As we look ahead into the new year, and the changes it will bring, I’ve been reflecting on the importance of the events of 2020 and what we have learned. This past year, tumultuous and strange as it was, has taught us all some lessons that will guide me, NHF, and the bleeding disorders community in the years ahead.
The first lesson is how important it is to be in regular communication with you. The past year has been one where clear and unambiguous communication of facts has never been more relevant. At the outset of the coronavirus pandemic, we instituted a series of webinars that sought to answer your questions, help you find resources, and increase your understanding of how this virus was affecting our community. In 2021, we will continue this series each Wednesday, bringing you not only the latest information we have about COVID-19, but also information on new vaccines and treatments for coronavirus, new developments in the diagnosis and treatment of bleeding disorders, research into women with bleeding disorders, our approach to overcoming health inequities in the bleeding disorders community and much more.
The second lesson is that it is ever more critical that we listen to you, our community members. We are in an era of transformational discovery in bleeding disorders treatment and care. Gene therapy and nonfactor therapies will change our understanding of what it means to live with a bleeding disorder. But to fully understand it, we must make sure that you—the people who live with a bleeding disorder and your family members—are involved every step of the way. In 2021, we will put a major emphasis on understanding the gaps in care you experience and working with you and our entire community to close those gaps through research. We are currently assembling working groups to discuss, debate and plan the direction of research into bleeding disorders. In September 2021, we will be holding a State of the Science Summit that will bring researchers, healthcare providers, pharmaceutical and biotech companies, and you, together to prioritize and finalize plans for future research. Your voice and active participation along the journey are key to its success. The voice of the community must be at the center of bleeding disorders research. Therefore, I invite each of you to consider participating and contributing to this important work. Look for future news about how you can get involved in surveys, discussion groups and the summit.
The third and most important lesson 2020 provided me is that it is imperative that we expand our reach within the bleeding disorders community. This pandemic, and who bore the greatest burden, has made clear the appalling inequity in access to healthcare in our country – and the care of people with bleeding disorders is no exception. We must guarantee that people of color, people from underserved areas, those who don’t have financial resources to pay for medications and services, and women with bleeding disorders have the same access to treatment and services, are included in research, are welcomed and represented in our chapters, and most important, that their concerns and needs are heard and acted upon.
All these lessons have provided the imperative that NHF must widen our community. In over 35 years as a hematologist, I treated people with hemophilia and von Willebrand disease, but I also treated people with other blood disorders who didn’t have the array of treatment options, research opportunities, clinical services and support that many of you have access to. There are people with rare bleeding disorders, people with sickle cell disease, platelet disorders and Glanzmann’s thrombasthenia, thrombocytopenia, thalassemia, venous thrombosis and other inherited blood disorders who are treated at hemophilia treatment centers yet are not part of our community. In 2021, we will be reaching out to advocacy organizations along with people with these disorders, healthcare providers, and researchers to understand how we can work together to improve the lives of not just people with bleeding disorders, but people with blood disorders. We have a vision of a world without inheritable blood disorders. We will strive to move our mission to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy, enabling people and families to thrive. Together, with open, direct and honest communication and a renewed focus on research, that includes all members of our community, we can make that mission and vision a reality. Come along with us on this journey—together we are stronger and together we have a louder voice!
Peace and prosperity,
Leonard A. Valentino, MD