
Other exciting areas of research include that of complementary and alternative medicine (CAM) practices, including acupuncture and cannabidiol (CBD) to help manage HS pain; the impact of diet and weight management on HS; and possible genetic influences on HS. The great increase in HS research has been in part made possible due to increasing government funds for HS studies, specifically from the National Institute of Health (NIH) and Translational Research Grants HSF also gives Danby Research Grants to investigators studying HS. Hopefully, this trend of increasing financial support continues for years to come.
To move other areas of HS research forward, an exciting new project is underway called HS PROGRESS (which stands for Hidradenitis Suppurativa PRospective Observational REgistry and bioSpecimen repository).
HS PROGRESS is a large patient registry collecting information and research samples from HS patients across North America.
The mission of HS PROGRESS is to help HS research through collaboration between patients, health care providers, drug company partners, and researchers in order to improve the lives of people living with HS.
This registry will help increase our understanding of HS, including what causes HS. It will also help to figure out which patients may develop more severe HS and why patients respond differently to various treatments.
VI. The Future
Over the last several years, patients, providers, researchers, and drug companies have been working together to address the unmet needs of people with HS. Much progress has been made, though there is still work that needs to be done. Importantly, several clinical trials are currently underway to find new treatment options for patients. There are exciting new drugs and treatment options being studied, providing hope for the future of HS treatment.