National Hemophilia Foundation

WFH Congress: “Life chose this for us”

Laurie Kelley July 25, 2016

This week, for the first time in 26 years, the World Federation of Hemophilia is holding its biannual Congress on American soil. Gathered in Orlando, Florida are about 3,000 healthcare workers, patients and representatives from patient national organizations who want to learn from each other to advance care for bleeding disorders in their countries. Tonight was the opening ceremony, much toned down from years past. The focus was entirely on the 75% of the world’s 400,000 with hemophilia who have little or no access to care. What a huge change! The WFH–and the NHF, which held its annual meeting just last week–are together committing to help the world’s poor get access to the medication they need. This is the first time the NHF and WFH are holding meetings back to back, creating the largest gathering of bleeding disorder patients in history.

A crammed, enormous audience sat quietly listening to interviews with four speakers during the opening ceremony: Alain Weill, president of the WFH, and Jorge de la Riva, chair of NHF. Then, Alain Baumann, CEO of WFH and Val Bias, CEO of NHF. Jorge’s opening speech was passionate and focused on what he experienced when his son was born with hemophilia 21 years ago. “I am willing to fight for my son with my dying breath, for his health, his future, his life,” he revealed to the crowd. “Life chose this for us,” he remarked, but hemophilia would not dictate their life. Jorge acknowledged that his son is privileged to grow up with plentiful access to factor, but is cognizant of the underserved globally. He quoted Olympic skater Scott Hamilton, who also had a chronic disorder: You can succumb to it, adapt to it, or evolve and become better because of it. This latter is what we want to focus on in our community. Evolve. Jorge added, “It can be a gift, which can spur you to action, for something bigger than ourselves.”

At Save One Life booth: Martha Hopewell (executive director),
Agnes Kisakye (Uganda), and Usha Parasarathy (our India liaison)

That “bigger than ourselves” needs to be the developing world, where children suffer daily from untreated bleeds. The WFH showcased a film (produced by Patrick Lynch of Believe Limited) which portrayed a mother and a young man who grew up in Africa. Over and over the mother said, “I’m tired.” Tired of pain, of sleepless nights, of living day to day. It’s for them that we work so hard at the WFH, at Project SHARE, at Save One Life, to find ways to bring them care, to help them gain access to factor so they can live normal lives. I’m truly pleased to see that WFH is working now in tandem with NHF to bring care to other countries. And we at LA Kelley Communications will also work more closely with NHF, WFH and the Novo Nordisk Haemophilia Foundation to offer what we can. We’ve been assisting developing countries for 20 years, since 1996, and it’s amazing and gratifying to see all the groups coming together. For only together can we solve the problems of bringing factor and treatment to all.

We have four days of meetings, symposia and networking ahead of us. Then two weeks from today, I start my ascent up Mt. Kilimanjaro! Why? To fundraise for Save One Life, to bring attention to the plight of the poor in developing countries with hemophilia, to summit and unfurl our banner on the highest peak in Africa, and the highest freestanding mountain in the world. It’s a metaphor for our work in other countries: a long, hard climb with no amenities, but the view at the top makes it all worthwhile.

Fun scenes from close of NHF Conference last week:

Bill Cosby: Who Knew?

Laurie Kelley November 23, 2014
In the 27 years I’ve been in the hemophilia community, I’ve seen us searching for celebrities with ties to hemophilia. For spokespeople, supporters, to help us raise awareness. We’ve come close a few times, but no celebrity we know of actually has hemophilia or has a child with hemophilia.
Last week we showed how the Beatles had a brush with hemophilia. Now our friend Richard Atwood has uncovered another connection: Bill Cosby. Who knew?
Richard writes a review of a book on Cosby:  William Henry Cosby Jr., or Bill, was born in
Philadelphia on July 12, 1937. He was the eldest of four children, one of whom
was epileptic, born to Anna and William Cosby. The sometimes fatherless family
lived in the projects in a poor district of North Philadelphia. As a child,
Bill was shy and used humor to gain acceptance. Though he was admitted to a
high school for gifted students, Bill did not fit in and transferred. After
being held back for the 10th grade, Bill dropped out of school and later at 19 joined
the navy. While serving as a hospital corpsman, Cosby earned his high school
diploma. Older and more serious, Cosby next enrolled at Temple University where
he ran track and played football. He also started earning enough as a stand-up
comic to drop out of school. In 1963, he met Camille Hanks, a psychology major
at the University of Maryland, and the couple married on January 25, 1964.
Cosby also performed for the first of many times on The Tonight Show in 1963. Both live on stage and recorded on vinyl, Cosby presented his comedic monologues that created a mythical childhood blending fact and fiction. Beginning in 1965 for three years, the television series I Spy was groundbreaking, and Emmy award winning, for the young actor. That same year, the first of his five children was born — Erika was soon followed by Erinne, Ennis, Ensa, and Evin. Cosby’s interest in teaching children through documentaries and television programs led to his enrollment at the University of Massachusetts to earn master’s and doctorate degrees in education in 1976. More television series, cartoon series, commercials, records, movies, and books, plus his stand-up comedy tours, increased his celebrity status, income, and awards, but not without some controversy. His humor offended some, and Cosby could not please others for his perceived lack of involvement in the civil rights movement. Richard notes that this friendly biography of Cosby glosses over any personality difficulties, such as being irritated by continual questions about race.
As a celebrity, Cosby helped raise funds and served on advisory boards for organizations such as the American Cancer Society, the American
Heart Association, and the Black Film Foundation. Sometime before 1971, Cosby was also chairman of the National Hemophilia Foundation. (pp. 91-92).
Representatives of NHF could neither confirm nor deny that Cosby once held the title of chairman of NHF. The December 4, 1969 issue
of Jet magazine reported that Cosby was named honorary chairman of the National Hemophilia Foundation, a more likely distinction for his fundraising role.
The book is by Ronald L. Smith, 1986, Cosby. New York, NY: St. Martin’s Press, 181 pages. Celebrity is a double-edge sword. Now, with allegations of sexual misconduct  by Cosby flooding the media, it’s probably a good thing there are no ties with NHF any longer.
Great Book I Just Read
It’s So Easy and Other Lies [Kindle]
Duff McKagan
McKagan tells the interesting, shocking and even poignant story of his rise from obscurity to incredible fame as a founder of Guns N’Roses in 1984, when he answered an add for a bass player by someone called Slash. Only 20 years old, naive and shy, he was thrust into the world of music industry sharks, massive egos, crazed fans, brutal travel schedule… and drugs. It’s hard to overestimate the impact the band had on his life: dubbed the most dangerous band in the world, headed by a seemingly ego maniacal front man, Guns N’Roses would sell more than 100 million albums. What makes this story so different than the ones I read by Slash himself and Chuck Negron recently, is the tone and the obvious depth McKagan has. He is a sensitive soul who loves his mother. He grieved when fans were crushed during one of their concerts. He isolated himself when he became addicted, sought help, and soon became clean; he buried himself in reading the Classics, shunned women, took up mountain biking (great section to read), became a devout martial arts student, and most amazingly, went to community college, then college to complete his degree with the enthusiasm of a child. It’s hard not to love this guy and applaud his amazing come-back and story. Wonderful read. Four/five stars just for heart.

Celebrating Life at NHF

Laurie Kelley September 29, 2014

With my heroes Vaughn Ripley and
Barry Haarde
 

The beautiful speech given at NHF by chair Jorge de la Riva stressed caring, and the dangers of indifference. Jorge, the father of a teen with hemophilia, deftly drummed home by a quotation from Holocaust survivor Elie Weisel, whose book Night, I just reread a few weeks ago:

 

“The opposite of love is not hate, it’s indifference. The opposite of art is not ugliness, it’s indifference. The opposite of faith is not heresy, it’s indifference. And the opposite of life is not death, it’s indifference.” ― Elie Wiesel

 
How appropriate to use Weisel to remind our community that if we do not watchdog our own interests, we may be hurt–again. And this is why the theme of this year’s meeting was “Nothing about us, without us.” More and more, NHF (and HFA and other groups) are steering the interests of the community, from research, to data collection, to blood supply safety, to genotyping. We’ve come a long way in 20 years, and paid a hard price.
 
Derek Nelson and Chris Bombardier

Val Bias, CEO of NHF and person with hemophilia, gave a speech on the many and exemplary accomplishments of not only the NHF but of various groups and individuals in our community. During the videos shown, I thought instead of two people who have done extraordinary, history-making things in our community, just this year—Chris Bombardier, the first person with hemophilia in the world to conquer four of the seven summits. And Barry Haarde, who has now ridden his bike three times across America, to bring attention to the public of hemophilia and HIV. It’s nice that we showcased who we did, but Chris and Barry volunteered weeks of their lives to do something no one else has ever done, which are extraordinary feats even without hemophilia!

We did acknowledge them, at the Save One Life Celebration on September 17 at the Intercontinental Hotel in Washington DC, just before NHF kicked off. It was a lovely event, with about 77 attendees, including donors and sponsors. We honored special people who have helped make Save One Life a success so far:

 Over 1,300 people with hemophilia in 12 countries who live in poverty supported directly with financial aid 80 scholarships to foreign individuals since 2012 8 micro enterprise grants in 2014
Over $1.5 million in direct aid!
 
Laurie with friend and colleague Val Bias, CEO of NHF
 

All this goes to people who live on the fringe of life, the poor, the suffering, in places like India, Zimbabwe, Pakistan and Honduras. And we honored Chris and Barry who have raised so much money for us. And our Inspiration Award went to Mark Skinner, former NHF president, WFH president and current WFH USA president (and personal friend) who has inspried me for many years with his brilliant insights, his compassion for the poor and his endless volunteerism. Accepting the award for him was Mike Rosenthal, executive director of WFH USA. We were surprised and pleased to see Doug Loock in attendance, who, back when he worked for the American Red Cross in 2000, gave us our first grant, and was the first supporter to help us!

 

Thanks to NHF for allowing us to hold the even at their event (thanks, Val!); and to ASD Healthcare (thank you, Neil  Herson!) for being our major supporter of the event. Also thanks to Baxter, Novo Nordisk and CVS Health for supporting the event.

 
Best news of all? We picked up 30 more sponsored children as a result! 
 
If you want to learn more or support a child, please visit http://www.saveonelife.net
 
 
 
 

 

Laurie with Neil Herson, president of ASD Healthcare, accepting award for Chris Bombardier
Usha Parasarathy accepting award for Program Partner of Year
 

Great Book I Just Read
Blood Meridian [Kindle]
Cormac McCarthy

The author of No Country for Old Men does it again. This is a masterpiece, an American classic, written with such skill and depth that you cannot skim, cannot rush; it has to be savored, thought about, explored. The main character, a young man only referred to as “the kid,” runs away from home in the south and heads west in the 1800s. He meets many groups and characters, but ultimately joins a scalping posse, intent on capturing as many Indian scalps to sell as possible.  Like many of McCarthy’s stories, the theme is bleak, desperate, dusty and desolate, like the land the kid crosses. The main theme seems to be that evil lurks everywhere: there are no good guys or bad guys in the Wild West: just survival. And every single person, whether Indian, white, male or female, harbors evil deep within in the quest for survival. It’s a somber read, but the writing style alone is like a delicate fabric of words, woven so that you see no seams, only a beautiful, dark, and captivating cloth; worth reading if you want to read something by a master. Five our of five stars.

Hemophilia Awareness Month

Laurie Kelley March 3, 2014
In the US, this is Hemophilia Awareness Month, a chance for us to let others know who we are and what we need. Our community just did that last week on Capitol Hill, storming the hallowed halls and meeting with state representatives and senators when possible, to inform them about bleeding disorders and mostly about our funding needs.

I participated for the first time last year and loved it. An illness kept me away this year (all better now!) and how I missed it! I was so impressed with the event. It’s a chance for all of us, well known and not so well known, to share our stories. In fact, it’s most impressive when the average mom and dad, and even their children, meet with Washington folks to tell them about life with hemophilia.

Visit the NHF website (www.hemophilia.org) or HFA website (www.hemophiliafed.org) to learn more.

Speaking of HFA, what a fabulous website they have! And their annual meeting is coming up on March 27 in Tampa, Florida. While there are no scholarships left to support attending, if you can at all try to attend, please do. It’s a very different flavor than the NHF events. Both are great, but different.

What can you do for Hemophilia Awareness Month? First, learn more about the disorder yourself. It’s hard to have others appreciate what you endure if you don’t have a ready and coherent “script.” I was on Facebook most of the weekend contacting the many people who have reached our to me this past year, sorting out who is actually related to hemophilia, to keep them as friends. Some are first-time parents of a child with hemophilia and I am delighted to send them our educational materials.

Second, check in on our website (www.kelleycom.com), as well as NHF, HFA, PSI (www.youneedpsi.org) and your local hemophilia organization. Make it a habit every couple of weeks to check out a new website. There are so many!

Try to attend a hemophilia event. It might be the HFA one in March, the NHF one in Washington DC in September, or maybe a local one near you. Meet families, meet physicians, meet factor manufacturer reps. The bottom line is–get active and involved! We need you and the world needs to know about hemophilia. Help pave a great future for your child starting this month!


Welcome to the Jungle, I mean, Marketplace

Laurie Kelley January 20, 2014

This past week I attended a useful and interesting meeting, NHF’s Social Worker Insurance Marketplace Workshop (funded by Baxter Healthcare and Pfizer Inc; thanks guys!).
Together with about 80 social workers from HTCs around the country, and some
chapter leaders, we listened to various consultants and government
representatives speak primarily about the “Marketplace,” the website of the Affordable
Care Act that allows people to choose a healthcare plan.

We’ve all heard about the difficulties in dealing with this website— healthcare.gov—such as the
crash, and various other glitches. The good news is that many of these glitches have been fixed; and now it’s time to get our bleeding disorder community on board. Healthcare insurance is mandatory now; all US citizens (with notable exceptions) must have insurance. The website is created to help people find the lowest cost insurance that also provides all their essential healthcare needs.

Crafty Posters were created to help us visualize; good idea, we needed the help!

There is plenty of assistance in navigating the website. We actually tried the website live,
and it was pretty interesting, and yes, we even got stuck once or twice! For
us, we were stuck trying to find out if our HTC hematologist was in-network.

Each website will have on-line or Internet guides, to help you live. They are called various
names: Assisters, navigators, certified application counselors, in-person assistance, marketplace call center, agents and brokers. Most people are used to calling them “Navigators.” (I can’t help but think of “Engineers,” a la Ridley Scott’s Prometheus)

Jim Romano, from Patient Services Inc (PSI), gave a
presentation about how PSI has been chosen to train qualified applicants to
become  Certified Application Counselors (CAC), to
help people navigate the Marketplace. This is truly a great coup for PSI, and I
can’t think of any other group better qualified to train. PSI will train CACs
in different states, and pay their fees (yes, you have to pay for the pleasure to become a CAC to help people navigate their state Marketplace! One point from an audience member who underwent the training: the training wasn’t very hemophilia-focused, and needs to be more focused.

Jim noted that there were still some difficulties to overcome in each state. Ed Kuebler, a social worker from Texas, slyly asked, is the difficulty level in some states… political? This garnered many laughs! Ya think?

There are many marketplaces, as each state as their own. All the marketplaces have different funding sources, based on what type of marketplace it is:

FFM: Federally facilitated marketplace

SPM: State partnered marketplace. The federal government has some role in this.

SBM: State based marketplace and the fed has no role in it.

How many people have enrolled since the site was unveiled in October?  By Dec 28: 6 million Americans gained coverage through Marketplace and Medicaid
2.2 million of those enrolled in private plans
80% received help in paying for premiums
53 million visits to healthcare.gov and state marketplace websites
11 million calls to the federal and state call centers
Different healthcare plans are designated by “metal.” The more precious the metal, the
higher priced the plan, but also the more coverage. Enrollment by Metal?
                  60%
are choosing Silver plans
20% Bronze
13% gold
7% Platinum
1% catastrophic plans

Ed Kuebler thinks we need more help than navigators (kidding–a gift from a friend)

There are still consumer problems using the Marketplace:
An inability to complete application on line

Applications get “stuck” (freeze) or lost

Info is not transmitted after the plan is submitted
If not sure you’re insured, call insurance company (not the website) to check
If you don’t pay 1st month premium by certain date, you will not get insurance!
Don’t despair! I found it actually fun to hop on Colorado’s state Marketplace and select a plan.

Michelle Rice (L), Mary Garvey (R) of NHF; Tiara of PSI (C): all great speakers and resources!

Another useful website is Marketplace.cms.gov, which has FAQs, tip sheets, paper application, and materials in Spanish. And Healthcare.gov, which does premium estimate, on line application. When you log on, you will see this banner!
Enroll by February 15 for coverage starting March 1
So contact your social worker for help if you are not yet enrolled; don’t miss the deadline!
Next week I will cover more of the NHF Social Worker Insurance Marketplace workshop.
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