We just finished Hemophilia Awareness Month, and now are heading towards World Hemophilia Day, April 17. I’d like to focus on a few stories of people with hemophilia who live in developing countries. If you know me at all, you know this is where my greatest passion lies—to help those in need who have little to no access to factor. When you read that a child has died from a tooth extraction, or a bloody nose, or that a promising young man has died riding his motorbike in the congested cities in developing countries, it breaks your heart. Our children in America strive to play sports, and live with no bleeds. The other 75% in the world just want to live… here is one story from the Philippines. We just finished Hemophilia Awareness Month, and now are heading towards World Hemophilia Day, April 17. I’d like to focus on a few stories of people with hemophilia who live in developing countries. If you know me at all, you know this is where my greatest passion lies—to help those in need who have little to no access to factor. When you read that a child has died from a tooth extraction, or a bloody nose, or that a promising young man has died riding his motorbike in the congested cities in developing countries, it breaks your heart. Our children in America strive to play sports, and live with no bleeds. The other 75% in the world just want to live… here is one story from the Philippines.
In 1990 my twin brother Luigi, age one, had a swollen left knee. Our parents had him tested, and he was diagnosed with severe hemophilia A. Because we are twins, I was tested too, and also diagnosed. It was very tough living with hemophilia, especially without access to factor VIII. We just took pain medication when we were in pain. My worst, most painful bleed was in 2008. I was coughing hard for days, and then I felt a small pain in my lower abdomen. Ignoring it, I went to school. There I felt the pain worsen, and I had trouble urinating. It seemed that something was blocked inside me, and my lower abdomen was swelling. I went to the hospital and was confined for seven days. The doctors did an ultrasound and inserted a catheter so I could urinate.
I was told it was good that we rushed to the hospital, as the internal bleeding was worsening and might have been fatal. I was infused with factor VIII for five days. This cost a lot, and we had no money then, so my parents went fully into debt. A year later, Blood Brothers Aid was established by a group of men with hemophilia in Manila. My brother and I were among the first board members!
I was able to finish college, with the assistance of Blood Brothers and Father Don Kill, who volunteers to help people with hemophilia in the Philippines. Now I’m employed, and I’m still a member of Blood Brothers Aid after nine years. I participate in their activities, including Christmas parties and summer camp. I’ve learned from my past bleeding; the pain I experience now is less severe, and my joint bleeding episodes are fewer. I’m getting infused with factor VIII that is donated to Blood Brothers from Project SHARE, but I take it only when the bleeding and pain are not tolerable. Without Blood Brothers, I would not be able to work. I’m very thankful to Blood Brothers, Father Donald Kill, and Project SHARE!
We were really blessed to have a very special visitor last week: Andrea Trinidad-Echavez from Manila, the Philippines. Andrea has von Willebrand disease, as does her third child, Star. She manages the best she can in a country that buys no factor products. Imagine! We’ve tried to help her when we can through Project SHARE. But at some point, the Philippines must lobby to get legislators to approve a line item for factor.
If anyone can do that, it’s Andrea.
She has a journalism background, and also knows scores of high-level politicians. With her charm, poise, intelligence and fierce determination, I believe the Philippines will eventually join the countries in the developing world that buy factor. It’s possible! I point people to Honduras, one of the poorest in this hemisphere, which buys product.
Andrea and I met in October 2008, when I visited the Philippines. I was so impressed with her skills, and was delighted that she could come and stay with us. It was just cool enough that we could have a fire–her first ever in a fireplace!
Our first stop was a visit to see Wendy Owen at New England Hemophilia Association, for a meeting about NEHA’s successful lobbying strategies. Then back to Georgetown to meet with our staff. Then down the hall to meet with the ladies at Save One Life to discuss how the program is running in the Philippines.
Andrea discovered our puppet Bob, created by Wyeth (now Pfizer). Bob is a teaching puppet, and you can look into his joints to see a bleed, or check out his port. She loved it and wanted to bring it home to use with the kids.
The next day, Andrea and I were up early to fly to New York City, her first time there! Bob garnered many stares as we sat on the plane, then took the tram through JFK! One passenger walked up and said, “Wassup!” to Bob, who of course didn’t answer!
I took a rental and we drove through NYC to New Jersey, for a visit with Octapharma. We were both interested in this meeting as Octapharma just this year had “wilate,” their plasma-derived VWD product approved. We met with sales reps and executives. Then on to our hotel.
On Thursday we met with the global staff at Bayer Healthcare in Wayne, to speak about factor donations and other projects we have. After that, Andrea took a car to meet with NHF CEO Val Bias, at a restaurant. I had a bad feeling about being in a rental, in NJ, and needing to get to JFK at rush hour on a cloudy day. Sure enough, if you followed the headlines, a tornado blasted through Queens, only about 15 minutes before I arrived. I was on the Van Wyck expressway when it tore through. It was amazingly powerful. When I passed by this over turned tractor-trailer (one of three, all in the same place!) the entire expressway looked like an angry giant had rampaged through it and lopped off the tops of trees, stripped branches completely off trees and crushed cars. Glass, branches, cars.. what a mess! I didn’t get home till 5 am. (Photo: With Cindy North of Bayer)
Andrea is bound to learn a lot from some very experienced people like Wendy and Val, and made some great contacts at the companies. We are committed to helping the Philippines improve its health care for hemophilia, but the only way it can be done it by lobbying the government. Andrea and her team now have what they need to get started.
You can read more about Andrea at her blog: www.fortheloveofstar.com
Great Book I Just Read Great Expectations by Charles Dickens
I am ashamed to admit that this is the first Dickens book I have ever read. This is a classic: the story of Pip, an orphan, who lives a difficult life but who one day receives a fortune, from an unknown benefactor, to make him a “gentleman.” Pip is rich, but the humble boy becomes spoiled and vain, and turns his back on those who loved him most. The story shows how our values can change when he suddenly occupies a different station in life. Eventually he learns great lessons of life through strife, evil in others, and heartbreak; every character in this book seems to mature and grow in relation to one another. It’s a great story with timeless characters but it’s the writing–the writing is pure ecstasy, like ingesting literary Godiva’s every other page. I am weighted with words now, beautiful images, witty lines, twists of phrases. I didn’t know writing could be so mesmerizing and purely pleasurable. Four stars!
Time to wrap up this amazing trip. On Sunday, October 19, we were still in Dumaguete, a small town on the island of Negros. Today was our day to visit patients in their home, always the highlight of my trips. The weather was brilliantly sunny, blue skies and 100% humidity. The ride was brief, as the patients we visited were close by. First was the home of Raynold Bilandal, two years old, factor VIII deficient. A chubby, well cared for child, he lives in poverty materially, but in love richly. Their house sits back a bit from a main road; it’s open and airy, with no screens to filter out mosquitoes. They own little: simple beds, a table, a cassette player for the treasured music Filipinos love, a pet parakeet. This is a family with many members who have hemophilia: brothers, uncles, and many children who have already died. We enjoyed our visit very much, and took photos for Raynold’s sponsor, Joe Cardoza, son of Save One Life’s executive director.
Our next home was in Tanjay City, a small village, to see three patients who are enrolled in Save One Life: Carymar, Reymark and Jhon. We waked through the village, garnering stares from the villagers, and soon a following behind us as the children whispered about the foreigners in their midst. We saw a man getting a shave in the open air by his neighbor, chickens and roosters scuttling about, washing being hung to dry and water being pumped from a well. The ground was thick with mud so we stayed close to the stones that formed a walkway; I noticed deeply embedded coral in the ground, wondering if this was once an ocean floor? First we came to Jhon’s house, with its bamboo walls, thatched roof, and mud floor entrance. Jhon is doing fairly well, and is being raised by his grandmother, a spry elder woman (seen being interviewed in the photo by Andrea Trinidad-Echavez). As we spoke with Jhon, the crowd swelled; some were family members, and others were neighbors. Jhon attends school, and uses Save One Life funds to get medical treatment.
Next door practically is his cousin Carymar. Several family members live in his house. They have the basics: beds, kitchen, a TV. But they are very poor. This was a special day: Carymar’s 19th birthday! We sang happy birthday to him as we interviewed his family about how they are doing with the Save One Life program. They are all deeply appreciative of the help.
After the visits, we decided to go to the local cemetery, to seek out the graves of Jeffrey’s four brothers. If you recall, Jeffrey is a 21-year-old from Manila we met, who is in college studying psychology. He wants to be a therapist for the young men with hemophilia in the Philippines. His ambition derives from the pain he experienced losing four of his brothers to hemophilia. He himself rarely is able to afford to travel all the way to Dumaguete to see the graves. We promised him we’d find them and then email the photos.
Easier said than done. The graves are above ground mostly, a la New Orleans, and stacked, creating a maze of graves and tombs that are not registered in any fashion. We had to walk for over an hour in about 95-degree heat to find them. The cemetery was not maintained and so vines and plants covered the tombstones and markers. We walked along, reading the names: Torres, Ramirez, Rodriquez. No luck. Three young boys followed us, and soon we paid them to start clearing away the undergrowth to read the graves and find the ones we wanted. Finally, we located them. We called Jeffrey who was really touched at our persistence. We paused a moment in prayer, to acknowledge the suffering these graves represent: hemophilia boys and men who will never complete their lives, who died only from lack of affordable treatment. For while there is rarely factor to purchase, even FFP and cryo is too expensive for most Filipinos to afford. Early death is a constant here.
As we left, we had one humorous moment when we spied three goats, tied up in the broiling sun to three graves, left for the day by the owners to nibble away the grass. Third World lawnmowers.
On Monday, October 20, we headed out by Ocean Jet (2.5 hours), and then by car (3.5 hours) to Ozamiz City, on the large island of Mindanao. We were deep into Philippine countryside now, and I was constantly started at. Not many westerners make it down here, I gather. The scenery is gorgeous: rice fields carpeting the landscape, hemmed in by towering mountains. The sky is most dramatic here: from the Ocean Jet, the clouds roiled up like white cotton dolphins leaping out of the liquid blue. Water buffaloes plod in rich mud, their hoofs sucking with each step as they plough.
On Tuesday I awoke with a startling surprise: 27 bug bites on my face. My eyes were half closed in reaction, my skin covered in welts. Just lovely. Apparently I had accidentally left the screen door open all night in the bathroom, and the mosquitoes had a midnight buffet. I was a bit worried as malaria and dengue fever are widespread here, but so far so good.
Despite my appearance, Tuesday was the climax of the trip for me, because I visited my child, whom I sponsor. Kent Tan is a darling boy, living in a rural community, some two and a half hours from Ozamiz City. His parents were so grateful for our efforts to visit. He lives in a small but clean home with his parents, and brother Karl, sponsored by my friend Kyle Callahan (who also has hemophilia). Karl as just getting over a leg bleed, with factor we had donated. Both boys look in great shape! His mother, Hydeeh, stays home with both boys. The father Juderick, only earns $100 a month, not enough to pay for medical treatment for two boys with hemophilia. The use their Save One Life money as a savings account, in case of medical emergency. Kyle and I give them $40 a month combined, which is an additional 40% of their monthly income. You can see how well Save One Life helps! The parents are very smart about how to use their finds. When I aksed them what else I could do for them, they very humbly declined to ask for anything more, counting their blessings.
I have so much more to write about this amazing trip, but the hour is late and I have severe jet lag. And a busy week coming up! If you’d like to read in depth about the trip, please go to the Save One Life website, where we will post our newsletter OneVoice, in a few weeks. The November issue will feature the trip, and will have more photos. Also, I will post photos from the trip as soon as I complete labeling them, in about a week.
Our trip took us to six cities in 12 days, by car, speedboat, ferry and airplane. I’ve logged in hours by each, seeing the tropical countryside, quaint villages, busy hospitals, magnificent churches, and homes of the poor. Father Don has been an excellent host and traveling partner, displaying deep compassion but logical analysis and a desire to improve the lives of those with hemophilia, a mission that goes above and beyond whatever job description he has as a Columban priest. I was privileged to visit the home he maintains in Ozamiz City, where he houses 26 teens from impoverished backgrounds, who are now attending high school or college, and who will all have a promising future. Hemophilia is “just” a moonlighting mission for the indefatigable Father Don! God bless him for that: these patients need every angel they can.
This has been one of the most amazing trips I have ever taken, from the sheer beauty of the Philippines, to the devastating poverty and suffering that stalks each hemophilia patient like a predator, waiting to pick off unlucky victims. I don’t know why, but I have never seen such wide scale effects of untreated hemophilia: joint crippling, pseudotumors, intracranial bleeds, loss of life and amputations. The Philippines is in dire need of help. One way to help is to support individual patients so they can have the funding needed to get to the hospital, or to buy cryo of FFP, or even factor. Please consider supporting a person with hemophilia from the Philippines. We will enroll all the new patients we have met. Just $20 a month can change their lives! I know they have forever changed mine.
Salamat (thanks) to Father Don Kill, the Columban MIssions for housing me in the Philippines, to HAPLOS, to the dedicated physicians we met, and to our skilled and patient driver Honorato!
The Philippines is a large country in the South Pacific, made up of more than 7,000 islands. After enduring 400 years of Spanish rule, and then used as a strategic base by the US during World War II, it has thrown off the yoke of colonialism and struggles as an independent developing country. I am here in Manila until Thursday; so far I’ve seen almost nothing of Manila, due to our heavy schedule, but I have seen devastating amounts of what hemophilia can do when there is no treatment.
The government does not buy factor, despite years of dedicated negotiations by the World Federation of Hemophilia. There are drug distributors here who are licensed to sell some products (NovoSeven, Koate DVI among them) but only the wealthy few with hemophilia can afford them. Even poor patients must pay for basic things like syringes, needles and even band-aids. Life is very hard for the majority of hemophilia patients, and almost every one I meet has some major deformity, trauma or has had a family member die from untreated bleeding.
On Monday we met first thing with a group of reporters representing various national newspapers and magazines. At the invitation of Andrea Trinidad-Echavez, a mother with von Willebrand disease, and media expert, these reporters listened to my presentation of hemophilia, and its symptoms, treatment and effects, followed by extremely emotional testimonials from the patients who attended. One was Angelo Cuevas, 27, who suffered a huge psuedotumor on his hip. He related his story of trying to find treatment, of not being able to afford an operation due to the high cost of factor and the large amount he needed. When he recounted what the pain was like, you could have heard a pin drop. Angelo stammered, bit his lip, and tried to go on. He was flooded with emotions remembering the pain: “It was as if I was going mad. I screamed with pain and my neighbors were scared,” he said in his soft voice. I am not sure many of us know what level of pain that is. I looked around the room as Angelo spoke and saw amputations, twisted hands, feet that cannot be flexed flat, missing eyes, bandages, crutches; so much pain was represented here.
The reporters stayed for 90 minutes and were genuinely moved by what they heard: how could a human not be?
We spent the afternoon then meeting with members of HAPLOS, which stands for Hemophilia Association of the Philippines for Love and Service. Haplos also means “human touch” roughly translated from the local language. This is headed by Rey Sarmenta, the father of a grown man with hemophilia. Rey worked in commercial business for over 30 years, and is educated, well connected and deeply compassionate. He could have retired many years ago to spend each day resting in comfort, but instead has dedicated himself to helping others like his son. HAPLOS is in excellent standing with the WFH, and struggles to help so many while operating with so little. Like in most developing countries, it’s almost impossible to get the government to pay attention to the needs of those with bleeding disorders when there are economic, political, climate and epidemic issues to confront.
We relaxed that evening at the Columban missionary compound we are visiting, guests of Father Don Kill. Father Don has been our main contact here for about five years. Also compassionate and dedicated, he operates a home for teens in Mindanao, in the south. He met a teen with hemophilia one day, took him in, and has been a champion of people with hemophilia ever since. He has turned to us for factor time and again, and his expert ability to organize and follow through has enabled us to get so much factor to the Philippines that this country represents 23% of all our factor donations, making the Philippines our largest recipient of aid.
On Tuesday, October 14, we met first thing in the morning with the patients again, without HAPLOS, to hear their opinions and record their needs. Filipinos are often characterized by their gentleness, and like many Asian people, avoid public confrontation and frown upon outspokenness. How different that is from the America culture, where speaking your mind in public is not only a privilege, but is considered a right (and good entertainment). Allowing patients to speak openly helps them assess their own feelings and needs.
Not surprisingly, the focus was on factor: how to get more, how to share what little is available. Despite the large amounts we have sent, I could see we were only touching the tip of an iceberg! That was momentarily disturbing, because if the Philippines is our largest recipient and we are only serving the needs of a few, but I can’t afford to think like that. What must do whatever we can do.
One mother told how her son had an intracranial bleed and almost died, but was saved with a donation of factor. A man named Elmer told us how he made history: he was the first Filipino patient to have a successful, no complications amputation, with the factor from Project SHARE. (Imagine thinking of how lucky you are to have a successful amputation!) He was very grateful.
Most touching was Jeffrey, a young man with an expression too old for his years. He was accompanied by his mother, who specializes in alternative therapies like massage. Jeffrey is one of five brothers, all with hemophilia. Four have died. Four. With ancient pain in her eyes, the mother told us how each had died: one from an intracranial bleed, one form a motor accident, one from an operation… Jeffrey looked away, his face becoming blank as she spoke. Clearly, Jeffrey was all she had left, and she was desperate to ensure he would live. He is a university student with impeccable English, but they are not wealthy. Without money, Jeffrey could not pay his tuition bill, and his grades would not be released. Without grades, he cannot enroll in next semester’s session. They were not asking for help but only highlighting the difficulties of life here.
How much does his education cost for one semester? $200. I told him we could cover that and we’d find a sponsor for next year. (If anyone reading would like to sponsor Jeffrey, we have enrolled him in Save One Life; just email me and let me know) Jeffrey is studying to be a psychologist and wants to dedicate his career to helping the patients with hemophilia in the Philippines. With all that he has suffered personally, he has turned his pain into a mission. It’s inspiring to see how resilient the human spirit is!
After this meeting we stepped out into the steamy, tropic air and drove through Manila to attend a luncheon meeting by HAPLOS at a Christian center. Lunch was a simple KFC style box lunch and the presentation highlighted HAPLOS’ accomplishments through the years. There is a strong focus on compassion and community. Most of all, HAPLOS stresses psychological support, more than any other country I have visited. “Without factor, sometimes it’s all we can focus on,” one board member said. The board is composed of mostly parents and patients, all volunteers.
A gathering of patients took place after the presentation, and these were all different patients than the ones we had met with that morning. The need, the pain, the suffering…I have never felt so helpless in all my life. While person after person stood and thanked Project SHARE for the factor that helped with a surgery, with a dark time, with a head bleed, with a life saved, I realized that so much more work needs to be done to find a way to close the gap between the haves and have-nots. One young, delicate mother, Olive, stood and told us her 12 year old, factor IX deficient son had been hospitalized for a week with a head bleed, and she broke down crying as she asked for help. A man with an obvious eye trauma stood and said he could not afford to have surgery for his eye; Father Don stepped in and informed him of how to apply for factor through Project SHARE. Another weeping young mother came forward holding her three year old son, whose elbow was swollen and hot—an active bleed. While her son was not crying, indeed looked bored, she was shaking and crying uncontrollably. Was she suffering from guilt? Later on we spoke to her and learned she was recently divorced, and has two children with hemophilia, no money, and under great emotional duress. This is where HAPLOS can excel in helping.
The meeting was capped by lunches for everyone, and the great news that we would be enrolling everyone in Save One Life, which would help ease some of their burdens by providing each person with a US sponsor who will give $20 a month (we will need those sponsors son after I return, so please consider helping). Everyone’s eyes lit up at the news, because so many people in attendance earn so little, and deal with pain that we rarely have to face. Can you imagine having your child with hemophilia actively bleeding, in pain, and not being able to do a single thing to stop it or to help?
Some of the patients had traveled three hours to attend this meeting — three hours by bus, in pain, spending precious pesos. We pledged to reimburse everyone for travel expenses, also much appreciated. As we filtered out of the center, I saw how the entire group shuffled out, walking unevenly from such crippled limbs.
Around 4 pm we left to visit a patient in his home. This is always the favorite part of my trips, we get to enter the world of the patients and directly see their needs — the better to help meet them. We passed the impressive business center of town and then drove by shanties teetering on the banks of muddy rivers. Yancy is an 18-year-old who lives on a dark and greasy looking alley. Crowded, noisy, hot, Yancy and his mom share their two-room dwelling with four other siblings and their father. Hard as it is to fathom that, this was a step up for them! They had recently moved there from a squatter’s place, under power lines. Yancy is a second year university student (college starts at age 16 here) and determined to graduate, despite poverty, overcrowding, a bed on a concrete floor, and untreated hemophilia. He is also available for sponsorship now. Any takers? We spent that evening at a gathering at Rey’s home, sampling delicious local cuisine, relaxing with the doctors and patients, and of course, celebrating with karaoke. I managed to avoid having to sing somehow, and we were entertained by Father Don, who likes to sing Elvis, and Mayette, a board member, who has a gorgeous voice. I could see that HAPLOS really is about love and service, and deep faith. The Philippines is 95% Roman Catholic and faith enters into every aspect of life for the common person. Perhaps this faith has sustained them this far on a journey of immense suffering and yet strong community. Mayette ended our wonderful evening by singing the adopted theme song of HAPLOS, “If We Hold On Together.”
The best news was for last: as we were leaving I learned from Dra. Flerida one of the main hematologists, that factor for Olive’s son, the one with a head bleed) had just arrived that afternoon from our office. Her son was going to be fine.