A Consumer's Perspective: Ms. Beth Emery
I am alive today because of a research grant funded by the Department of Defense Breast Cancer Research Program (DoD BCRP) to Dr. Dennis Slamon. That groundbreaking research led to the development of my personal miracle drug: Herceptin.
It was May 2008 and a month before my annual mammogram. I felt a lump in my breast that seemed about the size of a half dollar. My son was home between college and starting work on Wall Street. My daughter had just finished high school. My annual physical, which included a breast exam, had been a month before with no issues. So I assumed the lump was the result of my recent road warrior injury - large carry-on bag collides with harried traveler, leaving big bruise.
After a circus of errors (don't mention a lump if you are in for a screening mammogram or they will turn you away until you get a doctor's order for a diagnostic mammogram), things went at light speed. By July 2nd I was at MD Anderson getting a complete workup. A week later I started neo-adjuvant chemotherapy. Unlike many who surf the web to learn all they can about their illness, thankfully I remained blissfully ignorant of what Stage 3 Her2+ breast cancer meant. I was being treated at one of the world's best cancer centers, so I assumed I was going to be all right. I didn't fully understand how serious Her2+ breast cancer was until the next fall when I watched the movie Living Proof about Dr. Dennis Slamon (and read the much scarier book by Robert Bazell: HER-2: The Making of Herceptin).
It was a gift to be treated at MD Anderson. The greater gift, however, was learning that I could use skills developed over 25 years as a lawyer to be a breast cancer advocate -fighting for important legislation, and working as a trained advocate on research peer review panels. My advocacy began shortly after I signed up for a Stage 3 clinical trial my oncologist was running. No new drug or treatment was involved - the study switched the order of the standard of care chemotherapy to see if order mattered. To participate, I would be flying to Houston weekly; but I felt blessed to be at MD Anderson, and the extra flights seemed a reasonable price to pay to give back. I was shocked when I showed up the next week and was told that if I participated in the clinical trial, my insurance company could deny me all insurance coverage. Even for my allergy shots. About half of the states had banned this practice by 2008, but not Texas.
I immediately turned to friends in the Alamo Breast Cancer Foundation (ABCF) to see what we could do to change such a short-sighted law. The next February, sporting my new prosthesis and still mostly bald hairstyle, I sat before the Texas House Insurance Committee urging passage of a bill ABCF had written in 2007. That year we got it passed and my "real job" as a breast cancer advocate had begun.
Soon thereafter, I went to the National Breast Cancer Coalition's Advocacy Conference and was hooked. I took NBCC's week-long Project Lead Institute course, and began writing model legislation that would ensure insurance coverage for patients in clinical trials. Thankfully, the Affordable Care Act now ensures coverage nationwide. I have continued to work with ABCF, which lobbies every other year on important Texas laws. And each year I head to Washington, DC as an NBCC Team Leader to lobby for continued funding for the DoD BCRP, and NBCC's signature "Deadline 2020" legislation. My favorite advocacy work, however, is the unique opportunity to sit on peer review panels for the DoD BCRP. It is a powerful feeling knowing that I might be reading a grant application from a researcher who will change the lives of future breast cancer patients, just like the BCRP grant to fund studies on Herceptin changed mine.