The Jakarta Post
Today, May 10, we commemorate World Lupus Day, as we have done for more than a decade. Though commonly known by its nickname, the disease of a thousand faces, one in four people has never heard about Lupus.
According to the Lupus Foundation of America (LFA), the world has at least 5 million people with Lupus (Odapus). In Indonesia, only 6.65 percent of the estimated 200,000 Odapus have been made aware of their predicament.
Accounted for cases have increased by 5 percent each year. Up to 70 percent of sufferers whose cases have been missed will die in 10 years, some will get better and others will continue to suffer.
Lupus is still not considered a major health problem in Indonesia. Until now, efforts concerning active Lupus public programs mainly come from local organizations. The government refraining from acting now could potentially lead to more than Rp 112 million (US$ 8,514.59) in preventable costs from Odapus' productivity losses annually.
Most Odapus are missed due to Lupus' non-specific symptoms and the limitation of diagnostic tools. They suffer at least four years and see three or more doctors before obtaining a correct diagnosis of Lupus.
The state Social Security Management Agency (BPJS) already covers standard diagnostic tests and treatment for Odapus. However, not all health facilities are equipped with laboratory tests, especially antibody antinuclear (ANA) or anti-double stranded DNA (anti-dsDNA) tests.
The government should ensure the availability of these tools, at least in each referral hospital.
The low availability of drugs is another problem. The majority of Odapus first go to the private sector, often seeking care from multiple providers in their journey to access Lupus treatment, such as drug sellers, private practitioners or hospitals. The government also needs to improve drug distribution between the public and private healthcare sectors.
Lupus affects Odapus' self-confidence and independence severely. Many Odapus are at a productive age, but are incapable of working at a maximum due to the illness, and therefore receive less income.
The government's financial support for Odapus can come from another source. The Lupus Inspiration Foundation for Excellence (LIFE) in the US provides Odapus students with an education scholarship program as the award for their splendid academic achievements.
Modifying the treatment and risk factors can only control Odapus' symptoms, not bring about a complete cure. Even so, the process to reach that controlled state takes a long time and treatment commitment from Odapus. Further, the pain, depression, anxiety and sense of isolation together drop their motivation and treatment adherence.
It follows that psychological acceptance and educational interventions are the key to the survival of Odapus.
Auxentia Erythrina Desmisagli of the School of Psychology at Semarang State University indicates that attention to and acceptance of Odapus starts at home in the family environment. Then, it includes acceptance from friends, acceptance in school or the workplace, and finding quality medical care.
The community and Odapus awareness of Lupus is nearly as bad as ever. Lupus New Zealand holds a monthly gathering that includes Odapus, caregivers, health professionals and general audiences. Through this activity, each sufferer can effectively communicate and maintain their information flow about Lupus.
The Indonesia Lupus Foundation (YLI) and Syamsi Dhuha Foundation (SDF) have initiated similar projects in some schools and local communities. Coordinating with the government to expand and deliver them routinely should now be implemented.
Despite having severe social and economic issues, the majority of Odapus are still neglected. The government needs to refocus on its Odapus program, development partners and invigorated agenda for Lupus, continuing community education.
With boosted action and increased investment, all citizens will have adequate support to live and succeed.
Novita Gemalasari Liman is a physician in Barru, South Sulawesi, and a research associate at the Suharlim Foundation. Ronald Ariyanto Wiradirnata is a physician in Maros, South Sulawesi.