Laurie Kelley

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.

Dr. Morbius’s Rare Blood Disorder

Last week we profiled Morgan Hampton, who works for DC Comics, providing the writing for the uber cool character Cyborg. Marvel Comics has its own universe of characters, of course, and our archivist Richard Atwood has written this week about Marvel’s Dr. Morbius, as he appears in the 2022 Columbia Pictures “Morbius,” staring Jared Leto. It’s available for free with a Netflix subscription, and iTunes for a rental fee.

Morbius, like people with hemophilia, has a rare blood disorder.

Richard writes:

Michael Morbius (Jared Leto) is born with a rare blood disorder that has no cure. Since his childhood in Greece, and subsequent schooling for gifted children in New York City, he has needed crutches to barely walk. After earning a doctorate at age 19, Morbius discovers which DNA he is missing. As a leading authority on blood, he creates artificial blood, for which he is receives a Nobel Prize nomination, an honor that he rejects.

At Horizon Lab, he conducts research and sees patients. Funded by his childhood friend Lucien (Matt Smith), who he re-names Milo, Morbius conducts expensive, illegal and unethical experiments in a laboratory aboard a cargo ship that is sailing in international waters, thirteen nautical miles off the coast of Long Island. Morbius, along with his colleague Dr. Martine Bancroft (Adria Arjona), mixes human DNA with vampire bat DNA that he collected in Costa Rica. These bats feed exclusively on blood and have an anticoagulant in their saliva. When Bancroft injects Morbius with the mixed DNA serum, he adopts the characteristics of bats, assuming great speed, agility and strength, and echo location. When agitated, he assumes the physical characteristics of bats, especially their impressive fangs and claws, which he then loses when he returns to calm.

Morbius, after turning into the bat-like creature, kills the entire security detail of eight thugs on the research vessel, and drains their blood. FBI agents arrest Morbius for these murders, and place him in the Manhattan Detention Complex, from which he escapes.

Milo, the true villain of the story, wanting simply to live longer, takes Morbius’s serum and hungers for blood. He drains the blood of his victims, killing them. Morbius is accused of these additional murders and becomes known as the “vampire murderer” in NYC. Still on the run from the police, Morbius creates two doses for an antibody that inhibits ferritin and induces massive iron overload and instant hemochromatosis. When Milo bites Bancroft to drink her blood, Morbius injects the antibody into Milo, killing him. Bancroft, turned with red eyes, remains alive.

Morbius in the Marvel comics version is actually a villain for Spider-Man. The uncredited supporting cast is composed of millions of bats who come to the aid of the antihero. The movie had two wins and four nominations for awards. The budget of $75 million was surpassed by the world gross of $167 million. The rare blood disorder and its missing DNA are never identified, though drinking artificial blood is a treatment that lasts only six hours for Morbius.

And from me (Laurie), likewise, a blood transfusion from a person without hemophilia would stop a hemophilic bleed only temporarily, as the blood is used up. The lesson? Use your factor if you have hemophilia! It won’t turn you into anything except healthy.

Our Hemophilia Cyborg!

We often refer to our guys with hemophilia as superheroes. And so many truly are: whether they survived exposure to HIV in the 70s, or overcame an inhibitor, or live with an inhibitor, or have had surgeries or many surgeries. Their endurance, their tolerance for pain, their ambitions are heroic.

But how about a guy with hemophilia who helps create a superhero?

Meet Morgan Hampton, a 31-year-old with hemophilia, who astoundingly creates the text for DC Comics’s character Cyborg. Personally, I loved Cyborg from the 2021 movie “Justice League.” What a great job to have! In addition, Morgan is a third-year student of Writing and Producing for Television at Loyola Marymount University in Los Angeles. He’s working on his Master’s Thesis, an animated film about a young man with hemophilia: “The Boy in the Blue Helmet.” We’re helping to fund this project, which I know will be wonderful. Read our Q&A with Morgan below and be inspired!

When did you first know you wanted to be a writer?

The first thing I wanted to be as a child was a Power Ranger.  And I wanted that for an embarrassingly long time. In hindsight, I think I always knew that I wanted to be a writer. I started making my own comics when I was eight. But I didn’t internalize that I wanted to write as a career until I got to college. Once I realized that, everything became clearer because I suddenly had a singular goal to strive towards. 

Have you always been drawn to the superhero world? Or was this an opportunity that came out of the blue?

Yes, definitely. Comics, specifically superhero comics, are the only reason I read as a child. Novels couldn’t keep my attention, but comics had really cool pictures that kept me very engaged. 

As I got older and paid more attention to the stories and the characters, superheroes presented an escape to a world where people with traumatic backstories, and devastating injuries could overcome that and use it to their advantage, saving the world and their communities along the way. Seeing that as a young person with hemophilia was very important to me.

What significant challenges did you face as a child?

The challenges I faced as a child were more mental and emotional than physical, I’d say. I’m a mild hemophiliac, and I was born in 1993, right around the time they started to make major breakthroughs in medication. Oddly enough, the bleeding and needles and medication has always felt normal to me. Because hemophilia is something you’re born with, this is all I’ve ever known, so there wasn’t any adjustment I had to make. The adjustment was trying to fit my very not “normal” life into a normal one.

My uncle also had hemophilia. He was one of the many with hemophilia who contracted HIV/AIDS in the 80s, ultimately succumbing to it in the 90s.

My mother had grown up watching my uncle struggle with hemophilia during a time when he did not have the same safety nets that I have had in my life. Informed by what he went through, my mom wanted to create as safe an environment as possible for me as any mother would.  But it was hard for me to understand why I couldn’t go out and do the things my friends got to do. I didn’t like feeling different, and that was probably the hardest part for me. So I was stuck at home watching television, reading comic books, and playing video games. I know that doesn’t sound like the worst thing ever, but when you’re told you can’t do certain things over and over again, it starts to bother you. 

How does it feel to be a writer for a great character like Cyborg in the DC Universe? What does Cyborg represent or mean to you personally?

Writing Cyborg is truly a dream come true. He was one of my favorite superheroes growing up, and to get to add to his mythology is the honor of a lifetime. No one ever breaks it down this way, but Cyborg is a differently abled person. He’s got bionic appendages. Sure, those bionic appendages grant him superhuman abilities, but at the end of the day, he’s a person that has to learn how to navigate this world in a different way because of his physical circumstance. That’s something that I’ve always resonated with. 

Now I get to add a little bit of my own sensibilities, living in the world with a bleeding disorder that makes me have to navigate life differently, and apply that to one of my favorite characters. It’s the best feeling in the world. 

How do you hope your film “The Boy in the Blue Helmet” will be understood by young people with hemophilia? What do you hope the message will be?

My film is an attempt to capture the emotional truth of what it feels like to grow up with hemophilia. Aspects of it are surreal, and off-kilter because honestly, that’s what having hemophilia feels like. I can twist my ankle and watch it swell to the size of an orange in minutes. To medicate, I have to poke myself with needles. Some people use ports. That’s inherently surreal. 

So my goal for this film is to make hemophiliacs feel seen and heard. We aren’t represented much in film and television and when we are, it isn’t usually an accurate representation. And for everyone else, I want to share what our perspectives living with hemophilia looks like. We are constantly in pursuit of peace, of stability, and often through just trying to make sure we are as safe and secure as possible, the people that we love and care about can lose sight of the fact that we just want to feel normal.

Where do you think these amazing career opportunities will take you in later years?

My hope is to carve out a consistent creative career where I can work as a writer in many mediums whether it be film, television, comic books, anything really. I just want to write, and to live comfortably while doing so. I’m lucky enough to have found what I believe to be my purpose. So I just want to keep feeding into that as much as possible. 

What message in general do you want to give to young people with hemophilia?

Something my mom always used to tell me when I would get down about my hemophilia and the limitations it had on my life is that everyone has something that they are dealing with. That made it easier to cope with my circumstance, knowing that others had their own personal things that they were going through. It made me feel less alone. 

Not only is it okay to be different, it’s cool. It’s not always going to be easy, but you always come out stronger on the other side of adversity. 

Listen and watch Morgan as he describes his project, and contribute if you can!

Also, Morgan’s Cyborg series will be collected into a book that comes out April 2, 2024. Preorder here!

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