Social Impact Heroes: Why & How Dr. Amy Shapiro of the Indiana Hemophilia and Thrombosis Center Is Helping To Change Our World
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Amy Shapiro.
Amy Shapiro, MD, is Medical Director and CEO of the Indiana Hemophilia and Thrombosis Center in Indianapolis and Adjunct Senior Investigator, Clinical Track at the Blood Research Institute in Milwaukee, WI. Author or co-author of more than 320 journal articles, abstracts, and textbook chapters, Dr. Shapiro is clinically focused on improving treatment for people with rare bleeding disorders. She is one of the founders of the American Thrombosis and Hemostasis Network (ATHN) and has served as Co-Chairman of the ATHN Board of Directors, as well as the National Hemophilia Foundation’s Medical and Scientific Advisory Council and several boards for the National Institutes of Health in Data Safety Monitoring and Clinical Trial Review.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?
I have known I wanted to be a physician for most of my life. When I was eight years old, I was hospitalized, and I distinctly remember the physicians taking care of me and speaking to people around me as if I weren’t there. I thought, “maybe I’m eight years old, but I understand what you’re saying” and I made the decision that I wanted to be a doctor. I wanted to treat children differently than how I was treated.
My path to focus on pediatric hematology though was non-linear. I grew up on the East Coast and went to medical school at New York University, then completed my internship, residency and fellowship at the University of Colorado Health Sciences Center. When I first started out, I thought I would go into surgery, but I was drawn to pediatrics. Within pediatrics, I chose a focus on bleeding and clotting disorders (hematology) because it enabled me to care for people throughout their life. Additionally, the individual who ran the program where I trained, Dr. William Hathaway, was very inspiring and a pioneer in the field, and that sparked my interest.
Can you share the most interesting story that happened to you since you began leading your company or organization?
In my over thirty years as a physician, I have had the opportunity to treat bleeding disorders within many families, spanning multiple generations. I’ve had the privilege of being in one place for a significant period of time that I’ve treated patients that are now grandfathers, along with their children, and even their grandchildren.
In doing this, I’ve also seen the evolution of multi-disciplinary care and scientific innovation we’ve been able to provide people living with bleeding disorders — it’s very special and rewarding.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
In general, I think “mistakes” are actually opportunities that help us learn and grow. As a doctor, taking time to reflect on how you treat patients helps you make quality improvements and generate better outcomes. The most meaningful growth can happen when we have better data and strong communications with patients themselves, working with them to understand their specific situations.
Thirty years ago, we didn’t have electronic medical records, so it was much harder to facilitate this growth. Now charts are available nights and weekends — you can have 10 providers looking at one source of information and analyzing tremendous amounts of data, all with the aim to better understand and care for a person.
Can you describe how your organization is making a significant social impact?
People with bleeding disorders face a full spectrum of challenges in life. In addition to managing a chronic condition, children and adolescents have to navigate school, adults work toward being gainfully employed, and all strive to achieve their full potential as humans. They do this while trying to come to peace with their disorder on a psychological and physical level, and still feel like they’re whole and not “less than.” With this in mind, the hemophilia treatment center (HTC) at which I work employs a multidisciplinary care team, including physicians, advanced practitioners, nurses, physical therapists, social workers, genetic counselors, psychologists, career counselors, specialists in dental hygiene and nutrition, and pharmacists — all working together to help individuals achieve their goals. That’s what is so beautiful about the HTC network throughout the United States: we are united by our focus and desire to achieve the best outcomes for the individuals and families that we serve.
And it’s because of this strong collaboration that bleeding disorders are recognized on the national health agenda. In Healthy People 2030, a focused list of national objectives from the U.S. Department of Health and Human Services, bleeding disorders were identified as a pressing public health issue, alongside conditions such as cancer, diabetes and heart disease. Bleeding disorders are rare, but they are important.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
In approximately 1988, I had a collaborative project with the Mayo Clinic to perform genetic analysis in patients and carriers of hemophilia B (there are two main types of hemophilia, A and B). One family that responded to my request for project participants was Amish but having no interactions with the community where I grew up, studied or trained, I did not understand the magnitude of barriers they faced when it came to healthcare until I met this family. They did not have health insurance, didn’t drive, and most of the community lived three hours away from our treatment center. Because of this, after the study, I asked the family that participated if I could come to them and meet other individuals from their community who were affected with hemophilia to further discuss their care and issues, and they agreed.
We held the first meeting with affected community members in a family’s home. I remember pulling up a table and chair and pulling out a data collection form I had put together and asked who wanted to speak to me first. The men pushed one member forward to me named Richard. I started talking to Richard about his issues with hemophilia and how he treated bleeding episodes. He was hesitant at first but eventually opened up and became more animated talking about his experiences with bleeds and the burden it placed on him and his family. It became clear that there was a real need and opportunity for education around bleeding disorders — no one had provided Richard or his community the knowledge they required to manage or be a partner in management of their hemophilia.
At this point, all the men began to inch forward towards our table to hear and participate in our discussion and I ended up teaching them how to calculate a treatment dose and learn self-infusion which was met with uniform agreement and enthusiasm, and a sense of comradery and excitement. I had an extraordinary visit. I got everyone’s name and address, listed their issues, and left them with information and a beginning sense of empowerment. It took time to develop a trusting relationship and for them to believe that what we truly wanted was for them to receive good care. But in the end, we worked in true partnership together to develop a program that worked for them and achieved access to care at home. What starts with one chance encounter, one patient like Richard, can turn into something beautiful.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
Yes, raise awareness, strengthen datasets and partner together to improve care.
As mentioned, the inclusion of two rare hematologic disorders in HP2030, hemophilia and sickle cell disease, is such an important first set step in raising national awareness. This was made possible in large part due to the coordinated effort and advocacy of Health Resources & Services Administration (HRSA) and our network of HTCs across the United States. But to have bleeding disorders highlighted on a national agenda is just one step — we need to achieve the goals put forward.
So, the second priority is to strengthen our evidence base for individuals with bleeding disorders. We need to make sure we’re partnering with the regions, all the treatments centers and the patients to source and enter their bleed data, which will ultimately provide outcome points to demonstrate our progress. Having a strong set of data in turn helps strengthen our advocacy case for access to care, coverage and treatment centers, and the overall quality of care we’re able to provide.
On that note, finally, we as healthcare professionals need to work in true partnership to improve health outcomes for people living with bleeding disorders. There is a lot that goes into managing a bleeding disorder as I also mentioned, and we need multidisciplinary coordination and collaboration to support each patient in living their best life.
Our Community Counts project is a great example of a powerful partnership in action which pertains to all these things — we partner with HTCs across the country, the regional core centers, and the Centers for Disease Control and Prevention (CDC) to gather data about patients with bleeding and clotting disorders with the goal to increase knowledge, address barriers and ultimately improve patient quality of life.
How do you define “Leadership”? Can you explain what you mean or give an example?
Leaders guide others by example. Leaders listen. For me, as a physician, that means truly listening to what my patients say, to what my colleagues say.
Leaders look ahead and plan; they convey a vision. And they frame their vision in an inclusive way, so people feel a part of it and know they’re contributing to it.
Leadership is also being appreciative of everyone’s work; it’s never one person’s contributions, it’s always a boat being rowed together.
And leaders are positive and truthful. How can you be trusted if you’re not truthful? Medicine in particular is defined by being truthful and trusted.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
While I say I “wish” I were told many things, I probably was, and didn’t listen! The one that rises to the top is time management. The time commitment that medicine takes is extraordinary. It’s not just a job; it’s a calling and a mission. It is challenging to manage such an important part of your life and create balance, especially as a woman who also wants to nurture a family. Frankly, I’m still not sure if I’ve achieved that.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger.
I learned long ago that what’s most important in life is what you leave behind, not what you accumulate. And what you leave behind is how people feel about you and what you’ve done. Being in a field where you can impact someone’s life, where you can contribute, support and serve them … I see it as a privilege.
Also, I believe learning from each other, and accepting one another’s differences and diversity is important in generating positive change. Too much of our society sees differences as dividing, rather than celebrating them. Humans are capable of so much when they work together; there is so much potential and ability to do good in the world. There’s a phrase in Hebrew, “Tikun Olam”, to “repair the world”, and that’s what we should all strive for: to heal each other and heal the world.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
My favorite life lesson quote is by the French novelist Marcel Proust: “We do not receive wisdom, we must discover it for ourselves after a journey that no one else can take for us or spare us.”
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them.
That’s a difficult question to answer! There are many people I admire including Dr. Anthony Fauci from the National Institutes of Health, and Andy Peddicombe who founded Headspace, and more! Yet there are many people in my life that I do know and have had breakfast with and they are all loved and appreciated. I am very grateful for who I have in my life — family, friends, colleagues, and our patients and their families.