A year after receiving a kidney transplant, Laurie Church’s body is rejecting her new organ. Various steroid treatments and anti-rejection drugs are keeping her kidney functioning for now, but there is still a chance it could fail, forcing her to be tied to a machine three days a week for hours at a time once again.
Church, 51, of St. Paul, is one of an estimated 730,000 Minnesotans living with kidney disease. About 2,200 are currently on the transplant list, waiting for a new kidney. The numbers are quickly growing as the disease’s two main causes — hypertension and diabetes — steadily rise. Two years ago, 30 million people in the U.S. had it. Today, it’s about 37 million. More people live with kidney disease than with cancer.
There is no cure. Dialysis only delays death once kidneys fail. Many experts don’t even consider transplants a cure because people’s bodies can reject new kidneys, and they come with significant complications and limitations.
The costs are growing, too. People with the disease make up 1 percent of Medicare patients, but account for 7 percent of the Medicare budget. Medicare spending on the disease exceeded $84 billion in 2017, a 6.3 percent increase over the previous year.
“I believe it is one of the biggest under-recognized public health crises,” said Mallory Olson, the executive director of the National Kidney Foundation’s Minnesota chapter.
Lack of awareness
Part of that has to do with little funding and little awareness about the disease, said Teresa Ambroz, manager of the Diabetes and Health Behavior Unit at the Minnesota Department of Health. Much of the focus has been on cardiovascular disease and diabetes, but not on kidney disease itself.
Federal grants flowing to DOH usually target other diseases. Many also think, incorrectly, that dialysis is a cure. But about 20 percent of new dialysis patients die within a year of starting treatment, and 50 percent die within five years, said Mark Rosenberg, a University of Minnesota kidney specialist and president of the American Society of Nephrology.
Talking to state officials about efforts to better educate, screen or treat the disease brings muted responses. The Minnesota Department of Health has outdated data on the prevalence of the disease in the state. While it has dedicated pages on its website to countless, less-prevalent diseases, it has none on kidney disease.
University of Minnesota kidney experts have reached out to Gov. Tim Walz’s office offering to partner on an awareness campaign, but the office so far is “not considering” any kidney disease education or awareness projects, said Aara Johnson, a Walz policy adviser.
The state’s Department of Human Services also has no program to educate about the disease. But DHS is learning how much need exists. Its senior helpline dedicated to assisting elderly Minnesotans with their health care needs has seen such a rise in questions about kidney disease, specifically, that it has had to add training on the topic, said Kelli Jo Greiner, the Medicare project manager with the Minnesota Board on Aging, which is run by DHS staff.
“We should be doing more,” Ambroz said. “I think it’s an important issue, so we would love to see more momentum in this area.”
Most people don’t know their kidneys are failing until they end up in the emergency room with severe pain or symptoms. Often, they have to go on dialysis immediately, Rosenberg said.
Church said she had no idea her kidneys were failing until it was discovered in a blood test during a routine exam in 2008. Her doctors were able to get her kidneys functioning for a few years, but when her kidney disease progressed her doctors told her that she needed dialysis or she’d die. She later found out her years of taking over-the-counter pain medication for her severe migraines damaged her kidneys.
Dialysis, a treatment that an estimated 5,000 Minnesotans receive, is a tiring, time-consuming process that taxes not only patients, but their families and caregivers who often have to drive them to treatment centers for hours of dialysis several times a week. The first 90 days of dialysis are covered by the state’s Medicaid program, which cost the state just under $5 million in 2017. The bigger, $80 billion-plus bill covered by the federal government comes after those three months, when it’s fully covered under Medicare for almost every American, even for those under 65. Rosenberg said the majority of dialysis patients receive their treatment in centers, which have been steadily increasing in numbers as more people require the life-saving treatment.
Minnesota has 121 treatment centers registered with Medicare, which is about 30 more centers than it had in 2015. There are dialysis centers in almost every neighborhood these days, Rosenberg said.
With six years of dialysis under her belt, Church said it’s an awful process, exhausting physically and mentally, and requiring a strict diet and other inconveniences. It’s common for patients to feel ill and ask to shorten a session. But workers at her center told her that shortening treatment time by 15 minutes can take years off a patient’s life, and doing it too often can get one removed from the transplant list.
“The longer you are on it, the closer you are to death,” she added. “Once you start it, you aren’t going to get off of it unless you get a transplant or pass away.”
Church received her kidney last year from a donor who she doesn’t know, but has had complications. Her body has rejected her new organ twice, and she is currently receiving treatment to get it back to full function.
National efforts underway
In July, President Donald Trump signed an executive order that highlighted goals and improvements for the industry. The order calls for a national awareness campaign to encourage more research and regular screenings, among other efforts. The order sets goals of reducing kidney disease by 25 percent in the next decade, increase at-home dialysis, double the number of kidneys available for transplants and encourage development of an artificial kidney.
The order was a rare instance of attention to a problem that has received too little of it, said Zach Kribs, government affairs specialist for the American Society of Nephrology.
“Our kidney health care system has been built around dialysis and because we have transplantation … the public, they looked at our space and said, ‘Hey, look, you have dialysis, you have transplantation, you’re covered,’” Kribs said. Just as cancer started receiving more attention and funding in the ’90s, he hopes the time for kidney disease is now. Or close.
But hope is elusive for many in treatment, and Church sees it in the support group she leads in a room of St. Paul’s Vision Loss Resources center. Many in her group are depressed and ready to give up. She tries to provide them a community to help cope and become optimistic about their dialysis treatment. Still, many of her friends from her dialysis center have died.
“It’s really good people,” Church said, “in a crappy situation.”
Michelle Griffith is a student at the University of Minnesota Hubbard School of Journalism and Mass Communication.