Chris Hansen, ACS CAN President

ACS CAN President Lisa Lacasse shares her views on the impact of advocacy on the cancer fight.

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Guest Post: Enacting Change to Honor My Grandmother's Legacy

December 18, 2020

Patient participation is essential to the success of cancer clinical trials, which in turn are a cornerstone for accelerating innovation and medical breakthroughs. Yet, traditionally underrepresented groups – including communities of color – face barriers to clinical trial enrollment. Today’s passage of the Henrietta Lacks Enhancing Cancer Research Act represents a significant step forward in removing those barriers. The legislation is rightfully named after Henrietta Lacks, a Black woman who died from cervical cancer and whose cells, cultivated without her knowledge or her family’s consent, have been used to develop incredible medical breakthroughs including treatments for cancer, HIV/AIDS and Parkinson’s disease. I am honored to invite Alfred Lacks Carter, Henrietta Lacks’ grandson, to share his thoughts on this important bill and how he and his entire family are working to preserve his grandmother’s life and legacy and ensure Henrietta Lacks’ contributions to humanity are never forgotten. - Lisa A. Lacasse

For far too long, my grandmother’s name was known only to those of us who knew her as a loving mother and wife. Too few people knew and understood her far-reaching, worldwide contributions to modern medicine. For decades, Henrietta Lacks’ prolific cells that were taken without her knowledge or consent serving as the foundation for countless advancements in medical research, enhancing the lives of people and families who never knew her – including cancer patients and survivors. My family and I dedicate our lives to sharing her rich and important history and ensuring that her lasting contributions will never be forgotten.

This year marks Henrietta Lacks’ 100th birthday, a milestone that my family and I have embraced to spread awareness and appreciation for my mother’s incontestable impact on some of the world’s greatest scientific advancements. Our “HELA100” Henrietta Lacks Centennial CELLebration is our family led yearlong initiative  centered on educating future generations about her important life and legacy, all while promoting health equity and social justice.

We are thrilled that remarkable legacy will also be embodied in meaningful public policy change – change initiated by a bill that proudly honors my grandmother’s name. Today, Congress passed the Henrietta Lacks Enhancing Cancer Research Act, legislation that will identify barriers to participation in federally sponsored cancer clinical trials among traditionally underrepresented communities. Despite the fact that communities of color and other marginalized groups experience higher cancer rates and are less likely to receive optimal treatment compared to others, our communities continue to face challenges when enrolling and participating in clinical trials. This bill, which will direct the federal government to develop recommendations to help ensure all groups have more equitable access to potentially lifesaving advances in cancer treatment, is a positive and worthy reflection of the tremendous good my grandmother’s life contributed to the world. She truly is the Mother of Modern Medicine, and my family is proud that this impactful public policy change will continue the lasting medical and scientific improvements that my Henrietta Lacks’ cells have contributed to for nearly seven decades.

I was proud to begin this initial journey with our dear friend, the late Congressman Elijah Cummings. Today, my family is grateful to the patient advocates at ACS CAN. We appreciate the advancement of the effort the past two years, to educate volunteers, the public and, most importantly, our nation’s elected officials about this necessary change to help promote health equity in communities across the country. Just as my family and I have committed our life to action to address global problems including health equity, racism, ethical issues and education, we are proud to stand with other families impacted by cancer. As we end this pivotal year, we will continue in solidarity to eliminate the health disparities experienced by too many Black women and People of Color - demanding explicit action to honor Henrietta Lacks.