Alice Crisci, founder of Fertile Action, and contributing author to the fourth upcoming Oncofertility book, Oncofertility Communication: Sharing Information and Building Relationships across Disciplines, has been in the news recently for her vocal opposition to a California bill that prohibits women from getting paid for donating their eggs for medical research. Now at 11 weeks pregnant, we asked her to tell to share her cancer story with us, including her advocacy and policy work.
Q: Tell us a little bit about how you got involved in cancer and fertility advocacy?
I was diagnosed with breast cancer in 2008, and launched my non profit, Fertile Action, that same year. In 2009, I took my board to the National Breast Cancer Coalition (NBCC) annual conference. We were all shocked at the exclusionary policies of the NBCC towards young women, but had the good fortune of meeting with congress woman, Debbie Wasserman Shultz, about the Early Act (the Public Health Service Act to increase awareness of the risks of breast cancer in young women and provide support for young women diagnosed with breast cancer). We spent a day running around the Capitol lobbying for her bill, and I saw firsthand how I could be an influencer in setting or opposing policies. Since then I have worked at the California state level, and federal level on meaningful initiatives that support young adult cancer survivors.
Q: Based on your cancer diagnosis and treatment plan, how long were you advised to wait to start a family after you completed cancer treatment?
My treatment was very long – almost 3.5 years before I was taken off all medications. 2.5 years of that was spent in medical menopause so I was not producing hormones that could support a pregnancy. I started trying naturally about a year later and had three chemical pregnancies/early miscarriages. I finally decided to use the “totsicles” I created with a sperm donor when I was diagnosed. My first transfer was a success, and on my five year cancerversary I heard my baby’s heartbeat for the 2nd time and balled my eyes out! My doctor approved me going off tamoxifen early because of the additional treatment of medical menopause. It’s such a toxic medication that he recommended I wait six months before trying to get pregnant. That six month wait turned into almost a year before having my first pregnancy loss.
Q: How has your cancer survivorship care influenced your fertility story?
Had anyone told me when I was first diagnosed that I would be in some form of treatment for over 3 years, I wouldn’t have started! I thought it was surgery, chemo and done. Six months of my life, and that was that. I was very sick from all the treatment for so many years, then dealing with so many side effects after ending treatment, My fertility plans continued to get delayed. I was also financially devastated from going through cancer, and it took a long time to start rebuilding to the level where I thought I could afford a family.
Q: You have been a vocal critic of the CA bill prohibiting compensation to women for donating their eggs to medical research. How do you think a reversal of this bill would impact cancer care?
To date, we have focused more on quantity, but there are ample women like me who have eggs left that don’t produce a live birth. If we can study chemo’s impact on quality then we can also discover new interventions for preventing that impact. Fertility preservation is still prohibitive for many patients so we need to keep innovating in other areas. California’s current bill prevents any of the amazing researchers in this great state from conducting this type of study. Institutional Review Boards (IRB), especially at the university setting, do a great job of overseeing ethics, and preventing exploitation of vulnerable populations. In many cases IRB’s are much more restrictive than legislation!
To learn more about your fertility options following a cancer diagnosis, please visit www.SaveMyFertility.org.