October 2015

A Nuthatch, A Martian, A Haitian

There’s something thrilling, affirming, even epic about saving a life. Perhaps it’s that feeling of hope you get afterwards, or a sense of personal power. Maybe just knowing that you did something that 
mattered to someone.

On Thursday I was working in my home, when I heard a distinctive “this-doesn’t-sound-right” squeak. A pet owner for 21 years, I knew that sound, and descending the stairs, saw my cat Tina with a nuthatch in her mouth. A quick hiss from me and she dropped it. The poor little bird: it was in shock. Mouth gaping, gasping, eyes blinking furiously, one leg twisted. I cradled it in my hands for a while to warm it, then hauled out the very handy and well used “critter keeper” plastic box, where all injured wildlife goes. I left the bird alone for two hours. When I returned, it was standing, flapping its wings, eyes bright and eager. Best of all, both legs seem to be functioning. I took it to the back door and opened the top. She flew immediately to a tree, upside down, which is what they do. 
I felt so serene, at peace, so happy that I didn’t have to decide the fate of this miniscule, delicate fowl.
That night, I went to see the movie The Martian, starring Matt Damon. (My ex-brother in law was his math teacher in high school–just a little personal trivia) It’s a survival story (my favorite genre) and sci-fi (also a favorite), but more than that it was a human interest story. It’s about an astronaut who is accidentially left behind after a wild sandstorm causes the rest of the crew to abandon the mission on Mars. His team is in the process of returning to Earth when they realize he’s still alive on the hostile planet. 
The real story is how everyone rallies to save his life, no matter the cost. At the high point of the movie, with David Bowie’s poignant and heart-warming song “Starman” playing in the background, you see everyone on earth watching the drama unfold, glued to their TVs and cell phones, while a space crew volunteers another 18 months of their lives to return to save the one they left behind on Mars. The Chinese sacrifice a proprietary and secret space project and offer it to the Americans to help rescue the astronaut.  In this massive global effort, you realize NASA will be spending millions, if not billions of dollars, time and energy to save this one person. Just one man
It’s worth it. You realize that you cannot put a price on one life. People will sacrifice sometimes their own lives to save others, will sacrifice money, time, personal pleasure. We somehow rise above our own needs and wants, above our differences, to something that we think is bigger than ourselves. 
It’s almost a challenge to be a better person  tomorrow than who we are today.
A few weeks ago I heard about Jamesley, a 16-year-old with hemophilia in Haiti. He lives in a home for children, a place where children are placed when the parents can no longer care for them. He has an open, suppurating wound, the result of an operation. He needs factor. Project SHARE has sent factor to Haiti before but the problem is, we don’t know what factor deficiency he is. And he lives in a rather remote place. Haiti has poor infrastructure and many hills.
This was beyond my problem-solving skills so I sent a mass email out to all the people I have met since I first went to Haiti in 2002. Together, we rallied. What can we do? Bring Jamesley to Cap-Haitien in the north, where there is a doctor I know? No, there are no labs for hemophilia testing there. Should we bring him to the Dominican Republic, where he can be tested at the Robert Reid Cabral Hospital? I have many friends there. But he doesn’t have a passport, and the 8-hour bus ride would be difficult; who will accompany him, who will pay for him?
Enter Dr. David Andrews, a pathologist from University of Miami, who knows a lot about hemophilia and testing for hemophilia. Bring a sample of the blood to Miami and I’ll test it, he said.
How to get the sample to Miami?
Granted this isn’t like rescuing someone stranded on Mars, but then again, this is real life. 
Yesterday, a medical volunteer team from the States just happened to be nearby his village. They took Jamesley’s blood sample at 10:30 am, packed it up, and by 6:30 pm landed in Miami. Dr. Andrews, on his day off presumably, drove to the hotel to pick up the sample and should have an answer by the time you read this blog posting.
It seemed to difficult at first: so many options and so many obstacles. Then, it suddenly seemed so easy, when everyone worked together… all for the sake of one orphan. So worth it.
When I know what his factor deficiency is, then I can send the factor to the orphanage, under the supervision of the attending physician, and Jamesley can heal.
There are wars raging, natural disasters, a massive refugee crisis…. often the news is overwhelming. I think for me this is why focusing on one life is so fulfilling: we helped one. We saved one. We did something. Instead of feeling powerless, we felt useful, needed, fulfilled.
I went to bed last night happy as a lark… or a nuthatch.

Great Book I Just Read

To Reach the Clouds: My High Wire Walk Between the Twin Towers [Kindle]
Philippe Petit

The book on which the excellent movie “The Walk” is based, Petit provides a breathless narrative, as if it is happening right now, about the inspiration, the intricate and complex planning and the execution of the most daring high wire act in history. The planning–with myriad things that could go wrong and did go wrong–which took months, tremendous dedication and stealth, is so in-depth and exhausting, it makes the high wire walk look like– well, a walk! A must read for those who want to see how a vision can motivate others (who have nothing to gain) to action, how strategy can lead to perfect execution of plans. The writing is entertaining, witty and past faced. Petit is a creative genius in many ways, Five/five stars.

Pfizer’s New Video Series Can Help You Have More Constructive Conversations

Dawm Rotellini of the NHF introduces Constructive
Conversations Video

Have you ever had a difficult discussion about your or your
loved one’s hemophilia? Have you gotten into a heated dialogue about
restrictions? Do you wish you had some strategies to have more productive
interactions with your physician or hemophilia treatment

Effective communication can play a large role in
successfully managing hemophilia, navigating difficult discussions during times
of transition and building strong relationships between patients, caregivers
and healthcare teams. 
A new educational video series from Pfizer Hemophilia
called Constructive
aims to provide the community with tools and resources to
encourage more caring, constructive, and effective conversations among those
impacted by hemophilia.
Originally introduced by Pfizer at the NHF annual meeting,
the Constructive Conversations video series allows you to review tips on
communicating more effectively in the comfort of your home. The videos portray
real-life scenarios that you may face, and show you how to construct a
conversation differently to help achieve a better outcome. Each video uses two
different approaches: one conversation using a more commanding style also known
as a “directive” approach and the other conversation using a more caring,
enquiring style also known as a “constructive” approach.
Visit www.HemophiliaVillage.com today to watch the videos
and sharpen your communication skills! 
And check out Our Hemophilia
on Facebook to learn about Pfizer offerings.
The content of this post is provided and sponsored by

Good Book I Just Read

The New Single
Tamsen Fadal 

My teammate Zoraida bought this for me as a present. An easy read, snappy and filled with good advice, Emmy award-winning TV

producer  Fadal assesses her life pre-and post-divorce and what she has learned. While mostly geared, I think, for someone new to self-assessment, probably for the 20-30 year old crowd (sad to think they would be divorced then!) as some concepts are really obvious (eat well, get enough sleep) it’s still a great reminder on how to be yourself, care for yoruself, develop yourself and not lose your self in a relationship. Women try way too hard to please, sacrifice a lot in the name of relationship, and maybe that needs to change? Two/five stars.

Mountains of Music

I love music of all types: from Moussorgsky to Metallica, Bach to Bee Gees, Disney tunes to the Doors.  I learn more and more how musically talented are so many members of the bleeding disorder community. Perhaps music becomes an escape or a way to express deep feelings? Below, Richard Atwood of North Carolina, who does “Richard’s Review” in our newsletter PEN, profiles a talented family from West Virginia, from a book he’s uncovered.

Richard writes:
For 5 generations, the Currence
family lived in High Germany on the Randolph-Upshur county line in West
Virginia. Jimmie Currence (1932-1992) and Loren Currence (1934-1987) grew up in
a six-room house that was over 4 miles from a hard-surfaced road. The nearby
one-room school house in High Germany housed 45 students over 8 grades. 
was no family history of hemophilia until an older brother died when 2 years
old after he bled out from a bumped nose. Jimmie and Loren also had hemophilia
but were not diagnosed until their twenties. They had 4 normal brothers and 5
sisters. Jimmie and Loren never even visited a doctor until their teens. They
had no ice for treatment and nothing for pain. For treatment, the brothers used
high-powered liniments from Blair products for hemorrhages into their joints.
Before factor VIII, the brothers received blood transfusions. Loren once
received 16 pints of blood in 36 hours for a kidney bleed and Jimmy, as a
teenager, was given a pint of blood from his brother-in-law to treat a stomach
After Doctor Mabel M. Stevenson, a hematologist at Morgantown University
Hospital, examined their blood, the brothers received a diagnosis of severe
classical hemophilia. The brothers considered themselves to be severe
hemophilic “bleeders” with near zero clotting factor levels.
Jimmy Currence explained his bleeding episodes: “We would get all hemorrhaged in
the joint. We would be swollen up till we couldn’t do a thing, just couldn’t walk. Even take spells of bleeding internally. Internal
bleeding could be either inside you or it would be internally in a joint or
under the skin—caused
hemorrhaging like that. And then that way it would lay you up.” (p. 198).
Every member of the Currence family was musical, either playing
musical instruments or singing, though none were trained. The children would
listen to the battery radio, or hear live entertainment, and then pick out the
tune on a guitar, fiddle, or mandolin. The brothers Jimmie, Loren, Marvin
(called Shorty), and Buddy, along with Malcomb Pastine, a nephew who also had
hemophilia, formed the Currence Brothers Band. The band played gospel and
bluegrass music, and even produced six long-playing recordings of their music.
Loren played the guitar, sang, and managed the band. Jimmy played the fiddle,
and was even a four-time fiddle champion at the Mountain State Forest Festival
in Elkins, before elbow bleeds forced him to play the banjo.
Jimmie and Loren could never find full-time employment or get
insurance. They received Supplemental Social Security and the state paid for
their medicine as they could not afford it. Both brothers married, and each had
three daughters.
The family was profiled in Goldenseal magazine in the 1980 article ‘The Currence Brothers: “The Spark to Play Music,” written by Jack Waugh and Michael Kline.The profile of the Currence brothers is augmented
with 5 photographs. Begun in 1975, the magazine Goldenseal is published
by the West Virginia Division of Culture and History. It is a journal for local
cultural traditions and life experiences, including music, in West Virginia. 
John Lilly, editor, 1999, Mountains of Music: West Virginia Traditional Music from ‘Goldenseal. Urbana, IL: University of Chicago Press. 235 pages.

You Can’t Always Get What You Want

That was the tune sung at the latest Pulse on the Road in Baltimore,
Maryland on Friday, October 2! Speaking at the 12th Annual Insurance and Reimbursement Conference—an NHF gathering of social workers
and executive directors of local hemophilia organizations— speakers Laura Summer,
health care policy consultant, Michelle Rice, vice president of public policy
and stakeholder relationships at NHF, and yours truly spoke to this group of our nation’s
frontline defense, the people who handle insurance issues every day. Indeed,
when I asked the social workers how much of their time do they spend on
insurance issues, even I was shocked to hear “75%.” Health care is complicated
and complex; workshops like these help everyone share the journey, learn from each
other, and learn new things.

One way we learned was from role playing! We had two volunteers pretend to be consumers calling the payer (Michelle). Michelle tested them by deflecting their questions, providing wrong information and putting them on hold–a lot. 
Michelle really
set the tone. “For years we’ve been asking to be treated like everyone else.
Well guess what? Now we are!” Payers now look at us not the helpless victims of
a genetic disorder, but as patients with medical needs who have bills that must
be paid. Unfortunately, our former reasoning of “But, we have hemophilia! We’re
special!” is not going to work anymore. We need to get smart, savvy, and
Michelle asks: Is
your request to the payer a question of access [to a particular brand of factor
or HTC or home care company]? Or is it a preference issue? “We can’t spend time
on preferences anymore. If you want homecare company A and not B, and B is not
in network, then you must use A, or pay a lot more for B.”
She reminded us
that if your desired factor brand is not on the formulary (the list of drugs
that the payer will cover), that doesn’t mean you aren’t going to get your drug;
you’ll need documentation from your medical provider, and it will cost you
more. And if your factor is not on formulary, check the major medical side of
our policy—it might be there, and might be covered.
Bottom line is
we need to accept a new reality in insurance.  We need a personal budget for out-of-pocket expense each
year. We need to read our insurance policies carefully and completely, each
year. We need to open and read those letters from the insurance company. No
short cuts!
stressed that we must take responsibility for our own insurance situation, even
as the NHF, HFA and our local organizations continue to advocate for us on many
levels. It starts with each of us first and foremost. Start with your policy:
if you have private insurance, speak with your human resource department to get
answers. If on Medicaid or Medicare, visit your social work at your HTC.
You can’t always
get what you want, but you can read, document, question and hope! Working
together, we will get many things need and maybe even want.

Good Book I Just Read
Selling the Invisible by Harry Beckwith

Written in 1997, this book is a bit dated as it doesn’t mention email, cell phones or social media. But still, there are many good lessons to learn that are timeless classics. This quick read teaches why focus groups, value-price positioning, discount pricing, and being the best can fail; the vital need to focus on one message; the one emotion that most influences why your prospects will buy from you. Three stars out of five.

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