Sunday, August 26, 2018

PKD Fundraising and Awareness, PKD Research: NanoParticle Drug Delivery

PKD Fundraising & Awareness

From Wilson County News, Texas

Register to Walk for PKD Sept. 8

“Step out” to help fight Polycystic Kidney Disease (PKD) on Saturday, Sept. 8, at the San Antonio Walk for PKD at the Graff Pavilion, OP Schnabel Park, located at 9606 Bandera Road in San Antonio. Registration begins at 7:30 a.m., with the walk to follow at 9:15 a.m.

Walkers can choose to stroll a 1- or 3-mile route or cheer on the kids in a penny dash. There will be a DJ, food, door prizes, and a playground for the kids. There is no fee to register; however, participants who raise a minimum of $100 will receive an official event T-shirt.

To register, visit www.walkforpkd.org/sanantonio.



From MyPalmBeachPost, Florida, By Faran Fagen
Woman in need of kidney transplant helps others with same disease

Every morning, Susan Caplan wakes in her Boca Raton home, hoping the wait is over. That this will be the day the matching kidney is found, and her 19-year quest will be at an end.

She waits. And as she has done since her 1999 diagnosis of kidney disease, she passes the time by helping others who suffer from the same debilitating ailment.

“Being diagnosed with polycystic kidney disease (PKD) was devastating,” said Caplan, 64. “I was determined to learn as much as possible about the disease, and to do all that I could to help raise awareness and help others who were not as healthy as I was at the time — about PKD and organ donation.”

One year after being diagnosed, Caplan began her 12-year volunteer tenure as volunteer coordinator of the PKD Foundation’s New York City chapter until she moved to Boca Raton in 2012. That year, she immediately became the volunteer coordinator of the foundation’s South Florida chapter, a position she still fills with passion. She also organized several walks to raise money for research.

“People email or call me all the time with questions about doctors, medications, research and I try my best to supply them with as much information as possible,” Caplan said. “I know exactly how they feel and what they need, and the community of support that we provide to each other is invaluable. No one should feel alone with polycystic kidney disease.”

Caplan was first diagnosed by accident through a routine colonoscopy. She had pain in her core area, and her gastroenterologist gave her a prescription for an MRI and told her to stop doing sit-ups at the gym. Her colonoscopy was fine, but the MRI showed mild symptoms of PKD. According to the PKD Foundation website, PKD is a chronic, genetic disease causing uncontrolled growth of cysts in the kidney, often leading to kidney failure.

She was shocked. She was teaching kindergarten in New York and felt fine. At that time, it was impossible for doctors to predict if and when Susan’s disease would progress.

“I decided to take control and help others who were not as fortunate and healthy as me,” she said. “I’m a teacher and knew I could help regular people like me become aware of how to live as best as they could with PKD.”

Caplan was hoping to return to her substitute teacher position at a local private school this school year with a new kidney. Unfortunately, she remains on the Hepatitis C Kidney Transplant List at Cleveland Clinic in Weston and the UNOS List at PennMed in Philadelphia.

She’s hoping to find a donor match as soon as possible with her blood type 0+; 0- is acceptable, too. Type 0 blood is the only option acceptable and is in high demand. This adds to the difficulty of finding a donor match. To help spread the word, she has a Facebook page and drives around with a sign on her car asking for a kidney donor to draw attention to her urgent need.

For Caplan and her husband, Steven, finding a cure for PKD is essential. One of their two sons has PKD and is so far living successfully with the disease. There are some distant worries for the future of their three grandchildren. Their hope is that medical technology and advanced research will guide the next generation to a level of successful health.

“Good things come to those who wait,” Steven Caplan often tells his wife. He accompanies her to every appointment and advocates for her. He took her to Festival Flea Market to design a “Need Kidney” T-shirt. They sit on the beach together and he sets up a “Need Kidney” sign so it can get maximum views.

“My greatest wish is that a better lifestyle and a cure is on the horizon for my son and for all others who suffer from PKD,” Susan Caplan said. “Every year, the PKD Foundation coordinates fund-raising walks around the country to help raise money to support education, advocacy, awareness, research, clinical and scientific grants and more.”

This year’s South Florida Walk for PKD will take place on Nov. 4 in Hollywood. “We hope to inspire new friends to come out and join us to help put an end to PKD.”

Susan Caplan received a call many years ago in New York from a woman whose mom had just passed away from the disease. The woman said that she now feared she would also die, and they met for a reassuring chat and a hug. She guided her to a transplant hospital, and her husband donated his kidney on her behalf. She receives a present every year on her birthday from the family.

But now it’s time to focus on her own health. Susan Caplan is determined to maintain a proactive and healthy lifestyle.

“I want to make sure I have the best opportunities to live through this disease without many complications,” she said. “I’m focused on seeing my three grandchildren go through their wonderful milestones in life.”




From WGRZ, Channel 2 NBC Affiliate, Buffalo, New York

WNY Kidney Foundation urges awareness

"Unfortunately up to one-in-seven Americans has kidney disease, but many people don't know about it," says WNY Kidney Foundation Manager, Jeremy Morlock.


Sunday morning at Buffalo's Outer Harbor marked the first ever Kidney Walk and 5K organized by the Kidney Foundation of Western New York, and it came with an important health message.

Hundreds of people took part in the event, including one man who had a kidney transplant last year at ECMC, to help give him a new chance at life after suffering from Polycystic Kidney Disease.

The foundation says it is crucial for all of us to learn more about the function of our kidneys.

"Unfortunately up to one-in-seven Americans has kidney disease, but many people don't know about it," says WNY Kidney Foundation Manager, Jeremy Morlock. "You can lose up to 90-percent of your kidney function before you necessarily develop symptoms. And so we wanna let people know what those risk factors are, that they should get screened, to talk to your doctor about kidney health."

Walkers and runners raised an estimated $39,000 for the foundation in this event.

The Kidney Foundation of Western New York offers various programs surrounding awareness, information, patient support and advocacy in the eight county area of the region. For more information you can visit their website.




PKD Research

From Phys.Org,, source: University of Southern California, Bridge Institute

Nanoparticle targets kidney disease for drug delivery

This tiny particle might change millions of lives

Nanoparticles move past the glomerular filtration barrier of the kidney to target diseased cells. Credit: Illustrator: Yekaterina (Katya) Kadyshevskaya from the USC Bridge Institute at the Michelson Center for Convergent Bioscience

Remember the scene in the movie Mission: Impossible when Tom Cruise has to sneak into the vault? He had to do all sorts of moves to avoid detection. That's what it's like to sneak a targeted drug into a kidney and keep it from getting eliminated from the body.

Since kidneys are the filtering agents in our body, they are keen to get rid of small particles that they sense do not belong. And if the kidney does not filter out a particle, excreting it through urine, it may be eliminated by the liver, which uses macrophages to search for and get rid of foreign bodies.

Researchers at the USC Viterbi School of Engineering, along with colleagues from the Keck School of Medicine at USC, have engineered peptide nanoparticles to outsmart the biological system and target the kidney cells. The innovation may prove critical to addressing chronic kidney disease.

One out of three Americans will have chronic kidney disease in their lifetime. To date, there have been few solutions for advanced kidney disease beyond dialysis and kidney transplant—both of which are incredibly expensive and taxing. Previously, doctors would also have to prescribe heavy doses of medication as they hoped some of the medication would be able to reach and target the kidney. However, this heavy dosing had adverse effects on other organs in the body.

While targeted drug delivery has long been an area of concentration for cancer research, nanoparticles for targeted drug delivery for the kidneys has largely gone unexplored, says the study's lead author, Eun Ji Chung, a WiSE Gabilan Assistant Professor and Assistant Professor of Biomedical Engineering, Chemical Engineering and Materials Science, and Nephrology and Hypertension at USC and a professor in the new USC Michelson Center for Convergent Bioscience.

Essentially, the researchers took several months to create their kidney targeting particle. This nanoparticle is a micelle, which is 10-20 times smaller than a traditional nanoparticle. This particular micelle is synthesized from a peptide chain that is formulated from lysine and glutamic acids. The extra small size of the nanoparticle allows passage into the kidneys through the initial barrier of kidney filtration while the peptide allows the nanoparticle to stay in the kidneys and potentially unload a drug at the site of the disease without getting removed by the urine. In this way, the researchers are taking advantage of a natural mechanism of the body to target the kidneys, and can minimize systemic off-target side effects that are characteristic to most kidney drugs.

Results of In Vivo Testing:

The researchers injected mice with fluorescent-labeled nanoparticles. They found that the nanoparticles they had engineered were more present in the kidney than other parts of the body. These particles thus could carry drugs more selectively than previous tests by other researchers. Furthermore, these biocompatible, bio-degradable particles were able to clear out of the body in less than one week and would not damage other organs.

The study "Design and in vivo characterization of kidney-targeting multimodal micelles for renal drug delivery," was conducted by Eun Ji Chung, Jonathan Wang, Christopher Poon, Deborah Chin, Sarah Milkowski, Vivian Lu at the Viterbi School of Engineering; and Kenneth R. Hallows of the Keck School of Medicine at USC. It was featured in the journal Nano Research and Professor Chung was selected as a Young Innovator in Nanobiotechnology from the journal.


Sunday, August 19, 2018

PKD Gift of Life: Blood Brothers, Music Teacher, Best Birthday Gift, 30th Anniversary Gift; Dialysis Ballot Issue Invalidated in Ohio

Gift of Life

From Sunday Star-Times, New Zealand, by TIM NEWMAN

Blood brothers: Kidney transplant gives a second chance at life

Richard Langdon, left, and Damian Jackson. Langdon received a kidney from Jackson.

Richard Langdon, left, and Damian Jackson. Langdon received a kidney from Jackson.

Whangarei man Richard Langdon, 60, received a kidney in May.

I had known for quite some time this day was going to come.

Polycystic Kidney Disease is a genetic disorder which runs in my family – my grandmother had it, my mother had it, my sister has it, and I have it.

Generally its about a 50/50 split - with my kids all of them could have it, or none of them could have it – it's a roll of the dice.

I first found out about 25 years ago.

At the time I was fit as hell (even) surfing overseas. When I had a medical the doctors picked up a bit of high blood pressure.

That was the giveaway, one of the traits of this thing. It increases your blood pressure because your kidneys are working harder.

For the past 10 years the doctors have been keeping an eye on things, knowing that it was going to kick in at some stage.


Five years ago I started losing kidney function, but it was a gradual decline - about one percentage point per month.

Because it's such a gradual decline you don't feel like you're going downhill too much, everything seems normal.

As your kidney function gets lower though, small things start popping up and you know your kidneys aren't working that well.

When I was down to 15 per cent, I'd notice days when I was really tired, feeling crook in the night, and just not being able drink as many beers as I used to.

Once you get down to 10 per cent, that's when the doctors start thinking about hooking you up to dialysis or finding a kidney donor.

I had two or three people come forward to donate, but they put you through a pretty stringent medical and in the end they got declined.

My 25-year-old daughter also put her name forward, but the doctors were worried she might turn out to be a carrier of the same gene in the future.

Well Damian, who's been like a member of the family for a long time, found out about the situation.

I'd known Damian for years, we played pool and darts together down at the Mt Manaia Club in Whangarei Heads, and his kids and my kids had been running around together since they were young.

He put his hand up to do it, instead of my daughter – which was bloody awesome of him.

By the end of the process I'd got down to five per cent kidney function. I'd have days off when I was really tired and had to sleep, but doctors were amazed I was still working and functioning reasonably well.

I was only a couple of weeks away from going on dialysis, so I was getting myself up mentally and physically for it, but I was quite lucky that Damian came through at the right time.

A space came up and we just put our hands up and said, lets get it done right now.

It was a pretty euphoric feeling.

It's a bit of a roller coaster journey - you go through that process with them as well.

Coming out of it was pretty horrendous though, with 10 days of pretty serious hospital care ... there was all sorts of cords and bloody things going into me.

With the operation the new kidney was placed below the originals, almost in my stomach cavity, while the old kidneys are left to wither away.

I didn't feel well for at least two weeks, and was going in for check-ups with the doctors in Auckland every day.

Ten weeks later and I'm still going into hospital for blood tests twice a week, but it's becoming less often as time goes on.

My levels are all really good and the doctors are happy, but it looks like I won't be able to go surfing again for another four or five months.

Damian Jackson had never considered donating an organ, before he found out about Richard's condition.

On Wednesday 23 May 2018, I was wheeled to the operating room at Auckland Hospital, where the final stage of a six-month journey was about to begin.

I was there in the hope I could give my good friend Richard a second chance to live.

Richard's kidneys were on their last legs, with only six per cent of their functionality left.

He had been deteriorating for a while.

Usually witty and sarcastic, over the months he seemed to grow more and more tired.

As the process went on, I began to realise just how sick he was, and what a battle he had been fighting in the privacy of his own home.

Only near the end of the journey did I learn about the constant nausea and vomiting, low energy levels, and just how difficult normal day-to-day things had become.

Richard had inherited Polycystic Kidney Disease, a condition that leads to progressive cyst development and eventually kidney failure.

I knew he needed a new kidney, and I knew I had to help him however I could.

Read more...




From The Advocate, Baton Rouge, BY CAROLINE GRUESKIN

'The best birthday gift': Tangipahoa woman meets kidney donor she found on Facebook for first time

BR.kidneydonor.081118_HS_117



Angela Robertson, 50, sat nervously, hands pressed against her thighs, as she waited at a banquet table Friday evening for a woman giving her a gift that could change her life.

When she turned around, she saw Jeri Gill, the 53-year-old mother of four, who saw Robertson's plea for help on Facebook seven months ago and offered to give her the kidney she needs to resolve a rare genetic disorder.

"I was wondering if this day was coming," Gill said, as she hugged Robertson for the first time, both women tearing up.

Despite the intimate procedure the two women will undergo, the pair only have spoken via Facebook Messenger. They worried that meeting too soon could have raised their expectations had it not worked out, and they wanted to greet each with their families on hand.

"I just thank you. I just thank you so much for doing it for me," Robertson told Gill as they sat next to each other at the dinner table.

"It's my pleasure. I've told you that all along. It is my pleasure," she responded.

The pair said they wanted to share their story in case it motivates someone else to donate a kidney to someone in need.

Robertson has a rare genetic condition called polycystic kidney disease that causes cysts to grow on her kidneys, stopping them from functioning normally. It's a disease that runs in her family, and it has already killed her father and brother.

Robertson has been dealing with the condition since she was 17 years old, and she had one of her kidneys removed in September. The remaining one weighs more than 15 pounds, making her feel sore and pregnant.

For the past seven years, Robertson, who lives in Independence, has undergone dialysis three times a week while she waited on a list to receive a kidney from a deceased donor.

On New Years Day, she reached out with a hope and a prayer to her followers:

"Friends and family, please share this on your Facebook (page). Maybe, God willing, I will find some special person to donate me a kidney," Robertson wrote on a post with her photo and blood type.

Gill, who lives in Springfield, was interested in donating a kidney after a viral video she watched online several months earlier. In that video, a woman and her husband weep as she presents him with a customized baseball card that says she is his match and can be his donor.

"It was very emotional. And that's where the seed was planted," Gill said. "Because I think before that, I wasn't even sure you could donate a kidney."




From Tech Times, By Athena Chan





A Washington man donated his kidney to his wife just a few months before they celebrate their 30th wedding anniversary. What is polycystic kidney disease or PKD?

Husband Donates Kidney To Wife

In October, Steve and Lesley Kennedy will be celebrating their 30th wedding anniversary. Before reaching that milestone, however, the couple endured the complications of Lesley’s PKD.

For a long time, Lesley had been suffering from the disease that causes fluid-filled cysts to grow in her kidneys. Eventually, her condition grew severe enough for her to require dialysis and doctors informed her that she already needed a kidney transplant.

Although a co-worker and her sister offered to donate a kidney to her, neither of them was a match. Fortunately, when Steve decided to donate his kidney to his wife of nearly three decades, tests proved that they were indeed a match.

On July 19, the couple underwent the successful kidney transplant, and both are doing well so far thanks to the care of doctors, nurses, their son, and Lesley’s sister.

“My donated kidney appears to be doing pretty well in its new home inside Lesley,” Steve shared in a Facebook post where he also promoted organ donation.

”Also consider organ donation. It is truly an amazing gift to be able to donate. Especially to your spouse.”

What Is Polycystic Kidney Disease?

As mentioned, polycystic kidney disease is a condition in which numerous fluid-filled cysts to grow in the kidneys. If the cysts get too large or if too many cysts grow, the cysts can eventually replace much of the kidney and eventually lead to damage, reduced kidney function, and even kidney failure. When this happens, the patient may require a kidney transplant.

According to the National Kidney Foundation, PKD is a genetic condition that can be passed from parents to children. In the United States, about 600,000 people have PKD, and occurs in all races and equally in men and women.

Some of the signs that an individual may have PKD are blood in the urine, increased abdomen size, high blood pressure, fluttering or pounding chest, frequent bladder or kidney infections, and back or side pain. It is often diagnosed using an ultrasound, but in some cases, an MRI and CT scan may be helpful in detecting smaller cysts.

So far, PKD has no known cure, but recent research suggests that drinking plain water and avoiding caffeinated beverages may slow the growth of cysts. Other means to slow the growth of cysts are blood pressure control, prompt treatment of kidney and bladder infections, and living a healthy lifestyle, which includes weight control and reduction of salt intake.




From CBS Channel 4, Boston, MA, By Lisa Hughes

Music Teacher Hits The Road Hoping To Find A Kidney Donor


When we spotted a unique advertisement on Facebook for someone looking for a kidney, well, it made us wonder. The message on the back of a car reads: “To ditch dialysis and resume dancing: Kidney donor needed, B+ 617-799-9741.”

So we called the number to learn the story and we found out, it’s all about hope for a better life

Catherine Boger is a songwriter and works at the Berklee College of Music. She’s written a song about her need for a kidney transplant and being stuck on a transplant waiting list. “I have polycystic kidney disease. It’s a hereditary condition,” she explains.

Even though she’s on that waiting list, now she’s going direct. Using her car as a traveling message board, hoping a good Samaritan steps up and is a match.

“There’s nothing you can think of that people haven’t done to try to find a donor. They’ve put up billboards. But a lot of people have had success with car signs, so I put a sign on my car,” she says.

For more than six years Catherine has been on home dialysis, and does six “exchanges” every day. “I do five on a cycler machine overnight, and I do one in the afternoon,” she explains.

Which means she’s tethered to dialysis for a big chunk of the day and it’s not a cure. “Your blood isn’t fully clean so your brain gets a little foggy, and your body gets tired,” she says.

She knows the car sign is a long shot, but only a transplant can give her the freedom and health to do what she wants. The stakes are high for Catherine. Her grandfather, mother and uncle died from kidney disease.

Kidneys are one of the few organs that can be donated from a “live” donor. There are over 100,000 Americans waiting for kidney transplants.

More information:

New England Donor Services

National Kidney Foundation




Dialysis Politics

From Cleveland.com

Ohio kidney dialysis ballot issue invalidated by state Supreme Court


Ohioans won't be voting on a measure to cap kidney dialysis costs this November after the Ohio Supreme Court determined individuals collecting signatures for the issue didn't fill out the necessary forms.

The Ohio Renal Association, which opposed the measure, challenged the petitions turned in by the Kidney Dialysis Patient Protection Amendment Committee. The amendment is backed by the SEIU, which hired a California company to collect signatures from Ohio voters to qualify the measure for the ballot.

The Ohio Renal Association claimed that individuals managing paid signature gatherers did not fill out and submit a required disclosure form before they supervised signature collection. The association claimed 145 part-petitions had been filled out before the managers submitted the proper forms.

The Ohio Supreme Court agreed and invalidated the entire petition on Monday.

"That rule applies with particular force in this election case, in which 'strict compliance' with the law is required unless the statutory provision at issue expressly states that substantial compliance is acceptable," Chief Justice Maureen O'Connor wrote in an opinion joined by the other six justices.

Secretary of State Jon Husted's office defended the petition, saying the Ohio Renal Association didn't provide evidence showing the managers were paid before they supervised signature collection. It's possible, attorneys for Husted said in a court brief, that the managers initially collected signatures as unpaid volunteers.

O'Connor wrote that the committee's own evidence showed the signature gathering effort was organized and managed by for-profit companies. Backers paid California-based AAP Holding Company LLC $3.6 million to circulate petitions, according to campaign finance reports.

The deadline to submit signatures for the November ballot was July 4. Amendment supporters submitted signatures of registered Ohio voters then but were about 9,500 signatures short of the required 305,591. It turned in a second batch of signatures 10 days later.

None of those signatures will count going forward if the group decides to try again to put the measure before voters, according to a secretary of state's office spokesman.

The proposed constitutional amendment would have capped dialysis costs at 115 percent of the cost of direct patient care, required annual inspections of dialysis clinics and penalize companies that overcharge patients.

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