I am haunted by the thousands of phone calls that went unanswered.
On the other end of the line there could have been a single mother, newly diagnosed with cancer, trying to figure out how she can be treated and keep working to pay the bills. Or a father whose 5-year-old daughter was just diagnosed with a brain tumor. Or maybe a young woman who just learned she has HPV and wants to know her chances of getting cervical cancer.
These are the types of calls and emails — 500 a day — that come into the National Cancer Institute’s Cancer Information Service at Fred Hutchinson Cancer Research Center in Seattle.
They are the calls my team was unable to answer for 16 days due to the federal government shutdown.
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As government contractors, we were among those deemed “nonessential.” We were given a stop work order on Oct. 1. That meant that instead of answering the calls at work, we sat by our own phones at home waiting for a call to tell us that the crisis was resolved.
Now that Congress has hammered out a budget deal, we can finally get back to the business of giving people information to help them make decisions. At least until the next deadline in mid-January. Then what?
Cancer isn’t politics. Cancer doesn’t haggle or negotiate. Cancer doesn’t stop just because the government shuts down. Some of those unanswered calls were from people who didn’t have time to wait for the government to get around to reopening. They needed information immediately. Instead, they got a recorded message about the shutdown.
Twenty-five years ago, I was one of those people. My 34-year-old husband, Jan Somsen, was diagnosed with melanoma, the deadliest skin cancer. I had three children, ages 2, 6 and 8, and a short window of time to become as informed as possible. I wish I had known the Cancer Information Service existed then. Instead, I was going to public libraries and trying to understand the terminology.
Jan had a terminal diagnosis and was admitted to three different cancer clinical trials at the National Institutes of Health. Although he died eight months after we learned he had cancer, he had the chance to participate in clinical trials — with the hope of surviving, or at least advancing the research surrounding his disease. Those trials were at the same place that was shuttered by the government, and may be closed again in January.
Hope is powerful. Information is powerful. Will this vital help be denied again a few months from now because, once again, our elected officials can’t do their jobs?
We’ve had people call and say they’ve been diagnosed with stage 4 pancreatic cancer and they don’t know what that means. One woman who had just celebrated her 50th wedding anniversary called because she couldn’t understand why her husband with cancer had “given up” and decided to stop having treatment.
We are not counselors, but we speak with compassion. We are there to provide information and help people understand. Our role is to answer questions and to figure out the question behind the question.
Wherever people are on the cancer continuum, we have information and can help them understand what it means.
Except we haven’t done this the past couple weeks. And possibly not again come January.
To Congress, I have this to say: Resolve this. Stop sliding deadlines and procrastinating on final decisions and resolve this. You were elected to run our government, not shut it down. Reach an agreement worthy of those who elected you, and stop putting people through this needless chaos — especially people like our callers, for whom your failure to do your jobs has very real, harsh consequences.
No one wants to have to call us. But each month more than 10,000 people need to. They deserve to have somebody pick up the phone and help them.
Nancy Zbaren is the director of the National Cancer Institute’s Cancer Information Service at Fred Hutchinson Cancer Research Center in Seattle.