Chain of Life; Neighbor Gives Life; Slowing Kidney Disease in Kids

Gift of Life

From CBS News

Altruistic donor and the transplant chain she inspired

Zully Broussard donated her kidney to Oswaldo Padilla, whose relative wasn't able to donate because the relative wasn't a compatible match.

Keith Rodriguez wanted to give his mother Norma the kidney she needed, but he couldn't because they weren't a match. She got a kidney as part of the donation chain, and he gave his to a stranger.

Zully Broussard loves life and says she wants others to get a chance to appreciate it, as well.

"I just want them to have that quality of life," she told CBS News. "I want their loved ones to know they're going to be around."

Earlier this month, the 55-year-old Northern California woman donated one of her kidneys to a stranger, setting off a rare chain reaction of donations.

There are many people who want to donate their kidney to a loved one in need, only to discover that their blood types aren't compatible.

Oswaldo Padilla 26, spent the last two years on dialysis, needing a new kidney. His sister-in-law, Sonia Camacho, couldn't donate to him because of their blood types. When instead he received Broussard's kidney, that freed up Camacho to donate to another stranger in need. The chain continued, leading to a total of six new transplants in early March at San Francisco's California Pacific Medical Center.

The 12 patients - six donors and six recipients - met this week for their first reunion since the operations, captured exclusively by "CBS This Morning."

The pairs of donors and recipients were matched with the help of a computer software program developed by a kidney transplant recipient, David Jacobs, who underwent his life-saving operation at the same San Francisco hospital in 2004.

Even though the 11 other patients were strangers, Broussard felt like she had helped her own loved ones.

"I feel like they're family even though we just met today," she said. "There's connections there."

Broussard has had a difficult time with illness in her own family. One of her sons died of cancer at a young age. Her husband also died of cancer just over a year ago. When her friend suffered kidney failure, Broussard volunteered to donate. The friend ended up receiving a kidney before Broussard could give her own. Broussard instead gave her kidney to a stranger in need.

"If I had four kidneys, I'd give away three," she said. [Read more]

From Marinij.com, San Rafael, CA

Lib at Large: Kidney donor a perfect match for singer-songwriter, in love, too

Singer-songwriter Jesse Brewster plays guitar as his wife, Sarah, sorts the mail at their San Rafael home. He suffers from polycystic kidney disease but is doing much better after Sarah gave him one of her kidneys. (Frankie Frost/Marin Independent Journal)

Their friends and families have always thought Marin singer-songwriter Jesse Brewster and his wife, Sarah, are a perfect match. Now they know they are.

The Brewsters have been recuperating at home from transplant surgery that gave him one of her kidneys, saving his life.

“It’s the most precious gift you can give, literally a piece of yourself,” says Allyson Paige, Jesse’s friend and musical collaborator. “Soul mates is such a cliche, but if ever there was a couple who are meant to be together, they’re that couple.”

It doesn’t happen every day that a wife has the blood type, the antigens, tissue markers and other factors that make her compatible to donate an organ to her husband. Although there are no firm statistics on this, Joel Newman of the United Network for Organ Sharing says the odds are less than one in 10. One friend calls it divine providence.

“We have a large number of factors that match,” Sarah said one morning this week, sitting beside her grateful husband on a couch in their San Rafael home. “Normally, you don’t have that unless it’s a familial match. So that’s been the joke, that we’re distant cousins.”


Forty-year-old Jesse has known since he was 20 that he had inherited polycystic kidney disease (PKD), one of the most common life-threatening genetic diseases, affecting an estimated 12.5 million people worldwide. People with PKD develop cysts that fill their kidneys with fluid, enlarging them and causing bleeding and severe pain.

“When he told me that he had the disease, it was the first time I’d heard of it,” Sarah says.

“For how prevalent PKD is, not a lot of people know about it and it doesn’t get a lot of funding,” Jesse adds.


EPIPHANY

To raise money and awareness, Jesse’s debut album, 2005’s “Confessional,” was a benefit for the PKD Foundation (pkdcure.org), an organization committed to discovering treatments and a cure. He dedicated a song on the record, “One Reason,” to his older brother, Jim, who died of an aneurysm caused by PKD when he was 29. The disease has also seriously debilitated his father.

“My brother was one of my biggest supporters musically since I was 12,” Jesse says. “His death opened my eyes about how serious this disease is. It changed my whole outlook on life, about living it to the fullest. I was already involved in music, but after he passed away, it really cemented that it was what I wanted to do. You never know how much time you have.”

Since there is no cure yet for PKD, the Brewsters had known for the eight years they’ve been married that the day might come when Jesse would need a kidney transplant. [Read more]

From Lansing State Journal, Livonia, Michigan, by Karen Smith, Michigan.com

Livonia man to donate kidney to his neighbor

You might expect someone to give a neighbor a cup of sugar. But Jeff Sieber of Livonia is giving his neighbor a kidney.

Sieber, 53, is donating a kidney later this month to Linda Zukowski, 51, who lives a block and a half away in Castle Gardens subdivision.

"This is more than any typical neighbor would do," said Zukowski, who has a hereditary kidney disease that is fatal unless she has a transplant or goes on dialysis . "He's willing to put his life on hold for me and to alter his lifestyle for a short period of time."

Sieber, a salesman for A123 in Livonia, will have to take it easy until his remaining kidney adjusts to doing the work of two kidneys, refraining from lifting and giving up his beloved bike riding for about eight weeks.

Still, "it was a no-brainer," Sieber said of his decision. Then, joking, he said, "I told her my liver's off the table. I have plans for the liver."

The neighbors have been friends since Zukowski started a playgroup about 20 years ago after moving to Castle Gardens. The Siebers had moved there from Dallas and didn't know anyone. Their mailbox was one of the ones in the sub Zukowski had slipped a note into, asking if they wanted to get their children together to play.

Several families in the playgroup have remained friends through the years, sharing each other's struggles and celebrating each other's successes. Some of the couples travel together now that their kids are grown.

Initially, Zukowski had a few other people offer to donate her a kidney, including her husband. Doctors thought one of them would be a good match and scheduled an operation for December. But in November, they found out Zukowski's body would likely reject the donor's kidney because of differing antibodies.

Zukowski, who is on medical leave from her job at Valassis in Livonia, started a Facebook page to create awareness of her need for a kidney and let people know about live organ donations.

When Sieber's wife told him the news that Linda's intended donor wasn't a good match, he couldn't sleep that night. "I knew the next morning I wanted to do this; from there it's just been moving forward."

Sieber said a sermon he heard at his church, Holy Trinity Lutheran, confirmed his decision. And, he thought of his mother Ellen Sieber, 71, of Turtle Creek, Pa., who lost a kidney 42 years ago. "My mom is still alive and lives a very full life (with one kidney)," he said, adding she has been a positive role model.

After she started the Facebook page, more relatives, friends, coworkers and other members of the playgroup came forward, willing to donate a kidney to her including Sieber and his wife, Tammy. A total of 15 offered, and 13 were tested before doctors concluded Sieber was the best match of the bunch. "That's quite a testament to the person she is," Sieber said of the number of people willing to undergo an organ transplant for Zukowski.

Zukowski has polycystic kidney disease, which has reduced her kidney function to 10 percent. Her mother, Patricia Zondlak, 78, of Wixom has the same disease and received a cadaver kidney 25 years ago this May from a young man who had died. The transplanted kidney continues to work well today.

Zukowski said many people don't know about live organ donations, which in addition to kidneys can include parts of the liver, lung, pancreas, intestine and skin "without detriment to the donor." [Read more]

PKD Research

From Fresno Bee, Fresno CA, by BY ALAN BAVLEY, The Kansas City Star

Getting a clearer picture of how to slow or stop kidney disease in children

Two-year-old Marley Martinac has a serious chronic kidney disease, but she's going to have a better shot at a healthy life than kids born just a decade earlier.

Thanks largely to an ongoing national study with leadership at Children's Mercy Hospital in Kansas City, doctors now have a clearer picture of the best ways to stop or slow the progression of kidney disease in children like Marley.

The goal is to keep the children growing and thriving for as long as possible, preventing, or at least postponing, the need for kidney dialysis or a transplant.

"Thank God, we're not at that point at all," said Marley's mother, Katie Martinacof Bates City, Mo. "She's pretty spunky. She hasn't lost that."

About 16 percent of the U.S. population has chronic kidney disease, a gradual loss of kidney function caused by high blood pressure, diabetes and a variety of other conditions. How many children have these conditions isn't known, but 2,500 children nationwide are on dialysis and more than 5,000 have received kidney transplants.

"We're aiming to head things off in childhood," said Children's Mercy kidney specialist Bradley Warady, "to prevent children from requiring dialysis or a kidney transplant, or maybe delay it to give children more chance to grow and for their minds to develop."

Warady, along with researchers at Children's Hospital of Philadelphia, is coordinating the Chronic Kidney Disease in Children (CKiD) Cohort, a study that since 2003 has been following close to 900 children with mild to moderate kidney disease recruited from medical centers across the United States and Canada. Their research, funded by the National Institutes of Health, is now the largest long-term study in North America of any chronic childhood disease.

Research by the CKiD group, published recently in the American Journal of Kidney Diseases, shows that the severity of three common conditions in children with kidney disease - high blood pressure, anemia and protein loss through urine - predict how quickly their disease will worsen. For example, when urine has high protein levels, kidneys deteriorate twice as fast.

Because these conditions are all treatable, Warady said, the study offers doctors guidance for improving their patients' care.

"We want to detect it when it's mild and easier to intervene," he said. "We have the tools to treat these things. But the treatment hasn't been done yet in a consistent way. This emphasizes the importance of these factors. It raises awareness of how significant they are."

Doctors have not had much data on childhood kidney disease, said Joseph Vassalotti, chief medical officer of the National Kidney Foundation. This research "really advances our understanding of the natural history of chronic kidney disease in children."

These diseases include birth defects, such as abnormally developed kidneys that don't work well or blockages in the kidney's plumbing; genetic conditions such as polycystic kidney disease, in which fluid-filled cysts destroy kidney tissue; and a variety of diseases that attack the hundreds of thousands of tiny clusters of blood vessels that filter the blood.

"There's a lot to childhood kidney disease," Warady said. "It's a lot more complicated than 'I just don't pee.'"

Marley has a condition called nephrotic syndrome that causes her kidney damage. Doctors at Children's Mercy aren't sure what is responsible, but they've been able to keep the condition under control.

Marley's mother remembers that it was Christmas Eve of 2013 when her daughter's eyes began to redden and swell. As Marley was taken from pediatrician to pediatrician who said she had allergies, her condition worsened. "Her body was so swollen, and her skin was splotchy and white," Martinac said.

At the Children's Mercy emergency room in April, doctors discovered that protein was spilling into her urine. Healthy kidneys don't let much protein pass through their filters. But when those filters are damaged, protein can leak through. And the protein release itself can lead to more kidney damage. [Read more]

From WhaTech

Most polycystic kidney disease cases global clinical trials review, H1, 2015 analysis, trends and forecast shared in new research report

Clinical trial report, Polycystic Kidney Disease Global Clinical Trials Review, H1, 2015" provides data on the Polycystic Kidney Disease clinical trial scenario. This report provides elemental information and data relating to the clinical trials on Polycystic Kidney Disease.

It includes an overview of the trial numbers and their recruitment status as per the site of trial conduction across the globe. The databook offers a preliminary coverage of disease clinical trials by their phase, trial status, prominence of the sponsors and also provides briefing pertaining to the number of trials for the key drugs for treating Polycystic Kidney Disease.

Note: Certain sections in the report may be removed or altered based on the availability and relevance of data for the indicated disease.

Click Here To Download The sample Copy Of This Report:http://www.marketresearchreports.biz/sample/sample/255159

Scope

- Data on the number of clinical trials conducted in North America, South and Central America, Europe, Middle-East and Africa and Asia-pacific and top five national contributions in each
- Clinical trial (complete and in progress) data by phase, trial status, subjects recruited and sponsor type
- Listings of discontinued trials (suspended, withdrawn and terminated)
- Understand the dynamics of a particular indication in a condensed manner
- Abridged view of the performance of the trials in terms of their status, recruitment, location, sponsor type and many more
- Obtain discontinued trial listing for trials across the globe
- Espy the commercial landscape of the major Universities / Institutes / Hospitals or Companies

Read more here: http://www.fresnobee.com/2015/03/25/4445703/getting-a-clearer-picture-of-how.html#storylink=cpy

Read more here: http://www.fresnobee.com/2015/03/25/4445703/getting-a-clearer-picture-of-how.html#storylink=cpy

Bumpy Kidneys; 5 million to need dialysis or transplant by 2030; New Adult stem cell therapy; Kidneys & Rocket Science

Living with PKD

From MMD Newswire

Cincinnati 5 year old writes a book about his ''Bumpy Kidneys''

Logan's Got Bumpy Kidneys

You might not see them, but he's going to tell the world about it...and he's choosing March, National Kidney Month, to get started.

Cincinnati, OH (MMD Newswire) March 16, 2015 -- Logan Wiesman, now 5 years old, found out he had bumpy kidneys when he was just 2. He told his mom that his back was hurting, but he didn't know why. After several tests, they figured it out. His kidneys were already the size of adults' kidneys, and they were very, very "bumpy."

Logan and PKD

Logan has what is called Polycystic Kidney Disease, or PKD. In fact, he has a rare form called ARPKD, which occurs mostly in children.

PKD is actually one of the most common, life-threatening genetic diseases. More than 600,000 Americans and 12.5 million newborns, children and adults worldwide battle PKD every day. PKD affects more people than downs syndrome, cystic fibrosis, muscular dystrophy, hemophilia, and sickle cell anemia - combined.

The problem is, people can't see it, and therefore don't know about it! As Logan prepares to go into kindergarten, with his tummy bigger than most his age - he's decided he's not going to hide it. He wants people to know what he's dealing with here!

Logan Writes a Book

So Logan has teamed up with his Aunt Apie (April Cielica of Blue Ash Ohio) to write a book about his condition that he calls "Logan's Bumpy Kidneys." He talks about the fact that he has to drink lots of water, that his back often hurts, and that his kidneys will likely grow to the size of a football! He also admits that sometimes, he's afraid people will make fun of his tummy, and that's why he wants to tell his story. Not just for him, but for others who are also dealing with this same disease. April, who has taken a 2 year assignment in Romania for P&G, was delighted to do this with Logan from afar. "I decided to take my family on this grand adventure to Romania for two years, but I wanted to some how stay very close to Logan and his family. This book gave me just that opportunity. In fact, I feel I'm doing even more to help him get his story out now than ever before."

Where Can You Find Logan's Book?

Logan's Book is available for the Kindle, for iBooks and physically on Etsy, where you can find it by searching for "Logan" and "Bumpy."

You can also learn more about Logan and PKD by going to www.bumpykidneys.com



From New Orleans Saints

Saintsation Kriste spoke at Polycystic Kidney Disease Foundation's Leadership Conference

Saintsation Kriste was a guest speaker at the Polycystic Kidney Disease (PKD) Foundation’s Leadership Conference in Kansas City, Mo., from Feb. 20-22. There were more than 100 people in attendance; two representatives from each state and some representatives from Canada. Attendees were chapter coordinators and leaders across the country with goals of updating each other on ongoing kidney research and continuing to raise awareness of PKD.

Kriste wants people to know that kidney disease kills more than 90,000 Americans per year, which is more than prostate cancer and breast cancer combined. Kriste, 41, has been diagnosed with PKD for 15 years. After having PKD for 10 years, she believed she was guilty of not spreading awareness of the disease when she still had friends that did not know she was living with PKD. After talking to fellow Saintsations, one of the other Saintsations learned that her grandmother was diagnosed with PKD. Starting the conversation and spreading awareness of the disease are what matter most to Kriste during her involvement with the PKD Foundation.

“It was my first time speaking at anything like that and I was nervous. I spoke for about 30 minutes and told my personal story,” Kriste said. “Once my mom had the disease and had the kidney transplant, that’s when I changed the way I live. I now drink two liters of water per day and it has been shown that drinking a lot of water actually helps.”

Kriste was asked at the leadership conference to emcee during the National Convention in June 2016 in Orlando where there will also be patients, doctors and people looking to help spread awareness about PKD. She has been participating in the PKD Foundation’s 31 Days of PKD Challenges in honor of March’s National Kidney Month. Today Kriste plans to complete the sign “I’m taking the PKD Challenge for _____” and take a selfie with her two sons before posting it on social media. [Read more]



Gift of Life

From the Tallahassee Democrat, by Jim Henry blog

Friendship leads to kidney transplant

They didn’t know each other from Adam 15 years ago.

Yet a friendship that took hold on the softball field – one was an outfielder, the other an infielder – quickly strengthened over time.

They saw similarities in each other. Were inspired by each other. Their families got to know each other.

However, they were also very different.

The outfielder was healthy

The infielder was not, suffering from an inherited kidney disease that would eventually ravage his body.

After two years of discussions, testing and reflection – not to mention convincing the infielder this was absolutely the right thing to do – the outfielder made an ultimate sacrifice last August at Shands Hospital in Gainesville.

Mark Meleney donated his left kidney to Nathan Trevor Flanagan.

“There were so just so many reasons why it made sense in the end,” said Meleney, 54, Director of Visitor Services and Assistant Director in the Office of Admissions at Florida State.

“I watched Trevor as a person, how he lived his life over time as a care giver. He’s an amazing guy.”

Of course, Flanagan, 46, feels the same way about Meleney.

They are teammates and seven-month blood brothers celebrating this national kidney month with gusto.

One in three Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure, according to the National Kidney Foundation. [Read more]

PKD Research

From Phys.org

How rocket science may improve kidney dialysis

A team of researchers in the United Kingdom has found a way to redesign an artificial connection between an artery and vein, known as an Arterio-Venous Fistulae, which surgeons form in the arms of people with end-stage renal disease so that those patients can receive routine dialysis, filtering their blood and keeping them alive after their kidneys fail.


The new design, described in the journal Physics of Fluids, from AIP Publishing, may decrease the likelihood of blockages in Arterio-Venous Fistulae, which is a major complication of dialysis.

While the AVF would have to prove effective in clinical trials before they could be deemed a success, the researchers are enthusiastic about their approach, which used software from the aerospace industry to design the novel configurations.

"At the moment, the process of creating an Arterio-Venous Fistulae for dialysis is rather 'one-size-fits-all'," said Peter Vincent, a senior lecturer and EPSRC early career fellow in the Department of Aeronautics at Imperial College London. "Our ultimate aim is to use computational simulation tools to design tailored, patient-specific Arterio-Venous Fistulae configurations that won't block and fail." [Read more]

From the Economic Times

Therapy reduces chances of dialysis

MELBOURNE: A new stem cell therapy discovered by Australian researchers could help patients with chronic kidney disease to avoid dialysis or kidney transplants.

A research led by scientists of the Monash University has for the first time shown the effectiveness of combining a stem cell-based therapy with an anti-scarring agent which would reverse scarring and markers of kidney injury, thereby reducing the need for dialysis or transplantation.

The researchers discovered that .. [Read more]

From Free Press Journal, London

Over 5 mn will undergo dialysis, kidney transplant by 2030: Study

The number of people receiving treatment for advanced kidney failure – such as dialysis or kidney transplant – will double to over five million by 2030, mostly in developing regions such as Asia and Africa, a study said, reports IANS.

Renal replacement therapy (RRT), through either dialysis or renal transplantation, is a lifesaving yet high-cost treatment for people with end-stage kidney disease. According to the latest research published in the UK-based The Lancet by the George Institute for Global Health, the number of people receiving RRT is projected to grow from 2.618 million in 2010 to 5.439 million by 2030.

“However, the number of people without access to RRT will remain substantial,” the study titled ‘Worldwide access to treatment for end-stage kidney disease: a systematic review’, said.

The largest absolute growth in the number of people receiving RRT is projected to rise from 0.968 million people in 2010 to 2.162 million by 2030 in Asia. The number of people receiving RRT is also forecast to increase rapidly in Africa, from 0.083 million in 2010 to 0.236 million by 2030, and in Latin America and the Caribbean, increasing almost 2.5 times from 0.373 million in 2010 to 0.903 million by 2030.

The review said about 2.618 million people received this life-sustaining treatment worldwide in 2010. However, it noted “at best, only half or less of all people needing RRT worldwide had access to it in 2010, meaning at least 2.284 million people might have died prematurely because they did not have access to the treatment in 2010″.

Most of this burden of preventable deaths fell on low income and middle income countries like India, China, Indonesia, Pakistan and Nigeria. This data show a pressing need to develop low-cost RRT alternatives to reduce disparities in access to the treatment, and the importance of development, implementation, and assessment of cost-effective end-stage kidney disease prevention strategies.

From University of Minnesota, News Release

UMN Researcher Honored for Polycystic Kidney Disease Work

Peter Igarashi, M.D., is one of two recipients of the Lillian Jean Kaplan International Prize for Advancement in the Understanding of Polycystic Kidney Disease (PKD). The award is a partnership between the PKD Foundation and International Society of Nephrology (ISN). It recognizes a medical professional or researcher exhibiting excellence and leadership in PKD research and whose work demonstrates tangible achievement toward improving knowledge and treatment of PKD. Igarashi is the head of the Department of Medicine at the University of Minnesota School of Medicine.

“This is a well-deserved honor for Dr. Igarashi, who exemplifies what it means to be a physician-scientist,” said Brooks Jackson, M.D., M.B.A., dean of the medical school.

The PKD Foundation and ISN established the award in 2002 through the generosity of Thomas Kaplan, in memory of his mother, Lillian Jean Kaplan, who had PKD and died in 2002. The award is to stimulate members of the global scientific and medical communities to increase or begin research leading to a PKD treatment and cure, generate momentum in the PKD field and produce positive public awareness about PKD. The awards presentation took place at the ISN World Congress of Nephrology in Cape Town on March 15.

Igarashi is the Nesbitt Chair and Head of the Department of Medicine at the University of Minnesota Medical School. He previously served as Chief of the Nephrology Division at the University of Texas Southwestern Medical Center where much of his work on PKD was conducted.

Igarashi has 30 years of research experience in kidney development, stem cells and PKD. His laboratory has identified new proteins that control genes and characterized their roles in cystic kidney disease. In addition, Igarashi has studied the role of the primary cilium in the progression of PKD. His group demonstrated that inactivation of a gene needed for the production of the primary cilium causes polycystic kidneys. Recent studies from his laboratory have revealed that non-protein coding genes play a role in PKD and represent potential therapeutic targets.

No Sodium with PKD; World Kidney Day; Seeking Cheap Dialysis; Increasing Projections for CKD by 2030

Living with PKD

From The Los Angles Loyolan, by Michael Peters, Digital Intern

Making the most out of no sodium

I am not a vegetarian. For the last few months, however, I have endured a diet outlawing meats of all kinds – beef, fish, chicken, pork, turkey. But these habits extend beyond that of mere vegetarianism. Due to my declining kidney function, for the better part of 20 weeks I have been on a low-sodium diet.

I have polycystic kidney disease, which means that my endocrine system is littered with perpetually-filling sacs of fluid. Due to this genetic disorder, my kidneys roll through a never-ending state of deterioration. In order to slow this process, I must refrain from eating most foods with substantial amounts of both sodium and potassium.

Like plenty of health diets, this one limits obvious salt monsters such as soda, french fries, potato chips as well as meat. However, when tackling one’s sodium levels, one quickly learns how many other seemingly-innocent food items can be equally guilty of housing a plethora of these not-so-helpful ingredients.

Violators come in all forms and from every food group. Fruits to stay away from include the Vitamin K-riddled bananas and their favorite comedic partner, oranges. Dark greens, such as kale, count among the vegetable offenders, much to my disappointment. Most nuts are held in a weary gaze, and almost all dairy is off-limits.

So what does this leave for me to enjoy? Essentially, all that is left is white bread, apples and a few veggies such as carrots. However, all hope is not lost. Balance is essential. For instance, since I no longer eat meat, perhaps a couple days per week I may be allowed a portion of peanuts or eggs to maintain protein. I cut soda and orange juice from my meals, so I can occasionally appreciate milk in my cereal. Instead of an ironclad resolution against taste, redistribution is necessary.

Still, many kidney patients find the transition to this diet off-putting and near-Herculean; I absolutely agree. For someone who has enjoyed burgers his entire life, the sudden absence of meat was a startling transition, and the inability to enjoy other delicacies such as most desserts, pasta sauce or even cheese can extensively bear down on one’s resolve.

The task can be daunting, but it is not insurmountable. I recognize that my health is crucial, and even though I can be sorely tempted to return to the Quarter Pounder’s embrace, I know my kidneys would never forgive me for it. Therefore, I shall continue to remain not-quite-vegetarian as long as is required.

Kidney News

From Nephrology News, By Mark E. Neumann

The impending burden of kidney disease

A study published in the March issue of the American Journal of Kidney Diseases projects that the number of new cases of chronic kidney disease (pre-dialysis) will grow significantly through 2030. More than half the U.S. adults aged 30 to 64 years are likely to develop CKD.

Treating kidney disease has become an expensive entitlement for the federal government. While employing various payment strategies over the last four decades to control costs, the number of patients in the ESRD Program has grown significantly. When the Nixon administration signed off on Medicare legislation establishing the program in 1972, it estimated a $35 million annual cost – and most of that would be recoup as people went back into the workforce.

That hasn’t exactly happened, and the cost of the program has mushroomed to around $16 billion a year. There is some justification for that – we suspect lawmakers in 1972 didn’t picture the more complicated patient that gets their kidneys cleansed today: those with diabetes, congestive heart failure, people arriving in the ER needing a temporary catheter and dialysis immediately. Half of the program’s costs are generated on the Part A side: hospitalizations.

Understanding CKD

The National Kidney Foundation, through its Kidney Disease Outcomes Quality Initiative, built the algorithm using a patient’s GFR to define the five stages of kidney disease, with increased progression from 1 to 4 and 5 being kidney failure. But we really don’t dedicate the resources to using it and making it valuable; patients don’t get referred to a nephrologist early enough. It’s like being on a fishing boat out in the ocean trolling for tuna with a spinning rod. The opportunity is there; the tools are not.

It’s coming for many of us

For U.S. adults aged 30 to 49, 50 to 64, and 65 years or older with no CKD at baseline, the study showed that residual lifetime incidences of CKD are 54%, 52%, and 42%, respectively. The prevalence of CKD in adults 30 years or older is projected to increase from 13.2% currently to 14.4% in 2020 and 16.7% in 2030.

The risk for CKD in this younger age group is significant, the authors note. “This compares to lifetime incidences of 12.5% for breast cancer in women, 33% to 38% for diabetes, and 90% for hypertension in middle-aged men and women.” [Read more]

From The Australian, by John Ross

Quest of cheap dialysis as kidney disease claims millions

An Iranian patient receives treatment at the dialysis ward at the Helal Iran Clinic in Tehran this week, ahead of World Kidney Day

MEDICAL researchers have launched a global quest for an ­affordable dialysis machine after an Australian-led study ­revealed a staggering toll from treatable kidney disease.

The research, published this morning in The Lancet, found that at least 2.3 million people were dying each year because they could not access dialysis or kidney transplants. The toll could be as high as 7.1 million, with most of the victims in Asia.

“The numbers we’ve seen are breathtaking, especially in our region,” said co-author Martin Gallagher of the George Instit­ute and University of Sydney.

The study, the first comprehensive analysis of chronic kidney disease across the planet, found that about 2.6 million people received dialysis or kidney transplants in 2010. But up to 9.7 million missed out, mostly in developing countries.

Lead author Vlado Perkovic, also with the George Institute, said kidney failure rates were projected to grow rapidly.

“Millions of people appear doomed,” he said.

Cost is a major factor in the developing world, with most people unable to afford the $26,000-$100,000 annual bill for dialysis.

But the costs are increasingly prohibitive for rich countries too, totalling $1 billion in Australia.

“The impact on health expenditure is vastly disproportionate to the numbers of people who use it,” the institute said.

Specialists have called for kidney disease to be made a global health priority.

And the George Institute has teamed up with three overseas research organisations to offer a $100,000 prize to the designer of the first low-cost dialysis mach­ine.

The winning entry would need to meet safety standards, run off solar power, purify water on the spot and cost $1000 to make.

Current machines cost up to $20,000, with water purification systems costing as much again.

But Professor Perkovic said the machines were “hugely” overpriced. “Dialysis has been around for half a century, yet the technology hasn’t evolved substantively,’’ he said. [Read more]

From Local 12, Cincinnati, Ohio, Liz Bonis

World Kidney Day, March 12th

In honor of World Kidney Day March 12, the National Kidney Foundation is offering free screening at Tri-County Mall. The goal is to help you learn more about a serious concern one patient in Anderson had and didn't even know about. 

Three days a week, three hours a day; that's how often Allen Walls sits hooked up to a dialysis machine. He has been on dialysis for two years. 

Dialysis filters the blood when a person’s own kidneys can't. He said in hindsight he remembers early warning signs he just didn't know they were signs his kidneys were giving up. Walls said, “I sure do, it was itching, a funny taste in your mouth; a little anemic, tired you know. But I never put it all together, I guessed it was something else but not kidney disease.” 

Part of the reason that he has chosen to share his story was not so people feel like dialysis or end stage renal disease will happen, it's so people don’t. There are some simple tests that anyone could take to know the early warning signs. Intervening early could save a person’s kidneys but more importantly their life. 

Perry Malloy-Hall, community outreach manager, said, “There are three easy tests that you do consisting of a BMI, a blood pressure and a urine test.” Malloy-Hall and Brenita Brooks are part of a team with the National Kidney Foundation which offers the tests through special screening days at no charge. They check blood pressure to see if it's at least below 140 over 90, 

BMI to see if a person’s weight may be putting your kidneys at risk, and since foods people eat have protein their kidneys should filter out of the body they test the urine for spillage of protein. If a person’s kidneys are spilling protein it’s a sign they have issues. 

Brooks said, “I say all the time that the kidneys is the most underrepresented organ in the body and most people are not aware of it until it's too late; until your kidneys fail.” Allen Walls is now on the transplant waiting list. He said kidney failure often results from problems people can prevent. And that's why it’s so important for people to get the simple tests to see if they do have kidney disease.”

Gift of Life

From Maple Ridge - Pitt Meadows Times, British Columbia, Canada, by Troy Landreville

Kidney transplant changes life of Pitt Meadows resident

With Kidney Health Month in Canada upon us, Pitt Meadows resident and kidney transplant recipient is urging people to consider becoming an organ donor.

Phil Rosario jokes that he could apply for dual citizenship, because he has a little bit of American in him.

The 40-year-old Pitt Meadows resident is forever connected to Scott Dudley, the mayor of Oak Harbour, Wash., after Dudley donated one of his kidneys to Rosario.

It was a life-changing transplant for Rosario, who three years ago was diagnosed with autosomal dominant polycystic kidney disease (ADPKD), a life-threatening, genetic disease that causes multiple cysts to form on the kidneys, resulting in massive enlargement of the kidneys – up to three to four times their normal size.

Between 4,500 and 9,200 people in B.C. are impacted by ADPKD, a condition which leads to deterioration of kidney function and in some cases, kidney failure.

If not for the transplant, Rosario believes he’d be on dialysis for several years to come.

“What Scott did, it’s unbelievable,” Rosario said.

The wheels for the transplant were set in motion when Rosario’s ex-wife (and still good friend) Keesha, an active Rotarian, shared his story to fellow Rotarians during a 2011 meeting in Washington State.

Dudley, Rotary Club of North Whidbey Island Sunrise – Past President, was at the meeting and offered to be Rosario’s donor. The mayor had witnessed firsthand the long-term impact of ADPKD as several of his family members had the disease.

“She had no idea Scott was there or who Scott was, or what his background was,” Rosario recalled. “His ears perked up when he heard ADPKD and he approached her at the end of the evening and said, ‘I want to be your husband’s donor.’ He doesn’t have the disease. His family is riddled with it, but he is fine. He’s a humanitarian, a true Rotarian… it was fate, I guess.”

Rosario received his kidney transplant on May 14, 2012, one day prior to his birthday.

He is one of the lucky ones.

More than 350 people in B.C. are on the waitlist for a kidney transplant, and the median wait time for a donated kidney is 4.8 years, but more than 50 per cent of dialysis patients do not survive past four years.

From the moment they met, he and Dudley have been close friends.

“I don’t even thank him anymore because he knows,” Rosario said. “We have a great rapport. He’s adopted me as family and I’ve certainly adopted him and everyone in his family, over there.”

Life before the transplant was grim. Rosario’s kidneys were operating at low percentages so he was extremely fatigued, every day.

He slept half the day, and was light sensitive. Even a task as simple as taking out a screw above his head, he’d have to get someone to do that for him because he couldn’t hold his arms up.

The transplant gave Rosario a new lease on life. The entrepreneur is able to go to work every day and manages to squeeze cardio workouts into his schedule.

“My life isn’t so strained anymore,” Rosario said. “I’m happy, I appreciate the little things, every day, now.”

Rosario has three kidneys in his body and two of them are not functioning. [Read more]

From Connecticut News12

Westport woman receives kidney from former teacher

Kindergarten teacher Jen Giannino gave a former student one of her kidneys.

Tuesday marks three months since a Westport woman received a life-saving gift from her former teacher.

Sammy Brownlow, 21, says she was born with a number of congenital issues, polycystic kidney disease among them. She knew that a transplant would eventually be needed, but her parents were not viable donors.

Jen Giannino, Brownlow's former kindergarten teacher, stayed in touch with her.

Seeking EU Approval for Tolvaptan; Bi-Partisan Legisation for National Kidney Month

PKD Treatment

From Pharma Times

Three new drugs put forward for EU approval

Novartis’ lung cancer treatment Zykadia (ceritinib), Otsuka’s kidney disease drug Jinarc (tolvaptan) and Amgen’s neutropenia therapy Ristempa (pegfilgrastim) have taken a giant step closer to entering the European market after regulatory advisors endorsed their approval...

The CHMP is also recommending approval of Jinarc (tolvaptan) to slow the progression of cyst development and renal insufficiency in certain patients with autosomal dominant polycystic kidney disease (ADPKD).

Because of the potential for liver toxicity, a pharmacovigilance plan for Jinarc will be implemented on approval, and it is also proposed that treatment be initiated and monitored under the supervision of physicians with expertise in managing ADPKD and a full understanding of the risks of this therapy.




From FDA.gov

FDA authorizes use of first device to treat patients with dialysis-related amyloidosis


The U.S. Food and Drug Administration today authorized use of Lixelle Beta 2-microglobulin Apheresis Column, the first device to treat dialysis-related amyloidosis (DRA).

Dialysis-related amyloidosis is a chronic, progressive condition caused by the buildup in the body of a protein called beta 2-microglobulin. Dialysis-related amyloidosis is a complication of kidney failure. As beta 2-microglobulin builds up in the blood, deposits of the protein can form in the bones, joints and tendons causing painful and stiff joints, bone cysts that can lead to bone fractures, and torn tendons and ligaments. Beta 2-microglobulin deposits can also affect the digestive tract and organs, such as the heart and lungs.

Dialysis-related amyloidosis most often occurs in patients with kidney failure, especially adults older than 60, who have been on hemodialysis for more than five years.

The Lixelle Column works by removing beta 2-microglobin from the blood. It contains porous cellulose beads specifically designed to bind to beta 2-microglobulin as the patient’s blood passes over the beads. The device is used in conjunction with hemodialysis, a treatment where blood circulates outside the body through a special filter that removes waste products and extra fluid. The clean blood is returned to the body. When the Lixelle Column is used, the blood passes through the Lixelle Column before it enters the dialysis filter.

The device may help patients who have developed symptoms related to DRA and may be especially useful for those patients who may not have access to extended dialysis therapies or who may not be eligible for a kidney transplant. [Read more]

From Santa Monica Daily Press, California, By Enrique Rivero

UCLA plans kidney health fair in Santa Monica

March is National Kidney Month and to mark it, Dr. Anjay Rastogi, UCLA Kidney and Hypertension specialist, and his UCLA team will hold a Kidney Health Fair on March 8 in Santa Monica to raise awareness of kidney health and associated co-morbid conditions such as high blood pressure and diabetes.

The event will focus on integrative medicine. It will feature interactive stations for kidney education, diet and healthy cooking, exercise, meditation and yoga, upcoming clinical trials and research, polycystic kidney disease, high blood pressure, Fabry disease, dialysis, and much more. Transplant coordinators, nephrologists and living kidney donors will be available to address questions and concerns related to transplantation and encourage organ donation and its benefit to society.

Two booths will be staffed by Spanish-speaking physicians and health care workers, who will provide BMI testing and other health resources. Children’s games and crafts, music and children’s dance performances will accentuate this festive event that is expected to draw nearly 1,000 guests.

The event will be held from 9 a.m. to noon at Santa Monica Beach Park #1 (Ocean Park Boulevard and Barnard Way).

Kidney Policies

From Roll Call, By Rep. Tom Marino
Celebrate National Kidney Month by Supporting Bipartisan Kidney Care Legislation


Approximately 50 years ago, kidney failure was a death sentence. Even considering that fact is unnerving. Today, more than 600,000 Americans are living with kidney failure — and a large majority of those lives are sustained by life-saving dialysis treatments. That’s hundreds of thousands of lives that would have been lost and hundreds of thousands of families that would have been broken apart before the invention and expansion of dialysis treatment.

In 1972, Congress developed the Medicare End-Stage Renal Disease benefit. In doing so, Congress ensured that regardless of age or income, any American would have access to life-saving dialysis care. That was the turning point in kidney care.

Now it’s time for this Congress to take the next step for those living with kidney disease by modernizing policies, improving care coordination, expanding patient choice and intensifying research. I am confident the Chronic Kidney Disease Improvement in Research and Treatment Act (HR 1130) can be instrumental in accomplishing these goals, and I am very proud to be the bill’s lead sponsor — but even more honored to have my friend and colleague Democrat John Lewis of Georgia standing by me in this effort as well.

The legislation is built on three primary tenets. First, for individuals living with chronic diseases, especially when those diseases are complicated by multiple co-morbid conditions, coordinated care is key to improving outcomes and lowering health care costs. Second, increased research can lead to a deeper understanding of kidney disease prevention and ultimately to significant innovations in treatment. Lastly, stability in the Medicare program is central to an ESRD program that ensures quality and produces optimal results.

Studies show promoting collaboration between primary physicians and specialists treating the same patients through coordinated care improves patient outcomes and reduces costs across the health delivery system. The coordinated care model is especially important for kidney dialysis patients — many of whom are living with multiple chronic conditions and have to work with multiple health care providers and health care settings — to improve the care experience for the patient, improve outcomes, and capture savings and efficiencies.

To spur the creation of a workable coordinated care program for dialysis patients, HR 1130 would establish a voluntary program to incentivize nephrologists and dialysis facilities to better align medical treatment. [Read more]

From Virtual Press Office

Nation's Kidney Community Lauds Idaho's Senator Mike Crapo, Lead Co-sponsor of Bi-Partisan Legislation to Improve Care Coordination, Expand Choice, and Enhance Research for Millions with Kidney Disease, Kidney Failure

Complementary Senate and House bills introduced would improve lives of individuals with kidney disease

Kidney Care Partners (KCP), the nation's largest kidney advocacy coalition, today praised Senator Mike Crapo (R-ID) for co-sponsoring the "The Chronic Kidney Disease Improvement in Research and Treatment Act" (S. 598), a bipartisan Senate bill that improves care coordination, expands access, and promotes research to benefit more than 636,000 Americans living with kidney failure, which is known as end-stage renal disease (ESRD). A complementary bill by the same name (H.R. 1130) was simultaneously introduced in the House.

Currently, 31 million Americans have some form of kidney disease and are at risk of developing kidney failure absent some form of disease management education or preventive care. Each year, more than 100,000 Americans are diagnosed with ESRD – the final stage of CKD – and therefore require a kidney transplant or dialysis. Due to the limited number of kidneys available for transplantation, 430,000 Americans now rely on life-sustaining dialysis care to survive. In general, patients must undergo dialysis three times a week for several hours per treatment. Under current law, dialysis treatments are covered by the Medicare program, regardless of the individual's age.

Advocates have long stressed that federal policies are needed to provide patient choice and to ensure access to life-sustaining dialysis, to increase research into CKD, and to create stability in Medicare's crucial ESRD program. Ultimately, the legislation introduced by Representatives Tom Marino (R-PA), John Lewis (D-GA) and Peter Roskam (R-IL) in the House and Senators Ben Cardin (D-MD), Mike Crapo (R-ID) and Bill Nelson (D-FL) in the Senate would improve patient outcomes through care coordination, expand access to traditionally underserved patient populations, and set the U.S. on the path towards a cure through efficiently managed and coordinated biomedical research.

"This bill is absolutely vital as it provides a clear blueprint for the future of the ESRD program," said Dr. Ed Jones, Chairman of Kidney Care Partners and a practicing nephrologist. "By supporting care coordination, greater patient choice, coordinated research programs, and economic stability, this bill would improve the delivery of care for millions of Americans living with kidney disease. The kidney care community endorses this bill and applauds the leadership of Senator Crapo on this important health care issue."

Specifically, The Chronic Kidney Disease Improvement in Research and Treatment Act would:

(1) Improve the coordination of care: The legislation would expand care options for patients by, among other things, allowing individuals diagnosed with kidney failure to enroll in the Medicare Advantage program. Under current law, individuals who develop kidney failure are not permitted to enroll in Medicare Advantage (MA) plans despite the Medicare Payment Advisory Commission's recommendation to eliminate the restriction in order to provide ESRD beneficiaries with the same freedom of choice and access to improved coordinated services as other Medicare-enrolled individuals. Therefore, the legislation would allow ESRD patients to enroll in – and reap the benefits of – MA plans. The bill also would reauthorize on a permanent basis the Special Needs Plan (SNP) for patients with kidney failure who need additional care attention, as well as extend the length of time beneficiaries may choose to maintain their existing insurance coverage. Importantly, the legislation looks to the future by establishing a voluntary coordinated care program. The coordinated care program would allow physicians and dialysis facilities to work together to improve the coordination of care and reduce costly hospitalizations and rehospitalizations.

(2) Promote patient access and choice: The legislation would expand patient access to kidney disease education programs and home dialysis treatment options through telemedicine, as well as create incentives for nephrologists and other dialysis health care professionals to work in underserved rural or urban areas. The bills also would establish renal dialysis facilities as a cost-effective alternative to hospital outpatient departments for individuals diagnosed with acute kidney injury.

(3) Expand research and enhance coordination: The legislation would identify gaps in research and improve the coordination of federal research efforts. Specifically, the bills would require the GAO to assess the adequacy of federal funding for CKD research relative to the expenditures for CKD care and identify gaps in research. Additionally, the bills would require improved coordination among the various federal agencies conducting CKD research by requiring the development of a strategic plan. Third, the bills would require the Secretary to conduct a study to better understand the progression of kidney disease and treatment of kidney failure in minority populations.  [Read more]




Gift of Life

From The Courier Mail, Queensland, Australia, by HALL, PETER, NEWS LIMITED

This couple share everything, even their kidneys

Sara Western, 32, has donated her kidney to husband Brenden, 43, as his were fast deteriorating due to an incurable condition. The coupple are with children Layla, 8 months, and Kane, 3. Pics Tara Croser

Sara Western, 32, has given her 43-year-old husband Brenden the gift of life.

She donated one of her kidneys when his were fast deteriorating because of an incurable disorder.

The Sunshine Coast couple, parents to Kane, 3, and Layla, eight months, had operations almost a month ago and are recovering well.

They have always been an inspiring team, having won three Australian championships and a world title as part of the same Mooloolaba surfboat crew, Sara as a rower and Brenden as sweep and coach.

Sara said her decision to donate was simple.

“To be honest, it was a no-brainer for me. If you love someone that’s just what you do,’’ she said.

“The alternative was having a husband and father of two young children who had no quality of life while on dialysis, possibly for years, while he waited on the transplant list.’’

Brenden said he owed his life to his wife and could not be more grateful. “You just feel so appreciative. I would do anything for Sara … she is amazing,’’ he said.

“She was sitting with me at a specialist appointment when she surprised both of us by asking ‘what’s the procedure if I give a kidney?’ We almost fell off our chairs.’’

Brenden said the couple underwent tests to ensure their compatibility. The process took about 12 months and was completed just in time for him as his condition was worsening. [Read more]

PKD Research

From The New England Journal of Medicine 

Blood Pressure in Early Autosomal Dominant Polycystic Kidney Disease


To the Editor:


In the Halt Progression of Polycystic Kidney Disease (HALT-PKD) study, Schrier et al. (Dec. 11 issue)1 randomly assigned patients with early-stage autosomal dominant polycystic kidney disease (ADPKD) to either a standard blood-pressure target or a low blood-pressure target. The low blood-pressure target was associated with a slower increase in total kidney volume, but not with an overall change in the estimated glomerular filtration rate (GFR). The latter finding might be viewed as being disappointing. However, we would caution that the institution of strict blood-pressure control will result in an acute, hemodynamic, but reversible decrease in the estimated GFR.

A recent scientific workshop sponsored by the U.S. National Kidney Foundation and the Food and Drug Administration concluded that this acute effect is not indicative of irreversible loss of nephrons.2 Accordingly, rather than using the baseline estimated GFR, we would suggest comparing only on-treatment slopes of the estimated GFR. Such an analysis does show a benefit associated with the low blood-pressure target (P=0.05).1 Since a decrease in the estimated GFR is a late phenomenon in many patients with ADPKD,3 a subgroup analysis of on-treatment estimated GFR slopes with the use of forest plots would be of interest, since it might hint at whether certain subgroups of patients with early-stage disease might benefit from a low blood-pressure target.


A. Lianne Messchendorp, M.D.
Ron T. Gansevoort, M.D., Ph.D.
University Medical Center Groningen, Groningen, the Netherlands
r.t.gansevoort@umcg.nl

No potential conflict of interest relevant to this letter was reported.
3 References

To the Editor:


Schrier and colleagues evaluated aggressive blood-pressure control with the use of dual blockade of the renin–angiotensin system in patients with ADPKD. The study also has relevance for physicians who initiated the use of such dual blockade in patients after it was reported that such treatment was more effective than single blockade of the renin–angiotensin–aldosterone system in reducing proteinuria.1

Subsequent studies such as the Ongoing Telmisartan Alone and in Combination with Ramipril Global Endpoint Trial (ONTARGET) and the Aliskiren Trial in Type 2 Diabetes Using Cardiorenal Endpoints (ALTITUDE) showed that dual blockade was not effective in reducing mortality or morbidity from cardiovascular disease but rather was associated with more severe adverse events such as hyperkalemia, hypotension, and acute kidney injury.2,3 A recent meta-analysis therefore concluded that dual therapy should not be used.4

However, those studies included patients with a high preexisting risk of vascular events and death because of diabetes, cardiovascular disease, heart failure, or old age. In contrast, the study by Schrier et al. clearly showed that in a relatively young population (15 to 49 years of age) without vascular disease, dual blockade was used relatively safely and that lowering blood pressure to values of 110/75 mm Hg did not result in adverse effects. Thus, physicians who have successfully used dual blockade to reduce proteinuria in their patients may consider the continued use of such therapy in these patients.


Jack F. Wetzels, M.D., Ph.D.
Radboud University Medical Center, Nijmegen, the Netherlands
jack.wetzels@radboudumc.nl

No potential conflict of interest relevant to this letter was reported.
4 References

To the Editor:


The HALT-PKD trial showed that in the low-blood-pressure group, as compared with the standard-blood-pressure group, the annual increase in total kidney volume was significantly less (5.6% vs. 6.6% increase per year). However, there was no benefit with regard to preservation of renal function. Blood-pressure goals were ambitious (95/60 to 110/75 mm Hg in the low-blood-pressure-group and 120/70 to 130/80 mm Hg in the standard-blood-pressure group)1 in these young patients with ADPKD (mean age, 36.6 to 48.7 years). Current treatment guidelines of the European and U.S. Eighth Joint National Committee on Prevention, Detection, Evaluation, and Treatment of High Blood Pressure do not support the use of such low blood-pressure targets in patients with nonproteinuric or even proteinuric chronic kidney disease, but instead they suggest blood-pressure targets lower than 140/90 mm Hg in all patients. The European Society of Cardiology guidelines support blood-pressure targets lower than 130 mm Hg in patients with chronic kidney disease and overt proteinuria.2,3 Blood-pressure goals that are as low as those defined by the HALT-PKD trial investigators may be dangerous in elderly patients with chronic kidney disease, presumably because of the high burden of prevalent cardiovascular disease in these patients. Similarly, in a very large cohort study involving 651,749 U.S. veterans with chronic kidney disease,4 the optimal blood-pressure range was reported to be 130 to 149 mm Hg systolic pressure and 70 to 89 mm Hg diastolic pressure, and mortality increased markedly with blood-pressure levels lower than 120/80 mm Hg.


Urs Benck, M.D.
Bernd Krüger, M.D.
Wilhelm H. Schmitt, M.D.
University Medical Center Mannheim, Mannheim, Germany
urs.benck@umm.de

No potential conflict of interest relevant to this letter was reported.
4 References


The author replies: Messchendorp and Gansevoort raise the issue of using only on-treatment estimated GFR slopes to evaluate the benefit of therapy. In our study, patients in the low-blood-pressure group, as compared with patients in the standard-blood-pressure group, had a slower increase in total kidney volume (P=0.006), a greater reduction in the left-ventricular-mass index (P<0.001), and reduced urinary albumin excretion (P<0.001). We also agree that the on-treatment slope of the estimated GFR shows a benefit for the low blood-pressure group (P=0.05).

In patients with chronic kidney disease such as ADPKD, the degree of proteinuria is a risk factor for cardiovascular complications and a decrease in kidney function. Thus, Wetzels's point is valid in that dual renin–angiotensin blockade may be indicated if it is shown to lower urinary protein excretion significantly more than monotherapy and is safe. Such may be the case in younger patients with ADPKD.

We agree with Benck et al. that aiming for blood pressure of less than 120/80 mm Hg may not be advisable in patients with chronic kidney disease, particularly in elderly patients. However, among patients with chronic kidney disease who have type 2 diabetes, those with blood pressure lower than 130/80 mm Hg have fewer complications and longer survival than those with blood pressure lower than 140/90 mm Hg.1


Robert W. Schrier, M.D.
University of Colorado School of Medicine, Aurora, CO
robert.schrier@ucdenver.edu

Since publication of his article, the author reports no further potential conflict of interest.
1 Reference

From CBC: Chicago Biomedical Consortium, Northwestern University Department of Pharmacology

Polycystic Kidney Disease (PKD) Ion Channels of Primary Cilia

DATE: March 2, 2015
TIME: 4:00 PM - 5:00 PM
SPEAKER: Paul G. DeCaen, Ph.D., HHMI/Harvard Medical School
LOCATION: Ward Building, Ward Conference Room 5-230, 303 E. Chicago Avenue, Chicago, IL 60611, Northwestern University (Chicago Campus)

Description
The Department of Pharmacology eagerly invites you to attend an upcoming seminar, to be presented by Paul G. DeCaen, Ph.D. Dr. DeCaen is presently a Postdoctoral Fellow from the Howard Hughes Medical Institute, Department of Cardiology, Boston Children's Hospital, as well as Department of Neurobiology, Harvard Medical School.

The following, is an overview of this seminar, as described by Dr. DeCaen:

“Polycystic kidney disease proteins (PKDs) are members of the Transient receptor potential (TRP) family of Ca2+-permeant ion channels that populate the membrane of primary cilia. A primary cilium is a solitary, non-motile protuberance from apical side of polarized cells. To advance our understanding of cilia PKD channels, we made cilia-specific fluorophores which enabled electrophysiological recordings of ion channels in the cilia membrane and which detect calcium changes in the ciliary compartment. These results (published last year) genetically identified a heteromeric PKD channel (PKD1-L1 and PKD2-L1) from the cilia of several non-renal tissues and established a high resting calcium [700 nM] concentration within this organelle. We are now poised to demine the why PKD2 mutations can cause Autosomal Dominant Polycystic Kidney Disease and their function in the collecting duct."

CONTACT: Kristina Lynn Ballard 312-503-4892
kristina.ballard@northwestern.edu

Tolvaptan Approved as PKD Treatment in Canada; Crowd Funding to the Rescue

PKD Treatment

From NewsWire.ca, News Release

First-ever treatment approved in Canada for adults living with ADPKD, a life-threatening kidney disease

JINARCTM slows the progression of kidney enlargement in patients with autosomal dominant polycystic kidney disease (ADPKD), which should help protect the kidneys from damage and failure

JINARCTM (tolvaptan) is the first pharmaceutical treatment available in Canada for patients with ADPKD. JINARC™ was discovered in Japan by Otsuka Pharmaceutical and was first approved there for the treatment of ADPKD in 2014.

The Health Canada approval of JINARC™ is based on the results of the pivotal Phase 3 randomized, double-blind and placebo-controlled TEMPO 3:4 Trial, the largest study conducted to date in adults with ADPKD.1

ADPKD is a chronic and progressive genetic disease, which causes cyst growth in the kidneys, leading to an increase in total kidney volume, resulting in complications that include chronic and acute pain, hypertension and kidney failure.2

ADPKD impacts approximately 35,000 Canadians3 and affects people regardless of gender, age, race or ethnic origin.4

TOKYO, Feb. 26, 2015 /CNW/ - Otsuka Pharmaceutical Co., Ltd. and its affiliate Otsuka Canada Pharmaceutical Inc. announce that Health Canada has approved JINARC™ (tolvaptan) as the first pharmaceutical agent for the treatment of autosomal dominant polycystic kidney disease (ADPKD). JINARC™ is indicated to slow the progression of kidney enlargement by targeting the underlying pathophysiology of the disease.

The Health Canada approval of JINARC™ is based on the results of the pivotal Phase 3 randomized, double-blind and placebo-controlled TEMPO 3:4 Trial, which is the largest, Phase 3 study conducted to date in adults with ADPKD.5

Dr. Sanjay Pandeya, a nephrologist in the Toronto area commented, "Many patients with ADPKD suffer severe pain as the kidneys develop a larger cyst burden. Other organs may also be impacted and kidney failure is a reality in many patients. This can significantly affect overall health and quality of life. The approval of JINARC™ marks a significant advancement in the previously bleak landscape of therapeutics for ADPKD – patients now have an option that can reduce the development of cyst formation, improve symptom control, and potentially delay the progression of this serious disease."

JINARC™ was developed over a period of 26 years through the persevering efforts of researchers in Otsuka's Japanese pharmaceutical research center. Upon discovering a cell signaling pathway that causes renal cysts to proliferate and enlarge,6 Otsuka launched an effort in 2004 to develop a drug for the disease in conjunction with the world's leading ADPKD medical specialists.

ADPKD impacts approximately 35,000 Canadians7 and affects people regardless of gender, age, race or ethnic origin.8 Approximately, half of polycystic kidney disease (PKD) patients reach end stage renal disease (ESRD) and require renal replacement therapy in the form of dialysis or a kidney transplant by age 54.9

"ADPKD is one of the most common, life-threatening, genetic diseases and yet until now, patients have been without a treatment option for the progression of the disease," says Jeff Robertson, Executive Director, PKD Foundation ofCanada. "With a mother and grandmother impacted by ADPKD, our family knows just how life-changing a treatment like this will be for the PKD community."

About the TEMPO 3:4 Trial

The TEMPO 3:4 Trial was conducted over three years in a total of 1,445 adult patients with early, rapidly progressing ADPKD. In order to select patients who might best benefit from the effects of JINARC™, clinical trials evaluated ADPKD patients having enlarged kidneys and relatively preserved renal function at the time of initiation of treatment. In the TEMPO 3:4 Trial, JINARC™ achieved its primary endpoint, demonstrating a statistically significant reduction of almost half (49%) the annual increase in total kidney volume (TKV) versus placebo (p<0.001). Furthermore, the study showed JINARC™ significantly reduced the decline in kidney function by 30% versus placebo (p<0.001).10

The most commonly reported adverse reactions, consistent with the pharmacologic activity of JINARC™ are thirst, polyuria (excessive production of urine), nocturia (waking up during the night in order to urinate), and pollakiuria (frequent daytime urination) occurring in approximately 55%, 38%, 29% and 23% of patients, respectively. In a small percentage of patients receiving JINARC™ (4%) there were adverse events potentially associated with liver injury. As there are no predictive factors as to which patients receiving JINARC™ will experience liver injury, all patients on JINARC™ will be monitored. To help mitigate the risk of liver injury, blood testing for liver enzymes is required prior to initiation of JINARC™, then continuing monthly for 18 months, every 3 months for the next 12 months, and then every 3 to 6 months thereafter during treatment. JINARC™ will only be available through a hepatic safety monitoring and distribution program administrated by Otsuka Canada Pharmaceutical Inc. and managed in conjunction with patients' treating physicians.11

About JINARC™ (tolvaptan)

JINARC™ is a selective vasopressin V2-receptor antagonist and is indicated to slow the progression of kidney enlargement in patients with ADPKD. Vasopressin is a hormone normally responsible for maintaining water balance by stimulating water re-absorption in the kidney. Vasopressin levels are higher than normal in people with ADPKD. The high level of vasopressin promotes cyst growth, which increases the size of the kidneys.12 JINARC™ works by blocking the effects of vasopressin, which can slow down the rate at which cysts – and therefore kidneys – grow. This should help protect kidneys from damage and failure.13 JINARC™, a twice-daily, oral medication,14 is expected to become available to eligible patients in Canada in May 2015. [Read more]

Paying for PKD

From WUSA, Channel (, Washington DC, by Stephanie Wilson and Lesli Foster

Crowdfunding to save DC woman's life

Four days a week Tiffanie Woodland inserts a lifeline into her body. The 32-year-old has battled polycystic kidney disease since birth.

"I've had a lot of hospitalizations because of my kidneys, so it's been tough," she says.

"Every pain she has I feel it. and, to see her now on this dialysis machine is really tearing me up," says her mother Michelle Brown.

These three hour sessions could be coming to an end. Tiffanie just found a perfect match for a new kidney. But, she doesn't have $8,000 to cover the medical fees.

She turned to GoFundMe with a plea.

It's hard to know exactly how many crowdfunding sites are on the Internet. Kathy Kristof with Kiplinger's Personal Finance says if you've got a cause or a want, there's likely something to meet your need.

"It's surprising how the community rises to the cause, and sometimes over funds what you've asked for," she says.

Kristof says most sites police themselves for fraud to ensure those donated dollars minus a fee, sometimes as high as nine percent, make it to their intended beneficiary.

Tiffanie's fundraising page has garnered a little over $2,000. She hopes people are moved by her story. And someday soon, she'll get that new working kidney and be able to silence the machine that keeps her alive.

"I just want to be able to move on and enjoy and live my life while I'm still young," she says.

The donations you make on most crowfunding sites are not tax deductible. So, before you contribute to one of these campaigns, evaluate whether your money would go further at an actual charity.

Organ Transplant: Knowledge is Key

From PR.com, Press Release

Knowledge is Key to Receiving an Organ Transplant in Canada

On March 1st, Hamiltonians Jessica Gold and Arie Pekar will share true stories of tribulation and triumph on their personal journeys to getting the gift of life.

Hamilton, Canada, February 25, 2015 --(PR.com)-- Jessica Gold's daughter, Alexandria, was only 5 months old when she received a life-saving liver transplant in 2010, thanks to a deceased donor. Jessica has chosen to learn as much as possible about organ and tissue donation, and started a volunteer awareness group to help educate the community of the importance of organ and tissue donation.

“Education is key because not everyone has had a personal encounter with organ donation,” says Gold. “Should the opportunity arise for them or their loved one, I want to make sure they have all the information they need to make the right decision for themselves. Not enough people realize how easy it is to register.”

Arie Pekar also believes research and advocacy is necessary.

“Kidney disease is not a disease for the passive patient,” explains Pekar. “When it comes to organ transplantation, people need to know they have options. Considering other hospitals better suited to meet your choice of treatment does not come naturally to Canadians. We are led to believe treatment options are standardized and they are not.”

Pekar was on dialysis and had recently become a father when a long-time friend gave him the gift of life. With a history of polycystic kidney disease (PKD) in his family, he knows the importance of organ and tissue donation, and how it greatly improved his quality of life and that of his family.

He’ll be sharing the ups and downs en route to his successful kidney transplant for the first time publicly in Classroom B (T2208), in the Juravinski Innovation Tower, St. Joseph's on Charlton Avenue East, after Jessica Gold.

This presentation starting at 2pm is part of an ongoing series of two-hour informational support meetings hosted by the Hamilton Chapter of the PKD Foundation of Canada. They are open to the public free of charge and the venue is wheelchair accessible. Registration is not required. Local street parking (free) and hospital parking (payment required) is available.

For more information about polycystic kidney disease, visit the PKD Foundation of Canada website www.endpkd.ca or call 1-877-410-1741.