Earthquake in Nepal

I was shocked to learn Saturday morning that a powerful earthquake struck
Nepal, the small, peaceful republic that is cradled in the Himalayas. With
eight of the world’s ten highest mountains, Nepal is rift with geological
wonders, which draws mountaineers and adventures seekers annually.
Officials this morning are estimating over 4,000 have died, with
many more injured. The quake is Nepal’s most powerful in decades, and struck 80
kilometres east of Pokhara, about half way between the town and the capital
Kathmandu.
Neeraj, who has hemophilia
I know many people in Nepal. The hemophilia community there is a
tight knit group, effective and efficient, and dedicated to patients. The Nepal Hemophilia Society (NHS) was
formed by a volunteer group of patients with bleeding disorders and parents in
1992. There are an estimate 3,000 people with hemophilia in Nepal, but only
several hundred have been identified.
I last visited in 2001, and was impressed then with how they operate.
Of course, they don’t

buy factor. Nepal is one of the poorest countries in the
world, ranking  145th
of 187 countries on the Human
Development Index
(HDI) in 2014. Project SHARE has been donating
factor for many years to help.

Save One Life also operates in Nepal. We sponsor many children, and
look forward to sponsoring a camp for them next year. In fact I was just on the
phone last week with colleagues, discussing a trip to Everest’s base camp. Base
camp was struck by an avalanche as a result of the earthquake, and 18 people
died. This is the worst single-day disaster in Everest’s history.
Sponsor Sandeep!
Sponsor Pranip!
We
hope to hear soon from our Nepalese colleagues and reach everyone who sponsors
a child in Nepal to let you know how they are doing, and to set up a special
fund if needed. There are two children from Nepal waiting for sponsorships, if
you want to do something today, now to help. Please consider sponsoring those children, to help support them, in a country that is was already having trouble
supporting its people, and now is crushed by the aftermath of this massive
earthquake.

April 17: World Hemophilia Day!

Friday was World Hemophilia Day, celebrated in honor of the birth date of Frank Schnabel, the founder of the World Federation of Hemophilia, based in Montreal, Canada.

All across the globe hemophilia organizations arranged to have famous landmarks lit up in red at night in solidarity. As well, many people in various companies and nonprofits wore red, as a sign of solidarity.

I was asked to speak to employees at the new Novo Nordisk plant in Lebanon, New Hampshire, where  the new product Novoeight, is being made. It was a lovely two hour ride from my home in Massachusetts. I had a quick tour of the new plant by none other than Scott Evangelos, a process scientist, but also a friend for 30 years, who ironically just happens to have been hired last September by Novo Nordisk. Not only is he a family friend, but his wife Sara, has been my editor for 20 years. All the things you read from us, from books to newsletters, have been vastly improved by her gifted skills in editing.

WHD in Tunisia

I spoke about hemophilia, its complication, treatment and of course inhibitors, as Novo Nordisk makes an inhibitor drug, Novo Seven RT. Half of my talk was dedicated to the 75% of our community which lacks treatment, and I shared slides of some of the families I have met on my journeys.

WHD in Pakistan
WHD in Seattle!

Unlike everyone there, who all wore read, I wore white, to show my solidarity for those who do not get treatment. Due to company policy, I was unable to take photos! It was a lovely event, and I hope the employees have a better sense of our community, and their new role in it. It was a pleasure to tell them “Welcome to our community,” for they belong as well as the patients.

Thanks to Sue Clark for arranging this great event!















Great Book I am Reading
Stiff: The Curious Lives of Human Cadavers [Kindle]
by Mary Roach

Mary Roach has done it again. Taken an offbeat topic–what happens to the human body after it dies?–and at once educates and entertains. From the ancient Egyptians, to medical research, to cosmetic surgery to crash tests, she shows us all the ways we use corpses. Roach interviews and gets the facts and stories, but also inserts herself in the story and her thoughts, which are witty and hysterical. She is a gifted writer with tons of curiosity. The human corpse has contributed much to our understanding of the body and world, making our lives better and safer. Read this to learn, to grow in appreciation and for a good laugh! Four/five stars.

Check the Pulse in Illinois!

L to R: Zoraida, Michelle, Laurie, Kelly, Elizabeth
Chicago, Illinois was the location of
our first Pulse on the Road in 2015. The
Bleeding Disorders Alliance Illinois
was our gracious host for this
day-long event, attended by 70 families.
Laurie with Audrey Taylor, 2002
It was a joyous day to be alive and together
after two tragedies had just struck: Illinois suffered about 14 tornadoes the
day before, which leveled the town of Fairdale, causing two deaths. The
community also lost the beloved Audrey Taylor, a sassy and compassionate nurse
at Rush University Hospital, one of the main hemophilia treatment centers.
Audrey was a great colleague who I always loved seeing and her death at age 51
is just devastating for all.
Our guest speakers included: the
fabulous Michelle Rice, vice president, Public Policy and Stakeholder
Relations, National Hemophilia Foundation; Kelly
Gonzalez
, a Nevada woman with von Willebrand disease, teacher, and now
advocate; Elizabeth Stoltz, senior manager, Market Access, Baxter Healthcare; and Laurie Kelley, yours truly!
Mona and Bob of BDAI, with Laurie Kelley
Executive director Bob Robinson welcome
everyone and introduced POTR, and me. I presented “Where We Were, Where We Are
and How We Got Here” to explain why the Affordable Care Act (ACA) come into
being, and how hemophilia fits in. With a few stats, I showed that skyrocketing
medical costs, particularly in specialty drugs (which factor is), was straining
state budgets; it was only a matter of time before private insurers caught on.
Looking to cut costs, insurers turned to increasing prior authorizations,
formularies, decreasing choice of factor provider, and more. As payers scramble
to cut costs and states try to cut their bloated budgets, the bleeding
disorders community is facing more and more restriction to access to medical
care and factor.
Michelle Rice, VP at NHF
Laurie and Zoraida with the DePaz Family
Enter Michelle, who explained in much greater depth how
this was happening, and gave great examples of where this was happening in our
country. After lunch, Kelly gave a lively and impassioned chronology how she became an advocate, to get access to medical care and the right factor brand for her
daughter Jacey, who accompanied her to this meeting. It was an incredible story that took 30
minutes, and left the audience in tears! But Kelly triumphed, and became a role
model for other parents fighting for access to care for their families.
Genny Moore earned $20 with our Q&A!
We tried
something new! Role playing! With Michelle acting as an insurance rep, we had
two volunteers come to the stage and act as patients, calling their insurer to
find out about 1) whether factor was covered, and 2) if their HTC was covered
under the plan. Theresa and Chrystal did a great job asking questions and not
accepting Michelle’s runaround answers. The audience got to weigh in an offer
what they thought the ladies did well and what they might have done
differently.
Finally, Community Forum, where our panel of experts field questions from the audience
on any subject, from their personal healthcare situation to state issues to
national affairs in insurance. We had some great questions and responses.
Amigas!
Thanks Zoraida Rosado, who planned our
trip so well, set up displays, tables and handouts, and dissembled everything;
to Michelle and Kelly for sharing their expertise and their weekend; and to Bob
and his BDAI team, to the Spanish translators, and to Baxter Healthcare, for providing the funding for all
the Pulse on the Roads, now in our 7th year!
Please
check www.kelleycom.com by December to see where we will be in 2015!
Good
Book I Just Read
Metallica:
Justice for All
[Kindle]
Joel
McIver
Metallica
is one of the best selling bands in history, and is often said to have defined “thrash”
metal. This is a look at their origins, spectacular rise, wayward path, and an in-depth look
at every song and every album. Probably a book for fans only, and not the best
book on rock I’ve ever read. The book gets terribly bogged down in detail, as
though it’s a ledger, schedule or chronology. Is it essential to know every city the band visited on every single tour? (It’s exhausting to
read! How did they travel so much and so often?) Much of the information is
gleaned from interviews appearing in magazines, and then pulled together to
weave some kind of story. There are layers of information missing, such as the
drug and alcohol binges throughout the band’s career, which McIver seems to
gloss over. Incredible detail on every song, how it compares to others in each album, with
McIver voicing his opinion on each song. Some of this is interesting, but you
lose the focus of the book and get sidetracked. I’m a huge fan of Metallica,
but found this book a bit tough to get through. Choppy writing, too much detail
here, not enough there. Three/five stars.
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