I am sitting here in my daughter’s hospital room, watching her as she sleeps, pondering on her future and the future of other Filipinos with bleeding disorders like her.
With the election fever high up in the air, I wonder what difference the incoming elected officials will bring to the very sick public health sector.
“Bawal magkasakit” (You can’t get sick) is so real in this country where health care is almost like a luxury, especially for people with rare disorders like hemophilia and bleeding disorders.
Also known as “royal disease,” it is so coined because some members of the royal families were affected by it. Historians attribute the fall of the Russian monarchy to hemophilia. Alexei Nikolaevich, the Czar’s youngest child, inherited the hemophilia gene. He was treated by Rasputin, a wicked faith healer who was rumored to have an affair with Queen Alexandra.
In the Philippines, the term “royal disease” takes on a different meaning. It is considered a “royal disease” because only the “royals” can seemingly afford having it. Hemophilia treatment is very expensive. Minor bleeds can cost a minimum of P30,000 per treatment. This does not include hospitalization and the doctor’s fees. Treatments for major bleeds like brain bleed, gastro-intestinal bleed and others, can run up to millions.
In many countries, people with hemophilia and bleeding disorders receive free factors – the component in our blood that stops bleeding. This is because hemophilia care has been institutionalized. Meaning, their governments have put in place treatments for people with bleeding disorders.
Unfortunately, the Philippines has a long way to go in terms of government support for people like us with rare medical conditions. We are probably among the countries with highest mortality rate for people with hemophilia and bleeding disorders. Post-partum hemorrhage is the No. 2 cause of maternal deaths in the Philippines.
That is why it makes me cringe when I think about how so many people suffer and even die because they do not have money to buy medicines. Yet, every year, according to the World Bank, the government loses roughly P700-billion (40-50% of the budget) to corruption.
It means in the past nine years that the little girl occupied Malacanang, P6.3-trillion (take note TRILLION) worth of government funds have been lost to corrupt government officials including you-know-who.
Last year, while on an official business trip in Cagayan de Oro, I met Kirby, a boy about Star’s age, in a government hospital. He had been confined for a month due to a wound that refuses to heal. His doctor recommended amputation because the infection already reached his bone. But it could not be done unless he was given factors to prevent bleeding. He needed 50,000IUs which cost about P1-million. But Kirby’s parents were poor farmers from a hinterland town. Thankfully, Project Share, a US-based humanitarian organization helping people with bleeding disorders, assisted Kirby. But what if there was no Project Share?
Last year, one of our young emerging leaders, Rex, succumbed to internal bleeding. He had called me up a few days earlier to say he wasn’t feeling well and in fact, could hardly stand-up. I advised him to go to the hospital and have himself transfused. He was adamant at first apparently because he didn’t have money. Even in public hospitals, not everything comes for free. Especially not the factors. Sadly, there were no available factors at that time and his body didn’t respond well to the plasma transfused on him.
Deaths in ill-equipped and cash-strapped government hospitals are very close to home. My own mother died because of lack of facilities in our country. She was diagnosed with Myoma, a growth in the uterus which most women get when they reach 40s-50s. Myoma is usually characterized by bleeding and to stop it, doctors recommend its removal. My mother went through the usual pre-operation tests. Everything was normal. While she knew she was a bleeder, nothing in the routine tests showed a potential problem. And so the operation went on. Doctors successfully removed her Myoma. But as they tried to close up the wound, she continuously bled. She died of excessive bleeding on the operating table, notwithstanding the 10 bags of blood transfused to her.
Being an advocate for hemophilia and bleeding disorders, I’ve met several parents and patients with unimaginable stories of pain and suffering. Some parents literally beg if only to have their children treated.
But sometimes, the social impact of the disorder is even harder. Families break up because parents could not cope with their children’s condition. Some patients, on the other hand, become unnecessary liabilities to the society not because they are sick but because they are ill-equipped to cope with their condition. As for us, the death of our mother when we were very young left us emotionally scarred forever.
As Star peacefully sleeps on her hospital bed, I wonder if those people who have amassed ill-gotten wealth ever sleep as peacefully. They who virtually caused the deaths of people like my mother, or Rex, who were victims of a sick public health system. May God have mercy on us if we do not elect righteous leaders this time. Be far from it, Lord!