Puerto Rico: Soy Radames

Lily Gomez delivering supplies to the family
Meet Radames Castillo-Toa, and parents Auraliz Martinez and Francisco Castillo. Real Americans with hemophilia who suffered catastrophic loss when Hurricane Maria struck Puerto Rico on September 20. Lily Gomez, a mother of a child with hemophilia who lives in Miami, visited the island to assess damage, meet families and return with a report and recommendations for aid.
Lily shares that the oldest son Radames described the hurricane landfall  as terrible. “Everything was flying around outside, and then inside our home we lost the roof. It was a long day.”
The father, Francisco, indicated that the family lost everything when part of the roof flew away, because everything got wet and the walls cracked.  They had to evacuate and go to his mother-in law’s home and try to wait for FEMA there.  In the aftermath, Francisco tried to cover the roof but the panels and the tarp he got are not enough.
“When it rains outside, it rains inside,” he commented. He added that an electrical pole flew away with the wind, leaving the family in the dark.  Fortunately, he was able to borrow a
generator to keep the factor refrigerated. They are back at the house now, but are in desperate need of a new roof. Each time it rains, everything gets wet again.

Lily said, “We found them retrieving water from a spring coming out through a PVC pipe on the side of the mountain.  He said he doesn’t know where the water is coming from but that’s the only water they have available for bathing, washing and toilets.  They boil the water when they need drinking water. He said he knows about the problems with contaminated water.  He said his wife leaves early in the morning to find drinking water.”

Communication is almost impossible, as there is barely any signal.  The family submitted a request to FEMA for a roof, but FEMA is overwhelmed too. The family is still waiting.  The father told Lily, “Thank God we are alive and working together to meet our needs.”

What to do? I am on the phone weekly with Kimberly Haugstad, executive director of HFA, wonder woman and also mother of a child with hemophilia. Hemophilia Federation of America has a disaster relief program, the only one of its kind for Americans with hemophilia, and probably this week we will confirm a plan to get funds to Radames and his family for a new roof. Imagine if your home looked like the photos below. Americans need to help Americans now, and our hemophilia community needs to start giving. During this month of Thanksgiving, it’s the right thing to do. www.hemophiliafed.org






Resiliency Key at HFA’s Symposium 2016

Jane Cavanaugh Smith (middle), with CoRe managers
I have known Laurie Kelley for more than 20 years and can’t begin to
count the number of times I have looked to her for education, resources, and
support.  So, it is such an honor to be a
guest blogger for HemaBlog. My name is Jane Cavanaugh Smith and I am a Biogen Community
Relations (CoRe) Manager. My son has hemophilia and we were fortunate to
connect early with our local chapter. This led to an unexpected and extremely
rewarding career with the New England Hemophilia Association, and later, the
Hemophilia Federation of America (HFA). When Biogen introduced CoRe Managers several
years ago, I watched with interest as their team grew. The fact that a CoRe
Manager’s sole job is to support our community—to listen, educate, connect, advise,
and serve–confirmed that Biogen was the place for me.
Jane speaking at HFA
At HFA’s Symposium 2016, held March 31 to April 2, the theme, “Together
We Are Resilient” beautifully captured the strength of our community because resiliency
is about bouncing back. Individuals and families have to regularly overcome obstacles,
but sometimes the challenges are overwhelming. That’s when we turn to each
other in the open, honest, and supportive environment that HFA provides. These
connections live on long beyond the Symposium. 
“Together We Are Resilient” was carried through the conference in a
variety of sessions and activities aimed to feed mind, body, and soul.
Knowledge is power and key to weathering rocky times. Activities included daily
Zumba sessions, aquatic therapy, yoga, and a Health & Wellness Lounge.
Session topics included women’s issues, advocacy, insurance, treatments, and
inhibitors. A few personal favorites include the Awards Luncheon, the
Remembrance Ceremony, the rap sessions, seeing kids in matching shirts and
holding hands, and all the hugs, tears, and laughs.

Biogen, we took the theme to heart, too. Each day at HFA, we tried to provide
families with new opportunities to meet, learn, and be resilient together. It
was a blast. The Chapter Challenge games brought out altruism and humor as
visitors tried to win donations for their local chapter. The Biogen Peer videos (click here, and here) showcased inspiring role models. Many visitors inquired about our therapies,
so it gave me and my fellow CoRe Managers countless opportunities to get to
know even more people in the hemophilia community. I like to think that
resilient people see meaning and purpose in what they do. I definitely see that in my fellow CoRes. We
build resilience by showing our vulnerability, empathy, understanding, and
appreciation, and gratitude for each other.

Jane interviewing Chris Bombardier
I was also honored to emcee Biogen’s Friday dinner program, Food for
Thought. I’ve never spoken in front of a large crowd, but I knew that I was surrounded
by friends. Our keynote speaker, Chris Bombardier, shared his inspiring story
of overcoming challenges despite long odds. Chris has severe hemophilia B but
is on a quest to climb the world’s seven summits. Hearing his motivation and
drive, he will surely complete the remaining two. 
Biogen “gets it.” They celebrated the power of positive thinking to
inspire our community. As the program came to a close, I looked over at my son
who is the source of my strength and hope. I am deeply thankful for this
community. Together we celebrate the highs and find comfort during lows. Together
we are resilient.
Biogen’s CoRe managers at HFA
To find a Biogen CoRe Manager near you, visit CoReManagers.com.

This blog was
sponsored by Biogen for educational purposes.
HEM-US-1012   04/16

Remembering Ryan

On April 8, 26 years ago, 18-year-old Ryan White died.
He is remembered in the bleeding disorders community for his extraordinary courage. Born with hemophilia, he was diagnosed with AIDS when he was only 13, in 1984. AIDS was not well understood at this time, and fear was rampant in the public. People thought you could catch HIV by shaking hands with someone with it, or just being near them. Ryan contracted HIV from his clotting factor, which at the time was not treated to destroy viruses. He posed no threat to anyone.
When his school tried to keep him from attending, Ryan and his mother Jeanne White Ginder launched a legal battle, and Ryan became a celebrity. And celebrities stood by him, including Michael Jackson and Elton John. He became the face of discrimination against those with HIV, and became an advocate for AIDS research and public education. He died in April 1990, one month before his high school graduation.
In August 1990, four months after White’s death, Congress enacted The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (often known simply as the Ryan White Care Act), in his honor. The act is the United States’ largest federally funded program for people living with HIV/AIDS. The Ryan White Care Act funds programs to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families. The legislation was reenacted in 1996, 2000, 2006, and 2009, and is now called the Ryan White HIV/AIDS Program.
Today, his mother Jeanne continues to advocate to spread Ryan’s message and story. 
For an excellent multimedia look at Ryan’s impact on the hemophilia community, visit HFA’s website

Pulse on the Road in Baton Rouge

Zoraida and Kelly before the presentation

Just a 90 minute drive northwest from New Orleans, the “Big Easy,” Pulse on the Road brought a sense of urgency to the 80 attendees in Baton Rouge, state capital of Louisiana, of our latest presentation on insurance. Over a warm lunch of chicken, potatoes and greens, we provided the history of insurance reform in the US, particularly as it affects people with chronic disorders like hemophilia and von Willebrand disease, and how payers continue trying to cut costs… and why.
Laurie Kelly and attendee
Shawn Whelan
As we did two weeks ago, I opened with the brief history of escalating drug and medical costs, showing how imperative it was that insurance companies find ways to cut costs. Michelle Rice, vice president of public policy and stakeholder relations at NHF and recognized insurance “guru” of our community, then educated about how payers would go about doing this. Restricted networks, higher co-pays, specialty tiers, prior authorizations–sound familiar? And each of these methods at best will impact your bottom line and at worst could impact your access to certain therapies you might need.
Speakers Michelle Rice (NHF), Kelly
Lynn Gonzales and Laurie Kelley
Finally we closed with an emotive and inspirational story by the indomitable Kelly Lynn Gonzales of Nevada, a woman with von Willebrand disease who fought tenaciously for her daughter’s right to treatment–and won! Not only the treatment for her daughter, but treatment for all with VWD in Nevada… and tremendous respect from the medical and insurance community.

Said Carl, an attendee with hemophilia, “I’ve heard and read lots of testimonials from people and their problems with insurance, doctors and hospitals. But these ladies really opened my heart on how some people are really neglected.”

Donnie Akers, former board member of Hemophilia of America, told us that this was one of the best presentations he has seen in the last few years. Thanks to all who made this a success, including the Louisiana Hemophilia Foundation, and Baxalta, for sponsoring this event.That concludes our year of Pulse on the Road! 
Laurie and Jan Hamilton,
founder of HFA
After the event, Zoraida and I drove to New Orleans to enjoy the sights, sounds and tastes of one of our greatest American cities. Admiring the Spanish wrought-iron balconies and old architecture, the “voodoo” shops, the jazz music pouring out of every street corner bar and the smells of Cajun cooking, New Orleans is like no other place in this country! We capped our day with a “Haunted Houses” tour in the dark. New Orleans has a rich history of hauntings, and the stories vary from when pirates roamed the streets, to Nicholas Cage’s purchase of a $5 million house, not knowing its gruesome history! He soon sold it.
We end the year with a pep talk! Read your insurance policy annually, document your insurance inquiries and treatments, watch for hidden costs, and put aside an emergency fund for unexpected escalating costs and to help pay for hospitalizations. Be vigilant!
See you next year! 

Voodoo Shop!
Louisiana Riverboat

Andrew Jackson Statue

Most famous haunted hotel: The
Andrew Jackson!

Meet You in St. Louie?

Many of you might know we have more than one national hemophilia organization. Most people around the world know National Hemophilia Foundation (NHF), which has been around for 60+ years.  But we also have Hemophilia Federation of America (HFA), founded during a crisis time, when at the grassroots level part of our community felt their needs were not being met. From a small group of interested consumers, it has grown to become a national grassroots organization with advocacy at its heart. I like its messaging and style: simple, direct, and proactive.
Since its founding, it has held annual meetings, well timed to occur opposite in the calendar to NHF’s meetings. The next one is in St. Louis March 26-28.
The meetings are much smaller than that of NHF, and so actually gives you a chance to mingle and meet so many people in a less formal atmosphere. I haven’t been to many, as I am usually traveling to Africa or Asia at that time (while the weather is cooler there!) but the symposia I have attended have always been causal, informative, and fun.
Try to go if you can! And check out HFA’s many programs and offerings. It has an excellent website!
For info: www.hemophiliafed.org

Great Book I Just Read

To Live is to Die: The Life and Death of Metallica’s Cliff Burton [Kindle]

Joel McIver
The incredible and mesmerizing story of a bass guitar legend who helped establish one of the first “thrash” heavy metal bands, Metallica. Cliff Burton was only 24 when he died in a tour bus crash in Sweden, when Metallica was just becoming famous. Burton was dedicated to bass guitar from an early age, mastered it like no other and experimented with it on stage in a way no other had done (listen to his lead in on “Anesthesia”). He was in many ways the soul of the band. With his jean jacket and bell-bottom denims, he didn’t fit the mold of thrash metal,  staying true to who he was at heart: a quiet, intense and musically talented young man. He brought Bach into heavy metal, helping to give Metallica its unique sound. His death left a permanent scar on the band. This is a well written, in-depth account of Burton, almost a memorial to a man who would have risen to great musical heights, but whose work is preserved forever in albums like “Kill ’em All” and the incomparable “Master of Puppets.” Four/five stars.
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