Hard Lessons, Well Learned
'When I started my journey, it was only about a mother's love and trying to save my son. But the journey changed me, and I realized that what fueled my transformation could fuel the transformation of others -- and the success of an organization. My organization'
Hemophilia Health Services (HHS), a $15-million company I founded five years ago, provides medical supplies and resources to patients in the hemophilia community. It's an unusual company in many ways. Nearly half of our 50 employees live with hemophilia and HIV. In 1992 we gave back 55% of our net income to the communities we serve. And our corporate culture is a model of open-book management, participative style, and flat organization.
But it's my reason for founding HHS that sets us apart. The company is a public consequence of a private passion: to save the life of my son. Twenty-seven years of looking out for Kyle have taught me lessons that inform every aspect of HHS -- from how we approach our market to how we work with our employees.
Imagine the sense of dread, the sheer helplessness, when you just can't stop the bleeding. For two weeks you try everything to get the cut in your one-year-old's lip to close up. Sleep is impossible; you're far too busy worrying and blaming yourself. You're afraid to lay your little one down to sleep, for fear he'll drown in his own blood. Work no longer matters. Nothing matters but getting that lip to stop bleeding.
In 1967, after my son, Kyle, bit his lip, I already knew he had hemophilia; I'd found that out from a pediatrician who'd told me that was the reason for the spontaneous bruises on Kyle's back after his birth, in 1966 in Sioux Falls, S. Dak. When our pediatrician gave me the diagnosis of hemophilia over the phone, he told me Kyle might live to be 17.
And yet it wasn't even the medical agonies that were hardest. Living without information or support -- not getting good answers from doctors -- made me feel tremendously isolated. I didn't know that the information I needed might be out there, let alone how to look for it. It wasn't in my upbringing to challenge "the system." I had little sense of what information might do for me and Kyle, or of what we'd gain by my standing up to others.
I made a few tentative contacts, first at a clinic and later at a hemophilia chapter meeting at the University of Minnesota, where I met other parents of children living with hemophilia and learned I wasn't alone -- and that, yes, people with hemophilia do live beyond the age of 17!
But incidents like Kyle's cut lip told me I had to learn even more. And I started to realize that I had choices. I didn't always have to wait for doctors to grudgingly mete out information; I could actively seek it out.
It should have been obvious, I suppose, that information leads to real and (in a medical context) life-affirming choices. In 1969 I followed up on a small article I had read in the Wall Street Journal, getting in contact with the first U.S. maker of a clotting-factor product. Kyle became one of the first patients in the country to receive what is now a standard treatment. In 1974 we learned to administer the clotting factor at home, and when Kyle was 12 he learned to inject it himself.
Life started looking up. I began to see that information lets one exercise some measure of control over one's fate. The more I learned about hemophilia, the more I accomplished, and the stronger I felt. My growing confidence and sense of control made me feel less like a victim. Kyle and I trusted more in ourselves.
I saw that I was making a difference. In the hemophilia community, and even the business world, I was gaining influence. In the late 1970s I was reaching out to other families and to other mothers with children affected by hemophilia. Kyle and I took on political activities such as lobbying our state legislature to provide funds for people with hemophilia. In 1982 I left the nonprofit world for a sales job, and within a year I became the company's top sales representative. Within two I was promoted to sales manager.
The more I learned about how business was conducted, the more it astonished me. Those in authority were greedy. People withheld information to "win" because all were pitted against one another. The real losers were the customers.
My growing sense that major institutions controlled and victimized people was made real in the cruelest way: in 1984 we learned that HIV was present in the clotting factor. The very product that saved my son's life was now threatening it. Doctors and the pharmaceuticals industry had known of the danger for two years before I accidentally learned of it. Once again, I had to be an advocate for my son's life. To gain information, I accepted a position with the company that had pioneered home delivery of the clotting factor and that was later purchased by Caremark.
Then all the old feelings came flooding back -- the sense of vulnerability, isolation, and despair. I reacted physically. I developed allergies and asthma. At a medical conference in Omaha, I had trouble breathing and tried to hide it. My condition quickly deteriorated, and by the time I asked for help it was almost too late; I was rushed to the hospital and kept there for a week. My illness sent as clear a message as could be. I knew I had to get back to being strong, free of fear and aware of choices.
Taking that to heart, I returned to my home in Nashville and "fired" my doctor. Before my hospitalization, I'd asked him to educate me about my asthma, and his response was, "What is it you want to know? I don't have much time."
The strands of my life began to come together. My cumulative sense of empowerment converged with the opportunity to do something that would give others choices, too. At the time -- in the late 1980s -- the development of purer technologies led to a shortage of clotting product. Caremark was purchased by one of the clotting-factor manufacturers, leaving other manufacturers with no unaffiliated distributor. That meant there was an opening for a distributor that could offer hemophilia patients a wide range of treatments -- not just those from a manufacturing affiliate.
The fire that had fueled my transformation would fuel the success of my organization. It would be a complete support service for hemophilia patients, offering meaningful employment for people who cared and who desired to transform their pain by reaching out. I took the leap and formed my own company in September 1988.
Today, two principles form HHS's foundation: that information is empowering and that choices are life affirming. We work hard not only to give customers as wide a choice as possible -- every treatment option is available -- but also to teach them in workshops that they have choices about how they live.
Our employment policies center on trust and mutual accountability. Other companies that hire people with hemophilia give them part-time token jobs with no health insurance and no meaningful work. Not at HHS. We have a sales representative with a T4 count of 8. That's life threatening. But he has a career path here.
When I started my journey, I was only a mother trying to save her son. My journey has taken us both much farther, though. HHS is thriving, now employing 50 people. And Kyle, who started at HHS at the bottom, has worked his way up to become director of operations. He's 27 years old, a pilot and a scuba diver. And he's engaged to be married next spring.* * *
Dianne Martz is president and founder of Hemophilia Health Services.
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