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.
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.
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/
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.
Help sought for 1M Filipino hemophiliacs
By Dona Pazzibugan
Philippine Daily Inquirer
First Posted 23:01:00 10/13/2008
MANILA, Philippines—Seven years ago at age 20, Angelo Cuevas altogether stopped going to school and shut himself from life in their house in Pateros.
He suffers from hemophilia, a rare but debilitating bleeding disorder usually among men that causes painful internal bleeding, severe joint damage, disability and even death when not treated.
Cuevas was diagnosed when he was two, “and since then life has been hard, financially hard.”
Treatment consists of intravenous infusions of a medicine called antihemophilic clotting factor, to stop blood-clotting. It is also very expensive.
In Cuevas’ case, the cost runs up to P15,000 a day since he needed to be infused with at least six vials of the life-saving factor each day. A vial costs P2,500 each.
Just a few years younger than Cuevas, a 21-year old in the United States was diagnosed with hemophilia when he was a baby.
“If you look at my son today, you’ll never know anything was wrong with him. He has a completely normal life because he has access to medicine,” said his mother Laureen Kelley.
The difference in their quality of life is the availability and affordability of the antihemophilic clotting factor, one of the most expensive medicines in the world, according to Kelley.
Kelley founded Project SHARE eight years ago after she saw the condition of hemophilia victims in poor countries which she said “shocked” her.
“I can’t imagine a country where the drug is not available. In the US we have so much medicine,” said Kelley, who is visiting the country.
Cuevas is among the nearly one million Filipinos who suffer from bleeding disorders. Most suffer and die without knowing that their condition is treatable.
Project SHARE estimates that 6,000 to 8,000 Filipinos suffer from hemophilia, but only 1,000 have been diagnosed, leaving most to suffer in unbearable pain.
The more common bleeding disorder known as von Willebrand’s disease (after a Finnish scientist who did the research on the missing blood protein) afflicts an estimated 900,000 Filipinos, both men and women.
But only 28 have been diagnosed since the country’s hospitals do not have the diagnostic capability.
Andrea Trinidad Echavez’s 10-year-old daughter Star has been suffering from profuse nose bleeding since she was three weeks old. She was finally diagnosed with von Willebrand disease when she was seven.
The medicines for hemophilia and von Willebrand disease, which have to be immediately injected when bleeding starts, are not locally available.
Through the Internet, Cuevas was able to contact Project SHARE, which distributes the medicine to developing countries free of charge.
“In the US we were throwing it away if the product expires, if the company changed their product, if they got their product in the wrong size. So we began to capture all the products that nobody wanted,” Kelley said.
Project SHARE’s country coordinator, Fr. Don Killy, who is based in Ozamiz City, helped defray the cost for Cuevas’ right hip operation, which was done in Cebu. The operation cost about P500,000.
When he returned home, Cuevas introduced Killy to other hemophilia patients he earlier met.
Rey Sarmenta, father to 18-year old John Francis who is a hemophiliac, said donations reaching the country through Project SHARE and the World Federation of Hemophilia, have been dwindling because there were less “surplus” medicines available.
“We are finding it hard to get donations,” said Sarmenta, former president of the Hemophiliac Association of the Philippines for Love and Service (Haplos). “There is less excess medicine available because richer nations are buying for their people,” he said.
He said countries used to buy the medicines at need, but lately they have been stocking up. There are an estimated 400,000 hemophilia cases worldwide, of which 75 per cent are in developing countries.
The US is home to about four per cent of diagnosed hemophiliac cases, but they consume about 30 per cent of medicines produced.
Eduardo Lacanlale, 55, a hemophiliac who now heads Haplos said they have long been lobbying before Congress to provide funds to make antihemophiliac clotting factor and other medicine for von Willebrand disease available.
“Hopefully the government can help us,” he said.
Kelley said they have been prioritizing giving medicines to the most urgent cases.
“Our goal in coming to the Philippines is really to try to find better ways to give them medicines. But the long-term goal is to have the ability to produce your own medicines. If Honduras which is a very poor country in the western hemisphere can buy factor, the Philippines can buy factor. It’s just a matter of lobbying,” she said.
It’s Monday in the Philippines and I have landed. I’m visiting for 12 days, to a country that is the single largest recipient of our humanitarian donations of factor. Although we have had contact with the Philippines for years, and have provided aid, I have never visited. This trip will give me an in depth tour of the situation that Filipinos with hemophilia live in. Most are poor, many are crippled. There is not enough factor for everyone, reducing the Filipinos to beggars sometimes. Life can be very hard for them. Several of the teens and young men we have tried to help have died this year.
We provide sponsorship for about 20 children and young men with hemophilia through Save One Life, our sponsorship program. I am hoping to meet most of them, and perhaps enroll some more.
Our guide through this eye-opening trip is Father Don Kill, a Columban priest who is also a shrewd organizer and compassionate humanitarian. We met years ago when Father Don discovered a teen living on the streets who couldn’t walk. In taking the boy to his mission for teens, he discovered the youth had hemophilia. Father Don has since been on a new mission: to find as many boys as possible undiagnosed with hemophilia, and get them the care they need. We are happy to support his efforts when possible.
This trip will take me into clinics in four cities; hemophilia treatment centers; to meetings with the press; meetings with the patients and the patient group, HAPLOS; and best of all, in the very homes of the poor, so we can document their lives and hopefully find help for them when I return to the US. Please check in again in a few days when I hope to have more of our journey posted!