Third, rheumatologists “can help by promoting these opportunities among students and residents via medical education and residency program director’s offices,” Dr. Singh says.
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“Fourth, rheumatologists and members of the ACR and other rheumatology organizations can make a case to governments and medical schools for increasing the rheumatology workforce.
“Finally, organizations, such as the ACR and the Foundation, offer grants and initiatives to develop and promote innovative ways of increasing awareness of lupus and other rheumatic diseases.”
Rheumatologists can also encourage their patients to be positive and to maintain hope that treatment will help, Dr. Singh says. This is important because the side effects of lupus treatments are significant. But, he notes, outcomes have been improving over the past 15 years, and it’s important patients know that.
For patients with SLE who are suffering from complications that may seem unrelated to lupus, they and their advocates may need to seek out a rheumatologist to ensure the best care.
“Patients with lupus and their advocates may ask the treating non-rheumatologist physicians if the infection, cardiovascular disease, weight loss, anemia or cancer they may have could be related to lupus and whether contacting their rheumatologist would help their management,” Dr. Singh says.
Because of the increased risk of death among minority women, Dr. Singh adds, “Minority women and their advocates can also cite this study and approach their local county health department to allocate resources to help reduce the high lupus death rate among minority women by hiring an additional rheumatologist or nurses who are trained in lupus care and providing funding for lupus medications.
“Finally, patients and their advocates may contact their representatives in the state or federal government to advocate for the increased funding for lupus research to specifically address the high death rate from lupus in women.”
Kimberly J. Retzlaff is a freelance medical journalist based in Denver.
5 Things You Can Do to Improve the Lupus Outlook
- Educate students and residents about the devastating effects of lupus.
- Take a proactive role to educate primary care physicians in your community, lecturing and presenting case reports at various venues.
- Tell medical students and residents about preceptorship opportunities, and mentor them in clinic situations.
- Get involved in advocacy efforts to ask for lupus research funding; visit the ACR’s Legislative Action Center.
- Ask about ways to get involved in educational efforts via the ACR and other organizations.
- Yen EY, Singh RR. Brief report: Lupus—An unrecognized leading cause of death in young females: A population‐based study using nationwide death certificates, 2000–2015. Arthritis Rheumatol. 2018 Aug;70(8):1251–1255.