A Source of Support and Strength

Trying
to “go it alone” is a noble and brave course in the face of adversity, but not
always an ideal one, especially if you have a bleeding disorder. There is a
huge community filled with caring people, knowledgeable professionals and
valuable resources to help you. This week’s blog shares the experience of
Casey, who realizes how much he needs the support of the community, especially
when it comes to selecting a product that he and his physician believe is right
for him and his body’s individual needs.

Indications

ALPROLIX is an injectable
medicine that is used to help control and prevent bleeding in people with
hemophilia B. Hemophilia B is also called congenital Factor IX
deficiency.

Your healthcare provider may
give you ALPROLIX when you have surgery.

Selected Important Safety Information

Do not use ALPROLIX if you
are allergic to ALPROLIX or any of the other ingredients in ALPROLIX.


Please see ALPROLIX.com for the Indications and Important SafetyInformation , as well as the full Prescribing Information.

Growing
up, I usually didn’t talk about my hemophilia B. I was the first person in my
family to have hemophilia; diagnosed in early childhood. At school, when I would
have bleeds, I remember thinking that none of the other kids did. Without a
mentor, I kept my emotions to myself, no matter how vulnerable I felt.

My
dad gave me my treatments 99% of the time. Always getting the vein on the first
stick. However, my mom was a nervous wreck. One time she had to give me a
treatment, she tried again and again with no luck. She was in tears. In that
moment, she became my motivation to learn how to self-treat. So at the age of
10, I began managing my own hemophilia infusions. It was a liberating feeling.
I wasn’t so vulnerable after all.

It
was one of my nurses who told me about ALPROLIX. After discussing the risks and
benefits with my doctor, he explained that the recommended starting prophy
regimens are either 50 IU/kg once weekly, or 100 IU/kg once every 10 days. And
that the dosing regimen can be adjusted based on individual response. No two
people with hemophilia are alike, so it made sense to me that medication could
work differently in everyone. I started on a 10-day schedule, but when I had my
labs taken, my doctor told me that I could extend my infusions to once every
two weeks. That really fits my busy schedule. Thinking back on my childhood, I
never believed infusing every 14 days would be possible.

I
didn’t start taking ALPROLIX just for myself. I was also thinking of my two
nephews who also have hemophilia. After seeing my experience and talking with
their doctors, they started on ALPROLIX, too. I try to help with my nephews
when I can. I’ve even occasionally been their caregiver and given them a couple
treatments. I make sure they know they have me to look up to if they need
advice.

Watching
my nephews grow up brings back so many memories of my own childhood. We have a
special connection because I understand some of the challenges they face. They
have an advantage I didn’t have growing up: a close family member who knows
what they’re going through. I can help my nephews in a way no one could help
me. My goal is to help them find confidence in themselves and encourage them to
have fun being kids.

I
hope that by sharing my experiences, I might encourage others to figure out
what they have learned from their own experiences and take control over their
choices.

Thank
you.
To hear from other people
living with hemophilia B, check out thesevideos.
Talk to your healthcare team
about whether ALPROLIX may be right for you.
This blog was sponsored by Biogen, for educational
purposes.
FIX-US-0807   
06/2016

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