10-year-old Raven Pontillo. He survived typhoon Sendong but not hemophilia. :(

They say death comes in threes.  This is what happened recently in our local hemophilia community.  Last month, 10-year-old Raven Louise Pontillo of Cagayan de Oro, succumbed to brain bleed after more than a month of fighting it out.  Raven, along with his family, survived typhoon Sendong (Washi) in 2011.  Unfortunately, hemophilia took him instead.

10-year-old Raven Pontillo. He survived typhoon Sendong but not hemophilia. :(

10-year-old Raven Pontillo. He survived typhoon Sendong but not hemophilia. :(

On Dec. 3, 24-year-old RJ Bunag of Cavite, passed on after more than a year of suffering.  He developed a psuedo-tumor on his hip due to an inadequately treated iliopsoas bleed. Worst, he also developed inhibitor which further complicated his situation.

And just as we thought two deaths are too much, news came in that 2-year-old Kylle Loquias also of Cagayan de Oro, expired at 11am this morning.

Like Raven, Kylle also had brain bleed.  He was admitted to the ICU but was transferred to a regular ward when his condition got better.  However,  a few days later, his bleed recurred.  By that time, the boy incurred hundreds of thousands in hospital bill and authorities refused to put him back in the ICU unless his parents could pay a “down payment.”  Despite moving heaven and earth, his parents could not produce even a few thousands because of sheer poverty.

Two-year-old Kylle Loquias. (Photo sent by his mom Anjie.)

Two-year-old Kylle Loquias. (Photo sent by his mom Anjie.)

Deaths from hemophilia or any blood-clotting disorder is just so senseless. In this time of medical advances,  people with bleeding disorders should already be able to lead normal lives, or a semblance thereof, with adequate treatment.

Unfortunately for us in the Philippines, as in many other developing countries, access to treatment remains an uphill battle.

Hemophilia is one of the most (if not the most) expensive medical condition to treat.  In the Philippines, one treatment can cost a low of P5,000 to as much as P100,000 depending on the type of bleed. That means for one hospitalization alone, a patient may spend a low of P50,000 up to several millions.

Unlike other medical conditions, hemophilia is life-long and can only be managed.  Bleeds can always will recur.

International humanitarian organizations like Project Share and Save One Life have been helping Filipinos with hemophilia and countless of lives have been saved.  But we need an institutionalized hemophilia care and a sustainable system to address the gaps.

We’ve been lobbying for the passage of a law on hemophilia care but most legislators we approached were indifferent. Of course, since hemophilia is rare, there are only a handful of us and therefore, we don’t have a voting clout.  Our best bet would be increased PhilHealth benefits being worked out by HAPLOS, the national organization.  Even this remains to be a long and tedious hurdle.

The deaths of Raven, RJ and now, baby Kylle, again brings to the fore the kind of governance we have.  On one hand, we have legislators who refuse to pass a law that would give access to treatment to patients.  On the other, these same legislators or their colleagues,  have no qualms about pocketing millions of people’s money.

This is the sad reality we deal in the hemophilia community.  But we will keep on moving for the sake of the future generation.  Someday, deaths from inadequate treatment will be a thing of the past.

But for now, please join me in praying for the families of Raven, RJ and Kylle.  May God surround them with His peace and overwhelming presence in this very difficult time. ##

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About Andrea Echavez

I am an advocate for people with bleeding disorders. My daughter Star and I were diagnosed with von Willebrand's Disease Type 2M.