A comprehensive report co-led by pharmaceutical company GSK underscores the need to enhance care for those living with lupus, and to raise awareness about the disease.
The release of the report, titled “A Vision for Lupus,” was timed to World Lupus Day on May 10. Coordinated by the World Lupus Federation (WLF), a coalition of some 250 patient organizations globally, the annual observance aims to draw attention to lupus and the five million individuals affected globally.
The report highlights the gaps and inconsistencies in lupus care, and offers a remedial plan. Produced in collaboration with a global multidisciplinary steering committee, it calls for raising awareness to support early diagnosis, helping patients feel more supported, improving access to expert care, and increasing awareness of ongoing clinical trials.
“There is an important need to address the significant barriers to high-quality care that can still exist for people with lupus,” said a news release statement by David D’Cruz, chair of the report’s steering committee and consultant rheumatologist at Guy’s and St. Thomas’ Hospital in London, England. “By highlighting calls to action, we hope that the ‘A Vision for Lupus’ report will stimulate discussion to drive positive change in three key areas: disease awareness, service delivery and clinical research.”
Conceived last March at a GSK meeting about tackling care barriers in lupus, the 20-page report suggests several short- and long-term methods for reaching the top goals, including enlisting support from celebrities with lupus, encouraging more physicians to become rheumatologists, and educating primary doctors about the importance of clinical trial participation.
“Over the past few years, progress has been made in the management of lupus,” the report concludes. “However, there are still significant challenges and barriers.”
Duane Peters, senior communications strategist at the Lupus Foundation of America and WLF coordinator, said the report is important to World Lupus Day, which was established in 2004. “Lupus can be a devastating autoimmune disease disproportionately impacting women in the prime of their lives, compromising everyday plans, social lives and aspirations for a career and family,” he said.
Alain Cornet, general secretary of Lupus Europe, called the report a key step toward changing the future for lupus patients.
“We hope this report will help as many people as possible get access to specialist and multidisciplinary lupus clinics where they can receive quality care for all aspects of this complex multisystem disease, and where they are encouraged and supported to take part in managing their own disease, whether through therapeutic education or participating in clinical research,” Cornet said.
A global WLF survey released last year found that 51% of respondents were unaware that lupus is a disease, and that 48% over the age of 55 did not know any complications associated with lupus.
This year, World Lupus Day highlighted how emotional support can help patients cope with the disease’s effects, and the need for lupus clinical trial volunteers. Participants were asked to post photos of events using the hashtags #WorldLupusDay and #LupusAwareness. An awareness tool kit —featuring resources such as a symptoms checklist, logos, proclamation templates, and sample media letters — was available for downloading.
Last year’s World Lupus Day events reached more than 92 million people.
Visit this site to read the “A Vision for Lupus” report.