Asociación Puertoriqueña de Hemofilia (APH)

Puerto Rico: Mi Corazón se Rompe

Laurie Kelley September 25, 2017

My heart breaks. I sit at home tonight, trying to imagine what it would be like to have my house half submerged in water, a fallen tree slicing through one bedroom, my clothing and photographs ruined, the sewers backing up into the rushing water from the overflowing streets, my two cats missing and presumed drowned, my daughter huddling with me, unable to contact anyone for help because all electricity is out, and our cell phones were lost during the roaring winds, downed lines, and river of rain left in the wake of a massive hurricane. Our beds are soaked; food in the fridge ruined and submerged in the muddy water; medicine soaked; streets impassable.

No way to contact relatives; no way to call for help. Creatur

es of the night and underground now emerge to gasp for air: snakes, spiders, rodents, carrying disease and threat of bites.

Society has broken down and we wait and wait in the dark, throughout the day, and into the next night, for help of any kind. We’re hungry and thirsty, dirty and shivering. And alone.

This is the situation for so many families in Puerto Rico, where not just one town, or even just the capital was pummeled by Hurricane Maria, but the entire island. This tropical semi-state, a possession of the US, a warm, colorful albeit poor place, dependent on tourism and the welfare of the mainland, is now a ravaged
wasteland, and it will take months, perhaps years to rebuild.

I feel for Puerto Rico so much, probably even more than for the states of Texas and Florida. The needs in PR are massive; they were in economic trouble long before Maria hit; it was so bad that many Puerto Ricans were leaving the mainland in droves, for better medical care and education. And PR is an island, making rescue and ferrying aid so much more challenging.

I have been going to Puerto Rico since 1998, when I first visited to check out the hemophilia situation there. (Read our in-depth article about hemophilia in PR here) Though they belonged to the US, and were entitled to US funding for healthcare, they only used one factor product, a plasma-derived! Through the years, helping the newly resurrected Puerto Rico Hemophilia Association, we all helped bring patients together and pressured the medical community to investigate new products. The result? A variety of products in the mid-2000s, including recombinant, and a strong, patient-driven hemophilia association. I watched this group form, develop and grow into a powerhouse.

Mother Nature has set us back, but has not defeated us. I say “us” because I am still with PR. At the NHF meeting in Chicago just in August, I met with one of the island’s pharmaceutical reps and we talked about hosting another visit, to do more leadership training, to keep things moving forward. It will have to wait.

For now, we urgently need to get supplies into PR. Because our company and especially Zoraida, director of Project SHARE and who is from Puerto Rico originally, deals with humanitarian shipments, we will be contacting the manufacturers to see who is donating factor to the hospitals. We will be asking our readers and friends on Facebook to consider donating material supplies and necessities.

But… many people hesitate to donate to a place like Puerto Rico. Will the donations go into the right hands? I get it. At Project SHARE we diligently follow each vial of factor to its destination. But what about clothing and supplies to Puerto Rico?

We have a way. Allison Plaud, a mother of a child with hemophilia I met on one visit (and who has since emigrated to mainland US), has assured me that one of her trusted friends, a businessman, is collecting donated items and will be shipping them on Saturday to PR.

We endorse Allison and her friend, and beg everyone in the hemophilia community to donate items to ship.

Here are the items, and

where to donate!

And here is the situation in Puerto Rico.

I am haunted by the images, and by their suffering. Forget athletes kneeling, politicians sniping. Let’s be real Americans and do
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!

20/20 Vision in Puerto Rico

Laurie Kelley September 17, 2012

“The only true voyage of discovery consists not in seeking new landscapes, but in having new eyes” Marcel Proust

Vision is perhaps the single most important possession of leaders, especially those who seek to change and improve the future of its people. Saturday was a day of discovery in Puerto Rico for the hemophilia community as the Asociación Puertoriqueña de Hemofilia (APH) met as a team to work on fundamentals of leadership, such as vision.

I was honored to be the facilitator for such a day. I have a workshop called “Reach the Summit,” which I have given in other countries to help jumpstart hemophilia nonprofits in their bid to change hemophilia healthcare in their countries. It’s normally a three-day workshop, and that’s just one workshop! It could easily be two to three workshops, too. But we had just one day for now.

My visit in April was to assess hemophilia care in Puerto Rico, our “51st” state, and to see if there were ways we can help. The Hispanic community in the States is our largest minority population, and cities like Boston, where I am, have a huge Puerto Rican (and Dominican) population. Puerto Rico is never far from my mind. I followed up my April trip by writing a feature article in PEN (see our Archives to download!), which outlined the task head of APH to improve care. What naturally came from that was the idea of a workshop to jumpstart the new direction of APH.

But you can’t go in a new direction if you don’t know where you are going, and you can’t know where you are going unless you have a vision of where. I compare this process to mountain
climbing, which I have now actually done in climbing Mt. Kilimanjaro last August.
You need to know what your purpose is, your summit, where you will end up. You
need a map (strategy), proper gear (resources), a compass (values), a
contingency plan (flexibility), fellow-mountain climbers and porters (team),
and a mountain guide (coach).

Our team attending that day consisted of parents and patients with hemophilia who have been running the APH, and representatives from industry, including Novo Nordisk, Baxter and
Bayer, and a local specialty pharmacy, Axium.

The day started by examining limiting beliefs, because leadership requires that we break through these to
begin our climb. I recalled my limiting beliefs before climbing Kili: I’m too old, I’m not in good shape. We did some fun exercises that demonstrated how we are all shaped by childhood and our daily routine to think a certain way. We
may need to break out of the “box” to find solutions to hemophilia care in PR.

Johnny Márques and Jésus (Novo Nordisk) examine goals

Next, we discussed principles of leadership and each person in the room shared who his or her leadership model: who is the one person from history or even currently, personally, professionally or spiritually, who we look up to as a leaders, and why?

Then, we tackled principles of vision, but only briefly. This was a shame, because almost all leadership workshops start with creating a vision. From the vision, all things flow. There
just wasn’t time as we wanted to end the day with concrete goals. So we then
moved on to mission statement, which the APH already had. But it wasn’t a clear
one. We spent an hour taking it apart, examining it, challenging it and finally
the group reassembled, and put it back together, with half the words and five
times the power!

We worked through lunch on goals under five headings: organizational (including board development); medical; communication; lobbying; and patient programs. The goals were easy! We all knew what needed to be done. What was fun about this? Seeing how one goal couldn’t
be reached unless another goal was first accomplished. The group naturally prioritized
their goal. Goal #1? Get a phone number for the association! #2? Get business
cards for NHF’s meeting in Orlando in November!

The group was so excited about the new mission that they wanted very much to return to vision. This means we had to scrap the strategy session. But momentum was high and momentum is the fuel, the passion for change! I couldn’t let that go. Three participants had already come to me quietly and individually and said, “I know what the vision should be.” That’s the kind of leaders we look for.

So we spent the last session retuning to vision, and wow, did creative sparks fly! I never saw a group pull together a vision so quickly, so coherently, so beautifully. Three people offered vision statements, and they were all quite similar. With a little reworking, shaping,molding, the APH had a new vision. This vision would serve as a beacon, to guide them through the coming years as they navigate rocks, hills, bad weather
on their way to the healthcare summit.

I was very proud to serve these remarkable and dedicated people. I hope we are paving the way for the APH to soon join NHF as a chapter, and start opening the doors of communication to a stronger community and better medical care on the island. Care there is very good, but there is lots of room for improvement. And together as a team, the APH will serve as effective advocates—in turn, “mountain guides”— for all Puerto
Rican patients with bleeding disorders.

Thanks to all who attended, and especially
to Baxter Healthcare which sponsored the room and refreshments.

Visión

Una comunidad de personas con hemofilia y profesionales de la salud abogando en pos de sus derechos a un mejor cuidado médico de exelencia.

A community of people with hemophilia and healthcare professionals advocating in pursuit of their rights for an excellent medical care.

Un día para recordar

Laurie Kelley April 23, 2012

Blue skies, great food, pulsating music, and surrounded by wonderful people with hemophilia. A day to remember in Puerto Rico.

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.

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 I 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, Johnny and Tammy Marquez, the husband and wife team who head up the Association Puertoriqueña de Hemofilia (APH), and I 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.

La Vida Hemofilia: A Visit to Puerto Rico

Laurie Kelley January 23, 2011

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.

Overall, the children looked great, well cared for and very happy. We brought some of our books in Spanish, and hope to send more materials.

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!

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 unforgivable. 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.

Asociación Puertoriqueña de Hemofilia (APH)

20/20 Vision in Puerto Rico

Un día para recordar

La Vida Hemofilia: A Visit to Puerto Rico

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