‘It feels like being punished’: Cancer survivors, advocates want protection from screening costs
Cancer took so much from Doris Cardwell.
She and her family were uprooted from rural South Dakota in 2007 to treat her aggressive breast cancer diagnosis.
She spent over a year in treatment: enduring radiation, a mastectomy, and a hysterectomy to hold the cancer at bay.
Nearly 17 years since the disease was last found in her body, cancer keeps on taking. Cardwell is paying thousands of dollars out of pocket for breast imaging to ensure her cancer hasn’t returned.
And it’s not just her. It’s also her three daughters.
Cardwell, who lives in Spearfish, was 38 when she was diagnosed, so her daughters started screening when they were 28. Since their mother and grandmother were both diagnosed with breast cancer, they’re considered high-risk patients in need of more frequent and intense preventative screening than an annual mammogram. Depending on their age and insurance, their mammogram might be covered, but not other screening methods.
Cardwell feels guilty because her out-of-pocket costs for her semi-annual breast MRIs are between $3,000 and $5,000 a visit, and she knows her daughters are saddled with those same costs.
“It feels like being punished for wanting to live a good life and catch things early,” Cardwell said. “As a mother, I’m so thankful to be here and for the care I received that kept me alive, yet my heart breaks realizing how my daughters and grandchildren have to be physically and financially concerned.”
Cardwell’s daughters are among the 15% of women who are classified as high risk for breast cancer. For women in the United States, breast cancer is the most commonly diagnosed cancer and the second leading cause of cancer death.
Cardwell spoke to a legislative committee last winter in support of a bill that would prohibit health insurers from imposing cost-sharing on patients for supplemental and diagnostic breast cancer screenings. The committee rejected the bill, but she plans to speak to lawmakers again this winter since the bill’s sponsor, Sioux Falls Democratic Rep. Erin Healy, plans to introduce it during the 2025 session if she is reelected.
South Dakota was one of 23 states where the legislation was introduced this year. Twenty-six states have passed such a law.
Similar national measures are pending in Congress that would affect federally managed insurers.
The goal of all the bills is to make supplemental screenings as accessible and affordable as mammograms, which are required by the Affordable Care Act to be covered by insurers without cost sharing for women 40 and older.
High deductibles and copays can discourage patients from receiving breast cancer screenings and lead to worse breast cancer outcomes, according to a 2023 research article published in the journal Radiology.
Cardwell worked at a cancer treatment center after she went into remission, and she saw women who postponed follow-up testing because it was too expensive, she said.
In addition to high-risk patients, about half of women who are 40 or older have dense breasts, according to the Centers for Disease Control and Prevention. Women with dense breasts have a higher chance of getting breast cancer, and because it’s hard to tell the difference between a tumor and dense breast tissue on a mammogram, a small tumor may be missed or a doctor might recommend a more intensive test such as an ultrasound or MRI.
“The key is early detection reduces costs of treatment, and it increases survivability,” Cardwell said. “It just makes sense in my mind, as a cancer survivor, that providing that second line of screening will save money in the long run.”
In 2020, 80.5% of South Dakota women between 50 and 74 years old had a mammogram within the last two years, which is slightly higher than the national rate of 78.3%. The percentage of Native American women reporting being up to date on their mammogram screening was 56.3%, according to the state Department of Health.
While there are programs to assist uninsured and underserved women, including in South Dakota, proponents like Cardwell say the programs only reach a fraction of eligible women.
Why last year’s bill in South Dakota didn’t pass
There was over an hour of testimony and discussion about South Dakota’s anti-cost-sharing bill during the last legislative session’s committee hearing.
Lobbyists representing insurers spoke in opposition, saying the bill could lead to higher premiums. Wellmark Blue Cross Blue Shield told South Dakota Searchlight in a written statement that the insurance company “opposes health insurance coverage mandates” in the Legislature.
“Each added benefit can increase premiums for our members, potentially making it harder for individuals and families to afford the essential care they need,” Wellmark Blue Cross Blue Shield said. “Our large network of providers allows us to improve access to care and, by working together, we strive to be transparent about costs, ensuring our members are informed and supported in their health care decisions.”
Blake Severyn, a lobbyist representing the Independent Insurance Agents of South Dakota, spoke against the bill last legislative session and plans to do so again if it returns.
“We sympathize with those affected by breast cancer, obviously, and this is one of those topics where it’s difficult to separate the sentimental aspect from the conversation,” Severyn told Searchlight. “Each mandate they consider could raise premiums for everyone statewide and we’re trying to avoid that. We’re trying to keep premiums down for everybody.”
Why is this coming back again?
Sometimes the Legislature needs to “protect the public and protect women,” Sioux Falls Democratic Rep. Erin Healy told South Dakota Searchlight. As more women require supplemental annual screenings, “it just makes sense” to cover it as preventative.
“This is a really expensive screening and women can’t afford it. Even with insurance it can be expensive,” Healy said. “If we know that this is going to prevent serious cancer, or if we know that it’s going to help women get the treatment they need sooner, I think it makes sense to intervene.”
The bill is a priority for the South Dakota Advocacy Network for Women, a coalition advocating for women’s policy issues. Melissa McCauley is the lobbyist for the organization.
“I think it’s important to realize other states have realized this impacts women’s health and are saving women’s lives,” McCauley said.
Healy’s mother died of breast cancer when the lawmaker was 19 years old. It’s something Healy has had to carry with her as she’s started a family with her husband. The 37-year-old will require preventative screening starting next year, based on her family history.
Her insurance will cover at least a portion of her screenings, and she expects she’ll be able to cover the rest of the cost.
“My wish is that everyone, regardless of what kind of insurance they have, have the same opportunities people like me have been given,” Healy said.
Healy was hesitant to bring the bill back to Pierre if she’s reelected to the House of Representatives, until the Women’s Advocacy Network prioritized it.
“If it’s not the same bill, let’s work on a better version so we can have better discussions,” Healy said.
Cardwell plans to support the revived bill and continue speaking against barriers to screening and treatment for all cancers.
Cancer took a lot from her, she said, but it gave her things, too: empathy, patience, and most of all, perseverance.
Editor’s note: This article was updated to correct the spelling of Doris Cardwell’s name.