Save One Life

Do They Know It’s Christmas?

Laurie Kelley December 15, 2008


With Christmas coming, we always play a long iPod list of holiday songs. Our tastes run from traditional ones, like Bing Crosby’s “White Christmas,” Perry Como’s “O Holy Night” and Johnny Mathis’ “Christmas Song,” to Queen’s “Thank God It’s Christmas,” Elvis’ “Why Can’t Every Day Be Like Christmas?”, Run DMC’s “Christmas in Hollis,” and Sting’s “Gabriel’s Message.” But our favorite is “Do They Know It’s Christmas?” by Band-Aid.

You might recall this was a song written and recorded in 1984 by several top English and Irish recording artists to help raise money for famine relief in Africa. “The record was released on November 29, and went straight to No. 1 in the UK singles chart, outselling all the other records in the chart put together. It became the fastest- selling single of all time in the UK, selling a million copies in the first week alone. It stayed at No. 1 for five weeks, selling over three million copies and becoming easily the biggest-selling single of all time in the UK,” notes Wikepedia. The video can be seen on YouTube.

It’s a timeless song, about the timeless plight many African countries face. I think of it now as we try to help our hemophilia brothers in Zimbabwe, a country collapsing under economic duress. This is a beautiful country, filled with civil and peace-loving people, where literacy rate is 95% and which once served as the breadbasket of Africa. I was there a year ago at this time, and my visit has haunted me ever since.

Now, in addition to the highest inflation rate in the world, and 80% unemployment, it suffers a devastating cholera outbreak. Cholera is a killer; it is transmitted through food and water, and can claim a victim within 24-48 hours through dehydration. If you’ve watched CNN, you will see how the disease has spread. Total U.S. humanitarian assistance to Zimbabwe’s food and health crisis is more than $226 million since October 2007, but the disease continues. The UN has reported a total of 13,960 cholera cases with 774 deaths since August 2008, affecting all provinces in the country. The actual death rate is said to be even higher than this reported number.

In the midst of all this, how is hemophilia care faring? There is little food in the country, minimal health care, and no treatment for hemophilia. I am proud to say that the US is the number one aid donor to Zimbabwe, and likewise, Project SHARE is the number one donor of factor to Zimbabweans with hemophilia. And I’ll be the first to say this still isn’t saying much. The needs are deep. We are now sponsoring individuals in Zimbabwe, supplying factor and struggling to help Elton, an 18-year-old with a grotesquely swollen knee from repeated untreated bleeds. He is in danger of losing his leg, and even life, if we do not get him medical aid.

In the midst of everything–famine, disease, unemployment, devalued currency, no gas, no foreign exchange, little medicine—the Zimbabwe Haemophilia Association perseveres. When you think about our current economic situation in the US, take a moment and think about theirs. And they do not complain, but shoulder their burdens with grace. How do you celebrate Christmas when there is so much loss, and hopelessness? They will still celebrate. The almost amazing news to me is that they will hold their Annual General Meeting, in Harare, despite the outbreak and lack of food. Nothing seems to stop them! While our national hemophilia meeting overflows with money and give-aways, nice hotel rooms and so much food we throw most of it away, their meeting will be held at a hospital, in a bare room, with no food, filled with hungry people. hungry for medicine, food and hope.

Do they know it’s Christmas? They do, in the purest sense. Do we know? Christmas is a time of charity. That’s what gift giving is about. Please think to help those in Zimbabwe with a simple gift: $10 is a fortune to them. Let’s make a donation to their meeting, to provide food, travel money and maybe even some Christmas gifts… go to www.SaveOneLife.net and make a one-time donation to Zimbabwe, to our brothers with hemophilia, to let them know it’s Christmas.

Do They Know It’s Christmas? Band-Aid 1984

It’s Christmastime
There’s no need to be afraid
At Christmastime, we let in light and we banish shade
And in our world of plenty we can spread a smile of joy
Throw your arms around the world at Christmastime

But say a prayer

Pray for the other ones
At Christmastime it’s hard, but when you’re having fun
There’s a world outside your window
And it’s a world of dread and fear
Where the only water flowing is the bitter sting of tears
And the Christmas bells that ring there are the clanging chimes of doom
Well tonight thank God it’s them instead of you

And there won’t be snow in Africa this Christmastime
The greatest gift they’ll get this year is life
(Oooh) Where nothing ever grows
No rain nor rivers flow
Do they know it’s Christmastime at all?

(Here’s to you) raise a glass for everyone
(Here’s to them) underneath that burning sun
Do they know it’s Christmastime at all?

Feed the world
Feed the world
Feed the world

Let them know it’s Christmastime again

The CCBF Gala Ball: It All Started with a Child

Laurie Kelley November 3, 2008


I asked myself not only quietly, but on stage, aloud to the crowd of some 600, what was I doing in New York City, on stage, sharing an award with three remarkable celebrities on my birthday? Less than a week before I was in the sweltering heat of the Philippines, visiting families with hemophilia who earn only about $3 a day.

I attended the incredible “Breakthrough Ball” Gala fundraiser for the Children’s Cancer and Blood Foundation (CCBF) on Tuesday, October 28, not only as a guest but as an honoree. Actually Save One Life was being honored, the nonprofit I founded in 2000 to offer direct financial sponsorship to the children with hemophilia in the developing world. Also being honored were rapper/music producer Swizz Beatz, actor Steve Guttenberg, and former New York Yankees pitcher Al Leiter. To see my name on the program with these gentlemen was humbling.

This was a black tie event, my first. After lavish cocktails and hors d’oeuvres, we were seated. I sat with Dr. Donna DiMichele, renowned hematologist of the New York Presbyterian Hospital, who is on the board of directors of the CCBF, and who recently just joined the board of Save One Life, and also Tara Reddi and Janis Cecil (with husband Charles) of the Marlborough Gallery. I truly enjoyed chatting with artist Hunt Slonem, who sat to my left. To make the evening even more special, my daughter attended as my date, as this was also her birthday!

Actor Charles Grodin opened the evening, and surprised us all with a guest appearance by singer Lou Christie! He sang his signature “Lightnin’ Strikes,” a song released in 1966. I loved listening to it in 7th grade, and still do! 

Then Charles Grodin aired a music video by Swizz Beatz, which showed him visiting children with cancer in the hospital. He created a theme song for the CCBF and was the first to receive an award. I must confess I had never heard of him (I think I’ve been traveling a bit too much these past few years) but what an exceptional young man to be so devoted to charity! 

Then Steve Guttenberg was presented with his award. I didn’t realize this comic superstar had done so many charitable things. From spearheading an effort to get 50,000 eyeglasses for low income children, to volunteering 16 hour days incognito to help Katrina victims, to funding the “Guttenhouse,” a transitional home for foster children. 

Also accepting an award was Al Leiter, who has 19 years in the Major Leagues as a pitcher, and has won nearly every philanthropic award MLB offers, including the 2000 Roberto Clemente Award. He is now a baseball analyst for the YES Network. He is one athlete renowned for his charity, having given more than $1.5 million since 1996 to various children-related charities in the New York area and in south Florida.

An incredibly moving speech was given by Ron Iervolino, president of CCBF, that had many of us in tears. His own child suffered from cancer, and he appreciates the generosity of the audience and of the celebrities in helping to fund research for a cure. Ron presented me with my award, and again, I was humbled to accept.

It was truly an honor to be included among such amazing people. We often hear so many bad things about celebrities; it was refreshing to be reminded that so many of them work quietly and generously. I thank the CCBF for honoring them. I had a warm handshake from NFL great Tiki Barber, and then took the podium to thank the many people involved in this evening.

I accepted the award, not for what I have done, which by my standards hasn’t been much yet, but as a pledge for what I will do. I promised the audience that this evening, on my 51st birthday, I would enter the second half of my life completely dedicated to Save One Life, which will become the voice of individual patients with hemophilia, impoverished and suffering. I pledged that I would not rest, or retire, and would work until my last breath to alleviate the suffering of children in the Third World with hemophilia.

While standing for photos with the honorees, I must comment on how friendly, down-to-earth and kind they each were. I wish we could give more attention to celebrities like these who do such outstanding work for children who suffer. Ron and I both know: nothing is worse than watching your child suffer. And nothing is as amazing as seeing strangers help and care.

So how did this all happen? How did I end up having this photo with three such handsome celebrities? I have to thank Tara Reddi first and foremost. Vice president of the Marlborough Art Gallery in NYC, her cousin’s son, Bahnu, has hemophilia and lives in India in Vijiawada. He happened to be registered as a beneficiary of Save One Life. When Tara learned this, she decided to learn more about Save One Life. She was so touched that we were helping children like her cousin’s son, and offered to help us. Soon, she became a board member, and soon after, she had a fundraiser for us at her Gallery. Dr. Donna DiMichele attended that event, was surprised to learn about Save One Life (Donna and I have known each other for years, but we’ve been quiet about Save One Life till now) and suggested my name as honoree for tonight. So thank you, Tara and Donna! You have helped our small organization grow in so many ways.

I’d also like to thank Les Lieberman, chair of CCBF, for allowing me this great honor. And to the many corporations who donated to CCBF on behalf of me: Bayer Corporation (Terry, Paul, Marianne, Bill, Joe), Baxter BioScience (John, Michelle, Pete–so sorry the snowstorm kept you away!), and Grifols (Ray, Eva, Virginia, Kathy and Chris). Thanks also to attendee Neil Herson, president of ASD Healthcare, who sponsors 46 children through Save One Life, and to Patrick M. Schmidt, CEO of FFF Enterprises and Save One Life board member, who also sponsors 46 children, but could not attend. Thanks to those who donated but could not attend: CSL Behring, Ellis Sulser of Factor Support Network; Barbara Chang of National Cornerstone Healthcare; Shari Bender, mother of a child with hemophilia; and Eric Hill, president of Biolife.

You all made the evening very special, and given us all new motivation to ensure the vision of Save One Life is fulfilled–that every child in poverty with hemophilia will have a sponsor, someone who cares. No one, no child, should have to suffer alone or suffer at all. Thank you and God bless you who work on behalf of ill children.

Philippine Journal: Day 12

Laurie Kelley October 27, 2008
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.

At Reymar’s House
Carymar

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

Laurie Kelley October 22, 2008

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.

Reymar’s Bleed

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

Philippine Journal: Day 5

Laurie Kelley October 17, 2008

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.

Jun-Jun
Laurie interviewing Randolph

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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