Women with metastatic breast cancer are writing to Living Beyond Breast Cancer to tell us how they feel about FDA’s decision to rescind approval of bevacizumab (Avastin) as a treatment for metastatic breast cancer. We will list comments alphabetically as we receive them.
We also encourage you to read our statement and statements from members of our Medical Advisory Board. We invite you to join the conversation. Write to us at email@example.com.
Updated December 24, 2010, 11:00 a.m.
Christi Turnage, breast cancer advocate living with metastatic triple-negative breast cancer
“My family and I are devastated that FDA has taken away a chance at life. Avastin was a miracle drug for me, and the agency is withdrawing one of the few options we have for metastatic breast cancer, especially triple-negative breast cancer.
FDA and its advisory panel, ODAC, confirmed that Avastin with chemotherapy holds cancer at bay longer than chemotherapy alone. The potential side effects of Avastin are the same for breast cancer patients as for people with other cancers. Why is FDA pulling the medicine from the breast cancer indication? We deserve the same right to choose treatment options. Although not a cure, Avastin is the best option we have right now, and it is my only option.
Insurance is not paying for a medicine that isn’t working—it only continues to pay for people whose cancers respond to it. If Avastin does not work, the patient does not continue to take it; instead, she switches to another treatment.
Just because Avastin doesn’t work for everyone, should it be withheld from everyone? The FDA has made a sweeping decision based on faceless statistical averages, while failing to take into account those of us who respond to Avastin. At the very least, the agency should allow those of us taking Avastin to continue on it. I found out I responded to Avastin and am even a “super responder.” The thousands of women who will be diagnosed with this disease in the coming months and years will never have that same chance.
The news media has said Avastin ONLY holds cancer at bay one to five months. That is the median, which means half do worse and half do better. Many of my friends and I are in the “much better” category, having lived several years after taking Avastin. Do the media not realize how significant that time is for us? When you’re metastatic, you’re told you have a 50-50 chance of living two years. All drugs can have side effects, but I deserve the right to decide what is too risky for me, particularly when the biggest risk to my life is stage IV cancer.
I just spoke with my insurance company, and it will not pay for Avastin once FDA approval is withdrawn. That gives me two more treatments. But this is not just about me. I have so many friends who are on this drug and have remained NED [with no evidence of disease] or stable for months to years.
The sadness of this day extends beyond the breast cancer community. I never thought my elected government would turn its back on me and thousands like me. If this can happen to Stage IV breast cancer patients, who is next? I ask everyone to sign our petition and to write your senators/congressmen/congresswomen and plead our case."