Cancer in Iowa: Here’s how Iowans are battling the state’s dire cancer rates

This story is part of a four-part series on cancer in Iowa that began last Sunday, March 24, and concludes today. Find all of the stories at thegazette.com/cancer-in-iowa.

CEDAR RAPIDS — Gary Streit grew up on a farm between towns in Northwest Iowa in the 1960s, surrounded by farmland awash with chemicals. His mom smoked like a chimney. His uncle had cancer and traveled at least five hours to Iowa City for treatment.

Yet cancer was rarely part of any discussion, said Streit, now a lawyer in Cedar Rapids.

By chance, he started volunteering with the American Cancer Society in 1977. His advocacy became more personal when his sister was diagnosed with breast cancer, his nephew with testicular cancer, and his wife with thyroid cancer — all in the 2000s. Blood tests and a biopsy in 2016 revealed Streit himself had prostate cancer.

Within months, he had surgery to remove his prostate. Now every year, he participates in the American Cancer Society’s Relay for Life to fundraise for fighting cancer. Last year, he walked 30 miles to raise more than $100,000.

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“I've been very intentional. If I know somebody else is going through this, I talk them through it,” said Streit, who was most recently chair of the society’s Iowa leadership board.

“One of my friends said to me, ‘I just can't believe how open you are about this,’” he continued. “If I broke my arm, I’d tell people about it. People need to get past the stigma — have to get past the fear.” Most recently, U.S. Secretary of Defense Lloyd Austin apologized for not making his prostate cancer diagnosis and following hospitalization public.

It’s now nearly impossible to overlook cancer as Iowa’s incidence rates soar to second-highest in the country, The Gazette has reported in its “Cancer in Iowa” series.

“If I broke my arm, I’d tell people about it. People need to get past the stigma — have to get past the fear.”

Members of the Iowa Cancer Consortium are battling the rising rates and advocating for change through the Iowa Cancer Plan. Researchers are investigating the role Iowa’s environment may play in the state’s cancer rates. The Iowa Cancer Registry is devising novel ways to locate and diagnose cancer clusters.

All the while, Iowans are fighting cancer in their own ways. They’re calling for more screening tests to detect and treat cancer earlier. They’re proposing policies that help prevent cancer — though few are actually gaining traction with lawmakers. And they’re assuming another powerful role: advocates who can raise awareness and demand change, all in the name of keeping Iowa’s population safer and healthier.

Screening saves lives

The earlier that cancer is detected, the earlier treatment can begin. Even more importantly, the earlier cancer is discovered, the easier it may be to treat.

That’s why regular cancer screening — tests that can pinpoint cancer at early stages before symptoms arise — is so important. Each exam looks for different signs of cancer. Mammograms, for example, use X-rays to detect tumors in breast tissue before they can be felt. During colonoscopies, doctors look inside the rectum and colon to look for and remove polyps, or abnormal tissue growths that could grow into cancer.

But some residents face barriers to receiving recommended screenings. Rural patients may be far from their closest provider. Some may not have transportation to get there, or the means or insurance coverage to pay for screenings. Others may not even be aware of screening options or their risk levels for certain cancers.

“A lot of things in the cancer world are just so unsure. So they’re afraid. They don't do their colonoscopies. They don't do their mammograms. There's much more effective lung screening methods out there today that people either don't want to go to or there are barriers to going.”

Only 10 percent of Iowans at high risk for lung cancer get screened for the disease, according to the Iowa Cancer Plan. Two-thirds of adults between 45 and 75 years old — the recommended age group — received colorectal cancer screening that met the U.S. Preventive Services Task Force’s guidelines. Three-fourths of women between 21 and 65 years old were screened for cervical cancer. And about 81 percent of women between 50 and 74 years old received a mammogram within the past two years at the time of the Iowa Cancer Plan’s publication.

“A lot of things in the cancer world are just so unsure. So they’re afraid,” Streit said. “They don't do their colonoscopies. They don't do their mammograms. There's much more effective lung screening methods out there today that people either don't want to go to or there are barriers to going.”

The Iowa Cancer Plan advocates for efforts that raise public awareness about cancer screening, especially for the communities most in need. The plan also calls for community-based strategies that strengthen trust in such services and the health care system. It says cancer disparities data can help accomplish these goals by identifying gaps in access, cost and care quality.

Several organizations are already heading these initiatives in Iowa, like the Center for Energy & Environmental Education at the University of Northern Iowa.

“I don't think we have a very strong environmental health literacy. Our outreach to communities and professionals is often at first met with surprise and shock.”

The center’s two public health initiatives — Good Neighbor Iowa and Farming for Public Health — help turn science into action. They translate the latest research about health risks, including those relating to cancer, and integrate the messaging into their outreach to communities statewide. The programs focus on raising awareness about environmental and agricultural contaminants, like pesticide usage and exposure.

“I don't think we have a very strong environmental health literacy,” said Audrey Tran Lam, the center’s environmental health program manager. “Our outreach to communities and professionals is often at first met with surprise and shock. It takes a little time in order to move the needle, I think, in terms of action.”

The AgriSafe Network, a national nonprofit founded in Iowa, specifically targets health challenges and disparities among the agricultural community and rural health care providers. It helps connect producers to medical providers, raises awareness about ag-specific health risks, and better educates nurses about rural health issues.

Any given year, at least a third of AgriSafe’s cases involve cancer, said Charlotte Halverson, a Total Farmer Health Coach for the network and one of the nurses who founded the nonprofit. She recounted a pop-up skin cancer screening booth at a Dubuque County fair years ago, where volunteer dermatologists spotted handfuls of new skin cancer patients every day.

“We've tried to be proactive and really encourage people with any kind of cancer … to get screenings,” she said. “Be your own advocate.”

Cancer screening guidelines

For early cancer detection, the American Cancer Society recommends:

• Women start getting annual mammograms, which detect breast cancer, at age 45 at the latest.
• People at average risk for colorectal cancer, like those who do not have a family history of colorectal cancer, start getting regular stool tests or visual exams at age 45.
• People start getting screened for cervical cancer at age 25, along with getting tested for HPV, a sexually transmitted infection that can cause the cancer among others.
• Women approaching menopause talk to their doctors about endometrial cancer and consider getting a yearly endometrial biopsy.
• People who heavily smoke or used to heavily smoke start getting yearly screened for lung cancer at age 50.
• Men talk to their doctors about getting tested for prostate cancer at age 50, or earlier if you’re at high risk due to genetics.

The Centers for Disease Control and Prevention recommends screening tests for breast, cervical and colorectal cancers. It also advocates for lung cancer screening for high-risk people. It says that screening for ovarian, pancreatic, prostate, testicular and thyroid cancers has not been shown to reduce deaths from those cancers.

Policies help prevention

Screening catches cancer at its early stages. But being one step ahead of the disease means stopping it from happening in the first place — also known as cancer prevention.

Iowa residents can take their own steps to protect themselves from cancer, like staying active and not smoking. Public policy plays a big role in encouraging those efforts. It can incentivize such activities, fund related programs or mandate regulations that support cancer prevention in Iowa.

While the Iowa Cancer Consortium doesn’t lobby on legislation, it advocates for a variety of policies relating to cancer prevention, detection and treatment in its Iowa Cancer Plan.

Its recommendations include:

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“Increasing the tobacco tax is probably the single biggest thing we could do in Iowa to decrease our rate of lung cancer,” said Mary Charlton, University of Iowa epidemiology professor and director of the Iowa Cancer Registry. “It's just a fact. It's been shown in other states that that's the thing that works the most.”

In Iowa, state policies have not kept up with the pace of cancer research, sources told The Gazette, despite recent efforts by some legislators.

Reps. Austin Baeth, D-Des Moines, and Hans Wilz, R-Ottumwa, teamed up this legislative session to introduce a suite of cancer-related bills. One would restrict minors from using tanning beds, which are associated with melanoma; another would increase the state’s cigarette tax from 6 and eight-tenths per cigarette to 10 cents per cigarette. Neither survived the first two funnel weeks of the session.

Only one of their bills has gained enough traction to make it to floor debate so far: House File 2491 would require new single-family or two-family homes to have radon mitigation systems. The bill passed the Iowa House earlier this month but was not considered by the Iowa Senate. It’s the farthest such a proposal has made it through the Iowa Legislature, Wilz said.

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Time will tell if the state legislature approves any appropriations for cancer research and prevention this session. Lawmakers currently are working on the next year's state budget, which begins July 1.

Baeth and Wilz proposed $300,000 for radon awareness and outreach, $900,000 for developing a plan to reduce Iowa’s obesity rate and $2 million to conduct a review of state cancer surveillance data. Rep. Josh Turek, D-Council Bluffs, proposed a standing appropriation for pediatric cancer research at the University of Iowa Hospitals and Clinics that would equal the state’s population on July 1 of each fiscal year.

A bill from Reps. Brian Lohse, R-Bondurant, David Young, R-Van Meter, and Shannon Lundgren, R-Peosta, was referred to appropriations. It would require Iowa insurance plans to cover biomarker testing when used to diagnose, treat, manage or monitor cancer.

“(Cancer) was on the minds of many... I think there's definitely more emphasis on it,” Wilz said about this year’s legislative session. “As we keep putting it to the forefront, there's an absolute opportunity for us to do better. And to do better doesn't always mean dollars and appropriations. It means saving lives.”

Taking action with advocacy

Scott Kaas, 52, has been involved with the American Childhood Cancer Organization’s “What About Kids?” research initiative for two decades. He has talked with legislators around Iowa — including Gov. Kim Reynolds — trying to push for more funding for pediatric cancer research.

His life changed when his daughter Devyn was diagnosed with acute myeloid leukemia at 7 months old last year. After five rounds of chemotherapy, she gets to live at home again. Her appetite has returned. Her hair is finally starting to grow. And, last month, her family received good news: She’s in remission.

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Scott’s work, though, hasn’t stopped. As Iowa coordinator for the “What About Kids?” initiative, he sends emails to Iowa legislators every day, urging consideration of policies that support cancer prevention and research. He has even invited state officials to the University of Iowa Stead Family Children's Hospital — where his daughter was treated — for a tour.

But many of the cancer-related bills he was pushing for didn’t even survive this legislative session’s first funnel deadline. “Your request is on the list of the millions of dollars that have been requested by numerous groups,” Rep. Joel Fry, R-Osceola, chair of the Iowa House’s Health and Human Services Appropriations Subcommittee, wrote in an email response to Scott Kaas advocating for more funding for pediatric cancer research.

The lack of urgency is frustrating, Kaas said. “It might take three years to find a cure for one type of cancer, or a drug that helps change a treatment plan,” he said. “The more time they take dragging their feet to pass these bills... We could lose some kids. It's tough.”

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With an opponent as invasive and alarming as cancer, it’s easy to feel powerless. But people like Kaas and Streit have found their weapons — and their voices — through advocacy.

Advocacy starts with education: Learn more about cancer risks and prevention efforts, sources told The Gazette, and have conversations with your loved ones about it. Anyone can contact their local legislators to express their support for or opposition to an issue, and registered voters can vote for legislators who best represent their values and priorities.

Anyone can be a cancer advocate, said the Cancer Support Community, a global nonprofit with 190 locations that deliver free support and navigation services to patients and families.

“Devyn will be a voter one day,” Kaas said. “It matters that our state government cares about (cancer) and does something about it — not just for us, but to prevent it for themselves and their family.”

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Brittney J. Miller is the Energy & Environment Reporter for The Gazette and a corps member with Report for America, a national service program that places journalists in local newsrooms to report on under-covered issues.

Comments: (319) 398-8370; brittney.miller@thegazette.com