PKD Symptoms, PKD Foundation: From Care to Cure, ADPKD Lower Death Risk on Dialysis, Medicare Cuts to Affect Dialysis Access

PKD

From My Southern Health, by Linda Zettler
Symptoms of polycystic kidney disease

These are the warning signs for an inherited condition that can lead to kidney failure.

A sharp spike in blood pressure was James George’s first symptom before a diagnosis of polycystic kidney disease, but it wasn’t his first warning.

“My mom had discussed it with us and explained the disease,” said the now 67-year-old father and grandfather. His mother had the disease and so did her sister. All four of James’ siblings have been diagnosed.

What is polycystic kidney disease?

Polycystic kidney disease is an inherited disorder in which cysts – clusters of fluid-filled sacs – form in the kidneys, interfering with kidney function and sometimes causing issues for other organs, including the liver.

A somewhat common genetic disorder, polycystic kidney disease affects about 500,000 people in the United States. Children whose parents who have the disease have a 50 percent chance of developing it.

The cysts caused by polycystic kidney disease are non-cancerous but can grow very large and hamper the kidneys’ natural ability to filter waste from the blood. About half of polycystic kidney disease patients experience kidney failure by the time they turn 60, leading to dialysis treatments, in which the blood is filtered, and kidney transplants.

In James’ case, he needed a liver transplant first because of the damage the disease did to his liver. As his kidney function decreased, he began taking dialysis, often going with this mother, then had a kidney transplant about 10 years after the first surgery.

“People who need kidney transplants have some form of disease that causes kidney failure,” said Rachel Forbes, M.D., James’ Vanderbilt kidney transplant surgeon. “James’ was polycystic kidney disease. It’s usually inherited in families, and causes cysts in the kidneys and liver. The cysts basically take over the normal function and the kidneys are unable to perform as they usually would. These cysts often get very large, sometimes thirty pounds, because it is filled with so many fluid cysts.”

Signs of polycystic kidney disease

Knowing you family history and discussing it with your healthcare provider are both important for detection of polycystic kidney disease.

Symptoms appear differently in patients, but the most common symptom is high blood pressure. 

Other symptoms include:
Pain in the back and side
Blood in the urine
Frequent kidney infections

A polycystic kidney disease diagnosis may require patients to change the way they eat to control blood pressure. According to the National Institute of Diabetes and Digestive and Kidney Diseases, following a healthy eating plan can help. Healthcare providers often recommend a diet for people with polycystic kidney disease called the DASH diet, which focuses on fruits, vegetables, whole grains and foods lower in sodium.

Kidney Dialysis

From Renal and Urology News

ADPKD Linked to Lower Mortality in Peritoneal Dialysis Patients

Patients with autosomal dominant polycystic kidney disease (ADPKD) who are on peritoneal dialysis (PD) have a lower death risk than non-ADPKD patients on PD, findings from a new meta-analysis presented at the National Kidney Foundation's 2018 Spring Clinical Meetings suggest.

The meta-analysis, which was presented by first author Boonphiphop Boonpheng, MD, of East Tennessee University in Johnson City, included 12 observational studies with a total of 14,673 patients on PD (931 with and 13,742 without ADPKD). Compared with the non-ADPKD group, the patients with ADPKD had a significant 32% decreased odds in a pooled analysis. The investigators found no significant associations between ADPKD status and the risks of technique failure or peritonitis.

Separately, in a 12-year study presented at the 2018 Annual Dialysis Conference in Orlando, Florida, researchers found lower mortality rates among patients with vs without ADPKD regardless of whether their initial ESRD treatment modality was PD (17.4% vs 24.7%) or intermittent hemodialysis (26.8% vs 39%).

In patients with ADPKD-associated ESRD, enlarged polycystic kidneys within the peritoneal cavity raise concerns about increased risks of abdominal hernia and dialysate leak related to increased abdominal pressure, senior author Wisit Cheungpasitporn, MD, of the University of Mississippi Medical Center in Jackson, explained. “However, in our meta-analysis, we demonstrated that the risk of technique failure was not significantly different between ADPKD patients and non-ADPKD patients on PD,” he told Renal & Urology News. “Thus, notably, the concerns about increased risks of abdominal hernia and dialysate leak did not translate to higher technique failure of PD requiring the need to transfer to hemodialysis.”

Dr Cheungpasitporn noted that the follow-up time for all studies included in this meta-analysis was less than 5 years, which is relatively short. Consequently, future studies are required if survival benefits of PD over hemodialysis among ESRD patients with ADPKD may decrease over time.

From PKD Foundation

Video: From Care to Cure

From Modern Healthcare, By Virgil Dickson

Medicare cut to ambulance pay threatens dialysis patients' access

Patient transportation providers are worried that a looming cut to ambulance reimbursement could cause some dialysis patients to lose access to care, as the new rate reimburses companies below their cost to provide rides.

The CMS has started sending notices to Medicare administrative contractors telling them to reduce reimbursement for regular, non-emergency ambulance transportation for dialysis appointments by 13% starting Oct. 1. Congress called for the cut in its February continuing resolution, known as the Bipartisan Budget Act of 2018.

The agency notes that this cut will be on top of a 10% reduction that took place in 2013, so reimbursement for such rides will be 23% less than they were five years ago.

Joyce Noles, who runs emergency medical services for the West Tennessee Healthcare system based in Jacksonville, said she expects the base reimbursement rate for such services to fall to $165 per transport compared to the $264 it was receiving on average before the 23% cut.

"This is going to be a large impact on many services and the cost will have to be passed on somehow," Noles said.

Once the cut kicks in, she expects to lose money for dialysis rides under the new reimbursement plan. On average, West Tennessee Healthcare's emergency transportation services unit will lose at least $65 per ride, Noles said.

West Tennessee Healthcare may switch to using stretcher vans for rides due to the reimbursement cut, which would mean that only non-medical personnel would be in the vehicle, leaving patients without immediate help if they experience a medical episode in transit.

Josh Watts, CEO of MedTrust, an ambulance provider in South Carolina, said his company has all but stopped taking on dialysis patients over the last year as revenue dropped for such rides.

While patients in his territory had other transport options, he expects healthcare access will suffer in rural areas. If ambulance providers in those regions also stop taking on dialysis patients due to the cut, there aren't other options for those patients, he said.

"In these areas, this will absolutely devastate the access to care transportation for at-risk patients," Watts said.

Transportation for dialysis patients can mean the difference between life and death for some, as many aren't able to drive or don't own cars, according to Alice Andors, a spokeswoman for the American Kidney Fund, a charity dedicated to helping kidney patients pay their insurance costs.

"Having a good transportation system is vital for dialysis patients, whose lives depend on getting to treatment three times a week," Andors said.

Ambulance providers across Southern and Mid-Atlantic states are especially furious about the cut, as they are now operating under a demonstration that requires Medicare beneficiaries to obtain prior authorization for regular, non-emergency transportation in order for the rides to be covered. The experiment spans eight states and the District of Columbia.

"It's a double hit if you're in" one of these states, said Dean Bollendorf, vice president of Healthfleet Ambulance, based in Fort Washington, Pa. "We're being treated differently from other providers in different states as they are not subject to both the cut and prior authorization."

Prior to implementing the model, spending on repetitive, scheduled non-emergent ambulance transports in the three initial states averaged $18.9 million per month, according to a CMS spokesman. By the start of 2017, spending decreased to an average of $6 million per month.

While ambulance providers supported the prior authorization demonstration because they believed it would weed out bad actors, they say they feel punished by the latest reimbursement cut.

"We've already paid our dues," Bollendorf said. "We've worked with the government to address the fraud problem."

Fraud experts agree that incidents of ambulance companies' improperly billing Medicare have dropped in recent years, but problems persist. Notable cases of improper billing for dialysis rides have been the subject of legal action in California, Ohio and Georgia over the last two years.

"There are bad players in the market who are in the business acting only with criminal intent," said Anthony Minge, a partner with Fitch & Associates who specializes in medical billing. "In my opinion, the government should shift more of the focus to rooting out these elements."

Nearly all Medicare fraud cases, including those committed by ambulance providers, are filed under seal under the False Claims Act and take years to investigate and prosecute. During that period, no one but the investigating authorities and the judge who has the case are aware of the fraud, according to Jim Barger, an attorney with the law firm Frohsin & Barger who specializes in False Claims Act lawsuits.

"Accordingly, there is no way to access the number of frauds that are currently under investigation. Our office, for one, has continued to receive reports of Medicare ambulance fraud related to non-emergent dialysis transport," Barger said.

Both the prior authorization demonstration and the cuts to reimbursement are the result of historical abuse by some ambulance providers of the non-emergency benefit.

A 2010 report from HHS' Office of Inspector General indicated that 20% of the agency's spending on non-emergency ambulance trips were improper because ambulance companies overbilled Medicare or transported people who didn't need or qualify for the service.

In 2012, Medicare Part B paid $5.8 billion for ambulance transports, almost double the amount it paid in 2003, according to the OIG.