Hemophilia in the Philippines

This Not-So-Royal Disease

by Andrea Trinidad-Echavez

This week, I am posting a wonderful article by colleague and friend Andrea, from the Philippines. I was privileged to travel with her for one week. We both met Jeffrey and his mother Rita.

Every year, Rita Rodriguez, 54, would religiously light a candle in the early mornings of All Saints Day in remembrance of her four sons– Noel, Ricky, Materno and Antonio — who died one after the other in a span of two decades.

Cursed, was how people from her hometown of Tanjay in Negros Oriental, thought of Manang Rita. Little did they know that a rare hereditary bleeding disorder called hemophilia was the culprit behind their deaths.

“I would have wanted to go home to Negros to personally visit their graves but life is hard,” said the 54-year-old mother of eight, who has been struggling to keep another son Jeffrey, from falling into the same fate as his older brothers. In between Jeffrey’s confinements, Manang Rita would make ends meet by offering services as masseuse or cleaning houses and doing laundries.

Jeffrey, 25, a psychology student in Adamson University, was diagnosed with hemophilia when he was barely three, following a supposedly minor injury on the head that caused profuse bleeding. By then, two of Jeffrey’s older siblings had already succumbed to strange internal bleeding episodes.

Manang Rita remembered her older brother, Luis Torres, would also profusely bleed from the smallest injuries. But they did not know that hemophilia runs in their family.

Manang Rita’s oldest child Noel died in the early ’60s from an unexplained ailment. He was only three years old. Noel bumped himself while playing. Shortly after, he developed a tumor-like lesion that wouldn’t go away. He died a few days later.

Another son, Ricky, died in the ’70s at the age of 5. He also died of strange bleeding after getting minor injuries from playing.

In both deaths, Manang Rita hardly understood what happened to her boys. She could only grieve over the loss and hoped well for her other children.

But her reprieve from grief ended when in 1989, Materno, then 25, died after days of suffering from severe headache.

“We gave him pain relievers and put ice on his head. But when it refused to go away, we decided to bring him to the hospital,” Manang Rita said in mixed Cebuano and Tagalog. By then, local doctors already knew the name of the strange disorder that plagued the boys in Manang Rita’s family.

“I was told the boys have hemophilia. It was only then that we became aware of the name of the bleeding disorder in our family,” Manang Rita shared, her voice quivering in between.

Doctors gave Materno a blood transfusion to replenish the blood lost in the internal bleeding. He was also given a dose of the expensive Factor 8 concentrates derived from human plasma that would instantaneously stop the bleeding.

But by that time, it was too late to avert Materno’s condition. He died in the hospital.

In 1997, another son, Antonio, complained of severe stomach pains. He urinated blood, causing her mother to be concerned. Unknown to Manang Rita, Antonio, then 26, fell off from a tricycle. Though he did not sustain any open wound, Antonio’s injury caused internal bleeding which lead to his death in less than one week.

“People thought she was cursed because of the deaths of her four sons,” said Rizalina Magalso, a cousin of Manang Rita and herself a mother of 13-year-old Dan Louie, also a hemophiliac.

In 1999, Manang Rita’s youngest son, Jeffrey sustained injuries from a fall and again suffered excessive bleeding. By then, with four sons dying of bleeding, Manang Rita was already on the verge of despair.

“I told the doctors I could no longer bear it if something bad happened to Jeffrey,” said Manang Rita.

The doctors sympathized with her and advised her to bring Jeffrey immediately to Manila and seek help at the Philippine General Hospital.

She sold all her family’s little landholdings if only to save her youngest son and admitted him at the PGH. After several bags of blood transfusion and over a month of stay at the hospital, Jeffrey became well enough.

But the deaths of her four sons led Manang Rita to decide to stay in Manila for good, where Jeffrey has better chances of surviving.

Called the “royal disease,” hemophilia is a hereditary bleeding disorder that affects the males of the family. Mothers are usually the carriers and they pass on the defective genes to their male offspring.

Several members of noble families in Europe were affected by it, thus the monicker “royal disease”. Written accounts identified Queen Victoria as the first royal carrier of the disorder, with her eighth child Leopold, born in 1853 as the first recorded royalty with the disease. Leopold died at the age of 31 from an intra-cerebral hemorrhage after a fall.

Two of Queen Victoria’s own daughters, Alice and Beatrice, were also carriers of hemophilia. The condition was transmitted through them to several royal families in Europe, including Spain and Russia. The most famous affected individual was the son of Tsar Nicholas II of Russia, Tsarevich Alexis, who was born in 1904. There were speculations that the illness led to severe strain within the royal family, and enabled Rasputin to gain influence over the family, ultimately leading to the downfall of the once powerful dynasty.

The WFH estimates that .01 percent of the population or about 1 in 13,000 are affected by hemophilia.

In the Philippines, the Hemophilia Association of the Philippines for Love & Service (HAPLOS) said about 6,000 to 8,000 could be affected by the disorder. However, only a little over 1,000 have been registered. Most of the sufferers come from the same families.

Thanks to modern technology, hemophiliacs like Jeffrey may soon lead normal lives with the availability of factor concentrates that can instantaneously stop bleeding. The medicines, however, are very expensive and are still unaffordable for people like Manang Rita, who barely manages to survive with her meager income as a masseuse.

“Even though life is hard here, we will endure if only for the sake of Jeffrey. I am thankful to God that despite everything, He has helped us survive this ordeal,” said Manang Rita.

Great Book I Just Read
Daughter of the Desert, by Georgina Howard

If I tried to describe Gertrude Bell to you, you might think I was making it up. But this is a true story about one of the world’s most amazing women. Born into a privileged English family in 1868, Gertrude Bell seemed to have been destined to become a daughter of the desert, with her sharp mind and energetic physique, she excelled at whatever she attempted. Her resume would include archaeologist, spy, Arabist, linguist, author, poet, photographer, mountaineer and nation builder. And despite her intrepid nomadic roaming, her warm and intimate letters to home revealed a sensitive, loving woman. She eventually would become perhaps the most famous woman of her time, exploring the deserts of Arabia on her own, learning Arabic, and meeting privately with the Bedouin. She learned more about Arab life and culture than any other westerner. Her skills and knowledge were only surpassed by her passion: she eventually grew to love the desert and the Arab people. The timing was perfect for England. During World War I, when the Ottoman Turks pushed into Arabia, the British needed someone to help bring the Arabs in as allies. Like her friend Lawrence of Arabia, Bell became the British government’s diplomat. She eventually helped win the Arabs to the British side, helped to build the nation of Iraq and was recognized by the Arabs for her dedication and achievements.

Anyone wanting an informed opinion about Iraq currently should read this book. It’s a sobering reality check when you read about the sacrifices made by the British 100 years ago and you think you are actually reading about what has happened in the last six years. It highlights the long history and complex nature of the Arab culture, beautiful and mysterious, and the obstacles in uniting a diverse group of people. Inspiring, informative. A whopping four stars. I can’t wait to read it again.

The Philippines: Day 12

Bilandal Family

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.

See photos of the entire trip here.

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.

Rice paddies

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: Day 9

Though it’s actually Wednesday here now, I am still trying to catch up with my diary. We’ve been on the go nonstop: traveling by boat, car and plane, traversing hundreds of miles, to seek out hemophilia patients in the Philippines.

So far, I arrived in Manila, stayed three days, then went a bit south to Cebu for two days (see previous posts). On Saturday, October 18, we (Andrea Trinidad-Echavez, person with VWD and media expert), Father Don Kill of the Columban Missions here, and I headed out early for a two and a half hour ride to the ferry. We rocketed down coastal roads, catching glimpses of the sea and beaches. Our fearless driver Honorato beeped incessantly to warn people of our deadline to catch the ferry.

The scenery is beautiful: the Philippines, created from volcanic activity, is lush and fertile. Palm trees explode upward into a display of huge leaves and coconuts with a piercing blue sky as backdrop. The weather is sultry and heavy, and the sun scorching. I love it!

The ferry took us and the van across for a 30 minute ride to the island of Negros. The fishing town we disembarked on was alive with activity. We went straight away for a another 30 minute ride to Dumaguete, where we would meet staff from Little Children of the Philippines (LCP), the organization that would become our new partner for Save One Life, Inc.

Everything Father Don has told me these past two years about LCP is true. They are a nonprofit specializing in educating children in all aspects: scholastic, hygiene, livelihood and faith. Many of the staff are themselves graduates, and they are remarkably organized and efficient, yet compassionate.

When we arrived, we walked to a small pavilion, where the families and children with hemophilia waited. Now, it’s one thing to see a child’s face and profile on paper. But to meet them in person? Priceless beyond words. To me they are celebrities, children I have been dying to meet for a long time. Here before me were Allan, Ryan, Joseph, his brother Joshua, Carymar and Reymark. They greeted me with the traditional hello: each child took my hand and touched his forehead to it.

We all were seated so LCP staff could introduce us; Father Don also spoke to the children, all of whom he personally identified in his quest to help those with hemophilia in the Philippines. The children honored us by singing (karaoke is huge here!) and Father Don also knocked off another Elvis song. The parents also got up and together sang a gorgeous song called “Give Thanks,” with spiritual themes. Three mothers than each took the mic, and in tears, thanked Save One Life and Project SHARE for helping their children. Their cries were gut wrenching, and gave only an inkling into the level of the pain they see in their child.

In the midst of this, one boy, Reymar, was not well. He kept his head down by his feet, his shoulder dropped. He was having a severe bleed in his right shoulder. We hurried him to the clinic at LCP, but he needed factor. We had none. So here was a Third World crisis right in front of us: what do you do? He has a major bleed, needs factor, and must settle for cryo or FFP. There is no cryo. FFP costs $30 a bag. He might need 10 bags. His mother sat in despair sobbing while her 15-year-old boy writhed and moaned. It’s not just a matter of going to the hospital to get treatment. She doesn’t have $300. We made a decision then and there to pay for whatever treatment he would get. While they prepared to move him, Andrea knelt down with the family, held their hands and with powerful calm, said a prayer with them.

When they had left, we all felt a bit disconcerted. This was the future of these kids staring them in the face. When they get hurt, what will happen to them? They can see how they cause their mothers so much pain, too. We turned to happier things, like lunch, and then the kids all made incredible thank you cards for their sponsors. I oberserved that Filipinos, in addition to being musically oriented, are extremely creative and artistic. True, agreed the Filipinos present, and they loved to hear that.

We took photos of all the Save One Life boys, and some taped thank you speeches to their individual sponsors: Diane H., Patrick S., Kyle C., Joe C. and John J. of the USA.

Finally we headed out, and LCP agreed to take on all the sponsorship responsibilities in the Dumaguete area as our new partner. Instead of relying on Father Don all the time, we will now use LCP. Father Don, mind you, is busy enough running a home for 26 teens. Like many people, once he met a child with hemophilia five year ago, he could not say no, and has since helped us identify patients and get them treatment. No doubt he has saved lives and much suffering through his actions.

We returned to the hotel a bit amazed at the day. Sobering. It must have worn us out more than we thought: I for one slept 10 straight hours, the first time I have actually been able to sleep since coming here. And I actually felt guilty when I awoke: how many Filipino mothers that night had no sleep because their children cried in pain from untreated bleeds?

The good news the next morning was that Reymar was treated. We purchased Koate DVI, to the tune of $300 for 1,000 IUs for a poor boy. (The pharmacy in this remote place actually stocks it as there is a middle class family in town that pays for it–more on that next time.) There is so much more to be said about the billions made off factor sales, and how little of it will ever come to the majority of people who need it most, who suffer pure agony. I am this week in the rural areas of the Philippines, where life is already harsh, and where children with hemophilia need help every day. Project SHARE donates directly to these children; Save One Life gives them the money to buy FFP or factor or transportation to the clinic. If you can help me to help them, please let us know.

laurie@kelleycom.com
http://www.SaveOneLife.net

The Philippines Journal: Day 7

Friday, October 17: This was the kind of day you simply live for when traveling to developing countries for hemophilia. Now in Cebu, second largest city in the Philippines, Rose Noyes, Father Don Kill, Andrea Trinidad-Echavez (a patient with VWD and mother to a daughter with VWD) and I went to the Perpetual Succor Hospital to meet with the hematology team. But we heard that there was actually a patient admitted to the ward so we went to check it out. There in the overcrowded pediatric department was a one year old baby, Christian, who was bleeding from his head. The mother was breastfeeding him, trying to quiet him. They both looked uncomfortable: She was standing in the middle of a busy hallway; he was wrapped in a bloodied bandage, with an IV stuck in his foot. We spoke with the nurses who told us Christian had fallen last week. He had received fresh frozen plasma (FFP) but the bleeding continued. Feeing helpless and sad, I recalled I happened to have stuck a vial of factor in my purse to show reporters later at our press conference. I took it out and everyone’s eyes lit up. I might as well have taken out a bar of gold!

The nurses at once administered the factor VIII concentrate to the baby. The mother was a little wary of me, but when she learned I also had a son, and that we would enroll her in Save One Life, her face relaxed into an expression of gratitude.

It hits me hard to think that not only do countries like the Philippines not get factor (only the very wealthy will buy it out of pocket), but patients must purchase FFP or cryo! Indigent patients like Christian’s mom go to the public hospital where they received free medical services, but not medical items. All patients must pay for gauze, needles, syringes, bandages, and blood products. A bag of FFP costs about $30 US. This is one half to one month’s salary for a family.

Satisfied with the happy outcome, we then were ushered into a room jam packed with families with hemophilia. These were patients registered with the local hemophilia organization, HAP-C (Hemophilia of the Philippines, Cebu). This is a well run group, and the sheer number of families attending attests to their good rapport with the community and ability to organize. Everyone looked so happy to see us. We had some presentations. A young man named Ed stood up and told us that he won’t let hemophilia stop him from attending college and becoming an employee some day. Another young man, Jurich, also stoop to give a testimonial about how he will not let hemophilia defeat him. Jurich could be a motivational speaker some day!
We then had to excuse ourselves to give some presentations to a large group of residents in the auditorium. I looked up and saw a banner with all our names printed on it to welcome us. We spoke about the importance to learn about hemophilia, to treat the patients at once, to work with HAP-C, and to listen to parents when they tell you, as doctors, something is wrong. Andrea gave an important perspective on VWD, which is largely undiagnosed in the Philippines. Thanks to Andrea, who used to be a reporter with the national newspaper Inquirer, had an interview with the press afterwards. The reporters published their articles the next day, and gave an excellent overview of our meeting and of hemophilia.

After this meeting we returned to the most important people on the face of the earth, the hemophilia families We told them that we were enrolling everyone in Save One Life, our child sponsorship program, and that the money could be used to help pay for school, transportation to the clinic, or FFP or cryo. Father Don stressed that they continue to work with HAP-C, and to be empowered.

See photos of the whole trip here.

You might think how hard it must be to feel empowered when there is no factor, and when a family cannot afford even cryo. But you would be amazed at the resilience we see here. Families come to meetings, even when there is nothing to offer but snacks. Families have hope. I don’t doubt that the pervasive faith I see everywhere on these islands helps not only to cope with hemophilia, but helps them to bond together. As a community, they are strong. But they are in great need. I looked forward to our next leg of the trip, where we would go to more rural communities in the south. We said our good byes to the families, pledging to stay in touch and to offer assistance.

Philippine Journal: Day 5

Our whirlwind fact-finding mission to the Philippines continues. I’ve been to many developing countries in different parts of the world, but the overwhelming things that stand out in the Philippines are these: tremendous compassion for one another. I’ve never seen a community where there is so much obvious love, respect and concern for the hemophilia patients. It’s a remarkable testament to the Filipino culture and their Christian faith. Families care deeply about one another; doctors care deeply for their patients; the hemophilia national organization cares deeply for its members. It shows in every gesture, word, action.

But it’s not enough. I’ve also seen that the Philippines has a noticeably high rate of pseudotumors, premature deaths, joint deformities, and lack of infrastructure. The hospitals are not maintaining adequate patient registries, there is little government lobbying and even after so many years of intervention, still no factor. But there’s hope in uniting this deep compassion with a written strategy and plan for the future.

On Wednesday, October 15, our team — Rose Noyes, Father Don Kill and I — went to visit patients in their homes. First stop was 16-year-old Cil Juner, or “Jun Jun.” (Nicknames are common here). He lives with his parents and two year old sister in a very small apartment in Manila. Small means two rooms which house: their beds (just slats of wood, which convert to seats in the daytime), table, a photography studio, clothes; about 12 x 12. Melody, the mom, runs a studio for portraits. Jun Jun always has a smile and wants to be a photographer someday too. We will enroll him in Save One Life, and hope that his sponsorship money will help him in his career someday. The family is poor, cannot afford factor, and Jun Jun has some arthropathy. It’s difficult for him to climb the many steps to the second floor to get home. But what a lovely family! As they welcomed us like royalty, Melody brought our delicious sweets that she herself had made. Despite their obvious lack of money, they still put visitors first.

After this visit we drove some more in a taxi through the streets of Manila to see Randolph, who is a board member of HAPLOS. His house is in a nice district, and we were happy to see a pretty brick home with a lovely garden in the front. Realty set in when we realized that this was not his house: Randolph and his wife Mel live in a one room apartment off the side of the house. To access it, Randolph, who has severe contractures in his leg joints, must scale a long staircase each day. He climbed the stairs in obvious pain, never once complaining.

Inside, we squeezed together on one seat, while Randolph and Mel introduced us to their 18-year-old son, a tall, healthy looking young man who is in college. He showed us their loft, where he sleeps, directly above the living area. I quickly estimated the size of the dwelling to be about 12 x 12 also, with a higher ceiling to accommodate the loft. Two grown boys sleep in the loft. The parents flatten out the old, cracked vinyl couch, from which foam protrudes, and for a bed at night. Right next to them is the filled propane tank which fuels their cooking fire. Kitchen, living area are one, and the loft is directly above.

Randolph and Mel seem happy, despite the limited living space, limited money and no factor. They are grateful for everything they have. They share with us family photos in a small album, and express their hopes for their son to finish college and get a good career. So many hemophilia families in the developing world focus on education primarily. When you meet a child, you never ask “How old are you?” like we do in the States; you ask, “What class (grade) are you in?”

Soon it was time to move on. We said our good byes to Randolph and his family in the steamy air and set off back to the Columban Missionary house. The taxi pulled up the circular drive, surrounded by lush tropical plants, and Lila, the gorgeous young female boxer who stands guard at the entrance, greeted us. We had the rest of the evening to ourselves, to take notes, review our schedule, and email our families. Dinner is a communal affair, usually shared with visiting missionaries or with those who are posted in the city from many other countries. It’s a nice chance to dine with an Aussie, Fijian, or Irishman!

Read here for an article in the Manila press about our visit: http://netmail.verizon.net/webmail/driver?nimlet=deggetemail&fn=INBOX&page=3°Mid=21984&folderSelected=INBOX

On Thursday, October 16, we started our morning by visiting the government hospital, Philippines General Hospital (PGH). This hospital is free for patients, though patients still often must purchase everything related to medical care, from cotton balls to band aids to stitches for their own operations. It’s a large hospital, and the open corridors have a flurry of people walking quickly from place to place: doctors, patients, maintenance workers, surrounded by the ever present tropical plants and sunshine. Our entourage gets a lot of stares as we are obviously visitors, and there are not many visitors to the Philippines; at least, not to the hospital.

En route to our meeting, we scoped out Ronald, an adult admitted just a few days before with a bleed. It took a while to find him, as there is no computerized record for admissions–you have to flip through a big ledger book and ask directions a lot–but there he was, sitting up in bed, IV in hand for FFP, and a big smile on his face. Though happy to see him, we saw he was in the ER, a ward ringed with beds filled with patients in distress. He was flanked in either side by two men who were on respirators, meaning hand respirators. Life and death coexist intimately, daily and abundantly in the developing world.

We had a productive meeting with the hematology department; they’ve received factor from Project SHARE in the past and we answered their questions about future donations. Dra. Benitez gave a PowerPoint presentation about hemophilia treatment at the hospital. I was amazed to learn that in a city of 12 million, from 2003 to 2008 there were only 46 cases of hemophilia A admissions and only 5 hemophilia B! It seemed impossible. This is the hospital where the poor come when they need treatment. And then we realized that admissions includes repeats. In other words, hardly anyone comes to the hospital for treatment.

And the reasons they come? Nosebleeds. Tooth extractions. Dental bleeding. Very visible bleeds. Yes, patients do come for joint bleeds and GI bleeds, but I was really amazed to see the emphasis on gum and nose bleeds.

Why so few patients to the PGH?

Patients know that if they come, there is no factor. They stop coming, usually until it is too late. There is cryo and FFP, but they must pay for this and at $20 a bag, it’s beyond the reach of many. So they stay home and bleed out. This accounts for the high rate of joint deformities and deaths.

Hemophilia in the Philippines seems to operate in a crisis mode: and when the patient finally gets to the hospital in a crisis, it’s usually too late to fix. There are some success stories, but they are few. At least the hematologists were very engaged with us and eager to change the system. We spoke about funding a refrigerator for factor for the hospital, and trying to keep a steady supply of factor on hand for emergencies, which could be replenished.

Patients are in dire need of education about their condition: especially dental care. Dental bleeds are an easy thing to prevent with proper care!

After our meeting, we shook hands and headed off for Cebu. A 90 minute flight and we were there in this historic city, the beaches on which Magellan lost his life during his voyage to circumnavigate the globe.

Read here for video interview with Laurie in Manila:
http://blogs.inquirer.net/insidescience/2008/10/15/understanding-hemophilia/

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