Rare Diseases Must Get More Attention

The State of the Nation with Jessica Soho’s episode which featured myasthenia gravis patients in the Philippines has finally been aired.

As a part of MGSPI (Myasthenia Gravis Support of the Phils., Inc.) and an MG patient, I am very glad that this finally happened. Public awareness is one of the many things our organization has been rooting for, and I personally believe that getting publicized by the traditional media, and I mean television exposure, is an exceptional way of getting public attention, even with theΒ  remarkable influence of the social media. I think this is a great leap for all of us MG patients, as it sparked some hope that finally, something has been done to make people aware and somehow understand our condition.

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The segment was very good – it tackled not only the condition itself, but also, the constant struggle that Filipino MG patients are facing each day. The expensive medical treatments in which we’re stuck for the rest of our lives, the frequent hospital confinements and even the way we are being treated by people who do not understand and do not even have the clue about what’s going on in our body were all being mentioned and somehow reiterated. However, it was disappointing to know that the Department of Health does not seem to have any plans for us at all.

“Ang ginagawan lang namin ng programa ay yung mga sakit or condition, or diseases of public interest. Meaning medyo marami ang mga Pilipino na may ganitong karamdaman.”
(We only do health programs for conditions, or diseases of public interest. Meaning, there are lots of Filipinos are suffering from this kind of disease.)

Well, that’s according to Ms. Paulyn Obial, the DOH undersecretary. I understand that there are a lot of diseases out there that’s more fatal, alarming and could really cause fear among all Filipinos. I didn’t like the way she said this though, because it sounded as if there is NO CHANCE AT ALL that a program for myasthenia gravis patients (either a research program, or maybe lower prices of medicines and medical equipment) is gonna be cooked up by the government. Is it because our condition is rare and we only have like around 160 members who are confirmed MG patients? Isn’t it proper to focus more on the unknown so we know what we’re up against? Besides, these 160 people are Filipinos too – voters and taxpayers. We are not even sure if it’s just 160, because we are getting more membership each day.

Another thing that I find somehow inaccurate is the requirements for the application of PWD ID (Persons with Disability) which were mentioned by a DSWD representative. She said there are only three – barangay clearance, ID picture and medical abstract. What she did forgot to mention is the fact that the patients gets scrutinized from head to toe, with those judging eyes of an officer, and when the officer sees that the patient looks normal (meaning we have both pair of eyes, a pair of arms and legs), then the patient is not qualified for disability. Fact: NOT ALL DISABILITIES ARE VISIBLE. Myasthenia gravis is a condition that affects all the muscles in the body. Therefore, when it’s triggered or exacerbated due to an infection (viral or bacterial), stress, fatigue, or even skipping the meds (because it’s too expensive most of us can no longer afford to buy on some days), the patient won’t be able to do the things that need muscle strength – walking, hair brushing, teeth brushing, sitting on the toilet bowl, chewing, swallowing and even breathing, which can be fatal and can be a cause of death if not medically aided right away. Yet the health officers in most municipalities are still too reluctant to give us that identification which provides us a discount of 20% on medicines that we are going to buy from these giant pharmacies that rake millions every year.

My tone for this blog post is somehow dark, because I am too affected with what’s going on. I do hope that somehow, through this post, the word spreads out, a lot of people gets aware about rare diseases. We are not after the attention – we are after the awareness. And help. A lot of it.

Beth G.

P.S. The video clip of SONA with Jessica Soho which featured myasthenia gravis can be viewed here.

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