Developing Countries

Philippine Journal: Day 5

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

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

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

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

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

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

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

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

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

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

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

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

Why so few patients to the PGH?

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

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

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

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

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

The Philippines: Dedication, Love and Service

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?

Meeting with Father Don
Elmer

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.

See photos of the whole trip here.

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.

See photos of the whole trip here.

Off to the Philippines


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.

See all the photos of the trip here.

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!

Mission: Dominican Republic


The last day of our trip to the Dominican Republic was reserved to visit the homes of four families with hemophilia. We started out bright and early, the tropical heat slowly rising with the sun, and headed for Bonao, a pretty town located on the roaring Yuca River. It took about an hour to get there, to meet with the Carlos Manuel and Jose Luis Ortiz. With me were Jeannine, executive director of Save One Life (a child sponsorship program), Haydee de Garcia, president of FAHEM, Maria Espinal, nurse at the Robert Reid Cabral Hospital, and Zoraida, general manager of LA Kelley Communications. Zoraida sponsors Jose Luis, a young man with hemophilia, and our visit would check on how he and his brother were.

Meeting with them was pure joy. The Ortiz brothers are natural poets, and every word and sentence is chosen to express kindness, civility and warmth. No matter that they have hemophilia, that their family struggles economically, that they both have severe joint damage that leaves them with unbending knees and hobbling gaits. When you are with them, you are the most important thing in the world. They exude a kind of hospitality very rarely found. Marisa, their mother, had not seen me in about four years and we pounced on each other with hugs. She laid out a fantastic meal. We then walked down to the river, to see the beauty of Bonao. It was a lovely visit. We were sorry to leave.

An hour later we were searching for the home of the Gimenz family. They live on the fringe of Santo Domingo in a place I am sure very few if any Americans have seen. Dirt roads, towering palms, rows of tin roofs with chickens scuttling everywhere, this village or settlement is remote, not easily accessible and devastating for two children with hemophilia. Angel is only six and almost died in December from a head bleed. Thankfully, his mother, also named Zoraida, was educated by FAHEM about symptoms and knew what to do. Angel was hit in the head and began exhibiting symptoms of a head bleed; he was brought to the hospital that night. A miracle considering Zoraida does not own a car nor have much money, and transportation is questionable and unreliable. Angel’s older brother Andres watched and listened as we heard this story, occasionally smiling and dropping his head shyly when we looked at him. He had just attended camp with us. An extremely handsome young man of 15, he has a killer smile and a friendly manner. He gave me a brief tour of their tidy wooden home, only three rooms, shared with four dogs, cats and a hen and rooster in the back. Both boys need sponsors, so if you are interested in helping this family, please go to www.SaveOneLife.net and let us know!

Next stop, the Vasquez family, who live closer to the capital and down a small tienda or shop selling candy and things. The shop is really just a window from which they display what little they have to offer. Gabriel is the young boy also looking for sponsorship. Last stop was the home of Misael and Jayro Medina. Misael attended camp as a counselor and did a great job. His brother Jayro, deeply religious, has not walked in years. So many bleeds left him bedridden, during which time his muscles atrophied. But he does not whine or complain but shows again that warm hospitality. Though these are men, we will still look for sponsors to help ease their burden in life. Their father only earns about $25 a month, and life is expensive in the city.

See all the trip photos here.

Seeing the conditions of the poor, the crippled joints of hemophilia, might leave a person feeling overwhelmed, stunned, depressed. But not us. We feel honored to have met these families, impressed at how confidently they face life’s harsh challenges, and motivated to help them financially through our program. We saw the kids at camp who are already benefiting from having a sponsor–they use their sponsorship funds to travel to the hospital, to buy medicine, to stay in school. The Ortiz brother attend college and will one day get jobs in the tourist industry, where they can charm visitors to their land, thanks to the support from Save One Life, for funds, and Project SHARE, for factor. They are one success story among many; and you can help us have more. Adios for now!

From the Rich and Powerful to the Poor and Dignified

The weather is cool and breezy in Bulawayo, the second largest city in Zimbabwe. It’s a city with wide streets, wrought-iron architecture that might remind you of New Orleans, flowering trees and fresh, breezy air. It is also a city with characteristic long queues for the bank and the gas stations, with people foraging for bread and foreign exchange. Zimbabwe is a tough place in which to get by.

We started our trip just yesterday but it seems much longer than that. While waiting in the lobby of the former-Sheraton-now-Rainbow Towers hotel for our ride to Bulawayo, hotel staff began literally rolling out the red carpets. As we quickly assessed, the president of the country was soon to arrive. That would be Robert Mugabe, reviled by western countries as an arrogant and deluded dictator, and here, sardonically referred to as “Bob.” How to describe him? Think Enron. There has been no natural disaster in Zimbabwe, no civil or cross-border wars, no Communist rebels; so why the severe economic downturn? Why is it people cannot even find bread to buy? Why is it that people cannot even access their own money out of their own bank accounts? Why have Dunlop Tires and Hertz, among many other corporations, pulled out of this country? Disastrous government policies that penalize its people, who are hard working, long suffering and much too diplomatic and kind. So in strode Mugabe and his retinue, along with the president of Senegal. I snapped a photo of “Bob,” now immortalized in my scrapbook, and someday immortalized in the history books alongside others of his kind.

Just to give you an idea of how difficult it is to manage in Zim, look at what we had to do to get transport to Bulawayo. Though we had reservations with Air Zimbabwe, their computers had been down for two days. Unable to call to get through, Peter Dhlamini, my host, friend and one of the founders of the ZHA, visited their offices several times, but the lines were long with other travelers, all trying to get tickets. Eventually, we lost our reservations and tried to hire a car. Well, without Hertz, we only had Avis, which had no cars. Peter finally located a friend, “Luckey,” who had a car, and Peter, Collen Zhuwao, the general secretary of ZHA, Luckey and I started on our long journey, in pelting rain, through the Zimbabwe countryside.

But today more than made up for any inconveniences. We started our day by visiting Andrew, owner of a tool shop, and his 18-month old son Michael, who has hemophilia. Imagine having a baby with hemophilia and not having any access to a hematologist or factor! So far so good for them, but as Michael grows, bleeds may increase in frequency. We discussed dosing, factor brands, symptoms and what to expect as Michael grows older. I gave Andrew a copy of Raising a Child With Hemophilia and urged him to read it as Michael develops. Michael had not yet been registered by the ZHA, so we recorded all the information they would need to add him to the registry.

We next visited the Bulawayo branch of the ZHA, located at Mpilo Hospital, and met Ndemba, a young man with hemophilia who mans the office. The clean and tidy office is in need of a computer, printer and refrigerator for factor donations. We also met the CEO of the hospital, and Phineas, the Matron, an energetic man and registered nurse who handles all the hemophilia cases. The reason for this is that–try to comprehend this–there is no hematologist in Bulawayo. None to service the 18 registered patients. Things are so bad in Zimbabwe that there is a “brain drain,” with all the professionals and skilled people fleeing the country. Yet the hospital itself is clean and operational, settled in a quiet area, surrounded by beautiful trees and tropical plants.

Last visit of the day was to the home of one child who made a permanent impact on my life: Khumbs. I first met Khumbs on my 2000 visit. A motherless child, he had just had his leg amputated the year before when a knee bleed had not resolved (pooled blood eventually can lead to gangrene). He was only nine years old. I saw him again in 2001 at our first camp in Zimbabwe. Shy, sweet, he followed me around the camp, propelled by his crutches, wanting to communicate though he could not speak English. Smiling was our language. Next year, his father died. Left an orphan, he was faced with living with his grandmother, who lived in a rural village. Living in rural Zimbabwe and having hemophilia could be a death sentence. But his uncle stepped in and adopted both him and his brother, who also has hemophilia. Now both boys are living with their uncle, who also has three other children, and both attend school and look strong and healthy.

As we pulled up to their house, I waved enthusiastically to Khumbs and he waved back. I was so happy to see him again! His framed picture hangs on my office wall and I had never once forgotten him in all the years. He and his brother had grown so tall that I was dwarfed; their uncle has cared for them remarkably well. We had brought with us reporters from the local TV and newspaper and we filmed the reunion, and interviewed with them. Our story will appear on the news in the coming weeks.

I pledged to put both Khumbs and his brother in our program Save One Life, so they can begin receiving sponsorship money. Their uncle only earns the equivalent of $20 US a month as a librarian. He must pay money for transportation to his job, which consumes most of his income. I don’t know how they manage; I really don’t. Save One Life will effectively double his salary, and give the family the money they need to get the boys to Mpilo for treatment when needed. We enjoyed sitting in their yard, playing with Khumbs’ toddler nieces and gaining renewed respect for the very desperate lives of the poor. Somehow, in the midst of chronic pain, poverty, economic collapse, a pompous government and repeated loss, this hemophilia family has managed to keep its dignity and hope.

(Photos: Andrew, baby Michael and Laurie; Bulawayo’s stunning architecture; Getting by selling vegetables; Khumbs and his brother)

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