Early diagnosis crucial for lupus treatment
Melanie Cuevas, jewelry designer, first felt the symptoms of lupus at 17. “I was misdiagnosed at first with juvenile rheumatoid arthritis (joint inflammation and pain),” she recalled. “It’s also an autoimmune disease, so it was in the same spectrum. But it wasn’t lupus—not yet.”
Now an advocate with Hope for Lupus, a nonprofit organization that supports patients and raises awareness, Cuevas said her experience was all too common. “Many patients aren’t diagnosed until the disease has already caused significant damage,” she said. “Early diagnosis is crucial, but it’s often delayed because symptoms can be vague and doctors outside rheumatology may not recognize them.”
After her diagnosis, Cuevas was placed on high doses of steroids and immunosuppressants—the standard treatment at the time. With the introduction of newer medications, she eventually gained access to more effective therapies. “But they’re expensive,” she noted. “Not everyone can afford them.”
Living with lupus means learning to cope with unpredictability. “Some days are good. Other days, you wake up exhausted for no clear reason. You learn to listen to your body,” she said.
The disease often requires a team of specialists. “You don’t just have one doctor—you might have a rheumatologist, pulmonologist, ophthalmologist. It’s a lot. And it’s lifelong.”
Lupus is a chronic autoimmune disease in which the immune system attacks the body’s tissues. It can affect the skin, joints, kidneys, brain, heart, and lungs. Symptoms vary widely but often include fatigue, joint pain, rashes, fever, and swelling.
In severe cases, the disease can cause seizures, cognitive dysfunction, infections, and even strokes. Many patients go undiagnosed for months or years, as symptoms mimic other illnesses.
Rheumatology
A rheumatologist is a doctor who specializes in diagnosing and treating autoimmune and inflammatory diseases that affect joints, muscles, and organs—conditions such as lupus, rheumatoid arthritis, and vasculitis.
Dr. Juan Javier Lichauco, a leading rheumatologist in the Philippines, has worked to strengthen the diagnostic and treatment network for autoimmune patients. At a recent forum titled “Understanding Lupus—Patient and Doctor Perspectives,” Dr. Lichauco and experts discussed lupus from clinical, research, and advocacy viewpoints.
“Not all patients present the same way,” said Dr. Auxencio “Chito” Lucero, Philippine Rheumatologist Association (PRA) president. Primary care physicians may struggle to connect seemingly unrelated symptoms such as fatigue, joint pain, or seizures, to one underlying cause. “These cases often require the insight of a rheumatologist,” he said. “But delayed referrals can mean critical time lost before treatment begins.”
To address these gaps, the PRA is training medical students, residents, and general practitioners to better recognize autoimmune diseases. It also raises awareness by participating in forums and partnering with media.
Structurally, PRA is developing clinical practice guidelines tailored to the Philippine context and is working with the Decisions Resource Group to propose expanded PhilHealth benefit packages for rheumatologic conditions. These initiatives aim to make treatment more accessible and standardized, moving lupus care closer to that offered for diseases like cancer.
Marilyn Mana-ay Robles, president of the Lupus Foundation of the Philippines and a lupus patient for over 30 years, was diagnosed in 1995. She cited the emotional, mental, and financial struggles faced by patients, many of whom cannot afford even basic medications such as prednisone, a steroid for the immune system.
Despite these challenges, Robles remains hopeful. She mentioned recent advances, such as improved diagnostic exams and efforts to increase public awareness. “Lupus is a chronic condition, but with the right care and support, you can live a full life,” she said. “Patients deserve compassion and to be told that their lives matter.”
Robelle Mae Tanangunan was a medical student when she was diagnosed with lupus. Today, she is a research associate of the Luisa Project (Lupus Inspired Advocacy and Support for Awareness), a national initiative working to fill the data and care gaps surrounding lupus in the Philippines.
She cites the lack of reliable data as one of the greatest barriers to treatment.
Registry
Efforts to establish a national lupus registry have been hampered by inconsistent reporting and a widespread lack of awareness, even among healthcare providers. Early symptoms such as low-grade fevers and rashes are often misdiagnosed, delaying specialist referrals and leading to more severe complications.
Despite these challenges, the Luisa Project has produced two significant studies. The first explored autoimmune profiles in first-degree relatives of lupus patients. It found that 30 percent of them tested positive for auto-antibodies while remaining asymptomatic, suggesting a strong genetic predisposition to autoimmune diseases. This discovery adds critical insight into familial lupus, which affects entire family lines, including Tanangunan’s own. Her research raises important questions about environmental and biological triggers and reinforces the need to better understand why some predisposed individuals develop the disease while others do not.
A second study, published in the Philippine Journal of Internal Medicine in 2019, focused on the unmet needs of lupus patients. It revealed that over 50 percent suffer from kidney complications, with renal failure being the leading cause of lupus-related deaths in the Philippines. The study also highlighted severe economic inequities: While the majority of patients earn less than P10,000 per month, essential treatments can cost up to P50,000 per injection.
These findings will form the backbone of Tanangunan’s presentation at the upcoming UN high-level meeting on noncommunicable diseases, where she hopes to advocate for stronger policy support and global recognition of lupus as a critical health issue—particularly in underserved countries.
Dr. Cyril Tolosa, medical affairs director of AstraZeneca Philippines, outlined the pharmaceutical company’s commitment to innovating treatment across multiple fields, including immunology, with a particular focus on lupus care. Acknowledging the challenges faced by lupus patients—such as low awareness, limited access to early diagnosis, and fragmented care—Tolosa cited the need to work alongside patients, doctors, and government agencies to address gaps in early diagnosis, education, and treatment access.
“We believe in a whole-of-society approach,” he said. “Our goal is to strengthen healthcare systems and elevate the standard of lupus care across the nation.”
