Blog Archive

Sunday, February 28, 2016

New for 2016: Pfizer’s Factor Savings Card Program Increases to $12,000

Good news if you struggle with copays and coinsurance!

In 2016, Pfizer made enhancements to the Hemophilia Factor Savings Card Program to better align with the needs of their hemophilia patients. This program has increased the maximum benefit for copay and coinsurance assistance up to $12,000 for eligible patients on Pfizer Factor products.*

Eligibility Requirements Include:

·       No financial eligibility requirements
·       Available to privately insured patients or uninsure
(     
       But please see website for full terms and conditions.

Program Website:
·       www.HemophiliaVillage.com (resources and support)


*Terms and conditions apply. This card will be accepted only at participating pharmacies. This card is not health insurance. No membership fees. You will receive a total benefit of $12,000 per calendar year, or the amount of your co-pay over one year less a patient financial responsibility of $10 per month, whichever is less.

If you have any questions about the use of this Pfizer Factor Savings Card, please call 1-888-240-9040 or send questions to: Pfizer Factor Savings Program, 6501 Weston Parkway, Suite 370, Cary, NC 27513. For more information, please visit www.HemophiliaVillage.com.

The content of this post is provided and sponsored by Pfizer.

Sunday, February 21, 2016

Row for Hemophilia!

If you think "Row for Hemophilia" sounds like a nice little fundraising event taking place at a local fitness center, you may be surprised to learn that it is actually a 2,400 mile
unassisted row by a young man with hemophilia across the Pacific Ocean! 

Who would be adventurous and determined enough to take on such a formidable challenge? Two University of Georgia students, Jacob Pope and Chris Lee, who are on the rowing team and have a connection to hemophilia and to Hemophilia of Georgia are planning this ocean row. They currently are in the process of raising funds to compete in The Great Pacific Race in June 2016.

Donate here!

Hemophilia advocacy and treatment is a cause close to Jacob's and Chris’s hearts. Jacob has hemophilia B. He is passionate about health and lives as active a lifestyle as he can within the bounds of his hemophilia. A management information systems student, he plans to do medical consultancy and nonprofit work. Last summer, Jacob interned at Emory’s Aflac Cancer and Blood Disorders Center with Dr. Shannon Meeks. He is a John Youtsey Memorial Scholarship recipient, attended Camp Wannaklot and has volunteered at Trot to Clot events.

Chris studies genetics at UGA and is fascinated by genetic disorders such as hemophilia. He is a premedical student in his third year. The two met on the rowing team and have been close friends ever since. Together, they hope to bring awareness and provide financial support to organizations such as Hemophilia of Georgia. They both share a drive to push their own limits and a desire to make a real difference in the community. The idea for Row for Hemophilia came about because they wanted to have an extraordinary adventure that could impact others as well as themselves.

Typical crossings take between 30-80 days for the 2,400 mile journey. The length of time varies due to wind, storms and currents. Jacob and Chris anticipate completing the journey in 45 days due to their rowing experience and technical training. Their goal is to complete 50-55 miles each day, split up in shifts, rowing both separately and together.

Their boat will be 27-29 feet long with two cabins. GPS and autopilot to help them stay on course. It will also contain emergency equipment, tools, a repair kit, a Wi-Fi hub and a satellite phone.

Jacob and Chris will need to consume 10,000 calories daily, most of it coming from dehydrated
backpacking style meals. Water will come from an onboard water-maker capable of desalinating up to 8 gallons per hour. 

It's organized ocean rowing race so they'll be trailed by a support yacht and have 24/7 access to an emergency medical consultancy line. Jacob has moderate hemophilia and after discussing his plans with his hematologist, has decided to follow a fairly aggressive infusion schedule. He will bring approximately 20 doses of factor with him.

Jacob and Chris hope to set some records, too! If successful, the pair will be the youngest team to complete the row across the Pacific Ocean, from California to Hawaii, and Jacob will be the first person with hemophilia to have completed an ocean row!

The boys hope to raise $150,000, and have already reached about $50,000. This will just about cover their expenses. More funds are needed which will be donated to HoG, to help fund research and for camp. Upon completion of the race, all functional equipment will be sold to the rowing community with the proceeds added to the amount donated to HoG. Fundraising is their top priority and Jacob and Chris want to guarantee to donors that their generosity will make an impact. 

Learn more about Row for Hemophilia and how you can donate funds to help Jacob and Chris achieve their incredible goal of rowing unassisted across the Pacific Ocean and bringing awareness to
hemophilia. Follow their progress on Facebook and Twitter and donate here!


Sunday, February 14, 2016

X-Boys: The Family by the Sea

Our 9+ hour journey from Santo Domingo


Day 4. Saturday, January 30, 2016 Dominican Republic

Despierto temprano. I awake early this day, at 5:30 am, in the near dark, a guest at Haydée's house. Hayée is president of FAHEM, the hemophilia organization of the Dominican Republic, and a good friend and colleague. We've worked together for 18 years now. We share a light breakfast, eggs only, and a quick hola to housekeepers Isabel and Anna. Our team assembles on Haydée's front patio: Fendi Bisono (a young man with hemophilia who is our main contact for Save One Life in the DR), Mecho, Haydée's sister and treasurer of FAHEM, Eduardo, her husband, a successful architect,  Dra. Joanne Taveras, the adult hematologist and also our friend (oh let's face it; everyone here is friends with everyone! When they say Mi casa es su casa they are serious), Haydée of course, Zoraida, me and our driver José. We have a large van, very comfortable. And off we go! This would be a 5-hour drive one way to visit one family, a factor X deficient family. Factor X deficiency is quite rare, but Dra. Joanne tells us that in this section of the country, out past Barahona, almost to the Haitian border, there are several families with it.

Cooking pot at rest stop
We navigate the crowded streets of Santo Domingo and finally open up to the highway and countryside. The further away we drive from the capital, the more we see the pretty mountains that define this island. The sky is bluest blue, a cobalt canopy over tender, green carpeted hills.

Dra. Joanne passes the time by sharing all sorts of things, in Spanish, and I miss most of the conversation. Then she and her fellow committee members do word games from a phone app. It gets to be a lively competition. We take a break along the route, and a small rest stop. It’s a little store front, stand alone, with sad plastic chairs in the dirt out front for patrons, with chickens running about, and soup cooking out back in a black cauldron over an open fire. I’m looking for a bathroom out back, and all they have is an outhouse. And by that I mean corrugated metal sheets to form a wall, wired together around a hole. Just as I am about to pry open the alleged door, Eduardo, laughing, points to the little cottage right next door, also a restaurant with a proper bathroom. Of course none of even the proper bathrooms have soap, paper or driers. It’s always bring your own.
Laurie Kelley by Caribbean Sea
On we go. About three hours in we stop again, this time at a seaside road stand on a hill. The view is breathtaking. Behind us, volcanic mountains that jut up from the ground, draped in vibrant green. In front, the crystal blue Caribbean Sea, with frothing waves, with water so beautiful and pure, the waves seem to melt diplomatically into one another gently, rolling and crashing into the hillside on which we’re all perched. A yellow dog runs to greet me and frantically paws my white pants, dotting them with her prints. She senses correctly I’m the dog-lover of the group and follows me about. I promise myself to being a box of Milkbones on all future trips, in addition to factor and all the other goodies.

Typical outhouse
Several roosters are imprisoned in little upside down wire cages, advertising their availability as dinner. They cluck in confusion. In two huge rusty kettles, lunch is cooking, the smoke trapped inside by palm leaves acting as tops. The family that owns the roadside vendorship smiles reluctantly at us, perhaps sensing we aren’t hungry enough to buy lunch yet. A bay stretches out from our vantage point. Beyond that bay lives the family we will see, still an hour ride away.

The roads are great in the DR.  Our ride, in a clean and new van, is smooth and comfortable. We make one final stop at Dr. Joanne’s mother’s holiday home, a wonderful place, like a tropical oasis! A natural waterfall rushes into a man-made pool, fringed on all sides by stunningly towering palm trees and moist flowering plants. José, our driver, cuts a branch from the tree next to the van, which has a tangle of roots cascading down from its massive branches and a substance oozes out. Caucho, he says. Rubber.

Laurie Kelley with Adrian and mother
We finally reach our destination, the neat little home of the Acosta family, who turn out to greet us. Haydée hugs the mother, Jhoann, like a sister. Everyone is introduced. This is the first time FAHEM has been out to visit the family. The family is impressed and honored. And they know why we are here: to enroll the two sons with hemophilia in Save One Life.

See the DR 2016 Gallery and all photos here.

The house, which sits right on the roadside, is in good shape. It’s a saltbox: four walls, wood, with pressed wood inside for dividers. The dividers are home-made and wobbly. One room is the bedroom, one the entry room, where a small, lone, scarred table stands, and one room the kitchen, mostly empty. They don’t own much: one bed, one table, a washing machine that seems oddly out of place, a stove. Two small, rickety chairs, and two heavy chairs that Eduardo teasingly calls thrones.

The Acosta Family
The boys are not shy. Zoraida sets to work right away to interview them for Save One Life. She takes out the enrollment forms, and standing, asks the boys a series of questions. Both boys are small, and look to be about 8 or 9 years old, but in fact are teens: 15 and 14. Abraham is 14, and in the 5th grade only. He misses a lot of school due to bleeds, a common outcome of hemophilia in developing countries. He loves math, and fishes in his spare time (later we would see why). His brother Adrian is the wise guy. Charming smile, glib, he’s 15 and wants to one day be a doctor, because of all he has been through. Here doctors are like gods; they determine the quality of life these children may have. Adrian also likes to fish in his spare time.

Haydé de Garcia, president of FAHEM,
with sister Mehco, treasurer
Laurie Kelley enjoying fresh coconut
The HTC, as we just experienced first hand, is five hours away. It would cost the family $60 to go to get treatment. The father, Andris, only earns $100 a month. Do the math. Despite the nice home appearance on the outside, there’s no toilet or bathroom, only an outhouse. There’s no fridge; there is electricity, again jerry-rigged from the street. There’s no tub or shower or any way to bath, except the sea. Food is prepared using charcoal outside. It’s a rustic life. There’s no TV, no video games, no cell phones. You can imagine then what a difference $24 a month will make; it will actually be $48 a month, almost half the father’s salary, if both boys get sponsored.


Jhoann cuts out the coconut meat
Zoraida interviews the boys 
After the interviews, we wait in the front of the house, and Andris grabs a bunch of green-husk coconuts. Using a sharp machete, he lops the top off of each coconut and hands us one. We sip the cool and refreshing coconut juice inside. Haydée and sister Mecho sit on the slope in front of the house; Zoraida and I stand. When we finish, Andris takes the machete and whacks each coconut again until it cracks open. Then we peel out the coconut meat and eat it. I shock Andris by asking for the machete. He reluctantly hands it over, looking at the group to see if I am crazy. I want to slice my own open. After a few whacks it splits in two and everyone laughs.

Caribbean feast!
When our home visit is done, we travel on to another seaside stop, this one at a cove. There’s a perfect sea in front of us, the color of the most exquisite jeweled turquoise. It stops you dead in your tracks to gasp at it. Abraham climbs a huge piece of driftwood while I photograph his daring. We stroll along a boardwalk to the cover, where there are nice shops. Apparently families rent the shops and prepare meals to sell. This is what Andris’s wife Jhoann does. We are ushered by the ever-charming Adrian to mismatched plastic chairs and a long table in front of the quiet cove. Instantly a young cat and two wary dogs hover about. Hip-hop music blares from a radio near us where teens are hanging out and swimming. We have drinks, wine, a sugary fruit called anom that I take a sudden addiction to, and best of all, parrotfish, grilled. It is simply the best fish I have ever had. I ignore the gaping-mouthed-head and yellowed eyes and dive right for the sides, despite the numerous bones. About 12 fish are brought out and we devour them. And so does my kitten, which I deftly feed under the table after straining each mouthful to remove the slender bones.

Abraham shows off
Adrian serves us as magnificently as any waiter in a five-star restaurant and the food could not be better. After our feast and siesta, we must hit the road. We hug, pledge to get sponsors, and meander back out from the lush cove, to the naked beach and sun, for photos and good byes.


The five hour trip back seemed to fly, as we had much to share and discuss. What a difference we will make in the lives of this family; what a difference in our lives they make to us.
See the DR 2016 Gallery and all photos here.
FAHEM, volunteers with Acosta Family

Sunday, February 07, 2016

¡Qué Especial! Return to the Dominican Republic Part I

Haydée, Zoraida, Rosa, Glenn

It's been over two years since I've been to the Dominican Republic, the charming Spanish-speaking country of 10 million on the island of Hispaniola. When I first arrived in 1998, this impoverished country was struggling, trying to boost tourism and recover from a devastating hurricane that destroyed the landscape. Hemophilia care was almost nonexistent. The changes since then have been amazing; the country is a humming, frantically active hive of business, trade and tourism. And this trip was truly special.

Dr. Rosa Nieves, Haydee de Garcia, Laurie Kelley,
Dr. Glenn Pierce
My good friend and colleague Dr. Glenn Pierce was coming along. Glenn is one of the most impressive people in hemophilia: twice former president of the National Hemophilia Foundation; former vice president of clinical research at Bayer; former person with hemophilia (had a liver transplant); and most recently senior vice president medical and scientific affairs at Biogen. Glenn was responsible for overseeing the clinical studies of Eloctate and Alprolix, and brought those two revolutionary products to market.

He left Biogen to get a knee replacement, and is now volunteering for the World Federation of Hemophilia. Glenn also sponsors children through Save One Life, the nonprofit child sponsorship program for children with hemophilia I founded.

He wanted to come along one of our Save One Life trips, because they are very different than most other hemophilia trips. We make it a point to get into people's homes, ground zero. For Glenn, this would be the first time he would visit impoverished people with hemophilia in their home environment. I chose the DR for him, as it's the country I know best. After all, it was my first developing country too, in 1998. I entered the inner city two-room home of a woman called Santa then, who had twins with hemophilia, and entered a new world forever. It was like time traveling, and the trip changed my life.
Laurie Kelley and Angel
Day 1 Wednesday January 27. I awake at the home of the president of the Fundación al Apoyo Hemofílico (FAHEM), which means the Hemophilia Help Foundation. Haydée is the mother of an adult son with hemophilia, and she founded FAHEM in 1995, two years before I met her. We've been friends and colleagues ever since. Over 19 years we've worked together to improve care for hemophilia on the DR.

Glenn meets with the Jimenez family
Haydée and I had breakfast: fresh fried eggs and mangú, the delicious national dish. We picked up Glenn and Zoraida Rosado, program director for Project SHARE, at the nearby Marriott Courtyard. Our first meeting was with Dra. Rosa Nieves, pediatric hematologist at the Robert Reid Cabral Hospital. Zoraida translated as Glenn and Rosa spoke about the new prolonged half-life products, how they work, and then about the Biogen 1 million IU donation in particular. Glenn stressed the importance of reporting on all the product usage; documentation is essential to be considered for more product donation. It was a good meeting as Glenn could see first hand how Biogen's donation was being distributed and monitored.


See our full gallery of photos of this trip.

To Gabriel's House
After this meeting we then drove out to see Andres and Angel Jimenez. They don’t live far away, but within 20 minutes outside of the throbbing streets of Santo Domingo everything changes. The jam-packed, bumper-to-bumper traffic lightens and turns into bumpy country roads, then dirt roads. This would be Glenn’s first visit ever to see an impoverished family in their home. I've been to this home 3 times now over the years.

Bed on a dirt floor; no screens, no latrine
Soon we were at the house, a wood slat structure with a steel corrugated roof. The boys came out to greet us, smiling shyly. I am able to converse a bit in Spanish now, so said hello to the boys and asked how they’d been. After a tour of the house—three rooms, including a kitchen with a huge propane tank for cooking, a bedroom with one bed, and the narrow, dark living room, altogether no bigger than 20’x’16’ with no screens or luxuries, Angel and Glenn looked for chickens out back. Glenn chatted with the boys, with Zoraida translating. Angel is almost walking normally now, following surgery on his knee. Everyone is amazed when we tell them Glenn used to have hemophilia (a liver transplant cured him). We had some laughs, hugs, and I left a gift bag with the mom, and inside un regalo muy especial--$50. She seemed most pleased by the plush poodle Beanie baby I gave her!

Gabriel and girlfriend; Laurie Kelley holding newborn
Afterwards, we headed to see Gabriel, a 20-year-old with hemophilia. He is propped on the back of a motorbike--no helmets of course--that whizzes along the dirt roads for 15 minutes, showing us the way to his house. Typical slat walls and steel roof. His mother Wanda is a live wire! Loud and animated, she commands attention when she walks in a room. After a brief visit, she pointed us down the road, to where her son Gabriel actually lives. We shuffled down the dirt road, passing several shacks, sun warmly toasting us, and approached Gabriel’s shack. Outside in the sunshine, a weakened puppy lay, same color as the dirt. It could only have been about a month old. I stooped to pet it, cradle his head; it looked up at me and leaned its head into my hand and licked my finger.  I saw fleas scuttling through its fur, and the ants on the ground crawled freely over it. It had sores on it, poor baby.

Inside, a half cement, half dirt floor spread before us. Corrugated steel sides and top, no bathroom or even latrine. They do have electricity by jerry-rigging some wires from outside. The barest of possessions. Gabriel lives here with his girlfriend, and their baby, only a month old, like the puppy. I was able to hold him. I recall Gabriel from FAHEM's summer camp about seven years ago, as a young teen. His leg then had been so mangled from bleeds, he had to hop/skip to get around. His walking is better now, but it’s hard for him to hold any job. He was doing some house painting, he told us, but a bleed kept him down, and the owner fired him. Currently he is unemployed. His Save One Life funds mean so much to him. Gabriel told me he used his Save One Life money to put in the concrete floor.
Glenn meets FAHEM

After this visit, we walked back to the SUV and jumbled back to the city. That evening, at Haydée’s casa, the FAHEM board members all came over. Everyone sat outside on the patio in the humid air: Fendi, Alfonso, Jonathan, Guillermo and Brahyan, Wicho, Mecho, and Dras. Joanne and Rosa. These men were all the boys I had first met in 1999, at our first camp, when they were only kids. Now they are mature adults, and future leaders. Haydée and her team are doing an excellent job at grooming them.


Laurie Kelley meets José Luis!
Glenn was able to chat with everyone, asking questions. Each person introduced themselves and shared something about their background, their struggles. They included how FAHEM turned their lives around.  Everyone appreciated Glenn’s visit; we impressed on them that Glenn is an important person in the world hemophilia scene, and he chose to come to the DR to get a glimpse of how people actually live and struggle with hemophilia in developing countries. Part of the reason we chose the DR is that there is such a good team here: doctors, parents, patients, industry—everyone works together. It's not like that in all countries and lack of teamwork hinder growth, progress and care.

First hospital in Americas, 1500s
Day 2 Thursday January 28. This was our free day, to tour Santo Domingo, the capital city. The Colonial section downtown is so crowded now you can hardly park your car anywhere. We saw all the usual sights, buildings dating back to the 1500s, when the Spaniards were here. We saw the first street in the Americas, the first university, the first hospital in the New World. This is where Christopher Columbus landed in 1492, and where the conquest of the Americas began. It's history is rich.

The food here is fabulous. I'm not a foodie, and could honestly survive on power bars, but here... fresh, abundant, delicious fruit and fish. The flavors are amazing. We took Glenn to a ritzy restaurant for lunch, and then three hours later, off to Boca Chica for dinner! The restaurant in Boca Chica is actually built on a pier, over the ocean, so you are surrounded by the waves as you eat. We all relaxed, chatted, enjoyed being in a foreign country, under the stars, surrounded by candles, hearing music, the roar of the sea against the beach. It was a lovely way to end the night.

Haydée lectures families
Day 3 Friday January 29.  This morning we stopped by the HTC at the hospital, where many families with hemophilia were gathered. I knew so many of the kids: Orlando, Socrates, Jhoan, Darling, Emmanuel. We exchanged hugs and kisses after a two year separation. Maria, Santa’s mother, came also. Santa now lives in Santiago; she was the first person in a developing country whose home I went into, in 1998. I still recall how sad her little home was, and she was putting away Christmas decorations, just a cheap plastic garland, that was all.  I slipped the grandmother $40, which was all I had in cash.

Haydée lectured the families on various things concerning hemophilia, but especially the importance of coming to the HTC when they have a bleed. She rightly pointed out that many do not come, choosing to bleed, thinking that there is no factor. But now there is factor! The Biogen donation will last some time, and they should come and get treatment.

The HTC and all the hemophilia families meet Glenn
Glenn was introduced and Zoraida translated as he spoke. He mentioned the Biogen donation, how he was a part of that product development, and how important it was for everyone to report on the donation usage, so they would be eligible to get more. Afterwards, photos, good byes, and we took Glenn to the airport to get his flight home. Haydée and I chose to relax later at her club by the ocean to have lunch. We were the only ones there. The Caribbean Sea was a sparkling jewel, the day warm. We rested on plastic chairs, admiring the peace and the serene waves. We shared a grilled parrotfish, which I've never eaten. It was a dark orange color, complete with head and eyes. It bore a row of very sharp teeth; it’s expression, popped-open-mouthed, looked like it was at once shocked and demeaned by being fried and eaten. Best fish I ever ate.

See our full gallery of photos of this trip.

Part 2 next week! We go off on a 9 hour odyssey to meet one family. 






 
Bayer