HFA

Layoffs and Life Cycles

Boston had some bad news last week: Wayfair, a Boston-based national e-retailer of household goods, is laying off another 1,650 jobs, or 13% of its workforce. The CEO admits they are “bloated,” and had a hiring frenzy during Covid, when people stayed home and engaged in home repair and redesigning. It’s not the only major employer to do this: Google and Amazon have also laid off many workers, and even the classic magazine Sports Illustrated is facing massive layoffs and even bankruptcy.

Even the bleeding disorders community is facing its own layoff challenges, as Hemophilia Federation of America (HFA) laid off nine staff members, in a bid to make its financial structure more sound. This came as a shock to the community, and Facebook lit up with questions and even condemnation. Emotions run high in this community, as do expectations.

HFA cites the every-changing landscape of bleeding disorders, which primarily means funding. And funding is directly related to market share of different manufacturers, because most of HFA’s money, like NHF’s, like almost everyone in bleeding disorders, comes from manufacturers.

It wasn’t always like this. During the HIV crisis of the 1980s and 1990s, “pharma” did not donate as much as specialty pharmacies, which were on the rise in power and influence. HFA itself was founded by patients in direct response to the perceived lack of community representation and poor decision-making of the National Hemophilia Foundation (NHF), which the community believed let them down. It was believed that receiving funding from pharma influenced NHF’s decision-making on whether patients should continue to take injections of commercial factor VIII, when it was suspected of having HIV.

HFA refused money from pharma then, and only took money from specialty pharmacies. HFA was a grass-roots organization that seemed to truly put patients first. As time went on, particularly with the rise of Pharmacy Benefit Managers (PBMs), and as we predicted in a series of articles in PEN, which you can read here, insurers resumed their influence over access to product, and larger specialty pharmacies acquired and merged with smaller ones. The pool of donors was consolidating. Many of the small specialty pharmacies were founded and run by people with hemophilia.

Our community went from dozens of specialty pharmacies devoted solely to providing factor, to where we ended up now: Only a handful, with PBMs dominating distribution, and insurers dictating products and access to care.

All the more reason to have advocacy groups like HFA. Unfortunately, funding was consolidating too, and with insurers dictating benefits, specialty pharmacies had little influence over and subsequently little reason to woo patients. PBMs continued to dominate, and smaller specialty pharmacies continued to be absorbed… and disappear.

HFA now had to rely on pharma money, which is where we stand today.

And it’s true: the landscape is changing. We have an overcrowded field of products (download our factor chart), and a limited consumer group for these products. Top dogs with the highest market share will feel little need to contribute funds when their products are favored by both patients and prescribers.

But there is also the natural life-cycle of a nonprofit at play. We now have two national organization and dozens of state organizations: all to service several tens of thousands of people. Is it overkill? Products are state-of-the-art, safe, effective and abundant. What role will the nonprofits play? Do they need to consolidate to survive, just as specialty pharmacies did?

I was given this nonprofit life-cycle chart (below) by an executive director, which shows that nonprofits, like businesses, have life cycles. Read it carefully. Do we find ourselves in the “Stagnation & Renewal Stage”? Restructuring might be the first tactic to resolve this, so perhaps HFA has taken the right first step. We should try to understand and not condemn at this point.

A restructuring does, however, signal a scary time for those who fought so hard to bring HFA to life, keep it breathing, and keep it growing. In survival, the “fittest” are not the most funded or best even, but those that adapt to a changing environment. We need to know what is happening in the environment—here, funding sources, manufacturers, patient needs—and whether the current structure can survive. The board and CEO have decided it cannot. So it is attempting to adapt.

I wish it success, and pray it continues, as I am fond of HFA, proud of its achievements and know the community needs it, in any form.

Help is Here!

Hemophilia—all bleeding disorders really—requires help, and not just from therapies. Due to healthcare changes, patients are required often to pay higher out of pocket costs. And sometimes, it’s just life: single parenting, limited job opportunities, higher education bills, gas, care and health insurance. We could all use help.

Hemophilia Federation has a great listing of all their ways they might help. HFA has long impressed me with their direct-to-patient aid. It’s a lot like what we do with Save One Life overseas: we give direct aid to those most in need. You local chapter might be a good first place to start, but then look at HFA’s website to learn more.

Check out these opportunities and find out if you are eligible:

Go Away!

Spring is coming, and it feels like it, as more and more, the country is opening up. It’s wonderful to see that some of our community events are back in person! Read below to see which ones you might attend. Remember, we are not yet through the pandemic. Please be sure you are vaccinated, and be careful. I’m going to wait a bit more before attending, but remember, you can always attend virtually. Check it out!

Factor IX Families Welcome!

Register for the Coalition for Hemophilia B’s annual meeting in Orlando! May 19-22; travel grants available! Attend also virtually. Register here.

NHF’s 74th Annual Meeting

NHF is thrilled to announce that its 74th Annual Bleeding Disorders Conference (BDC) will take place from August 25 to 27, 2022, in Houston, Texas. After two years of uncertainty, NHF is excited to gather our community in person! You can also attend virtually. Read more here.

Saddle Up!

Texas is the place to be this year! HFA will hold its annual meeting in person in San Antonio, the first time since 2019. Register here!

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…

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

Julie Heinrich and Laurie Kelley

Laurie Kelley and Juanita Fish!

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!


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