Hemophilia in the Philippines

Gap? Try Chasm

When you prepare to hop on or jump off the “tube” in London, the underground train’s speaker system says in a very sexy voice (aren’t all British accents so), “Mind the gap.” The gap is that space in-between the platform and the train, so yes, you’d better mind the gap or else. Stuck in there and you could lose your leg or life.

Closing the gap was the theme of this year’s World Hemophilia Day, celebrated April 17 all over the world. Mostly it’s a way to unify our diverse and dispersed community, and also to raise public awareness. My favorite activity this day to date was last year, when Romanians turned the major fountain in Bucharest red with food dye, representing blood. And all over the world you see posters of kids with swollen joints, and things like that.

Here’s my poster representing the gap: real life Kirby, age 10, from the Philippines. This poor child languished in a hospital bed in a far off province, with gangrene in his leg just two years ago. Doctors didn’t even know he had hemophilia. Only when he was accidentally discovered by Andrea, one of our colleagues there, did anyone suspect he had hemophilia. Project SHARE sent factor VIII and he had his leg amputated. And that’s the good news.

He looked healthier post-op, and he survived. He was enrolled in the hemophilia society. But yesterday I received an urgent request from his doctor: Kirby’s leg is infected again. Send more product, 100,000 IU so we can amputate. Again.

Kirby, or rather his leg, is stuck in the gap. No products available in the Philippines. Hard to imagine: we had a military base there. People speak English there. The Philippines has been our ally for decades, a springboard that buffered us from military threats from the east. But they have never qualified for our medical care.

And the Philippine hemophilia communities are not yet lobbying their government for their right to get factor. What will it take? Boys with hemophilia are dying every month in the Philippines. How many boys must die before they realize they’ve got a huge problem and are willing to do something consistently about it?

And we don’t have 100,000 IU. Where are we going to get 100,000 IU from?

The gap at this point looks like a chasm. Kirby could very well die without the factor to amputate again. Andrea wrote to me tonight in fact, and told me about an upcoming meeting this month that will put the issue on the table. Enough is enough: you can only close the gap when patients come together, decide they have a right to factor, and then present this to the government, and keep on pressing it.

Russia did it. Brazil did it. India did it. Even little (and poor) Honduras did it. The Philippines can do it too, if they want to.

But it may not be in time for Kirby. When I think of Kirby’s case, I don’t think of closing the gap, it’s more like Touching the Void, a chasm cut into a mountain that divides the haves from the have-nots. And even if we donate all 100,000 IU by some miracle, there are more Kirby’s. There are only three ways to close the gap: lobby, lobby, and lobby.

(Anyone with any factor VIII that is unwanted or unused for medical reasons, please ship to us ASAP)

Great Book I Just Read

The Time Machine by H.G. Wells (Kindle)
This science fiction classic is timeless, no pun intended, and available for free on Kindle. Wells indeed is the father of Science Fiction, and created the genre with this, his first novel. A Victorian man, only referred to as the Time Traveler, invites his scientific and literary colleagues to dinner at his home, but arrives himself late and disheveled. He shares his bizarre and fabulous story: he has built a machine that allows time travel. He went into the future, the year 802701, to what he first thinks is Utopia–no one worries, no one works, everything is shared, people seem at peace. But not so: mankind, rather than reaping all the benefits of accumulated scientific knowledge, has become two races, the Eloi, gentle, child-like simpletons that have no culture, reading or seeming purpose, and the Morlocks, hairy, snarling, subterranean ape-like creatures that actually work machinery and harvest and cannibalize the Eloi. Wells, through carefully crafted and beautifully scripted prose, weaves an amazing story about mankind’s future, and the perils of advanced civilizations and communism. Wells’ sci-fi is a vehicle for his critique on social systems. A fantastic book by a literary genius. Five/five stars.

From the Philippines to New Jersey

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!

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.

Philippine Journal: 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!

Philippine Journal: 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.


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