Lupus patients, advocates, and medical experts gathered Thursday for the observation of World Lupus Day on May 10 to put the spotlight on the challenges of living with the chronic autoimmune disease and call for better healthcare support.
“Our condition’s numbers are not as strong as hypertension, we understand that. But we must emphasize the patient story, and we must also learn and understand that it’s not about the numbers, but the impact of the disease, because a majority of our patients are women who should be contributing to society,” said Dr. Juan Javier Lichauco, past president of the Philippine Rheumatology Association (PRA).
During AstraZeneca’s fireside chat with the theme “Transforming Lupus Care: Partnering for Better Outcomes for Filipinos Living with Lupus,” medical experts revealed that the chronic autoimmune disease affects around five million people worldwide, most of whom are women.
In the Philippines, between 30 and 50 out of every 100,000 people are affected, facing daily struggles due to the condition.
Systemic Lupus Erythematosus (SLE) is the most common form of lupus, accounting for around 70% of cases.
It is a lifelong disease where the immune system attacks healthy tissues, affecting the skin, joints, and vital organs.
“It’s often a mimicker disease, masquerading as other illnesses. By bringing it into the light, we ensure Filipinos living with its daily struggles receive the early attention and treatment they deserve,” Lichauco explained.
Common symptoms include skin rashes, joint pain, and fatigue, but they vary among patients. The disease can also lead to mental health challenges like anxiety and depression.
Diagnosing lupus is difficult due to its diverse symptoms, according to PRA president Dr. Auxencio Lorenz Lucero Jr.
He noted that diagnosis relies on a combination of symptoms, lab tests, and, when necessary, a biopsy.
“The presentation of lupus is very variable. So, not all patients present the same way. There are a lot of possible manifestations in patients with lupus, and sometimes a primary care physician may not be able to correlate the individual manifestations in a patient with lupus,” he lamented.
This is why advocates are also pushing for a national lupus bill to provide government support, including medicine access and disability benefits.
Hope for Lupus board member Melanie Cuevas said such a law could institutionalize support for patients.
“It’s important to really diagnose as early as possible. So hopefully the bill gets passed soon,” she concluded.
On February 9, 2023, Senator Mark Villar filed Senate Bill No. 1858, the Comprehensive Lupus Prevention Act, seeking to establish a national health program to improve lupus prevention, diagnosis, and treatment, while providing necessary funding and support.
The bill is currently pending in the legislative committee.
