By Randy Beranek Overwhelming evidence shows that racial and ethnic minorities are prone to poorer quality health care than white Americans. As the nation’s population continues to grow and diversify, the health care system will have to change and adjust to meet the needs of an increasingly multicultural patient base. In cases of chronic disease such as psoriasis, the difficulties of treating a condition that needs ongoing and sometimes intensive therapy are compounded by hurdles such as a lack of access to care and limited resources to cover high drug costs.
Psoriasis is less likely among people with skin of color, but that doesn’t mean a life-threatening autoimmune disease isn’t less effective among African Americans, Hispanics/Latinos and Asians/Pacific Islanders. Congress can help improve care for this patient population. On Thursday, the National Psoriasis Foundation is holding a special Congressional briefing on psoriasis and skin of color. The briefing will highlight the unique challenges facing people of color with psoriasis, as well as the unmet needs of the entire psoriatic disease community.
For Dr. Paul Wallace, a Beverly Hills dermatologist with Wallace Medical Group, Inc., the challenges facing people of color with psoriasis are “lack of access, lack of appropriate diagnosis and the lack of resources to get the medication that would work best.” Dr. Amy McMichael, chairman of dermatology at Wake Forest Baptist Medical Center in North Carolina, also counts the lack of medical research on skin of color — which leads to a scarcity of specialists prepared to address the needs of this population — to be another significant challenge.
The lower rate of diagnosis belies the significant emotional, physical and economic toll the disease takes on people of color. Studies suggest that the quality-of-life effect of psoriasis on patients with darker skin types, including African Americans and Hispanics, may be greater than it is in Caucasians. In addition, because psoriasis is often misdiagnosed in people of color, the incidence rate in this patient population may in fact be higher than reported.
Psoriasis causes the skin to crack, itch and bleed. The most common form, plaque psoriasis, can appear as raised red patches covered with a buildup of dead skin cells. But in skin of color, the disease can take on a different appearance, making it more difficult to diagnose. According to McMichael, psoriasis can have a different appearance in different skin types. For instance, in African-American patients, psoriasis can look more violet than red, and the scales can be thicker than they are in fairer skin.
When Jonathan Scott, an NFL player who is African-American, first noticed what turned out to be psoriasis on his skin, he had to wait a year and visit three different doctors before getting a proper diagnosis. “It was like a mystery,” he recalled. “No one could answer it. Doctors couldn’t answer it, until I got to the right doctor.”
McMichael, Wallace and Scott, as well as Rep. Eddie Bernice Johnson, D-Texas, are confirmed speakers at the briefing, which will advocate for solutions to address the challenges facing people of color with psoriasis, including access to care, high drug costs, and a lack of awareness of the impact of psoriasis on this patient population.
One such solution is supporting the Patients’ Access to Treatments Act (HR 1600), which would help improve the lives of underserved members of the psoriatic disease community, and people living with other chronic conditions, by ensuring that all patients have affordable access to their medications. Another solution is funding the Centers for Disease Control and Prevention psoriasis and psoriatic arthritis public health agenda. The agenda was developed thanks to a $1.5 million congressional appropriation in fiscal 2010, but has now exhausted its funding. Appropriating funds to implement this agenda would provide us with a better understanding of all populations affected by these diseases.
Our policymakers have the opportunity to implement solutions that will improve the health of underserved patients throughout the U.S., including those with psoriasis. People of color in the U.S. deserve a health care system that works for them. It’s time we ensure that all patients have access to the quality of care they need.
Randy Beranek is president and CEO of the National Psoriasis Foundation.