Only less than two weeks ago, last 17 April, was the 29th World Hemophilia Day (WHD). It is an international day of observance of which not many people seem to be aware. I am one person who may have a better understanding of bleeding disorders, a unique yet quietly widespread human malady only because my dear friend, Andrea Hernandez Trinidad, president of Hemophilila Advocates-Philippines, is internationally-recognized as the face of hemophilia in the Philippines.
I met Andrea in the early years of the new millennium. A former newspaperwoman whose stories appeared on page one of a top daily, she shifted to public relations and, not unexpectedly, was very warm and friendly. It turned out it was not for convenience and business purposes that she had a ready smile. This was one lady, I soon realized, who was sincere in her dealings with others and whose friendliness is not dictated by the so-called exigencies of her profession.
Andrea, from day one of our friendship, had been one socially-confident, articulate and smart gal who dressed up properly (her style could be powerful at one time, sporty the next, or glamorous when the occasion called for it), laughed with gusto and listened attentively. Ours had been a two-way traffic, although I must say I’ve been more on the receiving end (ha ha ha) because, well, she has so much to give and I just don’t mean the “pasalubong” (gifts from travels) that she showers me with whether she needs me to edit something or not.
Managing bleeding disorders is expensive. But the scarcity of medicines — the factors — is something that truly surprised me. That even if you have the capacity to purchase these medicines, there are times you can’t find enough supply.
Although this may be late for World Hemophilia Day itself, I am focusing on her and her special cause — the promotion of awareness of bleeding disorders so that those who suffer from them would be given suitable and timely support which can be best institutionalized through legislation.
According to the website of the World Federation of Hemophilia (WFH), the organization, this year, “is focusing on reaching out and identifying new members of the bleeding disorders community. The WHD 2019 campaign will feature examples of WFH outreach initiatives such as organizing regional workshops, raising awareness of bleeding through media coverage or training health professionals and collecting data. It will combine these examples with submissions from our community about outreach efforts in their own regions or ideas about what would be helpful for future initiatives.”
Take note of this fact: “The World Federation of Hemophilia is an international non-profit organization dedicated to improving the lives of people with hemophilia (also spelled haemophilia) and other genetic bleeding disorders. It educates hemophiliacs and lobbies for improved medical treatment. Seventy-five percent of people in the world with bleeding disorders do not know it and do not receive care.”
Andrea comes from a family of public servants in the Visayas. Her maternal great grandfather, Jose Lopez-Vito, was a Supreme Court Justice. On the other hand, her paternal great grandfather, Vicente Vergara, was the first Mayor of Guihulngan, a locality in central Negros.
Her own father, Jesus Trinidad, was a long-term councilor and currently, two of her siblings and few cousins hold different positions in government.
Andrea and her five siblings were practically raised by their mother, Sofia, single-handedly, because their father was a martial law detainee in the 1970s and had to leave his family to work elsewhere after his incarceration.
Andrea remembers seeing her mom having bad monthly periods. Many times she would be confined to bed. She recalls, “In 1988, her bleeding became so bad that doctors wanted to run a biopsy on the lump on her uterus. She didn’t survive the supposed simple operation.
“My mother literally bled to death while undergoing biopsy operation simply because the condition was still unknown in the Philippines at that time,” recalls Andrea.
If it was devastating to the whole family, Andrea would later find out that she had inherited the disease. No wonder that as a teenager, she had bleeding disorder.
She also experienced multiple bleeds every time she was pregnant, so all her three children were born prematurely. But it was not until her youngest child, Star, was born that she finally suspected that a bleeding disorder runs in her family.
Star is born
Star was born with bruises all over her body. At three weeks old, she had a nosebleed that prompted her parents to take her to the emergency room.
Andrea told the doctors that her family has a history of bleeding on both sides. A nephew from her father’s side just got diagnosed with severe hemophilia.
“‘No, she can’t have hemophilia. She is a girl,’ the doctors told me,” recounts Andrea.
Star grew up having at least one nosebleed episode every week. On bad days, she would nosebleed daily. Finally, in 2006, Andrea brought Star to Hong Kong. It was there that she and Star were finally diagnosed with a bleeding disorder called Von Willebrand Disease (VWD).
More common than hemophilia
Hemophilia, VWD and other inherited bleeding disorders have similar symptoms — bruising, nosebleeds, gum bleeds, excessive periods, to name a few.
While hemophilia is the most known bleeding disorder, VWD is actually the most common. According to the WFH, VWD affects roughly 1 to 2 percent of the population.
“That was also when I realized that there are very limited resources here for people with bleeding disorders,” Andrea shares.
“Managing bleeding disorders is expensive. But the scarcity of medicines — the factors — is something that truly surprised me. That even if you have the capacity to purchase these medicines, there are times you can’t find enough supply.”
Andrea soon started a blog to share the family’s experiences and in some ways, reach out to people around the world who have the same bleeding disorder. She was surprised by the amount of attention her blog received and the number of people who linked up with her. She then saw an opportunity to learn more about rare bleeding disorders and share with others whatever knowledge she could gather. It opened a whole new world for her.
Founding Hemophilia Advocates
In 2008, Andrea met Laurie Kelley, founder of two humanitarian programs — Save One Life and Project SHARE. Laurie came to the Philippines to do a fact-finding mission to gather data on the situation of persons with hemophilia in the Philippines. She invited Andrea to come along. It was an eye-opener to the very sad situation of Filipinos with bleeding disorders. She vowed to help the community and became a local volunteer for Project SHARE and Save One Life.
In 2011, she was invited to become an ambassador for My Girls Blood, a US-based non profit specifically aimed at raising awareness that women can also be affected with bleeding disorders.
In 2016, Andrea along with four others, founded Hemophilia Advocates-Philippines (HAP). The group’s main goal is to push for government-funded treatment for people affected by bleeding disorders.
“Hemophilia and bleeding disorders are lifelong but manageable. If we have access to treatment, we can lead normal lives,” she says.
But that is not so for most affected Filipinos. Treatment for a simple, non-life-threatening bleed, such as internal bleed in the joints, could cost around P100,000 for a single infusion for an adult.
Through the network Andrea helped to build among donors and beneficiaries, HAP has been able to bridge that gap. International organizations, such as Project SHARE, send medicines to HAP, which in turn, distribute to those who badly need them.
Andrea’s personal advocacy has brought her to different parts of the globe, at her own expense, to link up with other organizations, so she could learn more about it and also seek help for the less privileged Filipinos who also have the bleeding disorder but don’t have the means to get treatment.
“Being an advocate has helped me more,” Andrea says. “Our journey with Von Willebrand Disease is no longer as lonely as it used to be. We now belong to a real community of people who ‘speak the same language.’”
When Facebook introduced the Facebook Group, Andrea started a support group, which then became the HAP, which celebrated its second anniversary recently.
Aside from providing factors, the organization also helps empower patients through scholarships and business opportunities.
Since she started the blog, Andrea worked nonstop with her advocacy. Today, she is busy lobbying for the passage of Senate Bill 1335 or the “Bleeding Disorders Standard of Care Bill,” which seeks to give free treatment for persons with bleeding disorders such as hemophilia, VWD and other inherited bleeding disorders. The bill also seeks the establishment of Hemophilia Treatment Centers across the country.
She also hopes that through the proposed bill, medicines, especially donated factors from overseas, will reach its recipients the soonest possible time.
Andrea and her daughter still occasionally need blood transfusions but she no longer feels helpless unlike before. She is able to live with the disorder while seeking help for others at the same time.
“If I wanted to, I can just focus all my energy on me and my daughter,” she says. “But I believe that I inherited this disorder for a reason. For as long as I can, and for as long as the hemo community needs me, I will continue with my advocacy of helping them.”