The National Cancer Institute’s Cancer Information Service, housed at Fred Hutchinson Cancer Research Center, is now in its first full week of operation after being was closed as part of the government shut down Oct. 1.
Since the center reopened Thursday afternoon, the influx of calls has been heavy, especially because the shutdown fell during National Breast Cancer Awareness month, said Mike Roman, who works as a bilingual cancer information specialist. “Most of my calls have been from women desperately trying to seek breast cancer screening and have been unable to get ahold of us. And the women who are calling us are typically unemployed and have no insurance and have nowhere else to turn. I’m just so happy we were able to get back before the month ended so we could help them,” he said.
Funded by a contract from the federal government, CIS has become one of the NCI’s longest-running cancer education programs. It gives accurate, up-to-date medical information to cancer patients and their families and friends as well as to health professionals. An estimated 5 million calls and emails have come in since it began in 1975, according to NCI.
The center is the only one of its kind in the U.S., and it receives nearly 500 calls, 60 emails and 60 live chat sessions on a daily basis. It serves the entire United States through its 1-800-4-CANCER line and it receives emails and chat sessions from people all over the world through its web site www.cancer.gov.
During the shutdown, people who called the cancer line received a recorded message notifying them that the service was unavailable due to the lapse in federal funding and referring them to the web site, which told people not to send e-mail because they could not be answered. Still, during the course of the shutdown, nearly 700 emails came in, said CIS Program Director Nancy Zbaren.
On the first day of the shutdown, the Center’s 86 staff members were told not to come into work. Later in the week, 20 CIS employees who provide a quitline and text message-based smoking cessation service for veterans were allowed to come back to work because the VA was considered an essential service.
Adrianna Gutierrez, who works in the center as the bilingual operations manager said that some of her staff serving the VA contract were torn as emails for CIS flowed in. “The veteran’s line doesn’t get much traffic yet because it’s new and it was really hard because my staff could see emails coming for the CIS line in Spanish but they weren’t allowed to respond to them,” she said.
While there has been media coverage about the impact of the CIS shutdown on the community seeking help, less has been said about the significant effect it had on the staff. Zbaren said her staff went through a great deal of stress, anxiety and financial difficulty over the mandatory unpaid 12 work days off.
“It was really, really hard. We had no idea how long the shutdown would last. I was getting calls from staff about a variety of things but there was such a high level of anxiety,” she said.
One of the more demoralizing things she and her staff had to deal with were people who thought they were getting a free paid vacation when the government announced that it would give back pay for furloughed workers.
“The thing is, we’re not federal employees. We work on a government contract, so there’s no back pay coming to us,” she said. “People would say ’Oh man, it’s like a free vacation! You’re so lucky!’ It was very frustrating!”
For many of the staff members, the shutdown posed a serious financial hardship. While those who had accrued vacation time could use it, those who did not have needed to apply for unemployment.
“I’m the primary income earner in my family,” said Ben Seiglie, a cancer information specialist. “The uncertainty and anxiety was difficult and it’s not just how I feel but how it projects into my home life. You can’t get away from the stress of it.”
CIS supervisor Laura Rankin said that many of the employees experienced anxiety not only over their loss of income but a big part of the meaning in their life.
“One of my staff called feeling deeply in crisis. She said that she missed the work and really needs to be useful. It was really hard for her and others to have both her livelihood and her sense of purpose both taken away,” she said. “Everyone here is so dedicated to the work, it’s a double blow. And of course, it not just a job, but it is a job. We’re not volunteers. We have bills to pay.”
Many of the center’s employees filed for unemployment, but according to Fred Hutch Human Resources Employment Manager John Bartley even that was jeopardized when, due to their own lapse in federal funding, Washington State unemployment offices began shutting down administrative functions on October 7.
“We had no idea of how long the shutdown would last and we had to keep our approach fluid, depending on what happened,” he said. “When the unemployment office started shutting down, we had to turn on a dime and try to get people’s claims processed as quickly as possible.” Bartley, who spent the duration of the shutdown assisting the CIS employees for a significant portion of his workdays, was very concerned for his colleagues. “For some employees the impact on morale was really hard. To hear from the government that you are not considered essential is difficult to take, especially when CIS is such a crucial service to so many people,” he said.
It’s become clear just how crucial CIS is by the many calls and emails that have been pouring in since the shutdown ended. CIS staff is also beginning to go through the back log of older emails as well as take new queries.
“We’ve heard so many people say things like ‘We’re glad you’re back. One man calling to get information about his wife’s cancer this morning told me he was just so grateful that we were back open. It was the sweetest thing ever to hear,” said Cancer Information Specialist Dane Kuttler.”
Rankin, the CIS supervisor, said she’s gotten similar responses.
“I had one caller tell me, ‘We appreciate what you do so much. This is the best use of our tax dollars ever,’” said Rankin.