In 2009, 181 women from 31 different countries created the largest all-female skydiving formation in history. What would possess so many daughters, mothers, and even grandmothers to don pink jumpsuits and free fall thousands of feet? The same things that motivated me to get involved with “Pink Skies,” the new film that documents the record-breaking jump: celebrating breast cancer survival and helping to raise more than a million dollars to fight a disease long overdue for a cure.
Getting my cancer diagnosis 15 years ago, at only 38 years old, was shocking and heartbreaking. While most friends enjoyed their late-30s with few health concerns, I endured painful radiation burns and slowly lost my hair, my breasts, and even my range of motion. What was also disheartening was the bureaucratic nightmare brought on by my insurance company — and, as of last year, the FDA.
Though I was fortunate to have had health insurance throughout my illness, as well as top-notch doctors I trusted, my prognosis took a turn for the worse in 2007: the cancer, which had been stable for years—thanks in large part to Herceptin, a cancer drug I started taking in 2002—had become metastatic and spread to my lungs and sternum. Immediately, I began a cocktail of aggressive treatments. First, I tried Tykerb and Xeloda. That didn’t work. Then I tried Tykerb, Carboplatin, and Gemzar. Still no improvement. Finally, following a 30-day drug wash-out and regroup with a new doctor, we tried again. This time, we paired Tykerb with Herceptin. My body’s response to this last pairing was disappointing. The Pet/CT scan showed continued progression. My goal then became survival, but not at any cost; quality of life was very important to me.
Following that Pet/CT scan, my doctor suggested I try Avastin. The drug, which cuts off blood supply to tumors, had only earned FDA approval for my type of cancer the year before, and many women were having success with Avastin – without tremendous side effects. I was hopeful it could do the same for me.
Almost immediately, it did. Avastin gave me my first stable, progression-free scan in years. Today, almost three years since I began the regimen, I’m not only still here, I’m enjoying life to the fullest with my family and friends.
Despite my and thousands of others’ enormously successful experiences with Avastin, neither the health insurance companies nor the FDA really cares. Well, maybe they would if Avastin weren’t as expensive as it is – close to $8,000 per month – but given the coldness with which Anthem Blue Cross refused coverage of my initial Avastin prescription, I can’t be sure. Not only did Anthem Blue Cross refuse to cover my Avastin regime, they went so far as to explain that the reason behind their rejection was because they considered the drug “salvage therapy.” In other words, this was a last-chance-at-life drug, and to them, apparently, my life wasn’t worth “salvaging.”
Had Avastin’s manufacturer, Genentech, not placed me in its patient assistance program, I would never have been able to afford the drug responsible for me being here today. Fortunately, other breast cancer patients with better insurance carriers have been able to get Avastin at a subsidized, affordable price – an arrangement, however, that isn’t likely to last. Last December, the FDA moved to strip Avastin of its approval for breast cancer. Ignoring clinical studies and patient testimonials – mine included, which I sent to the FDA’s headquarters – this step is the first in cutting off Avastin to all breast cancer patients. Without an FDA approval, especially for a pricey drug like Avastin, insurance carriers and Medicare almost always drop coverage.
The month before the FDA’s decision, my doctor and I decided to stop my Avastin treatment when my protein levels rose too high and the risk of kidney failure became too great. But I am the one who made that decision – not the FDA and not an insurance company.
Whether Avastin keeps a breast cancer patient alive an extra three months or an extra three years is a silly debate. Life doesn’t have a price. Maybe someone needs to remind the FDA of that fact.
Flori Hendron is 15-year cancer survivor. She lives in Beverly Hills, Calif.