Leadership, Remembered

This has been a week of leadership reflection regardless of who you voted for. I read from one news source that Biden made this a campaign about character; and many friends on Facebook stand by Trump for his policies. These traits, and so many others, are what make up leadership. While it has been a rocky week, and an exhausting, challenging year, it is all about leadership.

Laurie Kelley and Renee Paper 2002

I reflected on leadership this week coincidentally, while remembering one of the greatest and most unique leaders we ever had in the bleeding disorder community—Renée Paper. She passed away November 7, 2007, at age 49. If you ever got to meet her and hear her speak, you probably never forgot it. I always say she was a great lady, in size, intellect and passion. The most intelligent woman I ever met. She had a photographic memory, razor sharp tongue, ribald sense of humor, love of animals and fiery passion to help people. She was an emergency room nurse who had von Willebrand disease (VWD), and truly became our foremost spokesperson and advocate for women with VWD. After hearing her speak (like a cannon going off) at various events five times, I was so excited myself (why wasn’t anyone doing anything to help those with VWD?), that I talked her into co-authoring a book with me, which became the world’s first book on VWD, published in 2004.

I could not imagine that I’d lose this amazing person, who lectured like an old time preacher, who could draw audiences from young women to seasoned hematologists, who pounded the podium in her quest to get the NHF, the country, doctors, patients and even the government to take women with bleeding disorders seriously. Who can forget her favorite line? “Know why doctors don’t take us seriously when we tell them we bleed too much and too often? Because men don’t have uteri!” And she would smile to see the audience either squirm (the men) or roar with laughter and approval (the women).

She and I traveled together, presented together, wrote together. She loved coming to visit my zany household (“You let your kids roller skate in the house?” she asked incredulously) And then proceeded to reprimand me for not giving my elderly dog pain killers.

I loved Renée and sadly witnessed her demise; years of health issues took their toll. She died far too young. She had character and was a character. She also possessed those vital traits of great leaders: compassion, boundless energy, drive, passion, and vision. She didn’t live long enough to see her vision come true. We do have much better care for those with VWD now. But I often wonder hw much further we could have gone, had this amazing leader stayed with us a bit longer.

A new edition of A Guide to Living with von Willebrand Disease will be available in 2021.

Prepare for Big Changes

When we use the word “transitions” in hemophilia, we normally think about our child’s life cycle (or our own) and how it impacts healthcare: Children transitioning into adulthood at age 18 need to see an adult hematologist, not a pediatric hematologist. Adults finishing college or trade school need to transition into the workforce. Adults at age 26 need to transition off their parents’ health insurance. We may have joint issues as we age.

But we can also view transitions as something happening to hemophilia treatment, because that has a life cycle too. And right now, hemophilia treatment is undergoing massive, rapid change. New products, novel therapies, and gene therapy…can the US market of roughly 20,000 with hemophilia support all the products? Will insurance cover them all?

A Look Back: Our Infancy

If we accept that hemophilia treatment has a life cycle, let’s look back at its infancy and development. Early treatment for hemophilia involved whole blood transfusion and later, human plasma. Fresh frozen plasma (FFP) allowed treatment to be stored and then thawed when needed. Whole blood and FFP were both only marginally effective at controlling a bleed, due to the low level of factor VIII and large volumes that needed to be infused. Then, in the mid-1960s, came cryoprecipitate: rich in factor VIII, and created from thawed human plasma. Its higher factor VIII level in a smaller volume made administration easier, faster, and more effective.

A breakthrough came with commercial clotting factor concentrate in 1968, made from donated human blood or blood plasma. This new plasma-derived concentrate was freeze-dried and reconstituted with water when needed. Factor in a bottle! Now treatment could be done at home or away, freeing patients to travel and live more normal lives. Infusion time was tremendously shortened, meaning treatment could stop bleeding faster, reducing pain and helping to prevent joint disease. But these early factor concentrates were not treated to inactivate viruses. Tragically, in the late 1970s and early 1980s, contamination of the nation’s blood supply from donors infected with HIV, hepatitis C, and other viruses meant that clotting factor was also contaminated. Thousands of people who had hemophilia and used factor concentrates were infected and died.

In the mid-1980s, a new stage in the life cycle of hemophilia treatment emerged: the creation of factor that was virally inactivated. Viral inactivation processes, such as heat or solvent/detergent wash, could destroy the fragile HIV. Today, all clotting factor is considered safe.

The deaths of so many led to another groundbreaking stage in the life cycle of hemophilia treatment: recombinant clotting factor. Recombinant factor is produced in a lab, using human genes that are inserted into genetically altered mammalian cells. In 1992, the first recombinant factor VIII clotting factor product (Recombinate, manufactured by Baxter) was approved by the FDA. In 1997, the first recombinant factor IX product (BeneFix®, manufactured by Genetics Institute) entered the market. And now? There are now about 20 recombinant factor products on the market to treat hemophilia. We’ve come a long way.

The Family Expands: Crying for Attention

Why so many products? There are some things to know about the factor market. First, the US is the largest market. Not in population—that would be China. But in dollars. Estimates are $4.6 billion annually.1 This lucrative market attracts competitors. But factor products are protected by patents. So to avoid patent infringement, changes or improvements are made to products, making them slightly different. Some of these changes have involved production processes; and the quest to remove unnecessary human and animal proteins gave us “generations” of recombinant factor products.

Now we have three recognized generations of factor products: First-generation products use animal blood proteins in the cell culture medium, and add human albumin, a blood protein, to the final formulation to stabilize the factor. Second-generation products stabilize the factor with sucrose, not albumin. Third-generation products use no added animal or human proteins, either during processing or in the final formulation.2 Today, all factor products except for Recombinate and Kogenate® FS are third generation. A special shout-out to Octapharma’s Nuwiq®, a recombinant factor VIII product that uses a human cell line instead of an animal cell line in its production process.

Recombinant products, by reducing the potential for viral transmission, are an improvement over past products. And yet first-generation products remain in use, as do plasma-derived products. So far, there seems to be a purpose and a place for all products.

Growth Spurt!

But consumers want more. Researchers found ways to keep infused factor circulating in the body longer, by extending its half-life—meaning fewer infusions and less burdensome treatment. Eventually, extended half-life (EHL) factor was created. After a relatively calm 10 years in the marketplace with what is now called “standard half-life” or just “standard” factor, EHL factor came along, resulting in a big growth spurt in the life cycle of hemophilia treatment. Hailed as the next best thing, EHL factor was and still is heavily promoted. Biogen created the first two EHL products, which were soon followed by EHL products from Baxter (now Takeda), Novo Nordisk, Bayer, and CSL Behring.

  The creation of EHL products seemed like the exciting, wild teen years for our community. Children with hemophilia lived even more normal lives, without infusing so often. Freedom!

Family Feud

In the midst of this growth spurt and innovation, some major shifts were taking place in the hemophilia marketplace. Companies were separating, divorcing, getting married, taking on lovers, adopting other products. Baxter split off its biological division (which made its factor products) to become Baxalta. Genetics Institute was bought by Wyeth, which was then bought by Pfizer. In the early 2000s, Bayer had divested its plasma division, which became Talecris. Then Grifols bought Talecris (you can still see the primary color bar on the Koate®-DVI box, the same bar that appears on Kogenate FS). Biogen, soon after launching its groundbreaking EHL products, suddenly divested its hemophilia group, which became Bioverativ. Soon after the new sign was up at Bioverativ’s headquarters, it was bought by Sanofi Genzyme. Baxalta must have been a very attractive mate, because soon after it was spun off by Baxter, it was snatched up by Shire, an Irish pharmaceutical company. Just when everyone was getting used to Irish brogues, Shire was purchased by the Japanese company Takeda, a pharma titan.

 Perhaps no products have changed hands more than those of CSL Behring, starting in the 1980s, when it was Armour Pharmacuetical. And although CSL Behring has remained the parent company since 2007, it has recently abandoned some hemophilia products: Helixate® FS and Monoclate-P®. Its focus is now on EHL products only for hemophilia.

And this is the concern for the future life cycle of hemophilia treatment: Can the market sustain 20 recombinant products? Which products will be removed next from the marketplace? Will product change come from the consolidation of companies buying each other and reducing overlapping product lines? Will it come from flagging sales, if one product dominates the market? Or will product change come from a novel treatment—using no factor at all?

Newest Child

One product getting a lot of attention these days is the newest addition to the family—Hemlibra®, a nonfactor antibody product that mimics the action of factor VIII in the body. It’s used for prophylaxis in people with hemophilia A and inhibitors, and in those without inhibitors. The product’s clinical success has many patients cheering on Facebook, some advocates cautioning consumers to wait and see, and some doctors already prescribing it for newborns. Hemlibra is called a “market disruptor” for a reason. It’s created a whole new way to treat hemophilia: with weekly to monthly subcutaneous injections. And people with inhibitors are reporting no bleeds for weeks, even months in some cases. Will factor concentrate still be needed? Read Wendy Owens’s feature article in this issue to learn the answer!

The life cycle of hemophilia treatment has entered a new phase, perhaps similar to young adulthood, where there are many options, and our community has been educated and prepared. We’re ready for greater independence from this disorder, and ready to live life more on our own terms.

But like all young adults, we still need advice from our elders, from our blood brothers, from our physicians. And we need to do our own homework. We need to read about current products and new ones that will enter the marketplace. Do you feel informed enough to choose? Will your insurance cover all the new products? Will you switch to another product, if one day your insurance company no longer covers yours?

 Stay in touch with the life cycle of hemophilia treatment: name changes of the corporate players, which products belong to whom, and especially, the manufacturer of the product you use. Decisions at the top—by government, by corporations, and by insurance companies—may eventually impact your choice of treatment.

We have more freedom and more choices than ever before, but we need to exercise responsibility, by learning all we can. Because one thing is for certain: we are only in the young adult stage of hemophilia therapy. Prepare for more growth and more change.  It’s coming.

  1. Mark Terry, “A Look at Hemophilia Drug Prices and the Market,” biospace.com, July 3, 2018 (accessed June 2, 2019).
  2. Recombinate is a first-generation recombinant product. Kogenate FS is a second-generation product. Advate, Adynovate, Afstyla, Alprolix, BeneFix, Eloctate, Idelvion, Ixinity, Jivi, Kovaltry, Novoeight, Nuwiq, Rebinyn, Rixubis, Vonvendi, and Xyntha are third-generation products.

Leadership Lessons from the Andes

Iron cross at memorial, Valley of Tears, Argentina

On October 13, 1972, Uruguayan Air Force Flight 571 crashed at 11,710 ft in the inhospitable Andes, while bringing 19 young members of a rugby team, and their families and friends, to neighboring Chile. Thus began perhaps one of the greatest survival stories known. Amazingly, 33 of the 45 on board survived the initial crash, some with injuries that would later claim their lives. And 72 days later, 14 were rescued after two more of the survivors walked out of the Andes to find help.

It was a miracle anyone survived at all. Due to pilot error, the plane descended too early in dense cloud cover, and struck a mountaintop. The tail snapped off, then both wings were sheared off. What remained of the fuselage tobogganed down a steep slope and smashed into a mound on a glacier. Stunned, many in agony from wounds and shock, wearing only street clothes, the survivors sprang into action, displaying heroic teamwork.

I journeyed to the crash site on January 7, 2020, high in the Andes, accessible only by hiking or horseback, to pay my profound respect to those who perished. They are buried in a mass grave on a ridge near the crash site. There is also a makeshift memorial, with an iron cross, upon which people leave personal mementos. This story has touched millions of lives throughout the last 48 years, and only a few get to come here, to the “Valley of Tears,” to see the place where so much agony, sorrow, terror, solitude, struggle and leadership took place.


Yes, amazing leadership. In fact, what made the story at once famous and infamous in 1972 was the fact that the survivors were forced to eat the flesh of the dead to stay alive. But to me, this story was always one of leadership and teamwork, and the lessons learned from it are applicable to many situations, including hemophilia and bleeding disorders. I thought of our community often while in the Andes, and while reading the many books about the crash.  While there are many leadership lessons, I mention just a few here.

Leadership Lesson 1. Take action. Just seconds after the crash, those young men (some only 19 years old) who were not injured quickly rallied to help those who were. They triaged the sick and wounded so as to help those most in need.

Leadership Lesson 2. Establish a situational leader. Here, the natural leader, who was miraculously uninjured, was Marcelo, the captain of the rugby team. An immediate leader was needed to keep people focused and optimistic, and avoid hysteria. Marcelo, handsome, intelligent and commanding, was able to get people organized for the night, where temperatures were probably 30° below zero or more, block the fuselage hole with luggage to protect from the wind, and calm the group by discussing rescue possibilities.

Leadership Lesson 3. Use the tools at hand. The boys had nothing to prepare them to stay in the Andes. They wore light clothing, shoes. Luggage had been lost. But they made blankets out of seat covers, a water-maker out of metal sheets to melt snow, sunglasses out of materials from the plane’s windshield, to protect against snow-blindness, snowshoes out of cushions, and of course, food from the bodies of those who died.

Leadership Lesson 4. Form a community. Not all of the boys knew one another, and not all were rugby players. But they formed a community, calling themselves “The Society of the Snow.” And in this community, everyone had a role. They had a doctor (first year medical student), engineer (a 19-year-old with some experience), someone to make water, someone to cut the meat, and others to play various roles.

Leadership Lesson 5. Keep rituals. Despite the isolation and injuries, the boys kept up rituals, to provide a sense of normalcy. Every night, one of the boys started the rosary. A few of the boys were agnostic, but they joined in because it provided community and comfort. Even after the worst part of the entire ordeal, an avalanche on day 16 that killed 8 more of their friends and trapped them in a tomb-like environment for three days, they celebrated two birthdays, using a snowball and lit cigarette as a cake.

Leadership Lesson 6. Anchors. Anchors can be described as things we hold on to that give us mental stability and focus. Some boys looked at the moon every night, while shivering in the fuselage, knowing their loved ones were looking at the same moon. For Eduardo Strauch, who traveled to the crash site with us two weeks ago, it was the “Exit” sign on the plane, which oddly still worked and stayed lit at night. Each night he focused on it intensely, to remind himself he would escape. After he was rescued, he brought the Exit sign home with him. And of course, there is the little red shoe, symbolic of the entire event. (But you must read the books or watch the movie to learn its vital importance!)

Leadership Lesson 7. Be flexible with leadership. On the tenth day after the crash, the survivors learned from a transistor radio that the search had been called off. Marcelo, the positional and situational leader up till then, slowly despaired, and gave up his leadership position. His hopes had been dashed. Instead, three cousins—Fito Strauch, Daniel Fernandez and Eduardo Strauch—stepped in as provisional leaders and elders (at age 25, they were the oldest). Leadership became more consensual (group-like) rather than hierarchical.

There are so many more leadership lessons from this one event, 48 years ago. But these are the few that truly stood out during my visit. How many of these apply to bleeding disorders? An event that no one wanted (a plane crash versus a diagnosis). Situational leadership (uninjured versus young parents springing to action). Suffering (crash injuries versus bleeds into joints). Taking action (how to stay warm versus how to protect your child). Community (a group of boys stranded in the Andes versus a family with a bleeding disorder feeling alone). Communications (a small transistor radio versus internet, meetings).

There are so many parallels. Read the books and see for yourself, and be amazed at the human spirit, which has resilience, discipline, hope and faith.

Alive by Piers Paul Read

Alive (1993), movie now on Netflix

I Had to Survive by Robero Canessa

Miracle in the Andes, by Nando Parrado

Out of the Silence by Eduardo Strauch

Andes Survivor Expedition: Resilience, Dignity, Strength

is not the ability to recover. It is the ability to go through hell, to endure
the indescribable, and not to break.
—Pedro Algorta, survivor
It was a story
heard around the world in 1972—the “Miracle of the Andes,” some called it. It’s
a story that tore at hearts, shocked others, made new believers of God, and
made some turn away from faith forever. It’s a story you couldn’t make up, that
plumbed the depths of the human heart and soul. How does one survive the
impossible, and still retain dignity, humor, compassion, teamwork?
I have yet to
meet anyone in my life who has not heard of the Andes plane crash survivors. To
me, the story encompasses everything about life you might need to know. It is the
story itself of life. And the survivors, including the ones who survived impact
but perished before rescue, are heroes of mythical proportions. That is, until you
meet one of them. I was privileged to meet Eduardo Strauch last week, on an
expedition into the Andes, where we would have the chance to go to the crash
site. We spent the entire week together, along with ten other guests from
Argentina, Spain, the US and the UK. And our two guides, Ricardo Peña of Alpine Expeditions, and geologist Ulyana Horodyskyj.
Eduardo walked in
to the hotel lobby in Mendoza, Argentina, to meet our group, and seemed like a nobly aging warrior off the pages of a graphic novel. I have read three books on the
subject, the classic book Alive by
Piers Paul Read (three times), Miracles
of the Andes
, by survivor Nando Parredo (two times) and I Had to Survive by Roberto Canessa (two
times). I’m currently reading Pedro Algorta’s book Into the Mountains. Nando and Roberto were the two survivors who literally climbed out of
the Andes, after 60 days on the mountain, to seek help. (To this day, it seems
utterly superhuman and impossible.) I have watched the movie Alive countless times.
To meet Eduardo
was to meet someone legendary. Nowhere in history is there a story quite like that of the Andes survivors. Eduardo is at once dignified and friendly; a man with
an incredible history, and story to tell, who lives in the moment; famous, but
makes you feel as though you are the
important one. We instantly liked him, and our frozen awe began to thaw to a
warm friendship feeling. He is truly a wonderful person to know.
We spent a week together
traveling to the foothills of the Andes far outside of Mendoza. A four-hour car
ride, then we arrived at a farm of sorts, where we each got a horse, and loaded
our things for the week onto mules. At 70, Eduardo is handsome, fit and at ease
on a horse. With me was Angela Forsyth, a physical therapist from New Jersey, who works for
Diplomat and who I’ve known for probably 20 years. Our first day then was this
four-hour car ride followed by a four-hour horseback ride across an incredibly windy
flatland that threatened to permanently remove my cowboy hat, then up winding dirt paths into the mountains. We crossed several rushing
rivers that swept the accompanying, yelping dogs downstream and soaked our hiking boots. We
made camp that evening in a beautiful little valley, where the majestic Andes towered all
about us. We also had a small team with us to cook, handle the horses, and help
out with packing.
The next day,
Wednesday, we took a seven-hour roundtrip horseback ride up treacherously
tricky slopes, covered with nothing but rocks—the poor horses!—often at 45°
angles. It seemed we should have rode mountain goats instead of horses, but the
steeds handled it well, though they often looked quite wary. Our reward was a beautiful
mountain lagoon, left over from a glacial runoff.
The next day only
about half our group went to the crash site, another seven-hour roundtrip
horseback ride. The rest of us, me included, came down with either bronchial
issues from the tremendous dust kicked up by the horses as we rode, or a virus that
hitched a ride from Spain with Clara, one of the guests. Was I disappointed not
to get to the crash site, which was the whole point of the expedition? Not
really. First, Clara, the lady from Spain, is the niece of one of the young men
who died on impact from the crash. It was more important that she go to the
site with Eduardo. She had been sick the day before, but she rallied, and they went.
Second, I felt privileged to meet
Eduardo, a survivor of this terrible yet timeless event, and that was enough for me. He sat with us in the
evening after dinner in the mess tent, and answered our many questions about his experience. Our questions
were candid but sensitive. We asked him about leadership: how and when did he
and his two cousins become the de facto leaders of the group? About the role of
women: how did the boys treat one another after Liliana, the “mother” of the
group, died in the avalanche? (Without her feminine presence, the boys became a
bit more aggressive with one another) About faith: did this experience deepen
his faith in God? (The Read book made much of the issue of faith. Answer: no) About survivor’s guilt: did he suffer from it? (No) The
worst part of the experience? (The avalanche)
Laurie Kelley with Eduardo Strauch
We were enthralled.
We were like students listening to a sensei. And yet, the more Eduardo shared,
the more he seemed like a regular person, not a mythical hero, which I know he
does not want to be seen as. I saw how odd it is to put him, or anyone, on a
pedestal. He is relatable, real, though his experience was surreal. We ate
dinners together as a group, shared stories, teased one another, laughed, chatted
about normal things. We shared a laugh when Ricardo wanted to put Angie and me
in one very small tent. We are not ones to complain but… Ricardo looked over at
Eduardo’s larger tent and said, “Well, maybe I could ask Eduardo…” But I said,
no, whatever Eduardo wants, Eduardo gets. But after looking again at the small
tent… I said to go ahead and please ask Eduardo. I apologized later for kicking my hero out of his
tent! He laughed and graciously accepted the swap.
If you are
interested in leadership, teamwork, faith and survival under the harshest of
conditions, read the books I mentioned. At the very least, watch the movie
Alive. When you ask people about the greatest survival story ever, most people
will mention Shackleton and the failed Antarctic expedition. But he has nothing
on this story. To me, the Andes plane crash story is the greatest story of
survival, and I have read so many. It’s a story of deepest humanity, of people at
their best.
I asked Eduardo
on our last day, as we stopped at a tienda for cold drinks en route home, if he
could tell my readers one or two things he took away from his experience, what
he would tell us?**  “First, the power of
love,” he replied. When you lose everything, and can rely only on one another,
you learn the true meaning of love. “Love is everything. We loved one another
and cared for one another up there. And our love for our families back home
kept us going.” The second thing?
Carpe diem!
While Nando and
Roberto disappeared into the Andes for 10 days, Eduardo was left with the 13
others to wait, never knowing whether a rescue would come, whether the two had
fallen into a crevasse, or were killed in an avalanche or simply starved to death.
Their epic climb out got all the headlines, but it took incredible strength to
simply wait in the fuselage and not give up hope.
“You have more
strength in you than you will ever know,” he said to me assuredly, knowingly.

Roughly quoted, as I did not have my notebook with me. Apologies to Eduardo for
any misquotation.
To learn more about
the Andes Survivor Expedition: www.AlpineExpeditions.com

Eduardo Strauch
has written his own account of his ordeal, Desde
el silencio
, which is currently in Spanish only, and is available on Amazon.com

Want to be a Leader?

Leonardo di Vinci once wrote: Ask
advice of him who governs himself well. 
Learning to govern oneself is a principle of leadership, and can be taught and then honed. But not just through books. Often, the best leadership tenets are learned in real life. Bayer is offering a chance for young, potential leaders to govern themselves, test themselves and put their burgeoning leadership in action.
The Bayer Hemophilia Leadership Development Program is one of my favorite programs in our community. It’s a rare opportunity to be in the thick of decision-making, action and marketing. Read about it below, and apply at www.HemophiliaInternship.com! Deadline is March 13!

 Start shaping your future and your community! 
Apply today for the Bayer Hemophilia Leadership Development Program. 
Friday, March 13, 2015 at 11:59 p.m. ET 
To learn more and complete an application, visit www.HemophiliaInternship.com
 Making a change in the world begins by making a change in your community! Apply to be an intern through the Bayer Hemophilia Leadership Development Program and begin to learn how to be the change YOU want to see in the world. 
Students enrolled full-time in college who are touched by hemophilia can apply now for the opportunity to: 
Engage in leadership training and hands-on business projects 
Learn how to support the hemophilia community as a potential future leader 
Apply now for a six-week paid internship at Bayer HealthCare’s U.S. headquarters in New Jersey. 
In addition to working directly with leaders at Bayer, selected interns will: 
Collaborate with local hemophilia organizations and learn about efforts to support the hemophilia community and partnerships with business professionals 
Meet with healthcare public policy professionals to experience first-hand how effective advocacy relations impacts legislative decisions 
Be responsible for developing a project that will be presented to Bayer Senior Management.
Learn more at   www.hemophilialead.net

Great Book I Just Read
Take Yourself to the Top
Laura Fortrang
This is the perfect book for beginning leaders. A hard-hitting, direct and fun read about how to clarify your needs, set goals and remove obstacles to your goals. Fortrang is a life coach who shows us that without self-mastery, we will continue to be victims of our own biases, addictions, blaming mindsets, and circular thinking. A quick read, fun and impactful, you will start to make immediate changes after reading this! I’ve been reading this book for over 10 years every January to kick off the new year and get myself on track. It works! Four/five stars. 

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