Sweltering heat, 100% humidity, long rides, sweat dripping
down our necks, back, arms, stepping gingerly through mud, grass, dirt… this
job ain’t glamorous or for the needy. Well, yes, it is for the needy; needy as
in being a child in poverty, motherless, earning a dollar a day, not having
enough to eat. These are the children with hemophilia we visited today outside
of Santo Domingo, in the Dominican Republic. It’s a day when you put your own
needs aside and realize just how shockingly removed we are from how most of the
world lives.
I first attended CampYo Sí Puedo (Yes I Can!) in Lomas Linda, just outside of Santo Domingo, the
capital, for the past four days. I was going to blog about this amazing camp
tonight, but today readjusted our reality to the real reason we exist: to get
sponsorships for deserving children in desperate situations.
Luis Miguel and mother Dulce
My day started with a shocking jolt at 8 am, after returning
from an hour-long run near the beach in the growing heat. From Tanzania, Dr.
James emailed me that Cuthbert, the little boy to whom I gave Tanzania’s first
home infusion, died of a GI bleed that could have been treated with factor
concentrate. We have been helping Tanzania for the past 6-7 years, and Cuthbert
was one of the first children with hemophilia I met there. His loss is
devastating.
But we headed out to visit the living; the children whose
needs still must be met. Visiting the children in their homes, we see how much
they lack, in the simple things we expect: clean water, sanitation,
transportation, nutritious food, books, imagination, education. Add to that
hemophilia and their lives are a daily struggle to survive, like Cuthbert’s.
Today we visited five families in about six hours. I’ll only mention two for
now.
At 10 am we rumbled along a crumbling, stony road in
Haydee’s SUV, built like a tank thankfully, to a cluster of wood shacks. The
farthest one housed the Ciriaco family. Huge plants fringed the walkways and
doors so that we had to duck sometimes. The house is made of wood slats, with
plenty of gaps in them to let sun shine in like laser beams in the morning, and
mosquitoes in at night. There are no screens, but the family does have
electricity as evidenced from the jury-rigged wires criss-crossing the shacks.
The family enjoys watching videos from camp on my iPhone
The family greeted us warmly; Luis Miguel, the son with hemophilia, sheepishly
tagged along, though he had just seen us at camp for four days! Why shy now?
His sister Nicole was not shy at all. Pretty in her beaded hair, she readily
hugged and snuggled. We all walked down to the river’s edge, where Luis
Miguel’s mother explained that the river rose in April of 2012 (11,000 impoverished
people had to relocate!) and completely flooded their meager home. They lost
most everything they had. I was told that the government came, helped for about
four days, and left. There’s no compensation, no one to sue, and certainly no
insurance. You are simply in the hands of fate.
Because the family was registered with Haydee’s
organization, the Fundación Apoyo al Hemofílico (FAHEM), they received food, clothing and support.
We snapped some pictures, interviewed the family a little then had to move on to the next three families.
At the end of the day, we drove to Wilson’s house. We drove far away from the city, on decent roads, until we started seeing less businesses and homes, and more shacks, colorful laundry strung to dry, overgrown plants and lots of chickens. Rural Dominican Republic. After asking numerous people for some sketchy directions, we eventually came to the right barrios and saw Wilson waiting by the side of the road. He hopped in, exclaimed, “Hello Laureen!” (in English no less!) and then showed us how to
navigate the dirt roads to his home.
It’s as pretty as a home can get in rural poverty. Lime green, little front porch. Inside, one giant room, divided with a cloth hung from a line, to serve as a wall. Wilson is 10, and wants someday to be a lawyer. He’s factor VIII deficient, but looks in good shape. Indeed at camp, he stole our hearts with his charm and smile. His mother Evalisa was present, and little by little, children and curious neighbors peered at us from their porches. Wilson has a sponsor already, new, and I can’t wait to share photos with him. As we chatted, little children ran about, holding hands, posing for a quick picture, which I then showed them in playback to their great amusement. Giggling, curious and trusting, I’m sure they haven’t seen our likes before!
Wilson and Laurie
I distributed some donated gifts: jewelry for the mom and grandmother, toys for the kids, and an envelope with some money for the mother. Wilson is a born businessman; he ran up to Vincente, a father of a child with hemophilia who has volunteered with FAHEM for years and who is a lawyer, and presented him with a beta fish…. in a whiskey bottle, sans whiskey. Vincente paid him a few pesos, and off we went with our fish in a bottle. I suggested we call him “Wilson,” and asked if the fish had hemophilia too.
Haydée, Vincente, and I stopped at a mall, and as we climbed out of the SUV. We strolled through the mall with our whiskey bottle, the fish sloshing about inside, causing a few security guards to turn their heads. We had a delicious lunch of chicken, discussing all the kids we saw today, with Wilson the Fish in the center of the table. Will the kids have a future? If we can get them sponsored, and continue to
get factor into the country. Well, we accomplished our goal to visit five families today, which was exhausting, but we didn’t exactly walk in their shoes for a day. It was only for a few hours, and it left us tired and contemplative.
We parted—Vincente with Wilson the Fish and I with tons of photos, visual images burned in our memory, and much work ahead of us. If you want to sponsor one of our five kids visited today (and we can show you great photos!) please visit www.SaveOneLife.netCoconut juice…
Richard Atwood, our colleague from North Carolina who researches all things in print and media hemophilia, has uncovered a great literary question: did William Butler Yeats, the Irish poet, have hemophilia?
He looks to Oliver St. John Gogarty, who published in 1963 William Butler Yeats:
A Memoir (Dublin, Republic of Ireland: The Dolmen Press. 27 pages). Richard provides a summary and comment:
Oliver St. John Gogarty, an Irish poet and physician, intended to write memoirs for nine of his famous friends. Regrettably only three were written before his death in 1957. Luckily he finished the memoir about William Butler Yeats (1865-1939), an Irish poet and dramatist. Gogarty mentions some of the accomplishments by Yeats, such as receiving the Nobel Prize and serving as a foundation Senator in the Irish Free State. He also states that Yeats disdained science while delving into the occult, mysticism, astrology, magic, seances, ghosts, and the spirit world. Gogarty praises Yeats for his poetry, especially his “intensity” of phrase by using the pouncing or surprising word. (p. 24). According to Gogarty, Yeats has the physical attributes of being 73 inches in height, being tone deaf, and having poor eyesight. Also that after undergoing the rejuvenating operations, Yeats claims to have been greatly benefited. In addition, Gogarty relates another physical condition when he and Helen Wills, a tennis champion, visit Yeats in a rented country home: “To our disappointment the maid announced that Mr. Yeats could not leave his room on account of a nosebleed. I knew that he was inclined to haemophilia. I ran up the stairs to his bedroom only to find that he had cut himself with a razor at the edge of his nostril as he was preparing to look his best.” (p. 17).
The brief memoir includes a photograph of the medallion, or plaque, of Yeats cast by T. Spicer-Simpson and a photocopy of a short poem hand-written by Sir William Watson that seems to refer to Yeats. The personal observation by a close friend, who also happens to be a physician, that Yeats is “inclined to haemophilia” is still not a medical diagnosis, though this raises serious suspicions by being from a primary source. Gogarty provides no dates for his observations, but the medical events he mentions probably occurred in 1934. The memoir may not add much to the understanding of Yeats and his poetry, but it provides an interesting personal perspective. No information is provided on the author.
A gloriously sunny day greeted us in Pittsburgh for our fourth Pulse on the Road in 2013, on Saturday, June 15. Greeted by Alison Yazer, executive director for the Western Pennsylvania Chapter of NHF, about 18 families attended the event. Speakers Michelle Rice, public policy director of NHF, and Ruthlyn Noel, senior reimbursement specialist at Baxter Healthcare Corporation, were on hand to share their knowledge of current health care reform.
Pennsylvania has had a lot of activity regarding the Affordable Care Act, and the audience was itching to ask questions. Ruthlyn presented a one hour talk on the ACA; I followed with a short presentation on the importance of choosing a healthcare plan; Michelle then presented her highly regarded workshop, in which participants actually compare plans and crunch numbers and in the end, tell us which plan is best for their budget!
The audience peppered the speakers will excellent questions; this could be one of our liveliest audiences yet! I think there was a lot of deep concern about the ability of the government to take over aspects of our health care. Some of the highlights of the Q&A:
• The Federal government will run the Marketplace for individuals, not the state of PA
(The Marketplace, formerly known as exchanges, is a web-based program that allows people to
compare many different healthcare plans based on benefits and costs to assess the best one for each person)
Laurie Kelley and Alison Yazer
• If you make $25,000 a year, subsidies will be almost 100%
• You don’t have to be uninsured to take advantage of the Marketplace
• If you work for a large employer, you can’t drop your plan and go to the Marketplace; if you do, you won’t get any subsidies
• Insurance companies know who you are! Don’t ignore your insurance issues just because you don’t want them to know you have a bleeding disorder. Believe us, they know! They know your product, whether you have an inhibitor, your severity level.
• Without the Marketplace, you could waste hours trying to compare plans (Aetna has over 200 plans, for example!
• Coverage is not the same year to year, even with the same insurance carrier. Read you policy book annually! • We often look at cost only of a plan, but also look at what you get for the cost, the benefits
• Sometimes factor covered under Pharmacy benefits looks more affordable, but more and more we are seeing specialty tiers… instead of a flat rate copay (like $50), you could instead pay a percentage of your drug, like 10%. 10% of factor is unaffordable!
• NHF is supporting a bill in Congress to do away with specialty tiers.
Go NHF! Thanks to everyone who attended our event!! And thanks to Baxter for sponsoring the entire event, and to the Western Penn Chapter for hosting this.
So if you received and read your issue of PEN by now, you’ll note that we have a great feature article on apps that help you track your bleeds and sometimes even track your factor usage. Important given what’s coming don in the insurance field these days.
But that’s not the point of this blog. The author is a brilliant and creative young man with hemophilia named Aaron Craig, a hemophilia wunderkind, who makes movies (really), develops apps and roams the earth looking for things to invent.
When I noticed a few people wearing these shirts at hemophilia events, I wasn’t too surprised to note that his company, MicroHealth, had created them to raise awareness of hemophilia and the need to take your factor. The shirts say “keep calm and factor up” on them. Aaron writes, “The community has loved them. So what we did was we put them up for sale online and 100% of the profits go towards a chapter of the purchaser’s choosing. Each chapter has or non-profit has their own promo code to enter during checkout.” Nice!
The profits per each shirt sold with a code comes to about $10 per shirt. When the promotional is done on August 1st, Aaron will tally up how many shirts were sold with the SHARE code and will send a check for the amount of profits accumulated.
This is so important. Last year we shipped about $6 million worth of factor. Our shipping costs to developing countries is well over $20,000. We never expect the recipients to have to pay shipping. So Aaron’s idea is timely and helpful. Go ahead, buy one and get shirty with me!
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Because the family was registered with Haydee’s
At the end of the day, we drove to Wilson’s house. We drove far away from the city, on decent roads, until we started seeing less businesses and homes, and more shacks, colorful laundry strung to dry, overgrown plants and lots of chickens. Rural Dominican Republic. After asking numerous people for some sketchy directions, we eventually came to the right barrios and saw Wilson waiting by the side of the road. He hopped in, exclaimed, “Hello Laureen!” (in English no less!) and then showed us how to
