Hemophilia Federation of America

Your New Secret Weapon

For me, documentation has always been key, and I’ve kept everything from my past. 
Actress Diane Keaton

I can’t say I’ve kept everything from my past, but I’m pretty good at recording things. Part of that is the journalist in me, part of it is the economist I used to be. When my first child was born with hemophilia, it seemed natural to me to use a spreadsheet to record every single bleed and outcome, log in every single vial of factor with lot number and assay size, and record every single doctor’s visit. I thought everyone did that. Data is valuable.

Data and documentation may also be your secret weapon in the new health care environment. None of us really knows yet how the new administration will affect the Affordable Care Act, but it’s trying to repeal it. While we wait for the dust to settle, the single best thing you can do right now, if you are not already doing it, is document everything. Every bleed. Every vial of factor. Every doctor’s visit. Every Explanation of Benefit  (you are receiving them, right?). Every insurance paper. And above all, every phone call to your insurance company.

As someone who never documented phone calls, I learned the hard way how important this is. About 12 years ago some unsavory characters (not from the hemophilia community) had a business run-in with me and it required legal mediation. As my lawyer and I sat across from them and their lawyer, I was shocked, annoyed and impressed that they had documented every single phone call we had ever made, and were even quoting me! Even while I fumed, I thought, What a great idea. Note to self: document all calls.

And so I do. It’s been helpful for recalling details, promises, and problems. It impresses people. It frees me up to not try to remember everything later on.

You don’t need to document to impress people, but you will be glad if you document your insurance calls. You may one day need these notes to waive a fee, to get a reimbursement, or to file a complaint. Something tells me we’re in for a lot of patient complaints down the road!

Hemophilia Federation of America has made documentation easier. Their Patient Insurance Log Book has pages already set up for you to log in calls. And at the end of the book is a complete glossary of insurance terms, and even the procedures to file a complaint for each of the major insurance companies! 

So get your secret weapon ready: order a Patient Insurance Log Book and record everything regarding insurance. It can save time—and money—someday.

Order the Patient Insurance Log Book at www.hemophiliafed.org or call 800-230-9797.

United by Blood: HFA Meeting in Tampa

Laurie Kelley, Jeff Johnson, Barry Haarde

Grey skies and a chilly breeze couldn’t dampen the spirits of those attending the 20th anniversary meeting of Hemophilia Federation of America in Tampa, Florida this past week. A record number attended, estimated between 600-900, from all parts of the US. Zoraida and I arrived on Wednesday, a day early, to meet with some of our colleagues, for this is a prime meeting for business networking, fundraising and brainstorming.

Central to the meeting, like its heart beat, was the History Room. This stunning display of our past 70 years in all its pain and triumph, was a somber reminder of how far we have come in the war against bleeding, and the sacrifices of our fallen. Following a poster timeline, in which each era was clearly defined, led to the room, where dozens of resources were provided (hey, including my own stuff), a community poster board with hundreds of photos, and the Ryan White section from the AIDS Quilt. Kudos to Rich Pezzillo, Ray Datolli and Barry Haarde (and their helpers) who masterfully compiled with painstaking detail this amazing tribute to our community, to our fallen.

Selfie-time!

Symposia included a variety of topics. One on advocacy and the ACA, called Making Advocacy Personal, featured Jim Romano of PSI and Wendy Owen who answered a slew of questions on advocacy and health care policy. Another on just inhibitors, a new feature at HFA–my only concern was that is was closed only to families with inhibitors. Huh? Everyone could benefit from attending, as there will be families this year who will develop inhibitors, and there are those of us who help educate them. (Anyone want to explain that policy to me?***)

Baxter-Sponsored Dinner Friday Night

A Baxter-sponsored dinner Friday night provided talks from two young men with hemophilia who shared their stories of growing up feeling different, and who now are talking life by the horns–very inspirational!

Ray Datolli, Emily Haarde, Rich Pezzillo,
Laurie Kelley

After that dinner, at 9 pm, I attended the Committee of Ten Thousand (COTT) meeting, led by the legendary Corey Dubin. We discussed the Living Memorial, a gorgeous “Vietnam Wall” style, stone memorial, to be placed in San Francisco, with the names of all who died of hemophilia/HIV inscribed on it. The artist’s rendition is spectacular, and prompted Jane Cavanaugh Smith, executive director of the Coluburn-Keenan Foundation to donate $10,000! And to pledge matching donations up to $50,000! Nathan and Sonji Wilkes, parents of Thomas, who has hemophilia and inhibitors, immediately pledged $1,000. Corey was touched and grateful, and we all look forward to learning more about the Memorial’s fundraising and financing so we can begin to help fund this, and at long last, close the wound in our community while the survivors are still with us.

The final night was a wonderful buffet dinner sponsored by Biogen Idec, complete with games for the kids and dancing. And what timing. That very day it was announced on the newswires that Alprolix, Biogen Idec’s long-lasting recombinant factor IX, was approved for sale by the US FDA!

So in addition to congratulating HFA on 20 years of service, Biogen Idec also announced to the crowd the news about this game-changing drug. And don’t forget there are many other drugs in the pipeline coming on line soon from many of the manufacturers….

It’s going to be an interesting year, folks.
Thanks to Kimberly Haugstad and her team for a fabulous meeting!

*** Policy explained, April 1 from HFA: “We closed it because inhibitor families asked for it to be closed.”

History Room: 1950s…

History Room: 1950s…

Why Should We Care?

Laurie Kelley and Guy Law: Friends for 20+ years!

AIDS Quilt

Andy Matthews and Laurei Kelley: friends for 20+ years

Laurie Kelley and Sarah Workman

John Parler and Laurie Kelley
Laurie Kelley meets author Shelby Smoak
Julie Heinrich and Laurie Kelley
Laurie Kelley and Juanita Fish!

Dawn Rotellini of NHF!

Sunday morning: EJ, Matt and Jeff
Zoraida and…
… Laurie at the Dali Museum

Hemophilia Awareness Month

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!


Gears for Girls; Gears for Good

So this is all Barry Haarde’s fault.

My new addiction!
Let me explain. A year ago I was a contented jogger and sometimes mountain climber. Not often, but enough to say I can do
it. I also cycled about once a week using an old hybrid bike, which means that
it’s not as slick as a touring bike (those skinny bikes with skinny people
riding them who have Lance-Armstrong-like ripped muscles and wear cool shirts)
but not as bulky as a mountain bike (which have really thick tires and usually
young, crazy males riding them through forests). I wasn’t too competitive.
Then Barry just had to go and cycle across
America in 2012 (3,700 something miles) to raise money for the nonprofit I founded,
Save One Life. And when he hit New York, he emailed me that I was going to ride
the last 50 miles with him to dip our wheels in the Atlantic Ocean, at Rye
beach, in New Hampshire, not too far from where I live.
Oh really? I couldn’t refuse; he shamed me into
it.
So I did have a top-notch Spanish touring bike, an
Orbea Diva, though dusty and stiff, hidden in a closet. It was in storage for
the past four years, after I bought it as a consolation prize when I turned 50,
fell in the middle of the street on its maiden voyage, and put it away, too
sacred to ride it. Well, that’s all chronicled here.  https://www.blog.kelleycom.com/2012_08_01_archive.html
Today, I continued what has become an addiction. (Yeah,
Barry, an addiction! You knew this was going to happen.) I hopped on my baby (the
Diva, which used to give me nightmares as it sat eerily waiting for me in my
cellar closet, like some haunted, phantom thing from a Guillermo de Toro movie)
at 9:30 am and headed out for Route 1A, and cycled along the Atlantic sea coast
for over four hours, covering 64 miles, the most I’ve ever done. Yes, it hurt
after a while, but you just can’t stop it. Whatever it takes.
Last week, if you are friends with me on Facebook
(you are friends with me, right?), you might know I spent four days solo in Sedona,
Arizona, where I indulged my new addiction. I checked in last Sunday into my
hotel in Sedona, a mere two hours after the Arizona Hemophilia Association
meeting, and almost immediately went for my first mountain bike trip. Why? I
was surrounded by majestic Boynton Canyon, with the desert and all its twisting, red-dusty
paths calling to me. Something different and new. And kinda scary. Mountain
biking is very different than touring biking. It’s like the difference between riding a Mustang with an attitude using a Western-saddle, and sitting all pretty and proper on a fast thoroughbred (well, not that fast when I am on it) on an English saddle.

Red rusty trail

The day was hotter than I thought, and it would
be easy to dehydrate. I slipped on a new backpack, very small, with a built in “Camelback”
water pouch. This has a tube connected to the “bladder” (I know, sounds gross)
from which you can easily drink water. I set out on the bike, hit “Deadman’s
Trail” alone, and pounded my way through red dust, over lots of stones and
sand. Sedona sits at 4,500 feet, and my heart was soon thumping in my chest. To
my left, the massive sandstone wall of Boynton Canyon, with towering red rocks.
Cacti and scrub bushes fringed the trail. After 30 minutes, I felt I was in the
middle of nowhere, alone… the path was steep. I stopped, chickened-out (it is
DEADman’s Trail, after all), and decided to turnaround the way I came: downhill, rocky, exciting!
They call it Deadman’s for a reason

Boynton Canyon
My heart was pounding furiously, meaning that I
was overheating. It was trying desperately to circulate overheated blood from
my midsection, where it was “cooking” my internal organs, to the extremities. (I
recall all this from my Outside magazines, when I used to enjoy reading about
other people doing stupid things outside) This is about the only cooking I am ever successful at. Rest in the shade and water would take care of that. I took off my helmet, and my backpack, to allow my sweat to do its
job and cool me.
The next day, after four hours of hiking Bear Mountain
and Devil’s Trail in the 96-degree heat, in which I drank perhaps more water
than in my whole life combined, I actually went for another mountain bike ride,
on Cockscomb Trail. Who would be crazy enough to do this
after such long and superheated hikes? People with bicycle addictions.
George, the Native American guide from the bike
rental shop, gave me excellent tips on biking the trail. It was much better
than Deadman’s Trail; more trail than steep rock steps, exciting. I found the
trail head off the highway, entered, and was frustrated to stop a few times as I
didn’t have my rhythm down yet. Don’t power up the hills, George had said.
That’s what you “touring” people do. Just sit back, go in your easiest gear,
and pretend you are walking “up” the hill.
The hill with lots of rocks, you mean?
 Yes. When I got through the rocky
part, the trail smoothed out and became like the Run Away Train ride at Disneyworld. I marked the trail as I went with the contents of my stomach. I guess I pushed myself too hard and was so spent. But it was fun!
On Wednesday I wasn’t sure at first how to start
my last day. Swim in the pool? Attend the yoga classes? Leisurely breakfast?
Nope. Up at 6:30 am, made some tea, ate a banana and some berries, checked email,
wrote to my daughters to tell them to come and find me if I disappear, threw on
my riding gear and headed to the Activities Shop. By 8 am, with some cloud
cover thankfully, I pumped down the road, to the Fay’s Canyon trail head, and dove into the
outback again to Cockscomb. I was going to nail it this time, and make George
proud of me. No more walking my mountain bike. I did so much better; only had to stop twice as opposed to three or four times on Sunday. At
times I felt like I was on a runaway horse, recalcitrant and skittish, as I
bounced over the rocks, fishtailed in the red, fine dust, and then rolled up
and down the roller coaster trails. It was challenging, exhilarating,
dusty, dirty, sweaty. And did I mention addictive?

After that, I came back out to the road, and then
pedaled back towards the hotel, first taking a side tour to Deadman’s Trail again,
determined to see it through the end. It was so much harder than Cockscomb, but
I did much better this time. I actually pumped up the first very hard incline,
with many rocks, doing just what George had suggested. And in 20 minutes got to the tricky part where I gave up on
Sunday. It was better after that, but still challenging. It suddenly got scorching hot as the sun rose, and I was sweating and drinking tons of water. I felt like I
had leaks in my skin. Water in, water out. I had to stop now and then, and rest
or walk the bike. At one point, the bike seat (which had a loose part to it
that stuck out) caught on my shorts, tore a small hole in them and wouldn’t
allow me to hop off when I needed to, so down I went in the dirt, the bike landing on top. The handlebar
jammed into my thigh, causing instantly a raised hematoma. Ouch. At that very
second a runner swept passed me (out in the canyon?), a Matthew McConaughey
lookalike, tanned, trim, ridiculously handsome and fit, and half naked. We said
hello… instant painkiller. Back on my bike, finally reaching the road, and aimed for the turnoff for my hotel.
Wipe out!
But I didn’t want to
go back, as it meant I had to leave tomorrow for Boston! I still had half an
hour so I swung the bike around, pedaled back
to Cockscomb Trail and did it again, and this time only stopped once! It
was such a great feeling. I was so incredibly hot, my heart was pounding, sweat
pouring out of me, my legs all banged up and bruised, and I never felt better
in my life. (Well, maybe if I saw Matthew McConaughey’s
look-alike again)
After the
64-mile ride today, I came back, lay on my bed still in full biking gear, and
passed out for an hour. How will I make it to 100? Because I have to do 100.
What good is an addiction if it doesn’t keep pulling you to push the envelope?
So here it is:
On September 21, I will ride 100 miles to raise money for the Springfield
Police Department, in honor of Officer Kevin Ambrose, who was killed in June
2012 in the line of duty, the first officer in that city in 25 years to die in
action. My brother Tim, also an officer, was a good friend of his. So he and I
will ride together, along with 200 other officers, with a full State Police
escort. I might need it.
Reward at the end of the trail
And, Barry, who
got me into this mess to begin with, is going to ride with me, Kimberly
Haugstaud (executive director of Hemophilia Federation of America), Vaughn Ripley, and Allie Boutin
of HFA (and a neighbor of mine!) and more, to raise funds for HFA on September
27
. “Gears for Good.” Want to sponsor me? Take pity on me and my addiction, and
think of a pledge. It’s all for a good cause—for HFA. And it’s only a few days
after my 100-miler (my “Century”)—so I will be primed and ready! Or totally
passed out somewhere in my gear. What I fear most is not the these two rides,
but Barry whispering how I should do the cross-country ride with him in 2014… Barry,
it’s not nice to take advantage of someone with an addiction!
Donate here….   http://www.razoo.com/story/Gears-For-Good-2014

Book I Just Read
The Places in
Between
by Rory Stewart [Kindle]
This book was a best
seller, and recommended by my favorite magazine, Outside. In 2002, Rory, a
free-lance writer, decides to walk across Afghanistan just months after the
Taliban were deposed, retracing the path of a former and ancient ruler, Babur. He
claims to be researching a book about Afghan history and Babur, but this book
is mostly about the people he encounters and the extreme physical hardships he
endures. The problem is his writing is mercilessly dry, without emotion or
sentiment, and seemingly for no purpose. Why does he undertake this trek? Just
to see if it can be done. There is no setting up of girls’ schools, as in Three
Cups of Tea
; there is no bonding of humans who endure outside exposure and
survival. There is barely even a bonding with the faithful and suffering dog he
adopts and who accompanies him. While he does have potentially an interesting
story, it is told in such a way as to make the reader wonder why he or she is
reading it. To what point? There seems to be none. And there is no excuse for mediocre
writing; Rory had plenty of time alone to conjure up literary references,
flowing of words, rhythm. It’s flat, uninspiring writing. I learned a bit about
Afghanistan but didn’t enjoy the trip much. Two/five stars.

Helping Hands

Times have been tough these
past two years. I’ve been in business in the hemophilia community for 23 years
and have never had so many call us for financial assistance, from helping to
pay tuition, to paying electricity bills, even the cost of gas to get to
clinic.
Everyone in hemophilia should
know about a program from Hemophilia Federation of America (HFA) that can help
community members facing hardship.
HFA is a national nonprofit dedicated to advocating for, assisting and representing
the bleeding disorders community.
Their “Helping Hands”
program provides urgent assistance to individuals and families in the bleeding
disorders community who are in a crisis situation. In 2011-2012, HFA
distributed over $240,000 to about 470 households to help with expenses such
as: housing, transportation, utility bills, and car payments.
And don’t forget your membership matters! In 2013, 100% of
membership dues will go directly to the Helping Hands program. Become a member
today to help YOUR blood brothers and sisters in need: http://tiny.cc/irbs0w
Good Book I Just Read

Defending Jacob by
William Landay
Set in a suburb of
Boston, this novel tells the tale of Andrew Barber, a respected assistant
district attorney whose 14-year-old son is accused of murdering a classmate. His
world is shattered, his career is ruined as he prepares to fight the very court
system he has worked in for 20 years, to protect the mysterious and reclusive
son he loves. But the neighbors, courts and media are out for blood, someone to
blame, and all evidence points at the son. How far will Andy go to protect his
son, and discover the truth? I learned a lot about legal terms and matters, and
it’s a riveting tale, well told, with a twist in the end. A great
sit-on-the-beach book. Three/five stars.

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