I earned a BA from the University of North Carolina in Chapel Hill ‘91 and a MA from North Carolina State University ‘94 in Political Science. I worked for the NC Medicaid program after graduate school and later for Blue Cross Blue Shield NC in physician and hospital contracting. Along the way, I met my husband, had a child, and then….my life took a hard turn personally and professionally when I had a blood clot—deep vein thrombosis DVT and pulmonary embolism PE.
My blood clots were not immediately diagnosed. My leg pain was initially attributed to a pulled muscle. My chest pain and shortness of breath was diagnosed as respiratory infection for which I was prescribed antibiotics.
Only after a second near fatal pulmonary embolism episode were he correct diagnostic tests performed and an accurate DVT and PE diagnosis obtained. I had a 9-day hospitalization, much in ICU. My family was told I might not survive. It was discovered I had a thrombophilia—a blood clotting disorder. This out-of-the-blue clotting experience became my initial motivation to become an advocate.
After recovery and hungry for educational information, I drove 3 hours to a seminar held by the National Blood Clot Alliance (at that time called the National Alliance for Thrombosis and Thrombophilia) where for the first time I met other patients with my condition. I began volunteering with them and at various points throughout the years, worked with them in chapter formation, education and communications. I’ve also volunteered with and support the work of the North American Thrombosis Forum, Women & Girls with Blood Disorders, World Thrombosis Day and numerous other nonprofits advancing thrombosis education and awareness.
In 2010, I began working at the University of North Carolina Chapel Hill School of Medicine where I co-founded a thrombosis education program called Clot Connect. I’m VERY proud of this quality endeavor. Sadly, it is currently unfunded and unstaffed.
Over the years as an advocate and educator, I’ve met family who’ve lost loved ones to blood clots or its treatment. I had no idea I would become one of those myself. My Dad had cancer and developed DVT and PE. While on anticoagulation, he developed an internal bleed and died. Thrombosis treatment, while life-saving, comes with known risks–namely a risk of bleeding. Anticoagulants are the #1 class of drugs for adverse medical events.
My personal goal has been to speak up for patients who have no voice. I’ve represented the patient perspective as a:
- Member of the Clinical Practice Guideline Panel on Thrombophilia with the American Association of Hematology ASH (2015-2018), advising in the development of evidence based clinical practice guidelines on VTE.
- Member of the Centers for Disease Control and Prevention Division of Blood Disorders (CDC DBD) Expert Panel on Prevention Research
- Advisor on Patient and Family Engagement to the Centers for Medicare and Medicaid (CMS) Partnership for Patients initiative targeting hospital-acquired conditions
- Member of National Quality Forum (NQF) Affinity Groups on venous thromboembolism and adverse drug events.
I believe it takes an informed patient and an informed health care professional working together for the most optimal health outcomes.
In addition to thrombosis education, my current passions include health equity and access. I am a strong believer in health equity and pharmacoequity. Social determinants of health are often overlooked as drivers of outcomes. Yet far often our health choices are determined by our zip code.
When I was born, my dad was working maintenance in a meat packing plant. He set aside $5 of his $35 pay that week in a savings account in the hope one day his child would have a better life. I was the first in my family to attend college and I believe I have an obligation to give back and speak for those who cannot. This is what drives my advocacy—those of us who can must act upon what we know. Knowledge empowers, action transforms. This is the philosophic core of everything I do.
Most recently I am focused on the issue of non-medical switching–when a patient’s insurance company forces them to change the medication they are taking for reasons that are not medical. These are usually for reasons related to cost. In January 2022, after 8 years of stability, I was forced by my insurance pharmacy benefits manager to switch anticoagulants for non-medical reasons against the prescribing advice of my doctor of 18 years. This is my newest advocacy passion: to ensure all patients have easy, affordable access to the medications prescribed by their physicians.