Sunday, August 12, 2018

Company Sued for PKD Discrimination, Dementia Danger from Dialysis, PKD Research, Walk for PKD, Increasing Available Organs for Transplant

Living with PKD

From Ken-Ton Bee, Western New York

EEOC sues Lornamead for firing worker with kidney condition


The U.S. Equal Employment Opportunity Commission has charged Remedy Intelligent Staffing, a California based staffing firm, and Lornamead Inc., a manufacturer headquartered in New York City, with violating federal law after the companies allegedly refused to provide reasonable accommodation to a long-term temporary employee when his kidney condition worsened, terminating his employment instead.

According to a lawsuit the EEOC filed in U.S. District Court last week, David Gaiser II was hired by Remedy and assigned to work as a general laborer at Lornamead’s facility in Tonawanda in June 2013.

During his employment, Gaiser was diagnosed with autosomal dominant polycystic kidney disease, a chronic condition characterized by the growth of multiple cysts in the kidneys.

In June 2016, he was assigned to run a machine that required continual bending and twisting, which aggravated his kidney condition and caused him severe pain, the lawsuit said. When Gaiser asked for a chair to minimize his bending and twisting, Lornamead refused to provide one, according to the suit.

Gaiser says in the suit that he then provided Remedy with a note from his doctor, explaining that repeated bending and twisting could exacerbate his kidney condition, and recommending he refrain from extreme bending, twisting or lifting. He also suggested several accommodations that could enable him to perform his duties.

According to the lawsuit, Lornamead instead directed Remedy to end Gaiser’s three-year assignment at Lornamead, and Remedy failed to place Gaiser at another job.

According to the EEOC, the alleged conduct violates the Americans with Disabilities Act. The suit seeks back pay, compensatory damages and punitive damages for Gaiser, as well as injunctive relief designed to prevent future discrimination.



Kidney Research

From Channel 4, Local CBS Affiliate, Denver, CO

Experimental Drug Keeps Father Of Two From Needing Kidney Transplant

A father of two from Louisville is living with a rare, genetic disease. Alport Syndrome causes damage to the kidneys and can lead to kidney failure. There is no cure, but Scott Hinerfeld’s kidney function has actually improved.

Hinerfeld is participating in a clinical trial of an experimental drug that is showing great promise. It has made the 42 year old feel normal again.

Hinerfeld is an avid cyclist, climber and snowboarder, but two years ago he was struggling.

“My level of fitness was declining,’ he told CBS4 Health Specialist Kathy Walsh. “I started waking up feeling sick.”

Hinerfeld had Alport Syndrome, a rare, genetic disease that causes progressiveloss of kidney function. For Hinerfeld’s brother, Matt, it led to a kidney transplant. It seemed Hinerfeld would eventually need the same.

“It became pretty evident that my kidney function was declining,” Hinerfeld said.

But he was directed to nephrologist Dr. Geoffrey Block at Colorado Kidney Care in Denver. Block, Director of Research, was leading a clinical trial of an experimental drug.

“We’re studying a medicine called bardoxolone methyl. It’s made by a company called Reata,” explained Block.

Hinerfeld was the first person with Alport Syndrome to try bardoxolone. Block said, after 12 weeks, Hinerfeld’s kidney function stopped declining and actually improved.

“I kind of have chills right now talking about it,” said Hinerfeld.

“We’ve never studied anything like this that makes kidneys better,” said Block.

“I don’t often say this, but I feel blessed,” said Hinerfeld.

Hinerfeld has now been taking the drug for 18 months. He says he feels normal again. He’s happy to continue taking a pill a day for as long as necessary. He hopes bardoxolone buys him time until researchers find a cure.

Block calls the drug remarkable and not just for Alport Syndrome. He said it’s also being studied to treat polycystic kidney disease and both Type 1 and Type 2 diabetes and researchers are seeing success.




Kidney Transplant

From National Geographic, BY JULIE APPLEBY, KAISER HEALTH NEWS

New Medications May Increase Available Organs for Transplant


Until recently, organs from donors who died of drug overdoses were often discarded due to concerns about hepatitis C.


AFTER HER KIDNEYS failed from the same illness that took the lives of her mother and brother, Anne Rupp went on dialysis in May 2016, spending three hours a day, three times a week undergoing the blood-cleaning procedure. She hated it.

Rupp, who had polycystic kidney disease, joined more than 95,000 other Americans on kidney transplant lists. She knew the wait could stretch out for years.

But an experimental—and controversial—source of donated organs provided a far quicker resolution: Expensive medicines to treat hepatitis C have made it possible to use organs donated by victims of opioid overdoses who were infected with the once-deadly virus.

Six months after agreeing to be in a study in which patients in need of a kidney transplant would accept infected donor organs, Rupp got a 7:30 a.m. call at her home in York, Pennsylvania. “We have a kidney for you!”

The number of people donating organs after dying from drug overdoses has risen more than 200 percent since 2012, data from the United Network for Organ Sharing (UNOS) show—more than 13 percent of donors overall. About 30 percent of the 1,382 overdose-death donors in 2017, however, tested positive for hepatitis C.

In the past, organs exposed to hep C were typically discarded or given only to patients who already had the illness. Using them in patients who don’t have the virus could shorten the transplant wait time for hundreds of patients each year.

“This is super exciting because five years ago 100 percent of [the donated] hep C hearts were being buried and now some are being used,” said Peter Reese, an associate professor of medicine at University of Pennsylvania. “The world has changed.”

But patients who receive such organs would almost certainly need simultaneous treatment with drugs to treat hepatitis C, generally a six- to 12-week course of drugs that costs tens of thousands of dollars. And it’s unknown whether long-term use of the drugs is safe and effective in this population.

“‘We haven’t done this before,’” Rupp, 76, remembers her doctor at Johns Hopkins Hospital in Baltimore, Maryland, telling her when he offered her the option. But, he explained, the new antiviral medications nearly always cure hepatitis C.

While some hep C patients have no symptoms, over time, the untreated virus can cause chronic liver disease and lead to liver failure.

The Hopkins study—and several others nationally—are opening up new medical possibilities, while exposing patients to potential costs.

Since the procedure is considered experimental, many health plans don’t have a specific coverage policy on the expensive antiviral drugs that go hand in hand with it.

Insurers that responded to questions for this story generally said they take each request on a case-by-case basis, and cover the drugs if they deem them medically necessary.

Researchers and ethics experts say coverage must be clarified before the new procedure becomes more widely available.

“How can you intentionally infect someone if not 100 percent sure their third-party payer will pay for [treatment]?” said Christine Durand, an assistant professor of medicine at Johns Hopkins University School of Medicine.

At Hopkins, patients start the antiviral drugs just before being wheeled into the operating room. Other programs wait until the patient tests positive for hepatitis C, usually in the first few days after a transplant. Generally, when part of a study, the drugs are paid for by the manufacturer or the institutions conducting the research.

When the drugs first hit the market at the end of 2013, a course of treatment cost $100,000. As more antivirals have become available, prices have fallen and coverage limits have eased for people with chronic hepatitis C. The average net price for a round of hep C antiviral therapy is now $25,167, according to SSR Health, part of SSR LLC, a boutique investment research firm.

Outside of those trials, transplant surgeons say they’ve sought—and often obtained—insurance coverage for the drugs. Durand said the move is cost-effective, because the drugs cost less than ongoing dialysis for kidney failure or mechanical heart assist devices.

Researchers are split on whether there’s enough evidence to take the procedure out of the realm of scientific study.

“It isn’t the standard of care today, but it’s going in that direction,” said Durand.

But others advise caution until long-term results can be seen.

While the first 20 patients at Hopkins and Penn who received kidneys in a published study were all cured of hep C, “if we had 100 patients, or 200, then we would get a better sense as to whether the cure rate is 100 percent,” said Penn’s Reese.

The heart transplant program at Vanderbilt University Medical Center in Nashville has transplanted 42 non-infected patients with hearts exposed to hep C, and continues to follow them. Ashish Shah, the program’s director, noted that some people with untreated or long-term hepatitis C have a higher incidence of coronary artery disease.

“We’ll have to watch that,” he said, but noted that many patients with severe heart failure would otherwise die waiting for a transplant.

“It’s reasonable to think that risks [of accepting an organ from a hepatitis-infected donor] are far lower,” he said.

Jay Fuentes, a 45-year-old registered nurse in Quakertown, Pennsylvania, agreed to participate in the study at Penn in hopes of getting a transplant more quickly after his kidneys failed in 2017.

“It seemed like a no-brainer to me,” said Fuentes. “If I was in the first group where it had never been tried before, I might have hesitated.”

He tested positive for hepatitis C shortly after the surgery and took the antiviral drugs for 90 days. He said he no longer tests positive and has gotten back into performing in local theater with his children.

“I have a whole new lease on life,” said Fuentes.




Kidney Dialysis

From HealthLine

Kidney Dialysis Can Raise Risk of Dementia in Older Adults

Researchers say low blood pressure may be one reason people on kidney dialysis treatment have a higher risk of developing dementia.

Dialysis is a life-saving treatment that turns potentially fatal kidney diseases into manageable illnesses.

But new research finds that dialysis may also increase the risk of dementia.

According to the National Kidney Foundation, more than a half-million Americans rely on kidney dialysis to survive.

However, a new study published today in the Clinical Journal of the American Society of Nephrology (CJASN) finds that this treatment may also increase the risk of dementia and Alzheimer’s disease in older adults, particularly women and minorities.

Mara McAdams DeMarco, PhD, lead study author and an assistant professor in the Bloomberg School of Public Health at Johns Hopkins University in Maryland, told Healthline, “What we do know is that there is a greater burden of diagnosed dementia among older adults initiating dialysis than we would expect among community-dwelling older adults of the same age.”

What the study revealed

Researchers studied more than 350,000 Medicare patients on dialysis treatment, aged 66 and older, from 2001 to 2013.

About 47 percent of study participants were female and 20 percent were African-American.

Researchers say they found that the lifetime risk of being diagnosed with dementia after beginning dialysis was 19 percent for end-stage kidney disease (ESKD) patients aged 66 to 70. It rose to 28 percent for those between 76 and 80 years of age.

“This study was done because we have a long-standing interest in geriatric nephrology,” said DeMarco.

She added the goal was to better understand the incidence, risk factors, and consequences of a dementia diagnosis in older patients on dialysis.

Dr. Harold Szerlip, division director of nephrology at Baylor University Medical Center in Texas, agrees.

“While the reasons are unclear, there is considerable evidence that cognitive decline, especially loss of executive function, begins at early stages of [chronic kidney disease] and progresses more rapidly with initiation of dialysis,” Szerlip told Healthline.

Women affected more than men

According to the findings, the 10-year risk of developing dementia after beginning dialysis was 21 percent in men versus 25 percent in women.

The risk of being diagnosed specifically with Alzheimer’s disease was also higher in women.


However, Szerlip emphasized that “While there is a slight increase in CKD in women, end-stage kidney disease still tends to be more frequent in men, although we really don’t know why.”

The study authors report that a diagnosis of dementia doubled the mortality rate of dialysis patients.

“Regardless of age, sex, race, and other disease conditions, a diagnosis of dementia was associated with a two-fold risk of mortality among older adults initiating hemodialysis,” the authors wrote.

“But our findings don’t indicate that dialysis treatment itself is what’s increasing the risk of dementia and Alzheimer’s disease,” cautioned DeMarco.

Minorities have a higher risk

Hispanic and African-American dialysis patients were found to have about twice the risk of being diagnosed with dementia and Alzheimer’s disease compared to whites.

According to Szerlip, “Blacks and Hispanics also develop CKD at a higher rate than whites, possibly because they experience more obesity, more diabetes, and less access to healthcare.”

“Our study was not able to tease apart why blacks, Hispanics, or women on dialysis were more likely to be diagnosed with dementia,” added DeMarco.

Dialysis causes low blood pressure

Low blood pressure may be one reason why kidney dialysis patients experience a greater risk of dementia and Alzheimer’s disease.

Dialysis can cause low blood pressure. A 2016 study in PLOS Medicine found this significantly increases the risk of vascular dementia, which is caused by impaired blood supply to the brain.

This was the most common type of dementia that was diagnosed in the study participants.


Szerlip said, “The more rapid cognitive decline after starting dialysis could be related to episodes of low blood pressure caused by dialysis. This makes the fact that vascular dementia is more common in CKD more understandable.”

But he’s not as sure about the increased incidence of Alzheimer’s disease.

“Whether there is actually more Alzheimer’s is unclear,” Szerlip said. “This study used Medicare data, which may be inaccurate as far as a diagnosis of Alzheimer’s.”

He said this is because many Medicare doctors will list any dementia as Alzheimer’s without proving that there are actual symptoms of the disease, such as protein plaques in the brain.




Walk for PKD

From Shepard Express

Milwaukee Walk for PKD


SEP. 09, 2018 11:30 A.M. TO 2:00 P.M.

Bayshore Town Center 5800 N. Bayshore Drive, Glendale, Milwaukee, Wisconsin 53217


The Walk for PKD is your chance to make a difference in the lives of hundreds of thousands in America and millions worldwide who have polycystic kidney disease (PKD).

100% of each donation funds life-saving research. Walk with us so we can bring treatments to patients faster.

Registration is free!

Check-in/Onsite Registration: 8:30 a.m.

Penny Kids Dash: 10 a.m.

Walk Begins: 11:30 a.m.

Walk Distance: 1 mile

Volunteer Walk Coordinator: Jacque English

milwaukeewalk@pkdcure.org

PHONE2622274567




Northern Indiana Walk for PKD – 2-Mile Walk

Sept. 8

Check in 10 a.m. Walk 11:10 a.m.

Creek Ridge County Park, Michigan City, Indiana

For more information, contact northernindianawalk@pkdcure.org

Polycystic Kidney Disease (PKD) affects thousands of Americans and 12.5 million children and adults, worldwide.

Register online and take advantage of a host of effective and Free online team features like emailing members, tracking team progress and fundraising tools. Contact the PKD Foundation for more information on how you can help.www.pkdcure.org. www.walkforpkd.org/northernindiana

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