When federal regulators meet in June to reconsider their decision yanking approval for a vital breast cancer drug, Michigan small-business man Terry Kalley plans to picket outside. He will be carrying a placard that declares: “My wife is NOT a statistic.”
 

Tragically, that may be the only way the Kalleys’ perspective will be heard.
 

Unless the Food and Drug Administration reconsiders, Kalley and his wife, Arlene, will be barred from testifying at the appeals hearing — despite the fact that the couple credits her survival to her treatment with the drug Avastin.
 

Avastin, the world’s best-selling cancer drug, effectively treats an array of malignant tumors by choking the blood supply cancer cells require to grow. But in December, the FDA announced it would rescind its approval of Avastin for breast cancer patients, on the grounds that, on average, Avastin simply doesn’t provide “enough” extra time. Drug-maker Genentech is appealing, arguing that a decision based on averages ignores the many individual patients who benefit hugely, including “super-responders” who say it has given them extra years.
 

The FDA scheduled an appeal hearing for June 28 and 29, but indefensibly, intends to prohibit any of the thousands of Avastin patients, their families and doctors from testifying. The FDA’s Karen Midthun, who will preside at the hearing, has rebuffed requests for additional public input. The FDA, noting that it heard from Avastin patients last summer, seems to suggest it needn’t trouble itself to hear any more.
 

That’s absurd — the patient perspective is crucial. The FDA needs to reverse itself and not only allow but welcome direct patient input on this vital public policy issue — one that could have implications for other drugs down the line.
 

As the director of the FDA’s own Center for Drug Evaluation and Research, John Jenkins, once rightly observed, “I think it’s very important to understand the patients’ perspective about how they value the benefits and how they are willing to accept the risk. A lot of us are basing these decisions in the abstract. We don’t have the disease, we haven’t achieved the benefit, and we do not actually have to weigh, personally, that benefit against the risk. Regulators and others may not consider those benefits to be very important,” he acknowledged, “but to the patients, they are extremely important and allowed them to go on about their lives.”
 

Some 17,500 breast cancer patients take Avastin every year. Thousands of these patients and their families have lodged gut-wrenching appeals, pleading for federal regulators to acknowledge the extra weeks, months and in some cases even years Avastin may provide. In letters, phone calls, web sites, online petitions and even YouTube videos, they have lobbied the FDA to understand that every day in which their cancers don’t progress means another day in which to have a candlelight dinner with their husbands, complete an important professional project, or bake birthday cakes for their children and grandchildren.
 

North Carolinian Shannon Morgan, in a letter published in USA TODAY, maintained that after three years on Avastin, she is able to work full-time and lead an active life. “The ability to make an informed choice and receive insurance coverage is all that the thousands of patients with stage 4 breast cancer are asking for, and that is the crux of the ‘Avastin outcry,’ ” she wrote.
 

Although research thus far hasn’t proven that, on average, Avastin extends life, it has provided clear evidence that the drug can slow the spread of cancer and improve quality of life. One study of patients taking Avastin with chemotherapy found that such treatment delayed tumor growth a median of about 11 months — five months longer than chemo alone. And some patients and their doctors report thriving for years on Avastin.
 

But the drug is pricey, and without FDA approval, patients will be able to continue treatment only if they can pay more than $8,000 per month.
 

As Terry Kalley recently explained, “If this costs 25 cents instead of $100,000, this would be a no-brainer to keep the approval.” His wife agreed, adding, “The FDA says the side effects are so terrible. Well, we’re going to die anyway, so let us sign a form saying it’s not the company or the FDA’s fault —we don’t care.”
 

Let’s hope the FDA is willing to listen.