October 09, 2020

Networking to enhance our mission

Over the past seven months the Campion Fund has realized the great power of networking with other organizations to further our mission. The old adage that two or more is better than one is really true. The impact of our mission to support reproductive science and to increase awareness of diseases of the reproductive tracts is enhanced.

The best example of this enhancement to our mission is what we have done in 2020 to assist the understanding of the pathobiology of uterine fibroids and to increase awareness of tremendous burden these tumors cause women of reproductive age. Increased recognition of this disease and its impact on women’s health is a pressing need. By promoting outstanding basic and clinical research, we will help discover improved medical treatments and important prevention strategies for uterine fibroids, a serious disease of the female reproductive tract.

Just before the Covid-19 pandemic shut down the United States, on February 28, 2020 we co-sponsored, along with the NIEHS, a meeting, Basic Science of Uterine Fibroids. Attended by international academic scientists, scientists from federal agencies, pharmaceutical companies and interested clinicians, the meeting provided an opportunity to hear presentations of current study findings, share new ideas and concepts and stimulate future research through networking. A Summary of Proceedings authored by the eighteen individuals who presented their work at the meeting was submitted to F&S Science. This paper has been reviewed and is in revision. By seeking publication of the data and concepts discussed we aim to reach a wider audience.

The meeting attracted the attention of the Society for Women’s Health Research (SWHR) staff, particularly Lucy Richardson who reached out asking for me as a representative of the Campion Fund to serve on the planning committee for their Virtual Fibroid Roundtable and Public Forum. These two programs were held on September 21, 22, 2020. Due to our membership on the committee, three of the presenters at our Basic Science meeting, Ayman Al-Hendy, Elizabeth A. Stewart and Jim Segars presented at the Roundtable. They presented on the topics of current basic science, clinical science and treatment options. Among other things, it was pointed out during the discussions that since fibroids occur in younger women it is imperative that health professionals caring for late adolescents and young adults need to be made aware of the clinical aspects of these tumors. They need education that very heavy menses cannot considered normal and is associated with fibroids. Attendees were reminded that the economic, social and disease burden of fibroids is greater than the same burden on women with breast cancer. This fact reminded me of the time I spent on several long- haul airline flights when the attendants would announce that part of the proceeds of the food sales on the flight would go to breast cancer research. I thought then and I still believe that there should be a similar collection for uterine fibroid research. Delta Airlines are you paying attention?

The highlight of this virtual event were the stories told by three women who suffer the burden of uterine fibroids. It was heartbreaking to hear the frustrations of these women due to the lack of treatment options and what they experienced as insensitivity on the part of the health professionals. The health professionals were not intentionally trying to be uncaring but they showed their lack of knowledge and understanding of uterine fibroids and their impact on women and was hurtful. This insensitivity demonstrates the critical need to truly educate women’s health professionals about all aspects of this disease. The two - day Roundtable was followed by a virtual two- hour public forum which provided a platform to raise awareness of fibroids to a larger number of individuals. The concern that emerged was the imperative to find ways for women with fibroid symptoms to see a care provider. The SWHR is currently preparing a white paper on Uterine Fibroids which will include the recommendations that were proposed at the Roundtable. SWHR will use this document to educate the pubic and to educate members of congress as they advocate for increased research and funding to design and implement educational programs for all women as well as for health professionals.

To our great gratification, our networking has given the Campion Fund the opportunity to learn from advocacy organizations. We are now partnering with Sateria Venable, Founder of the Fibroid Foundation to co-sponsor a virtual Fibroid Summit to be held February 22, 23. 2021. This will bring together women who have uterine fibroids and the scientists currently investigating their etiology, growth and development and potential new treatments for mutual benefit. By working together, we can begin to fulfill the needs of all women who are burdened by this disease and to provide new therapeutic tools to help conquer fibroids. We hope you will all attend the Fibroid Summit.

Written by Phyllis Leppert, MD. PhD