wasteland, and it will take months, perhaps years to rebuild.
what Americans are best known for: being the first to help. Puerto Ricans are Americans and we must help them. This
is when I am proudest to be an American!
|Laurie, Zoraida and the APH Team
|Break time: Milton (Axium), Jésus
(Novo Nordisk) and Laurie
|Johnny Márques and Jésus
|Zulma of Baxter presents|
|Tamara writes the new
Puerto Rico—the shining star of the Caribbean. Remember those commercials from the 1980s? Puerto Rico is proud of its status as a Commonwealth of the United States of America; its inhabitants have been US citizens since 1917. How many of use reading this realize that Puerto Ricans are American?
This was part of my quest this week. To return to an island and people I love, to see how hemophilia care has evolved since 1998, when I first visited, and to see how hemophilia care differs from that of the States, especially in light of the Affordable Care Act.
Zoraida and I arrived Thursday afternoon and spent the evening with Osvaldo, a young man with hemophilia, and his girlfriend. We all had dinner together and listened to him share his story of having hemophilia, an inhibitor and limited access to product. Charming and intelligent, Osvaldo has suffered but also persevered: he is college educated and owns his own company!
On Friday we met with the HTC staff at the Centro Medical to get an update on hemophilia treatment. There are an estimated 250 persons with hemophilia on the island… but no one really knows. Like the States, there isn’t yet a national database. The facilities are good and the staff very inquisitive and kind.
On Saturday, Zoraida and I, along with Johnny and Tammy Marquez, the husband and wife team who head up the Association Puertoriqueña de Hemofilia (APH), traveled about the island to meet a few hemophilia families. We traveled two hours to Salinas to meet one family and another half hour to meet one more in Santa Isabel. Wonderful families; fascinating insights on PR hemophilia care!
We ended our day today by attending the annual meeting of the APH. It was packed, and we had a full agenda with a speaker on dental care, chiropractic care and later an open forum which became quite lively with a debate over whether hemophilia care in Centro
Medico was up to standards. The day ended with a great motivational speaker, lots of hugs, and good feelings all around. People with hemophilia have community, muy fuerte.
So what did I make out of all this? You’ll just have to wait… until August when we publish a full report in our article on Puerto Rico in PEN. Sign up now to receive it. And in the meantime, visit https://www.blog.kelleycom.com/2011/01/la-vida-hemofilia-visit-to-puerto-rico.html to read about our visit last year.
Good Book I Just Read
A Dog’s Purpose by W. Bruce Cameron
Maudlin, unabashedly sentimental, charming, simplistic, sugary sweet… I was at first wondering where this book was going, but then got sucked in by the sentiments, and was in a puddle of tears by the end. This book describes a dog’s life (lives, actually) as told through a dog’s eyes. The main character lives through four lives, reincarnated after each demise as a puppy, aware that he is reincarnated and wondering in each life: what is going on? What am I supposed to be and be doing? When does this end? It makes the reader wonder too, as the book is a bit disjointed at first and it may take a bit to figure out Cameron’s style. If you are a dog lover like me, you will enjoy much of the free association by the dog, especially whenever a cat appears; very clever and funny. The dog is feral in his first life, trying to survive and eventually is euthanized; reincarnated, he comes back as a lab, and his real story begins in earnest when he becomes bonded to a boy. No spoilers here, but the dog becomes smarter and more self-aware, and as a reader you share the dog’s unswerving loyalty to humans and his unending desire to serve and please, despite humans’ baffling behavior. By the end of the book you yearn for your own current dog to hug, or recall your childhood dog with such strong emotions, I can only think of Toy Story 3 as something in comparison. To fairly critique (as a professional editor) you must disregard or overlook the inconsistencies: the dog understands peeing, vomiting, crying but doesn’t have a word for his own natural instinct to mate? The dog refers to chopper, car, truck, cage, various power tools, collar, leash, swing… but when his boy’s mother removes her ring and throws it into the pond he doesn’t know what that little round thing is called? The dog conveniently doesn’t know names of things whenever it’s a Kodak moment. But just keep reading and don’t be critical and you will enjoy it. I hate being manipulated by purple prose but this was overall a wonderful book, because I have loved all my dogs and currently inherited a puppy I’ve only been complaining about. No more. I’ll love him with all my heart too. Three/five stars.
I have a strong affection for Puerto Rico and its hemophilia community. I first visited in 1998 after speaking with a young mom, Yoli, who called me to ask about her out of pocket costs, which were extraordinary. The timing was good, as I was beginning to wonder about the state of care there. All our newsletters to the Puerto Rican hemophilia foundation were returned, and there was no phone. Yoli did a bit of investigating and learned the nonprofit had become defunct. With a little more discussion, she decided to revive the nonprofit, and the new Asociación Puertoriqueña de Hemofilia (APH) was born.
Yoli and her husband Rene worked hard to build the new association up from the dust. And they did a fabulous job. Soon they had money for camps, scholarships and travel. They upgraded the only factor product on the island to a more advanced product. Things were going very well!
Then Yoli left to come to the US (mainland, that is; Puerto Rico is part of the US as a possession). Another young parent and lawyer, Johnny Marquez, took over the helm a few years back. Like Yoli, he has a son with hemophilia. I had stepped back so far I kind of lost track of what was happening there, and decided that the dead of winter, with one of the snowiest winters in history, was a good time to make a social call.
Zoraida Rosado and I headed to San Juan on Wednesday, in between huge snowstorms in New England. Puerto Rico is often called the Shining Star of the Caribbean, renown for its pristine beaches and water, lovely climate and friendly people. While English is spoken, not everyone speaks it. I wondered if this created a barrier to hemophilia care since so much is available in English.
On Friday night we met socially with families and the executive team of the APH. Johnny and wife Tammie opened their home for everyone. We had a lovely time and Johnny filled us in on how things work in Puerto Rico.
First, there are about 180 people estimated to have hemophilia, and about 125 of these are registered. Though a small island, many people live far outside the capital, making it hard for them to come in to get care at the main hospitals. And despite being a US possession, medical care is definitely offered more like a socialist country. The government has a budget for factor, opens a “tender,” and pharmaceutical manufacturers offer bids on their products. Usually the government goes with the lowest bids per unit of factor. With a limited budget, the government typically selects plasma-derived products, as they are able to buy more product within the budget limits.
Just recently, a recombinant was selected. One of the moms I spoke with was a bit frustrated that she must go to the hospital each time her baby has a bleed. She is already to start to learn home infusion, but the hospital didn’t want to offer this. So she bought factor herself, out of pocket! I can’t imagine that happening on the mainland.
Insurance reform will also impact Puerto Rico, but how we just don’t know yet. I’ve invited Johnny to come to one of our Pulse on the Road seminars, so he can learn more and bring back information to our very warm and hospitable Latin friends on the beautiful island of Puerto Rico.
Thanks to Johnny and Tammie, and everyone who made our stay so pleasant!
Disappointing Book I Just Read
The Imperial Cruise by James Bradley
In 1905 President Theodore Roosevelt sent a large political delegation, including Secretary of War William Taft, and his own daughter, the outspoken and rebellious Alice, on a cruise aboard the Manchuria to Japan, Korea and Hawaii to pave the way for better foreign relations. What was unknown to the public, and deliberately kept secret from Congress, thus breaking the Constitutional law, was that Taft and Teddy made secret alliances with the Japanese against Korean and China that left an open door to the Japanese to later invade these countries, and, Bradley postulates, lead to the attack on Pearl Harbor. The history he presents is not new, but Bradley makes much of TR’s racism, a topic most would like not to discuss. TR was just a product of his time, some might say. A fair point.
The topic of breaking the Constitution is excellent; Bradley’s depictions of what our country did to the Filipinos are searing; our military’s actions are unforgiveable. You will be shocked if you have never heard this history before. He is to be applauded for reminding us that America has had (and still has) imperialistic motives. But the book is very hard to read, not because it is too scholarly or bogged down in minutia of history (it’s light on all that, if anything), but because of the vendetta Bradley apparently has against the Roosevelts. Bradley seriously damages his credibility as an author by using quotations grossly out of context and cherry-picking vignettes from TR’s life to paint a caricature of a man, instead of fairly raising the questions of his racism, nationalism and motives. He refers constantly to “Big Bill” (the 300+ pound Taft), “Princess” Alice and “Big Stick Teddy,” almost in a sneering, snarky way. Not just once, but over and over and over. You wonder when the editors checked out. Bradley also seems to have a vendetta against Christians; he correctly points out that Christian missionaries started the opium trade in China, making so many businessmen (and reverends) in America rich, but created a product Bradley refers to, again over and over and over, as “Jesus-opium.” And that’s only one example of his seemingly anti-Christian tirade. You find yourself wincing, and wishing Bradley would grow up a bit, as a man and as a writer. I felt that I was reading a weak term paper from a college student at times (too many times). He also jumps to historical conclusions, while missing key information in his theories and hypotheses. Most disappointing, coming from the author of Flags of Our Father, later a Clint Eastwood movie. Maybe, just as he repeatedly accused TR, Bradley has become slave to publicity, and needed to kick the readers’ hornet’s nest to get some media attention. He didn’t have to; the story of what happened in 1905 doesn’t need any flourish. It’s a sad chapter in our history. But there are probably better books to read on the subject than this one. Two stars.