A Snowflake Disease
The tricky part here is that MS patients can experience any of 50 symptoms. The intensity of each relapse differs per patient. Also, no two patients will experience the same kind of symptoms per episode—just like well, no two snowflakes are the same. This is why MS is classified as a snowflake disease.
Downside of a Rare Disorder
Because very few Filipinos are diagnosed with MS, there is not much attention given to it, unlike, say, stroke, dengue, or tuberculosis. Not many realize what MS patients are up against:
- Many symptoms, some considered as “too common”. Fatigue, tingling sensation, pain in legs and arms, dizziness, clumsiness—who hasn’t had them at one point in their lives, right? Because there are far too many “ordinary” symptoms, a definitive diagnosis can be tricky. My mom, for example, had to undergo a magnetic resonance imaging (MRI) test, a spinal tap, some blood works to check for some biomarkers, and eye tests, before she was diagnosed with the disorder.
- Absurdly expensive maintenance oral medications. Multiple sclerosis can be debilitating for some. The sad news, though, is that the oral medications that can reduce the relapse rate are not cheap at all. How expensive? Let us just say that the cost of a month’s worth of medicine can equal the salary of a corporate senior manager.
Yeah, that expensive.
- Not many personalities who can speak about their MS experience. Multiple sclerosis is so rare in the country that there are not many who can champion the needs of the silent MS majority.
One of these few Filipinos is actress Alma Moreno, who bravely announced in the early 2000s that she had MS. I commend her for, although unwittingly perhaps, bringing this to the public’s attention.
Beyond this, what we perhaps need now is someone who can stand up for MS in the same way Michael J. Fox spoke extensively about his Parkinson’s Disease (and even created a foundation for Parkinson’s research).
- Underrated in terms of PhilHealth coverage. If health cards exclude multiple sclerosis among the diseases they will cover, who do you often rely on? That’s right: Philhealth. However, since Philhealth adopts a per-case payment, it will only reimburse its member up to a fixed rate regardless of the total hospitalization cost. It has 23 of the most common conditions and procedures in the Philippines for which the fixed rates are based on.
The initial diagnostics for MS may not come cheap, though. One acquaintance who spent P500,000 during a month-long MS hospital confinement was reimbursed P9,000 by PhilHealth. That’s roughly 1.8% of the total expenses.
Guess who shouldered the remaining 98.2% of the cost then? Yup, the patient.