PV patient Betty Kester played a key role in discovering the Pennsylvania Cancer Cluster.
Betty and her husband Lester were in their mid-seventies when they were both diagnosed with polycythemia vera, at a time when they should have been enjoying their grandchildren and reliving the memories of their 50 year marriage. Instead, they chose to search for the truth about their cancer and give hope to others who were suffering from PV. As Betty led the charge, she soon learned that there were others in her neighborhood with this very rare cancer, as well as other types of neurological illnesses. Betty asked the question that is still being sought today, “What is causing our small community to get this rare cancer?”
Her worst fear was that a former Superfund Site behind their home had infiltrated their well and public water supply across the street. Through Betty’s courage and commitment to find answers, she had the water tested. A press conference followed disclosing the number of PV cases on one street and the need for further investigations. Basically, she had started a grassroots campaign to seek the truth about what was making people sick in her community. A perfect storm of physicians, citizens, patient advocates, and environmental professionals was growing and ultimately rallied around Betty’s mission.
After several years of meetings and investigations, and with the help of Senator Arlen Specter, the Agency of Toxic Substance Disease Registry began investigating the PV cases in Betty’s community. For two years, several meetings, press conferences and extensive reviews of the data collected in the area ensued.
In January of 2008, Lester Kester passed away. Betty told her friend, “We have to work harder.” After Lester’s funeral, Betty’s health began to deteriorate, but that didn’t stop her search for the truth and for hope to other patients in the community.
In August of 2008, doctors and researchers met in Philadelphia to discuss what research projects should be conducted in the area. Betty had been taken to her oncologist and family doctor as she was experiencing unbearable pain in her extremities. Instead of being admitted to the hospital, Betty insisted on attending the meeting. She said she would go to the hospital afterwards. “I started this thing”, she said, “and I am going to finish it.” The ATSDR announced at that meeting for the very first time that a “cancer cluster” existed in the area. An unprecedented admission by a federal agency that would have national and global implications for future research.
Betty was hospitalized that night and over the following days gave several bedside interviews with the press. She repeatedly told her friends, Joe Murphy, and Dr. Peter Baddick, a local physician whose relentless determination helped elevate the PV issue, to never give up. “We can’t give up on this now.” “I want you to promise me that if I don’t make it, you will take whatever tissue samples you need for future research”. That was Betty’s last and most important wish. Betty died on September 18, 2008.
With the help of the MPN Research Foundation and the grassroots movement that Betty started, the search for answers continues. Betty proved that bringing like-minded people together, focused on doing the right thing can uncover the truth and offer hope for the future.
The Betty Kester Memorial Fund will be used for targeted PV research and to manage tissue bank donations throughout the cancer clusters in the tri-counties and surrounding areas.
Contributed by Jennifer Acker
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.