The World Lupus Federation (WLF) has unveiled its priorities for the next three years. The priorities are 1) raise global awareness of lupus, 2) increase understanding of the worldwide impact of lupus, 3) expand access to care for people with lupus.
Often overshadowed by the physical aspects of lupus, the emotional and psychological burdens of lupus can be equally disabling for people with the chronic autoimmune disease. A survey conducted by GSK in 2016 identified public misconceptions about lupus, such as the belief that lupus is contagious, and as a result, people are reluctant to have close contact with people living with the disease. Such misunderstandings can lead to social isolation and stigmatization of people with lupus, contributing to the emotional damage that lupus can cause.
The WLF is conducting a global survey of people with lupus to identify issues related to the emotional burdens of the disease. Results of the comprehensive survey are to be released on World Lupus Day on May 10.
The Federation plans to undertake several initiatives to bring a greater understanding of the disease not only among the public but also among the medical community and government policymakers. Public awareness campaigns and advocacy outreach to national and international health policy organizations are essential elements of the Federation’s three-year plan.
The WLD strategic objectives were presented during a workshop of lupus group leaders held in conjunction with the 13th International Congress on Lupus in San Francisco on April 5.
The World Lupus Federation estimates that at least five million people have received a diagnosis of lupus but that the actual number likely is higher. The exact number of people with lupus, however, is not known because epidemiological studies in lupus have been limited and inconsistent.