While 90% of patients with sarcoidosis — an inflammatory disease in which the immune system overreacts — experience inflammation in their lungs, the condition can also impact the heart, eyes, nervous system, kidneys, bones, joints and skin. And every person with sarcoidosis is affected differently.
“So treating patients with sarcoidosis has to be a team effort,” says Michelle Sharp, a Mary and David Gallo CIM Scholar and co-director of the Johns Hopkins Sarcoidosis Program. Since she joined the Johns Hopkins faculty in 2019, Sharp has led efforts to expand the multidisciplinary approach of the Johns Hopkins Sarcoidosis Program. This strategic approach allows patients with multiple system involvement to receive the coordinated care they need in a timelier manner. She is also leading increased efforts in scientific research, which will one day allow for the development of better treatments for the difficult-to-diagnose condition, which has no known cure.
“By the time patients come to us, many have been suffering with unexplained symptoms for years. And it’s not unusual for them to have seen more than a dozen different specialists without getting an accurate diagnosis,” says Sharp. What’s more, current treatments — primarily steroids, such as prednisone — come with unwelcome side effects, such as weight gain, diabetes and hypertension.
Further complicating the picture: There are significant health disparities associated with sarcoidosis, with worse outcomes associated among lower-income patients, Black individuals compared to White individuals and females compared to males.
“If we’re going to understand the science behind this disease and figure out the best new treatments for our patients, we’re going to need to do it as a team, and that includes working with our patients as partners,” says Sharp.
Listening to Patients
That’s exactly what unfolds now each Friday at noon, when Sharp and a wide-ranging group of Johns Hopkins physician experts — including neurologists Barney Stern and Carlos Pardo–Villamizar, cardiologist Nisha Gilotra, pulmonary hypertension specialist Stephen Mathai, pulmonologist and clinic co-director Edward Chen, and many others — meet to review and coordinate care for the 2,000-plus patients who visit the John Hopkins Sarcoidosis Program for care.
Helping patients navigate visits, which include imaging and blood tests, falls to a dedicated team including medical office and patient coordinator Terri Bennett and nurse practitioners Kayla Nyakinye and Victoria Wotorson.
Sarcoidosis often strikes patients in the prime of their lives, between ages 20 and 40, and the impact can be sudden and devastating. “I had one patient in his 20s suddenly pass out at the beach. The next thing he knew, he was in the hospital being equipped with a pacemaker,” Sharp says. “Other patients develop lung scarring that severely restricts their ability to work.
“While our internal team is important, our external team plays a vital role as well,” says Sharp, speaking of the nine-member Patient Advisory Board she established in 2020, which meets on a quarterly basis. “As we were building our capacity, it was so important to me that we hear from our patients so that we could learn firsthand their needs and the challenges they face,” she says.
“By the time patients come to us, many have been suffering with unexplained symptoms for years. And it’s not unusual for them to have seen more than a dozen different specialists without getting an accurate diagnosis.” – Michelle Sharp
The first initiative of the Patient Advisory Board was to create a Patient Support Group, which now meets the first Monday of every month to provide patients a forum to share their own experiences and connect with others. The Zoom meetings feature an informational talk by a Johns Hopkins sarcoidosis specialist, such as on managing fatigue, followed by breakout room sessions for patients to share experiences and “help patients to realize they are not alone,” she says.
Eliminating Health Inequities
While Sharp stays busy seeing patients, she notes gratefully that her Gallo Scholar funding has made it possible for her to advance work in patient education, an avenue that has personal resonance for her.
“My sister and I are the first in our family to attend college — and I’m the only professional in my family and the only physician,” she says. “I’ve had the opportunity to help navigate the health care system for my family members, and that’s helped me recognize the importance of using language that patients understand.”
She has developed a series of resources for patients to foster shared decision-making in their treatment and, working with members of the Patient Advisory Board, is currently fine-tuning an education series for patients with lower health literacy.
That work builds on research she’s conducted. Sharp co-authored the first observational study of medication adherence in sarcoidosis, which found that participants with better adherence reported better health-related quality of life.
“If we’re going to understand the science behind this disease, and figure out the best new treatments for our patients, we’re going to need to do it as a team, and that includes working with our patients as partners.” – Michelle Sharp
“One of my goals in improving clinical outcomes for patients with sarcoidosis is to eliminate health inequities,” Sharp says. “Moving forward, I would like to understand more fully what factors determine whether or not a patient takes their medications, so that we can put better support systems in place.”
Ultimately, Sharp and her colleagues aim to find a cure for sarcoidosis, or at least develop more targeted therapies with fewer side effects than those currently available.
That research mission is getting a huge boost, Sharp says, with the establishment at Johns Hopkins of a multi-disciplinary Sarcoidosis Registry, which includes a biorepository holding patient data and biological samples.
Sarcoidosis is relatively rare, “but here at Johns Hopkins we have more than 2,000 patients in our program.” she says, “Working together as a team, we are well positioned to solve the mysteries that have remained in sarcoidosis for more than 100 years.”
She adds, “Funding I have received as a Mary and David Gallo CIM Scholar has been instrumental for us to get this up and running.”
Sharp is optimistic that building a program of coordinated care and multidisciplinary research for sarcoidosis will put a cure within reach.
“My dream for our program is to have both sides of the bench — both translational and basic scientists — paired with clinicians from across disciplines and patients, all working together to move our knowledge of this disease forward,” she says. “Our patients deserve answers.”