Editor’s note: Congress is considering repeal of the Affordable Care Act, and is debating major structural changes, and perhaps significant cuts, to Medicaid, which serves 74 million Americans. Voices for Human Needs is reaching out and telling the stories of those who could be harmed if the ACA is repealed without a suitable replacement or if Medicaid is significantly scaled back.
Susan T. Hessel is one of the estimated 20 million Americans who have health care coverage due to the Affordable Care Act (ACA). That is of utmost importance, because last fall Susan learned that breast cancer, dormant for seven years, had returned.

Sue, a former longtime newspaper reporter for Wisconsin’s La Crosse Tribune, did not have coverage under the ACA when she was diagnosed with stage 4 breast cancer last fall. Instead, she had an inferior, employer-based plan that turned out to cover very little. An early indication of just how inadequate the plan was came when Sue learned her “insurance” plan would pay nothing on a $37,000 radiation treatment. Or that it paid just $75 out of $8,000 worth of office visits and treatments. “In a single day of x-rays, I reached the maximum amount of coverage I could get in a year,” Sue says.

Some relief – not complete relief, but some – came on Jan. 1 of this year, when she gained coverage through the ACA. Her premium is just under $800 a month, and the ACA now provides 100 percent of coverage – after she met her $7,100 deductible, which she reached in January.

One familiar aspect of Sue’s story: Her hometown of La Crosse sits on the Mississippi river. If she lived on the other side of that river, she’d be in Minnesota – and her premium would be lower, because Minnesota’s governor and state legislators agreed to the Medicaid expansion, while Wisconsin’s governor and state lawmakers did not.

“Our premiums are higher than Minnesota’s because Gov. Scott Walker did not take the Medicaid expansion,” Sue says. “Insurance companies had to have rates high enough to cover losses from those who might have been covered by the expansion. So we are paying more than we should. Don’t get me started on Scott Walker.”

Sue maintains her optimism, despite a rather unoptimistic prognosis – her cancer is now in her bones and lungs. And she personally is less threatened than many by the potential repeal of the ACA without a suitable replacement. That’s because she turns 65 on Oct. 11 – but becomes eligible on October 1 for Medicare – which she calls “Medicare day.” She then will be eligible for the program that covers 44 million seniors.

“I am worried about what will happen to Medicare and Social Security and resent the idea that they are ‘entitlements,’” she said. “We have been paying into them for our entire working lives. We counted on them. Giving us premium support is not enough when you consider how expensive health care is today. We are all one diagnosis away from financial and personal disaster.”

While she is in a difficult situation, still owing tens of thousands of dollars, she said, “This is about more than me. It’s about 20 million Americans who are at risk. Insurance companies are profiting off human misery. And it is wrong. The biggest problem is greed by the insurance companies and the willingness of Congress to enable their greed. Some things are more important than money.”

What would Sue like to tell members of Congress? “I am a person who has worked all my life and never expected to be in this situation. If you take away Obamacare, it puts lives at risk and under great distress. If you take away our insurance you should lose yours and go out on the open market….This issue is not just about me and my cancer. It is about your mother, your father, your sister, your children, your neighbor and even the guy down the street you don’t like all that much. It is about who we are as a nation and a people.”

Do you have a health care story you’d like to share with Voices for Human Needs? Do you know someone who depends on the ACA or Medicaid for health care coverage? We’d love to hear from you! You can share your story here.