Kidney patients given new hope

Beatrice Harris has felt the relief of getting off a waiting list nearly 95,000 names long. And the heartbreak of being added again. After receiving a kidney from her daughter, an infection caused her to lose the organ. She’s back on a kidney transplant waiting list and dialysis until she finds another match. Demand for kidney donations continues to far outpace supply. And the cost of care for patients with chronic kidney diseases drains $114 billion from Medicare every year. A July 10 executive order by President Donald Trump is aiming to revamp the system by increasing education and prevention, encouraging home dialysis and boosting the number of transplantable kidneys. “I think it’s wonderful,” Harris said. “Nobody has given kidney information that big of a push.”

Approximately 15% of American adults have chronic kidney disease, though most don’t realize it as patients in the early stages have few signs or symptoms.

More than 100,000 Americans begin dialysis to treat end-stage renal disease, the most advanced stage of chronic kidney disease, annually.

The ultimate goals laid out by the Department of Health and Human Services are to have 80% of new kidney failure patients either receiving dialysis at home or receiving a transplant by 2025; and to reduce the number of Americans with end-stage renal disease by 25% and double the number of kidneys available for transplant by 2030.

“It’s something that we’ve been working toward, and it’s definitely long overdue,” said Tonya Saffer, vice president for health policy at the National Kidney Foundation, a nonprofit advocacy group. “We’re very excited.”

A Move To Home Treatment

The vast majority of American patients receive dialysis in a clinic.

Twenty-eight percent of patients at Fresenius Kidney Care in Lady Lake currently get dialysis at home.

The current Medicare payment system encourages in-center dialysis, the Centers for Medicare & Medicaid Services stated.

As directed by Trump’s order, CMS released a proposed required payment model and four optional payment models with the goal of encouraging the education of beneficiaries about treatment options, including home dialysis.

Under the proposed required model, CMS would make upward or downward payment adjustments based on home dialysis and transplant rates at participating facilities.

Fresenius supports the administration’s bid for home care, said Matthew Zito, Fresenius Kidney Care director of operations, home therapies North Florida Region.

“Studies over the last five years have demonstrated dialysis patients who treat at home have higher quality of life,” he said.

Zito said it would like to see referral patterns for its nephrology partners drop from 85% of patients referred to a center for their first treatment to 50% by the end of 2022.

Kidneys work 24-7 to filter blood, removing wastes and excess fluids explained Dr. Kenneth Andreoni, surgical director of kidney transplant at University of Florida Health.

Patients who get dialysis in center usually do so for 12 hours per week.

“They’re trying to do in 12 hours what our kidneys do in 168 hours,” Andreoni said. “Trying to concentrate that ability to remove all of the toxins in our blood is a bit more stressful on someone’s body.”

With home dialysis, patients may be treated more frequently and for longer periods, including while they sleep.

Zito said patients and their care partners receive training from a nurse, including extensive information on how to avoid infection. Patients typically can start treatments alone by Day 6.

Though Zito said he believes a shift to mass home dialysis is overdue, he’s not sure it would have been possible sooner.

“Five years ago we didn’t have enough equipment, enough dialysis machines small enough to fit in the home,” he said. “Technology did not allow for non-nurses or non-physicians to quickly grasp the urgency of the material that’s being taught. Now we’ve got it down to almost a science.”

Harris has tried both dialysis options.

She did home dialysis for six months before receiving a kidney from her daughter in 2013.

But last year, she caught an infection. To properly treat it, Harris had to stop taking the medication keeping her body from rejecting the foreign organ.

She lost the kidney. Harris started dialysis again in December, this time in a center.

Since receiving her transplant, Harris’ husband had a leg amputated so she doesn’t think he’d be able to help her carry heavy boxes of equipment.

Harris has noticed a dramatic change in how she feels. Treatments now leave her exhausted, unlike when she had home dialysis.

More Kidneys For Transplant

In addition to restarting dialysis, Harris is back on a kidney transplant waiting list.

Harris recently moved to Pennsylvania to be near the hospital where she’s listed.

Increasing the pool of transplantable kidneys is another element of the administration’s efforts.

One initiative Saffer applauded is increasing incentives for living donors by allowing reimbursement for lost wages and child or elder care.

Living donors now may only be compensated for travel and sustenance. 

“We don’t want to see any living donor experience hardships because they stepped forward to give a kidney,” Saffer said.

Another target is improving use of available organs.

Viable kidneys still are being discarded, transplant experts say.

Organs from deceased donors are rated based on how long they are expected to function after transplant.

Many transplant programs turn down kidneys that are considered to have a higher risk of failure because donors are older or less healthy, for fear that they will be penalized if the transplants are unsuccessful.

Patients should at least have the option to turn down a potential kidney rather than programs rejecting them outright, Saffer said.

“Even if a kidney may be less than perfect, it still can provide a higher quality of life than dialysis and there’s probably a patient that’s willing to accept that kidney if they were asked,” she said.

Harris said she had a willing living donor — considered the best type of donor — who was rejected because the hospital’s program had a cutoff age of 70. Her donor was 71.

Harris praised the attention chronic kidney disease is now getting at a federal level, though she’s not confident she’ll find another kidney. 

“Everyone I know is praying for me that I get another donor and yet I know it would be a miracle,” she said.

Senior writer Ciara Varone can be reached at 352-753-1119, ext. 5395, or ciara.varone@thevillagesmedia.com.