Despite recent progress, disparities in health and health care continue for many chronic conditions, including hidradenitis suppurativa (HS). HS more often affects members of the Black community. Differences in care and access to care can make those disparities worse. For example, one study in the U.S. found it took Black people with HS years longer to get an HS diagnosis, compared to White patients. White patients also got in to see a dermatologist for their HS much sooner. As a result, Black people with HS often have more severe disease before it's treated.
"I've had great care and I've had care that could have been improved," says Jasmine Ivanna Espy, founder and CEO of The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID) based in Detroit, who has HS. "I've also had care that I absolutely don't ever want to have again."
Overcoming HS Disparities
One way to overcome disparities in health care for HS and other conditions is to improve cultural competency among doctors and other health care providers. You can improve your own HS treatment and outlook by learning all you can and looking for a dermatologist who is culturally competent. This means that they're willing to listen to your concerns and meet your needs in ways that fit with your own personal wishes.
Cultural competence is about how we "build rapport with patients and make sure we give them the care not only that they need, but the care that they want, and take their desires for their own health care into consideration when we're practicing shared decision making around their dermatologic care or health care in general," says Haley Naik, MD, a dermatologist and HS specialist at the University of California, San Francisco. "As it relates to HS patients, I think this is really important to consider because HS patients run the gamut. They're a broad spectrum of patients who are as young as adolescents up through older adults. They are largely women, but men are definitely affected by HS. This is a condition that impacts racially and ethnically diverse individuals and a disease that causes disability. So really understanding where patients are coming from – what their needs are, what their functional goals are, and what their goals for their care are – is fundamental to being able to provide that care."
Get to Know Yourself
To advocate for yourself and get the HS care you both need and want, a first step is to know yourself, Espy says. What are your treatment goals? What are your biggest concerns or fears?
Ask yourself whether you really want a dermatologist for your HS who will talk with you compassionately about your experiences. Or would you rather have a dermatologist who will just treat your HS?
"I think that it's important as people of color that we really understand what we desire and seek from the system when we're getting care," Espy says.
Keep a Record
Espy recommends recognizing and documenting your experiences along the way.
"People of color, especially black people and black women, we're very much unheard, unseen," she says. "And this is a community, so I think one of the most powerful things we can do is document what we're going through, and having it as proof, because it helps to hold people accountable and systems accountable. And it helps us to potentially get the care that we deserve."
She recognizes this can be difficult to do. It helps if you have a support system you can bring along with you. Sometimes you may be the only one there. In the moment, you may need to focus on your body and immediate needs. But Espy suggests recording your experiences later.
"I definitely think that keeping record of things can be helpful, even if it's after the fact," she says. "So if you have a moment where something not only disheartening but disempowering has occurred and you can't speak up in that moment, because sometimes we can't, then it's important if you have a moment to record yourself talking about your experience. Write it down in a notebook or talk to somebody about it."
Listening Is Key
Try thinking through your experiences and identifying the kind of care you both want and need going forward. Write down your questions and concerns. Take a friend or family member along with you for support if possible. Naik says she finds it works best when both doctor and patient come to appointments with an open mind and heart.
"For me, that means listening to what patients want and what their concerns are," Naik says. "It means really asking questions to elicit fears, preferences, and concerns. For patients, it's about listening to the full spectrum of treatment options and one's medical experience about what might be helpful and what might not be helpful in managing their disease. I think when both parties come to the conversation with an open mind and a shared goal, it's easier to get on a path. It's not just a decision, but it's a path."
Explore Care Alternatives
If you find that your HS doctor doesn't seem to get where you're coming from or doesn't support your preferences, Naik says it's reasonable to seek another doctor for your care.
"I think it's really important to feel comfortable with the doctor you see for your care for HS or for any condition," Naik says.
By acknowledging when you've had experiences that weren't positive, you'll find it easier to recognize it if it happens again and advocate for yourself in those moments, Espy says. You'll also learn to recognize when a doctor you're seeing is not someone you want to continue with.
"Patients should know that you don't have to stick with a medical professional just because they're a medical professional," Espy says. "If somebody doesn't treat you right, you don't have to see them again. You could definitely go elsewhere, and I know that that's easier said than done in certain situations, but definitely empower yourself to find a different person in your care team if they're not giving you what you need."
Where to Find a Culturally Competent HS Specialist
Naik recommends the HS Foundation to find HS specialists. She says treatment and care for all people with HS is improving as more is known about the disease and how to treat it.
"My bias is that everyone should be practicing culturally competent care," she says. "I think the tension here, as it relates to HS, is that for a long time, there's been very little knowledge about HS. That's changing now. For a long time, doctors were not making timely diagnoses of HS. Patients weren't getting referred to dermatologists. Now that we have new therapies available to treat HS, we're seeing that change a lot."
For now, she still suggests seeing an experienced dermatologist or HS specialist who can help to devise the best treatment path for you based on your concerns, preferences, and available treatments. Once a treatment plan is in place, you may be able to see a community dermatologist you trust closer to home for your continued care.
"It's really important to see a dermatologist to understand what your treatment options are and, if needed, advocate for seeing an HS specialist. I think there are lots of dermatologists in the community who take great care of HS patients, but sometimes HS is really medically complex. Sometimes, seeing an HS expert or somebody who really specializes in this space is important."
Show Sources
Photo Credit: E+/Getty images
SOURCES:
National Prevention Information Network: "Cultural Competence In Health And Human Services."
Journal of the National Medical Association: "Racial disparities of delay in diagnosis and dermatologic care for hidradenitis suppurativa."
Georgetown University Health Policy Institute: "Cultural Competence in Health Care: Is it important for people with chronic conditions?"
Jasmine Ivanna Espy, founder and CEO, The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID).
Haley Naik, MD, dermatologist and hidradenitis suppurativa specialist, University of California, San Francisco.
