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What’s Happening with Helixate® FS?

Laurie Kelley October 16, 2017
We’ve had a tremendous number of factor products enter the US hemophilia market the past few years. in fact, we have exploded from under 10 to about 26 now, not including inhibitor products! 
Rarely do we speak of a product exiting the market. But as of December 31, one will no longer be manufactured—Helixate® FS (Antihemophilic Factor (Recombinant)). 
I’ve read on Facebook some conspiracy-theory explanations!  But here are the facts:
1. Helixate® FS is the exact same product as Kogenate® FS. Exactly.
2. Both products are made by Bayer Corporation. The therapy that makes Kogenate FS has been sold to CLS Behring annually as part of a lawsuit settlement many years ago. CSL then markets the product as Helixate® FS. This was good for CSL, which at the time did not have a recombinant factor VIII product.
3. The resultant contract is coming to an end; CSL Behring and Bayer will no longer partner to product and market Helixate FS.
4. And CSL now has recombinant FVII products that it has created, namely Afstyla (Antihemophilic Factor [Recombinant], Single Chain, a next-generation factor VIII with twice-weekly dosing available).As with Helixate FS, Afstyla uses the Mix2Vial® system, which will keep patients’ reconstitution process consistent. 
5. CSL wants to assure the community that it will update patients, prescribers and specialty pharmacies with updated supply information. Community members can sign up here for direct updates.
6. The products that are already manufactured will still be in the distribution pipeline, probably through to early 2019. This gives patients and their families plenty of time to consider treatment options. 
If you currently use Helixate FS, you should speak with your HTC hematologist soon about what treatment options you have, given your insurance policy and specialty pharmacy. You can also contact a  CSL Behring My SourceSM Care Coordinator at 1-800-676-4266 Monday–Friday, 8 AM to 8 PM ET–but please speak with your hematologist, who can help you find the right therapy for you.
Helixate FS is a great product, and there are many more also great to choose from. Use our factor chart here to start looking. Good luck and always Factor Up!

This is an unpaid public service announcement.

“The Only Real Magic …”

Laurie Kelley October 8, 2017

Music, as far as I have seen in the world so far, is the only real magic that I know. There is something really honest and clean and pure and it touches you in your heart. Tom Petty

Tom Petty, incredible musician and performer, sadly passed away on October 2, and joined other rock stars in the sky this year: Greg Allman ( Allman Brothers), Sib Hashian ( Boston), Chris Cornell (Soundgarden, Audioslave), and more. Last year we lost heavy hitters like Prince, and David Bowie. Musicians provide the lyrical and emotive background of our lives. When we hear a certain song, our minds can recall towns, people, news events, lost loves, and hopes that happened at the same time we first heard that song.

Blood Vibrations

I love music, from Bach to Metallica, and feel it unites people in ways that are almost spiritual. You can meet someone completely different from you, in age, race, ethnicity, religion, gender… but when you learn they love the same band you adore ( the Doors!), you suddenly find you have everything in common with them!
So, I have to shout out two amazing artists in our bleeding disorders community: Billy Conde and Mathew Tache, who are more than wonderful musicians. They’ve put together a way for music to unite those with hemophilia.

They’ve created Blood Vibrations ( a tip of the hat to Beach Boys’ Good Vibrations). It’s a website devoted to bringing musicians with bleeding disorders together to publish their songs. From the website: “Blood Vibrations is an ongoing grassroots project that collects sound and music created by people with bleeding disorders. The goal of the project is to provide a forum for creativity, expression, sharing and learning- all contributing to whole being wellness. Anyone with a bleeding disorder is welcome to participate. No musical experience is required. Record in hi-fi, lo-fi, no-fi. We encourage collaborations and group works.”

Billy and Matt facilitate all the ongoing work themselves– soliciting music/art, website, and promotion. The project is free ( no cost to share/submit and no cost to listen). They do not accept finding from outside sources– all costs are paid by these two wonderful men with hemophilia directly.

Check out Blood Vibrations, and email Billy and Matt at bloodvibrations@yahoo.com if you have an idea for a song, or one to submit to create an album.

You can also download music from the latest Blood Vibrations album, Blood Vibrations 6. You might see some talented community members you know on some of the albums, like Shelby Smoak, Kevin Finkle, Josef Zwier, and Jenny Massey.

 

Laurie meets Zakk Wylde

Coincidentally, when Billy and I communicated, he was just listening to No Rest for the Wicked by Ozzy Osbourne, Zakk Wylde on lead guitar. I had just met Zakk Wylde in Utah; unbelievably great and intense guitarist! “Counterfeit God” is my favorite song of his so far.

Billy adds, “I’ve also been immersing myself since Monday in the music of Tom Petty, which was important to me as I was discovering rock ‘n’ roll as a kid.”

Listen to music, all types. It stirs memory, enriches the mind, feeds the soul. And if you can… make music. Now you can, free and easy, and with our community, at Blood Vibrations.

Our Vietnam Wall: The Hemophilia Memorial

Laurie Kelley October 1, 2017
I’m stunned into silence while watching Facebook, as I see the names on
banners…Papo Gonzalez, Patty Kuhn, Charles Carman, John W. Cavanaugh, Tom Fahey, Christopher Pitkin, Loras Goedken, Greg and Tim Haas, Michael Sutton, Bill McAdam, George McCoy, Brent Runyon, Larkey DeNeffe, Brian Craft…So many of these people with hemophilia were known to me personally; some I shared a drink with, or travel, or swapped stories. Brian Craft and I were once in a video together, back in 1993! Tom Fahey and I met several times as he was nearby in Boston. I had removed their names from my mailing list, over and over, as each one passed. I still keep a framed photo of Tom in my home office. All are gone, victims of one of the greatest tragedies in the history of medicine. The infection of our nation’s blood supply by HIV.

They are like our veterans. Each November we remember those who sacrificed their lives so that we could live more free ones, so that we can escape the threat of tyranny, or the threat of invasion. Their deaths meant better quality of life for future generations. The massive deaths, up to 10,000, of those with hemophilia from AIDS spurred research, better factor products and ultimately better medicine to combat HIV, sparing thousands, perhaps millions around the
world from infection through blood products.

On September 16, these “veterans” were finally given a federal memorial, The Hemophilia Memorial, residing at the National AIDS Memorial Grove. The Memorial is similar to the Vietnam Wall, where names will be remembered forever. I wish I could have been there, but our community was well represented by the surviving family members, loved ones, physicians who treated patients and our national advocates. What an incredible and moving memorial to the
unsuspecting patients caught up in a maelstrom of disease and even deceit. Nothing like this virus had happened in history and it was the stuff of science fiction.

While we have needed this memorial to help heal, even 30 years later, it took a long time to make it happen. AIDS has been a painful reminder of our failures, and young lives lost. Now, as more and more hemophilia patients survive AIDS and live normal lives, even having children, it seemed right to have a memorial.

My son was born in 1987 as the AIDS firestorm had fully ignited; the very week he was born the Ray brothers were bombed out of their home in Florida. The next month was National AIDS Awareness Month. We lived in fear, of the disease but also of public sentiment, which was against us. This community has prevailed, in spirit, in attitude and in results. The slogan at the Dachau Prison Camp I visited at age 16 was “Never again.” I hope this can become our
slogan too. Success can sometimes breed complacency, and one thing this community has prided itself on is to never be complacent. Our future and our children’s lives depend on that. Hemophilia changed history twice: the overthrow of Tsar Nicholas II of Russia, and the way we deal with blood and blood-borne disease worldwide.

Let’s change it once more with a cure. And this Memorial will be our everlasting remembrance of an ancient disorder and a modern age disease, whose time came, changed history, and went.

“Our story will be remembered. The Hemophilia Memorial will ensure we never forget those we loved but lost.” —Jeanne White-Ginder, mother of Ryan White

LA Kelley Communications donated $1,000 to the Memorial during the NHF Annual Meeting opening night. Please consider making a donation to the Hemophilia Memorial here.

Puerto Rico: Mi Corazón se Rompe

Laurie Kelley September 25, 2017
My heart breaks. I sit at home tonight, trying to imagine what it would be like to have my house half submerged in water, a fallen tree slicing through one bedroom, my clothing and photographs ruined, the sewers backing up into the rushing water from the overflowing streets, my two cats missing and presumed drowned, my daughter huddling with me, unable to contact anyone for help because all electricity is out, and our cell phones were lost during the roaring winds, downed lines, and river of rain left in the wake of a massive hurricane. Our beds are soaked; food in the fridge ruined and submerged in the muddy water; medicine soaked; streets impassable.
No way to contact relatives; no way to call for help. Creatures of the night and underground now emerge to gasp for air: snakes, spiders, rodents, carrying disease and threat of bites.
 
Society has broken down and we wait and wait in the dark, throughout the day, and into the next night, for help of any kind. We’re hungry and thirsty, dirty and shivering. And alone.
This is the situation for so many families in Puerto Rico, where not just one town, or even just the capital was pummeled by Hurricane Maria, but the entire island. This tropical semi-state, a possession of the US, a warm, colorful albeit poor place, dependent on tourism and the welfare of the mainland, is now a ravaged
wasteland, and it will take months, perhaps years to rebuild.
 
I feel for Puerto Rico so much, probably even more than for the states of Texas and Florida. The needs in PR are massive; they were in economic trouble long before Maria hit; it was so bad that many Puerto Ricans were leaving the mainland in droves, for better medical care and education. And PR is an island, making rescue and ferrying aid so much more challenging.
 
I have been going to Puerto Rico since 1998, when I first visited to check out the hemophilia situation there. (Read our in-depth article about hemophilia in PR here) Though they belonged to the US, and were entitled to US funding for healthcare, they only used one factor product, a plasma-derived! Through the years, helping the newly resurrected Puerto Rico Hemophilia Association, we all helped bring patients together and pressured the medical community to investigate new products. The result? A variety of products in the mid-2000s, including recombinant, and a strong, patient-driven hemophilia association. I watched this group form, develop and grow into a powerhouse.

And this is before Hurricane Maria…

Mother Nature has set us back, but has not defeated us. I say “us” because I am still with PR. At the NHF meeting in Chicago just in August, I met with one of the island’s pharmaceutical reps and we talked about hosting another visit, to do more leadership training, to keep things moving forward. It will have to wait.
 
For now, we urgently need to get supplies into PR. Because our company and especially Zoraida, director of Project SHARE and who is from Puerto Rico originally, deals with humanitarian shipments, we will be contacting the manufacturers to see who is donating factor to the hospitals. We will be asking our readers and friends on Facebook to consider donating material supplies and necessities.
 
But… many people hesitate to donate to a place like Puerto Rico. Will the donations go into the right hands? I get it. At Project SHARE we diligently follow each vial of factor to its destination. But what about clothing and supplies to Puerto Rico?
 
We have a way. Allison Plaud, a mother of a child with hemophilia I met on one visit (and who has since emigrated to mainland US), has assured me that one of her trusted friends, a businessman, is collecting donated items and will be shipping them on Saturday to PR.
 
We endorse Allison and her friend, and beg everyone in the hemophilia community to donate items to ship.
 
Here are the items, and 
 
where to donate!
 
And here is the situation in Puerto Rico.
 
I am haunted by the images, and by their suffering. Forget athletes kneeling, politicians sniping. Let’s be real Americans and do
what Americans are best known for: being the first to help. Puerto Ricans are Americans and we must help them. This
is when I am proudest to be an American!
 
 

 

 

Here’s to Living! with Hemophilia

Laurie Kelley September 17, 2017

 

The following content is sponsored by Bayer. 

 

 

Here’s to Living! with Hemophilia

As part of Bayer’s commitment to the hemophilia community, we’re working together with patients, caregivers, healthcare professionals and advocates to make a positive difference.  We’ve developed resources, programs, and opportunities to help every family put the “living” in living with hemophilia. Our aim is simple — educate you about hemophilia A so you can make more informed decisions about living  with hemophilia on your own terms, at every stage of life.

  • Living With Hemophilia
    • Customized presentation series designed to help educate and enlighten those living with hemophilia
  • Smart Games
    • An interactive way for young children to take steps toward understanding hemophilia
  • Transition Ignition
    • Helps teens establish a comfort level with hemophilia and practice treatment management skills
  • Game On
    • Empowers young adults with hemophilia to be accountable for their treatment and make healthy choices
  • And Now… Back To You
    • Designed to help adults with hemophilia rediscover goals related to career, education or passions
  • Parents Empowering Parents
    • Peer-to-peer program for parents of children with hemophilia
  • M-Powered
    • For hemophilia moms to gain practical tools for success while building connections for a lifetime
  • Bayer Leadership U
    • A summer internship for college students whose lives are touched by hemophilia
  • Step Up Reach Out
    • An international youth program that connects future leaders in the community
  • AFFIRM
    • An international fellowship program for men with hemophilia, designed to develop and expand leadership and advocacy skills

For more information about our programs and resources, please visit the newly updated  www.LivingWithHemophilia.com. 

© 2017 Bayer. All Rights Reserved. Bayer, the Bayer Cross, and Living With Hemophilia are registered trademarks of Bayer. PP-775-US-0792

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