One of my favorite moments of the FORCE conference was having the honor to announce the FORCE Hereditary Cancer Research Fund. Below are some highlights from my presentations that mention this new and important FORCE initiative.
“Awareness and advocacy lay the groundwork for building our community and making sure that the needs of our group of important stakeholders is heard. Education is lifesaving. But research brings hope for our future generations! It is our goal to fund the critical research that will lead to better detection, prevention, and treatment of hereditary cancer. We can’t do this alone. We are hoping that you will all pledge your support.
So why does our community need to be more involved with research?
1. We represent an overburdened and under-resourced community.
Approximately 750,000 people in the United States have a BRCA mutation. We are about 1 in 500 people or about .2% of the population. Yet hereditary cancer makes up about 10% of breast cancer and ovarian cancer. So the way I see it, for every 998 people in the general population shouldering 90% of the cancer risk, there are 2 of us shouldering about 10% of the cancer risk. This is a disproportionate and unfair cancer burden.
2. Some groups are against genetic testing, screening, or prevention that benefits our community.
With a focus on sporadic cancers, their research priorities may be very different than those of our community. We must become more involved in order to assure that our priorities are also considered.
3. Current options for prevention, detection, and treatment of hereditary cancer are inadequate.
Below are some comments that our community members have shared with us about the limited options available.
‘It’s weird, but my Mom & I both had to have a rod put in our leg because of the spread of breast cancer to our femur. It’s like I’m repeating what my Mom went through.’
‘I am terrified of having my oophorectomy and hysterectomy and am considering canceling or postponing the surgery.’
‘I know I am at high risk & have been advised to remove my ovaries by age 35. That’s not ok with this unmarried woman with no kids…& it shouldn’t have to be.’
4. Hereditary cancer research opportunities are limited.
A big part of our role in promoting research has been to help our members find the clinical trials that they participate in. But there are not enough studies for our members who are looking to participate in research. Here are some comments from our members.
‘I am very interested in participating in ovarian cancer prevention studies – I have been trying to find one in my area so that I can participate and help with research.’
‘Please focus some research on detecting ovarian cancer earlier specifically in BRCA positive women.’
Below is a request we receive all the time:
‘I am struggling to find and get into a PARP inhibitor study. Can you help me with that?’
Families with inherited mutations have the highest known cancer risks. FORCE has created the Hereditary Cancer Research Fund to address our community’s critical need for research to develop better treatment, detection, and prevention options.
Our inaugural Research Fund Campaign, ‘Fix Our Genes’ represents our ideal.
We may never achieve gene repair but in the meantime it is our goal to fund the critical research that will lead to better detection, prevention and treatment of hereditary cancer. We can’t do this alone. We are hoping that you will all pledge to our hereditary research fund campaign. You will hear more about the research fund over the next few months.”