Dancing with Hemophilia: Janet Baldwin


By Richard Atwood

First published in PEN, November 2017

We repeatedly hear the message that regular exercise is beneficial for our health and well-being. Yet always heeding that advice over a lifetime can be a challenge. My suggestion? Include dancing as a fun component in your repertoire of exercises.

Exploring the world of dance, I became intrigued with Janet Baldwin, a hemophilia carrier. Janet made a lifelong career of dance in Canada, even performing at the 1936 Olympics. As part of her legacy, Janet inspired the award-winning Canadian author Timothy Findley to create a fictional character modeled on her life.

Catherine Janet Baldwin was born in 1912 in Toronto. Her family were descendants of the politician Robert Baldwin (1804-1858), who in 1841 brokered the coalition of Upper and Lower Canada—now known as Ontario and Quebec. This was an important step in the eventual formation of the provincial government of Canada. Something of a rebel in her wealthy family, Janet followed her passion for dancing to become a professional dancer,teacher, and choreographer. She studied ballet in Canada, America, and England. Janet went on to found her own ballet studio and to co-found the Canadian Dance Teachers Association. She was a member of the Royal Academy of Dancing.

A boost to Janet’s early dancing career was her 1936 marriage to Boris Volkoff (1900–1974), a ballet master who is sometimes called the father of Canadian ballet. Janet progressed from being Volkoff ’s student to being his wife and then his business partner in the Boris Volkoff School of Dance. Janet’s family did not approve of the marriage. The older, irascible Volkoff kept his Russian accent. He taught the more athletic style of ballet that he learned in Russia before defecting to Canada in 1929.

The couple’s personalities contrasted: Janet was known for her infectious energy, while Volkoff was considered flamboyant. Just a month into their marriage, the Volkoffs led a delegation of about 14 amateur Canadian dancers to the International Dance Competitions at the 11th Olympic Games in Berlin, 1936. The Germans wanted “art competitions,” including dance,
added to the Olympics, but the International Olympic Committee denied the request. Instead, the choreographer Rudolf von Laban organized dance celebrations before and during the athletic events. For political reasons, countries including America, England, France, Sweden, and Russia boycotted the dance competitions held in Nazi Germany; still, 14 countries participated. Because Olympic medals could not be awarded in dance, each participating dancer, including Janet, received a diploma. Volkoff, always a promoter who loved to exaggerate, maintained that of the six honorable mentions awarded, the Canadians were the only amateurs, while the other countries had professional dancers. Returning to Toronto, in 1938 Volkoff formed the Boris Volkoff Canadian Ballet, a nonprofessional ballet company, with Janet as his business partner. The couple also helped to organize the annual Ballet Festival, beginning in 1948, which brought together the existing Canadian ballet companies. Volkoff envisioned a touring professional company, but failed in his effort to be artistic director of the newly founded National Ballet Company of Canada in 1951.

Instead, the chosen director was Celia Franca, who promoted the British style of ballet, leaving Volkoff bitter and disillusioned.
The Volkoffs had a contentious marriage. A major issue was children. Volkoff wanted children, but Janet felt she shouldn’t have any because she was a hemophilia carrier. She feared that any male child with hemophilia would bleed to death. Janet had multiple abortions in Buffalo and Chicago under appalling conditions. After Volkoff had affairs with younger women, the childless couple divorced in 1951. Volkoff remarried, but when he was alone and dying in 1974, Janet remarried him without a license in a religious ceremony. Janet founded the Janet Baldwin School of Dance, and directed it for over 25 years. Late in life, she developed emphysema and, at the end, dementia. Janet died in 1990 in Toronto. Very little information is available about her family history of hemophilia, almost as if the family wanted to keep it secret. No other family member is identified as having the hemophilia gene, and Janet’s medical issues involving hemophilia are unknown.

Timothy Findley (1930–2002), author of The Butterfly Plague (1969), grew up in the prestigious Rosedale section of Toronto. He first met Janet Baldwin—notable for her white hair, blue eyes, and poise—when he was about seven years old. He remembered Janet dancing on the beach sand, or elegantly dressed at the Atlantic House Hotel in Maine where both their families vacationed every summer. Findley studied ballet, first from Volkoff and then from Janet, before a back injury ended his dancing career. He remembered the bruises caused by Volkoff ’s black walking stick, known as “Volkoff tattoos,” during his ballet lessons. Findley then turned to speech and drama classes so he could express himself as an actor before becoming a writer. The Butterfly Plague is set in Hollywood, 1938. Findley based his fictional character, Ruth Damarorsch, on Janet Baldwin—his friend,
teacher, and dance collaborator—even dedicating the novel to Janet. There are several similarities
between the real Janet and the fictional character: both are hemophilia carriers with white hair and
blue eyes. But there are also some differences, for example, in physical appearance and talents. Ruth wins three gold medals in swimming at the 1936 Berlin Olympics. She eventually has children in the   edition of the novel, but not in the 1986 rewritten edition.

Yet as hemophilia carriers, both Janet and the fictional Ruth felt they had “tainted blood.” Being a hemophilia carrier didn’t prevent Janet Baldwin from dancing her entire life. Sadly, based on the medical care available in the 1930s and 1940s, Janet feared that any of her children would die from hemophilia, so she did not car ry any pregnancies to term. Fortunately, today those medical concerns are allayed with appropriate treatment. I hope Janet’s story will inspire you to consider dancing as a form of exercise throughout your life. If you’re wondering whether I follow my own advice, let’s just say that I tend to dance in private.

LA Kelley Communications Origins: Part 2 PEN is born!

Laurie Kelley and Mary Ann Barth
1994

I thought my life’s work was
complete at age 33 when my book Raising a
Child
was published. It took eight solid months of grinding work, not
helped by the fact that there was no Internet, or decent word processing software
in 1990. I actually had one of the first Apple computers, with a whopping 128 MB
of memory!** And now I had a full-time job as an economist, a three year old
with hemophilia and a darling newborn daughter!

Laurie Kelley and Mary Ann Barth
reunite at NHF in 2014

But life had other plans. A
mom from North Carolina, Sybil, wrote to me (and I mean wrote, like a paper
letter; no emails for us then!) a wish: wouldn’t it be nice if we could somehow
keep the exchange of parental stories going? Like in the book, which included
the quotes of 120 different families with hemophilia. It was the first time in
history that families with hemophilia could read all about their disorder and
share in the experiences of other families.

Sybil thought a newsletter
could keep the stories going. Great idea. But how?

At the same time, a woman
named Mary Ann Barth, a cofounder of Quantum Health Resources, the homecare
company that shipped my son’s factor, got a copy of my book. She like it so
much she called me and asked if Quantum could support some initiative of mine. Perhaps
another book? Of course, Quantum wanted to put its name and logo on such a book,
the way Armour Pharmaceutical did. And why not? These companies paid for the research,
writing and publication. We then gave
away
the book. No royalties; no one profited. All the companies asked for
was to have their logos on the covers as an acknowledgement.
I’m a businessperson, and I
got it. It made sense. Like Nikon sponsoring the Olympics. Happens all the
time.
I suggested a newsletter to
Mary Ann (not yet knowing how I would accomplish this) and she happily gave me
a few hundred dollars to get sponsored. I only had 120 families on my mailing
list, the ones who contributed to the book. I called my new venture The Parent Exchange Newsletter, because
it would primarily be an exchange of parent and patient information, much like
the groups on Facebook do now. My resources were limited. I cut and pasted
paper submissions, and photocopied each newsletter and stapled them. I mailed
them and “PEN” was born! Primitive but effective!
After a year of this, Mary
Ann wisely suggested to let their promotional group help with the design. They
designed a simple but professional look to PEN. I submitted my articles, and
they did the layout and printing. We branched out to start writing about
topics, not just publishing family letters and photos.
Working by day as an
economist, full-time mother from 5 pm to 8 pm, then working on my newsletter
each quarter. We mastered home-infusion when my son was two so we were no longer
tethered to the HTC.
My biggest break came when my
colleague Rob Partridge, then Monoclate-P product manager at Armour, who had
approved my book and got me started, asked me to publish another book. The
first book was so successful; we had to do another printing soon! Families were
calling Raising a Child With Hemophilia
their hemophilia “Bible” and my mailing list grew with each family that wrote
to me. More shared their stories, watching to be heard.
Another book! But about what?
As my own children were
growing, I (who had a degree in child psychology and also had published
research on own children understand health and illness at different ages)
realized that as I read each night to my children books like The Hungry Caterpillar, Horton Hears a Who
or The Magic School Bus, there were
no books for children on hemophilia. Understanding how children learn to read,
and process their world at different age groups, a branch of psychology known
as developmental psychology, I felt equipped to try to write a children’s book
on hemophilia, to help children understand. Indeed, ideas just came to me as I
lived with trying to teach my own son about his disorder in a way he can
understand.
I proposed to Rob some
children’s books ideas, and he loved it! He approved. I also could sketch and
used to paint, so I was author and illustrator. I thought of a book or poems explaining hemophilia to preschoolers in a fun manner; a history book about Alexis, son of the last Russian tsar, a story which might have changed history forever. Remember I was reading Peter the Great while in labor with my son. I loved Russian history and wanted everyone to know why hemophilia is called the Royal Disease, and then to know the story of how hemophilia changed history, and created modern history. None other than Suzamme Massie, who helped write the Pulitzer Prize winning Nicholas and Alexandria, and whose son has hemophilia, helped me!
I realized that by lining up
some contracts for my newsletter (funding from Quantum) and my children’s books
(funding from Armour Pharmaceuticals) a dream was born: I could stay home with
my children. I wanted nothing more than to be a stay-home mom. I had worked so
hard, day and night, doing what we called “The Mommy Track,” trying to be a dressed
up businesswoman by day, mom by late afternoon and early evening, and now entrepreneur
each evening, I craved to be home to play with my kids in the sunshine, take them
to the park, to museums, the Boston Aquarium, make them lunches and relax a
bit.
 
With a year’s worth of book contracts,
I realized I could quit my job, thus saving a fortune in daycare, professional
clothing and dry cleaning, and gas. And make a little bit of money on the side.
I had paid off my debts and was ready to enter full time motherhood, with some
side projects.
In July 1991, I quit my job
at the economic forecasting company, waving good-bye to my colleagues of six
years, grateful for all the business, contracts and number-crunching experience
I had. These would prove valuable to me as my own business grew. PEN continued
to grow and became focused on teaching, rather than just sharing. And we had a
new children’s book called Just a Boy,
modeled after Dr. Seuss books. And more would come.
Best of all, I was able to
spend a whole summer with my four-year-old son and one-year-old daughter. We
lived in an ancient home in a crowded neighborhood—just ten steps and you had
traversed the whole house! But we didn’t care. We were home, healthy and making
a difference.
Next: Going Global!
** My computer? Macintosh
II, the first Apple with color graphics. It features 16 MHz 68020 processor,
and 1 MB of RAM. A basic system with one 800 kb 3.5-inch floppy drive, sold for
about $,3900. Ouch. But I am still a loyal Apple customer.

Don’t Quit Your Day Job

I had a nice visit this week from a young man with hemophilia named Tom. Not my son, another nice young man named Tom. I have determined that this Tom, age 26, is the person with hemophilia who now lives closest to me. Even my own son doesn’t live with me anymore, so he can be a substitute.

Anyway, the way we met was strange. Last September I decided to rip up the carpet in my basement, which was in dire need of extermination, after years of pets and children had taken their toll. I hired a local flooring company to place lovely tiles that are immune to regurgitated dog food and ground up Doritos. One of the three young men tiling my floor asked me, “Does your son have hemophilia? Because I do.” He had seen photos on my basement walls of me with Paul Newman at Camp Hole in the Wall (oh yeah, can’t miss that photo), and put two and two together. Here he was, on his knees all day, using really sharp cutting tools to tear up the carpet! We talked for a long time, and I sent him away with all kinds of books and newsletters, and told him to contact me if he ever needed anything. He only lives about three miles away.

So this week Tom did stop by. He quit his job. Tom, Tom! What were you thinking, I wailed, as if he were my own son. Now he has no insurance and no way to pay for factor. No unemployment checks, nothing. Tom also didn’t know what to do. He had never really been connected to the community, even though, as I learned, he and my son Tommy had the same nurse as children.

My first thought was, don’t get any more factor sent you from your home care company. If his rep decides to send a quick shipment and does not check in first… Tom could be stuck with a bill he could never afford. Did he contact his home care company immediately to stop any more shipments? No. I made him promise to call that afternoon, so he will not accidentally get stuck with a big shipment that would eventually ruin his credit rating.

Did he tell his HTC? No. That would be his next call. Does he know what product he uses? Yes. And thankfully, his home care company enrolled him in a coupon program, so he has lots of coupons. Cash them in! He should get some free factor.

After talking, Tom saw his error. A person with hemophilia if at all possible should never just quit their job. So much preparation needs to be done first. At least we have lots of help in this community. From ACCESS to PSI to the Hemophilia Hotline, Tom has many resources to contact for advise and help. And as he walked out the door (I couldn’t tell if he was happy or sorry he came), I handed him this issue of PEN–“What To Do When You Lose Your Insurance.” The forlorn young man on the front could have been him.

Guys with hemophilia–don’t quit your day job. Tough it out for the sake of your health. Or I am coming to lecture you, too.

Would You Rather Fight Than Switch?


The ongoing insurance cost-cutting has impacted hemophilia deeply, particularly since we are flashing beacon on payers’ radar. One of the most prominent impacts has been forced homecare switching. Reactions by families include irritation at being switched without forewarning; anger at being switched without any say in the matter; and fear at being switched to a company that has no experience with hemophila.

Read the current issue of PEN, which delves deeply into what is happening, why, and how this could impact you. We interview 17 patients and opinion leaders to see how forced switching is impacting lives. What we do know is this: forced switching is not something that can easily be reversed, and it is definitely a cost-cutting tactic that is here to stay. Tims are changing–read PEN to learn about all the changes and how to adapt while best protecting your loved ones with bleeding disorders. If you are not on our mailing list, please contact us at 978-352-7657 to sign up! It’s free to patients, HTCs and nonpofits.

Monstrous Acquisition of Factor Providers Looming

Happy new year! We’re off to an exciting but challenging start to this year in the bleeding disorder community. Witness what is happening right now, that should have you sitting bolt upright: a hostile takeover bid for Caremark. Do you use Caremark as your homecare company? Keep your eye on what is happening.

A year ago, my newsletter PEN predicted that specialty pharmacies would continue to merge as the home care industry faced unprecedented change while battling the “coming storm” in the insurance industry. Cost-cutting methods by payers are forcing the industry to rethink how it does business; and mergers provide ways to gain power, market share and possibly lower prices.

We’ve seen a tremendous number of mergers and acquisitions, but nothing on the scale of what is happening now. Express Scripts, one of the nation’s top pharmacy benefit managers (PBMs), has launched a hostile bid for Caremark, one of the largest factor providers, and also a PBM. The surprise $26 billion bid came in December.

In “Taking Center Stage” (PEN, May 2005), PEN explained that PBMs are business middlemen hired by employers and insurers to negotiate better prices from drug manufacturers and retailers. They encourage employees to use lower-priced generic drugs and less expensive mail-order pharmacies. PBMs are hired to save employers money by managing healthcare contracts and costs. But in the current wave of mergers, PBMs are emerging with great power, and can exert strong influence over pricing, especially for biological products like factor.

The Los Angeles Times predicts that the Express Script/Caremark combined company will control about 30% of the total PBM market, with $49 billion a year in revenue. That’s compared to its next biggest rival, Medco (which owns Hemophilia Health Services), with $38 billion a year in revenue. The LA Times also notes that not everyone is confident that more consolidation is good. There’s no guarantee that this merger will eventually pass along savings to employers and employees, including those with hemophilia. It’s true that the merged company will be the most powerful in factor distribution. Smaller, independent factor providers–a traditional and important part of the bleeding disorders community–face troubled times ahead as they play David to the industries’ newly-created Goliaths.

For more information, see “Express Scripts tops CVS in hostile bid for Caremark Rx.” Daniel Costello, Los Angeles Times, December 19, 2006, and visit archived article at www.kelleycom.com/archives.html.

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