National Hemophilia Foundation

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.

NHF’s New Name, Logo and Brand

There was an exciting development at the national bleeding disorder conference in Maryland this past week. This is the largest gathering of our community in the US, and some exciting news was announced. The National Hemophilia Foundation (NHF) has changed its name, after 75 years. Along with that, it also has a new logo.

But why? And why now?


Branding a cattle for identification

All personalities, companies and organizations need an identity that the public recognizes and that creates positive associations. With bleeding disorders, this identity includes most likely humanitarianism, proactive behavior, and medical progress.

Identity is reinforced through marketing materials—a logo, business cards, website, and stationery, which all symbolize and define. This is called branding. Branding is what farmers, cattle owners and cowboys do to their livestock and horses, in case they get lost (or stolen). A special marking is burned into the hide of the animal that easily identifies the ranch or individual owner.

For companies, the “brand” is not burned into the hide! It’s a logo—this is a design, a visual symbol that represents the organization’s identity, character, focus, and sometimes culture. Much like the colors and symbols of each country’s flag, the colors, shape and symbols of a logo say clearly who and what the company or organization is.

A logo is one of the main components of branding and should be created after the mission and vision are created. NHF already had a logo, in use for decades. It was replicated around the world too, with the World Federation of Hemophilia, and various chapters and other countries. The logo, in various forms, showed the outline of a human, white inside, leaning on the figure of a person, with red inside. Clearly, people without factor leaning on a person with factor. Over time, the board of NHF decided this was a bit negative, and changed the logo to two upright figures, one white and one read, with arms about one another. Supporting but not dependent.

Brands Evoke Emotions

And the reason for that change is emotional connotation. What emotions did the leaning, white figure conjure up? Weakness? Dependency?

An effective logo elicits an emotional response that creates positive associations. Footwear manufacturer Nike uses a simple “swoosh” design that is contemporary, upbeat, and active, implying energy and speed. The logo of the United Nations depicts olive branches, a sign of peace, embracing the earth.

Even with the positive connotations of the two figures being equal and embracing, NHF decided that this too was outdated. And logos can be updated to reflect changing sentiments and beliefs. Time for a change!

Inclusivity, Welcoming

The new logo is interesting, and reflects changes in the mission of NHF. NHF is no longer just about hemophilia. It is now the National Bleeding Disorders Foundation (NBDF). This title infers inclusivity, which is not only a catchword and movement in society today, but has vital ramifications for our community. NHF implies (and states) hemophilia. NBDF implies and states: hemophilia, rarer bleeding disorders, von Willebrand disease, women with hemophilia, and more.

The new logo reflects this. It has changed from two figures, which is a concrete representation, to the more abstract circle of blood drops. This reflects a more graphic representation of our community. More beautiful is the decision to make the blood drops a palette of colors. To me, this represents diversity, also a catchword and movement in society. Inclusive of ethnicity, gender fluidity, language, heritage, and more.

In logo creation, circles are more fluid than squares; circles are softer, used to represent continuity and eternity, and in general more pleasing to the eye than angular shapes like triangles and squares.

This simple logo with multiple colors is a great choice and can more easily be used in marketing in dozens of ways. By the way, NBDF’s new tagline is a slight variation of one I’ve been using for about 20 years, Mine is Education, Innovation, Compassion.

Change is hard for many to accept. Let’s see how the community reacts to this name change and new logo. I hope it is as positive as the new logo feels to me.

Remembering Legendary Leaders

It’s been a sad couple of years, made sadder today by blogging at the first of the new year about the loss of two incredible leaders in our global hemophilia community, one in the US and one in Pakistan, gone in as many weeks. I’ll write tonight about the loss of Val Bias, the first leader in the hemophilia community I ever met, who made a lasting impression on me.

Val Bias and Laurie Kelley at an NHF Annual Meeting

Val Bias was an icon in the US hemophilia community, an unmistakable presence with his dazzling smile and hearty laugh, who possessed charm but purpose, intelligence but an everyman, relaxed posture, a polished speaker who could also sit back and listen deeply. His goal was ultimately to channel his own pain and suffering, of which there was much, into something for the greater good. He was relentless, and successful, in that goal.

I first met Val during my first National Hemophilia Meeting in 1992. I was the mother of a 5-year-old with hemophilia who had just written my first book, Raising a Child with Hemophilia. I knew about HIV and vaguely what was happening to our community, but … not really. Wrapped up in my own non-HIV world, trying to figure out my place in the community, I watched with horror as a room full of patients, parents and advocates began to rip one another apart over what was happening in the community. People were furious at NHF for their lack of leadership, for advising patients to keep taking their medicine. A patient-led group had formed and stood up, shouting and threatening. Suddenly, one clear, commanding voice boomed: “Everyone, sit down and calm down.” I looked around to see who had this voice, this presence, this leadership. It was a handsome man on the podium, who seemed to be the only one with a rational expression and the only one not afraid. Val Bias.

Val and Laurie in 1998

He was famous already in the community for being executive director of the Hemophilia Council of California, a lobbyist for NHF in Washington DC, and president of the board of the Hemophilia Foundation of Northern California. He was an active camp counselor, mentoring the boys with hemophilia. What amazed me most about him was his role in helping get the Ricky Ray Hemophilia Relief Fund Act of 1998 passed. This act allowed monetary compensation for those infected with HIV who have hemophilia.

Later, Val became the first African-American leader of NHF and one of the first patients to become a leader in NHF. His presence was galvanizing and he made impactful structural changes, which required great risks.

The tributes and condolences are pouring in on Facebook but this one, from our mutual friend and colleague, Dana Kuhn, a particularly close friend of Val’s, hit me the most:

“The pandemic of HIV called for a change in narrative of the national organization [NHF]. [A] group of 5 men realized it was their responsibility to teach men with HIV how to protect women from HIV infection and empower men to educate others to become leaders in their communities. These 5 men convinced NHF to create the Men’s Advocacy Network of the NHF (MANN) which brought altering changes to NHF. The change was strategically training and placing men with hemophilia in places of leadership. As a result, Val became chairman of the Board of Directors of the NHF, and Glenn Pierce became president of NHF. Many of us became directors on the NHF Board. Under new leadership the organization began to work through the decisions and responsibilities of the HIV pandemic in the hemophilia community. With the leadership of Val Bias, positive change was made. The community was unified to work on the Ricky Ray Hemophilia Relief Fund Act of 1995. New, improved and safer hemophilia products were coaxed into coming to market. The safety of the Nation’s blood supply became a priority especially through blood/plasma collection processes. Government agencies and Cabinet level committees accepted hemophilia consumer members to these positions turning a listening ear to their concerns and perspectives. NHF created initiatives under Val Bias and Donald Colburn challenging the raising of funds for research in gene therapy for a CURE. Under Val’s leadership ‘Chapter Development’ was made a priority and programs were implemented. Chapters became stronger and more universally developed. I could go on with much more.

Val with Chris and Jess Bombardier, and Laurie Kelley, in 2019, recognizing Save One Life; the last time they would see Val.

“However, how can I impress upon the bleeding disorders community the passion and compassion this leader had for his community and the awesome change he facilitated coming out of NHF’s challenges with the HIV pandemic. We need to honor this leader and the work he accomplished to help make this community better. The NHF Board and leadership, the Chapters, Youth Leadership Programs, Cure for the Disease programs, educational programs, relationships with donors would not be where they are today without his leadership.”

One of the hallmarks of a true leader is not what position they held, or how many accolades they receive, but what legacy they leave behind. Val was a transformational leader who changed our world, for the better. RIP Val; your work is done. Let those you mentored carry it forward.

Learn more about Val Bias in the movie “Bad Blood,” available on most streaming platforms.

Learn more about Val’s contributions in this article in HemAware.

Bill Cosby: Who Knew?

In the 27 years I’ve been in the hemophilia community, I’ve seen us searching for celebrities with ties to hemophilia. For spokespeople, supporters, to help us raise awareness. We’ve come close a few times, but no celebrity we know of actually has hemophilia or has a child with hemophilia.
Last week we showed how the Beatles had a brush with hemophilia. Now our friend Richard Atwood has uncovered another connection: Bill Cosby. Who knew?
Richard writes a review of a book on Cosby:  William Henry Cosby Jr., or Bill, was born in
Philadelphia on July 12, 1937. He was the eldest of four children, one of whom
was epileptic, born to Anna and William Cosby. The sometimes fatherless family
lived in the projects in a poor district of North Philadelphia. As a child,
Bill was shy and used humor to gain acceptance. Though he was admitted to a
high school for gifted students, Bill did not fit in and transferred. After
being held back for the 10th grade, Bill dropped out of school and later at 19 joined
the navy. While serving as a hospital corpsman, Cosby earned his high school
diploma. Older and more serious, Cosby next enrolled at Temple University where
he ran track and played football. He also started earning enough as a stand-up
comic to drop out of school. In 1963, he met Camille Hanks, a psychology major
at the University of Maryland, and the couple married on January 25, 1964.
Cosby also performed for the first of many times on The Tonight Show in 1963. Both live on stage and recorded on vinyl, Cosby presented his comedic monologues that created a mythical childhood blending fact and fiction. Beginning in 1965 for three years, the television series I Spy was groundbreaking, and Emmy award winning, for the young actor. That same year, the first of his five children was born — Erika was soon followed by Erinne, Ennis, Ensa, and Evin. Cosby’s interest in teaching children through documentaries and television programs led to his enrollment at the University of Massachusetts to earn master’s and doctorate degrees in education in 1976. More television series, cartoon series, commercials, records, movies, and books, plus his stand-up comedy tours, increased his celebrity status, income, and awards, but not without some controversy. His humor offended some, and Cosby could not please others for his perceived lack of involvement in the civil rights movement. Richard notes that this friendly biography of Cosby glosses over any personality difficulties, such as being irritated by continual questions about race.
As a celebrity, Cosby helped raise funds and served on advisory boards for organizations such as the American Cancer Society, the American
Heart Association, and the Black Film Foundation. Sometime before 1971, Cosby was also chairman of the National Hemophilia Foundation. (pp. 91-92).
Representatives of NHF could neither confirm nor deny that Cosby once held the title of chairman of NHF. The December 4, 1969 issue
of Jet magazine reported that Cosby was named honorary chairman of the National Hemophilia Foundation, a more likely distinction for his fundraising role.
The book is by Ronald L. Smith, 1986, Cosby. New York, NY: St. Martin’s Press, 181 pages. Celebrity is a double-edge sword. Now, with allegations of sexual misconduct  by Cosby flooding the media, it’s probably a good thing there are no ties with NHF any longer.
Great Book I Just Read
It’s So Easy and Other Lies [Kindle]
Duff McKagan
McKagan tells the interesting, shocking and even poignant story of his rise from obscurity to incredible fame as a founder of Guns N’Roses in 1984, when he answered an add for a bass player by someone called Slash. Only 20 years old, naive and shy, he was thrust into the world of music industry sharks, massive egos, crazed fans, brutal travel schedule… and drugs. It’s hard to overestimate the impact the band had on his life: dubbed the most dangerous band in the world, headed by a seemingly ego maniacal front man, Guns N’Roses would sell more than 100 million albums. What makes this story so different than the ones I read by Slash himself and Chuck Negron recently, is the tone and the obvious depth McKagan has. He is a sensitive soul who loves his mother. He grieved when fans were crushed during one of their concerts. He isolated himself when he became addicted, sought help, and soon became clean; he buried himself in reading the Classics, shunned women, took up mountain biking (great section to read), became a devout martial arts student, and most amazingly, went to community college, then college to complete his degree with the enthusiasm of a child. It’s hard not to love this guy and applaud his amazing come-back and story. Wonderful read. Four/five stars just for heart.

Off to NHF in Chicago

This week is National Hemophilia Foundation’s 63 Annual meeting, so I am off to Chicago Tuesday to meet with many old friends and colleagues. These include patients (some of whom I’ve known since infancy and who are now in college!), parents, home care reps, pharmaceutical reps, hemophilia organization leaders, and more. It’s always a great event!

NHF expects probably 2,000-3,000 people to attend.

I hope to post during the week about what we hear and see.

One thing on everyone’s mind is reimbursement. With the new Affordable Care Act, so much has changed and is changing. We need to learn all we can at meetings like this to prepare for unexpected costs, and changes in health care delivery. One thing is certain: the hemophilia industry as we know it is permanently changing. And change may come faster than we think.

To start learning about current changes in reimbursement, start reading!

A great place to start? CSL Behring’s latest Key Issues Dialogue focuses on diminished access to care for people with rare diseases via interviews with our nation’s top specialists and advocates for people with chronic disorders.

Book I Just Read
Managing the Nonprofit
Peter Drucker

Drucker is considered a business guru, though this book, published in 1990, is a bit outdated. It’s a quick read, and loaded with nutritious food for thought. Drucker defines how nonprofits are different than for-profits, and was one of the early oracles to say that nonprofits need to think and operate like businesses. And leadership is key! He gives great synopsis of what effective leadership is. One I love and still use: “The most important way to develop someone is to use them as teachers.” And I live by: “Don’t guess, go ask.” Too many business people fail when they assume. This book is short, can be read in one sitting, but gives you hours of materials to think on. Three stars.

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