Sunday, October 1, 2017

PKD: Whole Foods Sued for Discrimination; Gift of Life: Royal to Giant; Vouchers Save 25 Lives

Living with PKD

From JD Supra

Whole Foods Market Sued by EEOC for Disability Discrimination

Grocery Store Fired Employee for Missing Work Due to Kidney Impairment, Federal Agency Charges


RALEIGH, N.C. - "America's Healthiest Grocery Store," Whole Foods Market Group, Inc. dba Whole Foods Market, headquartered in Austin, Texas, denied a reasonable accommodation to a cashier with polycystic kidney disease and then fired her because of her disability, the U.S. Equal Employment Opportunity Commission (EEOC) charged in a lawsuit filed today.

According to the EEOC's suit, Whole Foods hired Diane Butler in 2005 as a cashier for a facility in Raleigh, N.C. Butler has polycystic kidney disease, a genetic disease causing uncontrolled growth of cysts in the kidney, eventually leading to kidney failure. In 2009, while working for Whole Foods, Butler had a kidney transplant. In December 2015, Butler missed work on two occasions because she had been hospitalized and needed to visit the doctor because of her kidney. Although Butler informed the company she needed time off due to her kidney impairment, Whole Foods terminated Butler because of her absences.

Such alleged conduct violates the Americans with Disabilities Act (ADA), which requires employers to offer reasonable accommodations to employees with disabilities. The EEOC filed suit in the U.S. District Court for the Eastern District of North Carolina, Western Division (Equal Employment Opportunity Commission v. Whole Foods Market Group, Inc. d/b/a Whole Foods Market; Civil Action No_5:17-cv-00494-FL) after first attempting to reach a pre-litigation settlement through its conciliation process. The agency seeks back pay for Butler along with compensatory damages, punitive damages, and injunctive relief.

"Employees with disabilities are entitled to reasonable accommodations, including modification of an employer's absenteeism policy, unless making the accommodation would be an undue hardship on the employer," said Lynette A. Barnes, regional attorney for EEOC's Charlotte District Office. "An employer who is on notice that an employee's absences are related to that employee's disability must comply with the ADA's mandate to reasonably accommodate workers with such needs."




Gift of Life

From Kansas City Star, BY LISA GUTIERREZ

Royals fan rises above the World Series thing to donate ‘Royal kidney’ to Giants fan

kelly dugout
San Francisco Giants fan Kelly van den Berghe will receive a kidney on Wednesday from her friend Josh Harrold, a Royals fan.
Kelly Castro Courtesy of Josh Harrold

He is a Royals fan, lifelong.
She roots for the San Francisco Giants, the team that crushed Kansas City’s soul when it won the 2014 World Series at Kauffman Stadium.

Turns out, they’re a good match.

And on Wednesday, Giants fan Kelly van den Berghe will become forever Royal when her friend, 38-year-old Hutchinson, Kan., native Josh Harrold, gives her one of his kidneys.

They both live in California, he in Orange County, she in Santa Cruz. The operation will take place at Stanford Hospital.

Because Josh is the kind of guy who believes in and earns a living making grand gestures, he worked with the Royals and Giants to create a moment his friend would not forget — the day he told her she was getting a “Royal kidney,” as he calls it.

It happened last November at AT&T Park in San Francisco.

It was epic: He got a Giants fan to wear a Royals jersey.

(Now she thinks she jinxed the Giants, currently last place in the NL West.)

Harrold and others close to van den Berghe have known she has PKD  —  polycystic kidney disease. The chronic, genetic disease causes cysts to grow uncontrollably in the kidneys, eventually leading to kidney failure, according to the PKD Foundation, based in Kansas City.

Van den Berghe’s grandmother, mother and brother had PKD. Transplants. Dialysis. Her family has been down this road before.

But her personal nightmare has been lack of appetite, painful leg cramps, mood swings, holding water in her belly, trouble sleeping, unquenchable thirst, panic, anxiety, lower back pain and unrelenting tiredness that banishes her to bed for 18 hours at a time.

“I knew this was going to happen someday,” van den Berghe said. “I just enjoyed all the things I could do now that I knew I wasn’t going to be able to do later.

“It was just a matter of time. And it’s my time.”

Her friends didn’t know how sick she’d become until last August when she got honest and blunt and told her Facebook family she needed a kidney.

“Asking someone for a kidney is not an easy thing to do,” van den Berghe said. “For example, I have a stepsister who would have been a really, really good match. But she has two small children and she just wasn’t ready for it. You can’t be angry at someone for not doing it.

“I just put it out there, once. And just through the chain of social media lots of people went and got tested.”

She had a big pool to fish in. She is a retired roller derby queen, a star in Santa Cruz where she skated as “Roxy Scarmichael” and her jersey hangs from the rafters.

And then there was the juggernaut family of “Survivor” fans. Her husband, Lex van den Berghe, competed on “Survivor: Africa” and “Survivor: All Stars.”

The transplant folks told her they’d never seen so many people sign up to be tested as a possible donor for one person, van den Berghe said.

People have also donated $24,000 to a GoFundMe campaign set up to pay what insurance won’t cover. [Read more]




From UCLA NewsRoom, by Enrique Rivero

How first ‘vouchers’ in UCLA kidney donation program led to 25 lifesaving transplants

Broadman family


Howard Broadman approached UCLA with the concept of donating a kidney so that his grandson Quinn would be eligible to receive one in the future.


In 2014 a former judge from San Diego County approached the UCLA Kidney Transplant Program with an unusual request: If the judge donated a kidney to a stranger now, could his then-4-year-old grandson, who suffered from chronic kidney disease, receive priority for a future kidney transplant if needed later in life?

The suggestion from Howard Broadman, then 64 years old, initiated the kidney “voucher” program, an innovative system allowing living donors to donate a kidney now, or at some time in the near future, allowing a family member or friend to be given priority for a kidney transplant in the future if needed.

A new UCLA-led study published in the September issue of the peer-reviewed journal Transplantation traces how the first three “voucher cases” led to 25 lifesaving kidney transplants across the United States.

“Some potential kidney donors are incompatible with their intended recipient based on blood type; others may be incompatible based on time,” said lead author Dr. Jeffrey Veale, associate clinical professor of urology at the David Geffen School of Medicine at UCLA, and director of the UCLA Kidney Exchange Program. “The voucher program resolves this time incompatibility between the kidney transplant donor and recipient.”

The program works like this: The voucher donor gives a kidney to a stranger on dialysis. Often that recipient had a friend or family member who had wanted to be a donor but couldn’t due to incompatibility. Now that the person in need of a kidney has received the transplant and has been freed from dialysis, the friend or family member instead donates a kidney to another stranger, launching multiple transplant “chains” that essentially mix and match incompatible recipient/donor pairs with compatible ones. These chains are frequently initiated by altruistic donors who give a kidney to a stranger out of simple generosity.

While not guaranteed a kidney, the voucher recipient gets priority in being matched with a donor from the end of a future transplant chain.

The researchers outline three kidney voucher cases that led to 25 transplants across the United States.
Broadman’s grandson has kidney disease that is expected to lead to kidney failure in 10 to 15 years, requiring a transplant. By that time, Broadman would be about 80 years old, too old to qualify as a donor. Broadman’s December 2014 donation initiated a chain with three recipients, who were removed from a wait list for a kidney from a deceased person.
A 52-year-old father of a young woman who had undergone a transplant in 2007 at age 10 wanted to donate a “backup” kidney in case his daughter’s transplanted organ eventually failed. So in August 2015 he donated a kidney at New York Presbyterian-Weill Cornell Medical Center, which started an eight-transplant chain.
Doctors for the same young woman in the case above say they believe she will eventually need a third transplant. To boost her chances of getting a kidney, her 60-year-old aunt donated in May 2016 on her behalf at Weill-Cornell. This donation provided a second voucher for the woman and triggered a chain of 14 kidney transplants.

The researchers say the program is a “game-changer” because it enables someone to donate now before becoming ineligible because of advancing age or unexpected life events. There are now 30 transplant centers that have joined the program as part of the National Kidney Registry.

Study co-authors are Dr. Gabriel Danovitch, Dr. H. Albin Gritsch, Amy Waterman, Marek Pycia and Suzanne McGuire of UCLA; Alexander Capron and Dr. Nima Nassiri of USC; and Dr. Joseph Del Pizzo, Dr. Jim Hu, Marian Charlton and Dr. Sandip Kapur of New York Presbyterian-Weill Cornell Medical Center.




PKD Research

From Eureka Alert, Indiana University

NSF awards Indiana University $4 million to advance medical nanotechnology

Fight against cancer among applications for devices that merge nanotechnology and biotechnology

Only a year after establishing the intelligent systems engineering program in the Indiana University School of Informatics, Computing and Engineering, the university has been awarded a five-year, $4 million grant from the National Science Foundation to advance nanoscale devices to improve human health, including fighting cancer.

The grant will create the Engineered nanoBIO Hub at IU, one of three "nodes" under the NSF's Network for Computational Nanotechnology nanoHUB project, which provides scientists access to advanced tools for complex research problems. The node at IU will focus on simulating the interactions between nanoscale devices -- which operate at the level of a nanometer, or one-billionth of a meter -- and biological cells and tissues.

The grant is led by Geoffrey C. Fox, IU Distinguished Professor and interim associate dean for intelligent systems engineering at the IU School of Informatics, Computing and Engineering.

"We're living in a world where people are increasingly 'instrumented' with wearable devices and implanted devices within the body," Fox said. Examples include ingestible pills that allow doctors to remotely monitor a patient's vital signs, microscopically small machines to continuously monitor blood sugar in people with diabetes, and customized nanoscale medical devices that offer physicians the unprecedented ability to detect and infiltrate cancer cells to destroy them -- or even potentially "reprogram" them to behave like normal cells.

"This award is a real vote of confidence in the school and an acknowledgement of the fact that our people are conducting extremely relevant, exciting work," added Fox, who also directs the Digital Science Center at IU. "To receive a grant of this magnitude only one year after officially launching an engineering department with programs in bioengineering and nanoengineering is a major achievement."

The ultimate goal of the project is to support the development of medical devices that "operate at the intersection of nanotechnology and biotechnology," he said.

Such devices will require extremely complex software to design and run. It's also important that researchers can simulate their function inside a computer program prior to using them in people to ensure the devices work correctly and efficiently and don't cause harm.

The grant supports efforts to develop, and provide wider access to, tools that simulate these nanoparticle-based devices' physical design; simulate and fine-tune their interaction with tissues in the body; and improve their effectiveness. IU researchers will also work to advance the platform through which scientists and medical researchers beyond the university can access the tools -- and the vast computing power required to run the simulations -- in a relatively user-friendly format within a web browser.

The project's leaders note that IU students will benefit from the project as the first people in the world to gain hands-on experience with these simulation technologies. The grant will also fund six Ph.D. students.

"This work puts our intelligent systems engineering program at the forefront of an extremely exciting, emerging field," said Raj Acharya, dean of the IU School of Informatics, Computing and Engineering. "The efforts led by Geoffrey Fox and colleagues will advance IU's reputation as a world leader in the design of these extremely complex devices with vast potential to benefit human health."

Other leaders of the project are IU School of Informatics, Computing and Engineering faculty members Vikram Jadhao, an expert in the simulation of the materials used in nanoscale devices; Paul Macklin, an expert in the simulation of cancer tissue; and James A. Glazier, an expert in the simulation of physical systems in the body. As director of the IU Biocomplexity Institute, Glazier led the development of a software program called CompuCell3D, which has been used to simulate systems such as tumor growth in polycystic kidney disease and the absorption of painkillers in the liver. The first phase of the grant-funded project will expand access to these and other tools developed in-house at IU. Later, the researchers aim to integrate tools from the wider scientific community into the platform so they will also be more widely available.

An additional lead researcher on the project is Trevor Douglas, a professor in the IU College of Arts and Sciences' Department of Chemistry, whose lab will help conduct tests of nanoscale devices in biological conditions to confirm the accuracy of the team's computational models and software simulations. An expert in biomimetic nanomaterials, Douglas focuses on work involving engineering systems inspired by nature.

The IU Pervasive Technology Institute is also a partner on the project. As a part of the NSF's Science Gateways Community Institute, the institute will facilitate the worldwide scientific community's access to the nanotechnology and biotechnology simulation tools supported under the grant.

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