Sunday, December 27, 2015

NIH Budget; Share the Season; Island & City Gifts; UNOS Rules Working

Budgeting for PKD Research

From Fox News, Opinion By Newt Gingrich, Bill Brazell



Imagine spending four hours a day, three days a week tethered to a dialysis machine just to survive. For many of the more than 20 million Americans—one out of every 10 adults—who suffer from chronic kidney disease (CKD), that life isn’t theoretical. It’s their daily reality.

But all taxpayers, not just those with kidney problems, have a reason to support a drastic increase in government funding for research: We, the taxpayers, are spending tens of billions each year to treat patients with kidney disease—the nation’s ninth-leading cause of death—and yet we are investing very little in trying to cure it.

Every year, the federal government spends $80 billion through Medicare alone to treat CKD (and the real cost to taxpayers is much higher when we count spending through dozens of other programs), but the National Institutes of Health are able to devote less than 0.8% of that amount to research to prevent or cure it.

To make matters worse, the costs of treating CKD are increasing rapidly. Between 2008 and 2012, Medicare spending on CKD patients increased at a rate almost five times as fast as the rest of the program and now makes up one-fifth of all Medicare Parts A and B expenditures. Costs increase as patients progress through the disease, with a dialysis patient requiring nearly $90,000 per year. This makes end stage renal disease one of the most expensive chronic diseases.

Put another way, every patient kept off of dialysis saves taxpayers $250,000.

If we fail to solve this problem, then by 2030, one out of every six American adults will have CKD.

Take for example the particular form of CKD that one of us (Bill) inherited from his father. The NIH spends $41 million on polycystic kidney disease (PKD) research per year. Having sent 5,000 patients to the transplant list, PKD costs taxpayers 50 times more than that— $2 billion—annually via Medicaid and Medicare alone.

Of course, this total does not include the lost productivity of workers forced to retire early. Only 20 percent of the people on dialysis of working age have jobs. Nor does it account for the toll of the disease on caretakers, nor the devastation that too many early deaths wreak on families.

Bill’s cousin Michael, a successful sales executive suffering from PKD, was torn from his family at the age of 35, leaving two young children to grow up without a father.

A treatment to slow the progression of PKD may now be close at hand. Thanks to research funded in part by the NIH and in part by the PKD Foundation, Bill is taking an experimental drug already approved for use in the European Union, the U.K., Japan and Canada. With just a little more spent on PKD research, even better treatments could soon follow, saving billions for years to come.

PKD is just one of more than 200 costly kidney diseases. For each, research is severely underfunded. An additional $1.5 billion over ten years could significantly reduce the $80 billion taxpayers are paying each year through Medicare to manage them. Simply delaying the onset of such illnesses by a few years would save American taxpayers billions of dollars annually—forever.

It is hard to imagine a smarter, and more compassionate, fiscal policy.

Kidney disease, of course, represents just one of many debilitating conditions for which the NIH funds crucial basic research. Heart disease, cancer, stroke, arthritis, Alzheimer’s—swifter progress toward cures would benefit all of those who suffer from these terrible diseases, to say nothing of taxpayers at large.

We have proposed doubling the NIH budget to $60 billion and reforming it to reduce bureaucracy, focus resources on basic research for the most expensive and prevalent health problems, and give the director more flexibility to redirect funds where they are urgently needed.

Leaders in both the House and Senate have taken important steps in this direction. The new budget deal passed by the House would boost NIH’s budget by $2 billion, the largest increase the NIH has received in 12 years. That’s a great first step.

Moreover, the 21st Century Cures Act, which recently passed the House 344-77, is a bipartisan effort to promote medical discoveries using the newest technology. [Read more]




Helping Those with PKD

From The Wichita Eagle, Wichita, Kansas, BY RICK PLUMLEE

Share the Season: Single mom with kidney disease can only work part time

Share the Season is an annual campaign that offers one-time aid to people affected by unforeseen hardships. The people are not identified to protect their privacy.

A painful kidney ailment diagnosed in July has turned this 28-year-old single mom’s life upside down.

But Share the Season recently was able to help her get back on top of her bills, plus provide enough that she can buy a “present or two” for her two children.

“A lot of stress release,” she said of the assistance.

Not much had gone well for the certified medical assistant since she was diagnosed with polycystic kidney disease, which causes cysts to develop on kidneys.

“It’s not curable, just manageable,” she said.

The pain has forced her to work only on “OK days,” she said. “There aren’t any good days.”

Working part time at best has been difficult, emotionally as well as financially.

“I have always been a hard worker,” she said. “I’ve worked full time since I was 16. This is kind of depressing.”

With her income greatly reduced, she and her children, ages 10 and 8, moved in with her parents in August.

But days before she was to move, her apartment was broken into and everything was stolen.

“I mean everything,” she said. “They took furniture, clothes, the children’s stuff. They even took our food. The apartment was trashed.”

Her kidney disease, which right now affects only her left kidney, is being treated with pain medication. But after the first of the year, she hopes to see another doctor and begin managing the ailment better.

“Then I think I can go back to working full time,” she said. “This whole working a little isn’t me.”

Share the Season is a joint project of The Eagle, the Wichita Community Foundation and the Salvation Army.

So far this season, it has raised $173,079.

Send contributions to Share the Season at the Wichita Community Foundation, 301 N. Main, Suite 100, Wichita, KS 67202. To donate online, go to www.sharetheseason.org. If you have questions about donating, call 316-264-4880.



Kidney Transplant Rules

From The Washington Times, By LAURAN NEERGAARD, AP


In this photo provided by the University of Virginia Health System, taken Dec. 9, 2015, Marshall Jones, right, laughs with Dr. John Barcia in the Battle Building at the University of Virginia Children's Hospital in Charlottesville, Va. A shake-up of the nation's kidney transplant system is getting more organs to patients once thought nearly impossible to match, according to early tracking of the new rules. (Coe Sweet/UVA Health System via AP) MANDATORY CREDIT

In this photo provided by the University of Virginia Health System, taken Dec. 9, 2015, Marshall Jones, right, laughs with Dr. John Barcia in the Battle Building at the University of Virginia Children’s Hospital in Charlottesville, Va.

A shake-up of the nation’s kidney transplant system means more organs are getting to patients once thought nearly impossible to match, according to early tracking of the new rules.

It’s been a year since the United Network for Organ Sharing changed rules for the transplant waiting list, aiming to decrease disparities and squeeze the most benefit from a scarce resource: kidneys from deceased donors. Now data from UNOS shows that the changes are helping certain patients, including giving those expected to live the longest a better shot at the fittest kidneys.


The hope is to “really level the playing field,” said Dr. Mark Aeder, a transplant surgeon at University Hospitals Case Medical Center in Cleveland who is chairman of the UNOS’ kidney committee.

In Abingdon, Virginia, 8-year-old Marshall Jones was one of the lucky first recipients. A birth defect severely damaged his kidneys and a failed transplant when he was younger left his immune system abnormally primed to reject kidneys from 99 percent of donors.

Then last January, after four years of searching, organ officials found a possible match, hours away by plane but available under the new policy - and it worked.

“We don’t use the word lightly, but this was really a miracle kidney for him,” said Dr. Victoria Norwood, Marshall’s doctor and the pediatric nephrology chief at the University of Virginia.

There’s a huge gap between who needs a new kidney and who gets one. More than 101,000 people are on the national waiting list, while only about 17,000 kidney transplants are performed each year. Roughly 11,000 of them are with kidneys donated from someone who just died; the rest occur when a patient is able to find a living donor.

The wait for a deceased-donor kidney varies widely around the country, and in 2014, more than 4,500 people died before their turn.

The new kidney allocation system can’t alleviate the overall organ shortage. “The only thing to shorten total wait time for everybody is more organ donors,” Aeder said.

Instead, the policy altered how deceased-donor kidneys are distributed, shifting priorities so that how long you’ve been on the waiting list isn’t the main factor. Among the changes:

-fewer transplants are occurring in which the kidney is predicted to outlive the recipient. Now, the kidneys expected to last the longest - as calculated by donor age and medical history - are offered first to the patients expected to survive the longest. That’s called longevity matching. Before the change, 14 percent of the longest-lasting kidneys went to recipients age 65 or older. That dropped to 5 percent as the new policy kicked in, according to UNOS monitoring. [Read more]




Gift of Life

From South Philly Review, By Bill Chenevert

Giving the biggest gift of all


Mike Farulo is one of nearly 5,000 area residents waiting for a kidney.  Photo by Bill Chenevert


Mike Farulo often goes to bed thinking “Is tonight going to be the night? Any day now my life could change for the better.” Farulo suffers from Polycystic Kidney Disease (PKD), a genetic disease that fills one’s kidneys with cysts and zaps their functionality. Dialysis and donations-turned-transplants are the only solution.

It’s a tiring and frustrating daily existence and Farulo, a resident of Broad and Ellsworth streets, has an impressively balanced perspective on it all.

“I knew from a kid that I might have to deal with it when I got older” – his mother had PKD, too, and went through 22 years of dialysis and two donations. “My mom had it, my grandmother had it, my uncle, my mom’s brother had it,” Farulo said; it’s genetic and hereditary.

Farulo works with Gift of Life, the regional donor organization that covers eastern Pennsylvania, southern New Jersey and Delaware. He volunteers by driving patients, donors and family members to appointments in conjunction with the Gift of Life Family House in Northern Liberties.

“Gift of Life oversees 40,000 organ transplants a year: kidneys, hearts, lungs, livers, pancreas, intestines, all the internal organs,” Howard Nathan, president and CEO of Gift of Life, explained. “In the U.S. there are 122,000 people waiting for an organ – 101,000 are waiting for kidneys. There are 444,000 people on dialysis in the U.S. Regionally, 5,900 people are waiting [for an organ], of which about 4,900 are patients waiting for kidneys.”

Farulo’s childhood was rooted in Elizabeth and Somerset, N.J. He came to Philadelphia at 18 to go to LaSalle University but ended up getting associate degrees from the Art Institute of Philadelphia and the Community College of Philadelphia. He’s sustained himself in the service industry and had a great run of working on Linblad Expeditions cruise boats, which travel the world. He bartended and managed a 65-passenger cruise boat for about 10 years and had to give it up for dialysis. Now he works a few hours a week at Pumpkin, 1713 South St., simply to engage with life outside dialysis and Gift of Life patients.

“The littlest bit of exertion and I start getting very fatigued,” he explained. “I can do some light bicycle riding. I can’t work full-time anymore. I can’t have soup or ice cream. I can’t have beer or alcohol.”

He can ingest up to only 32 ounces of liquid per day. And on days like last Monday, his dialysis wasn’t enough and he had to throw in a fourth session to remove his blood of all liquids.

Nathan explained that the Center for Disease Control establishes criteria for kidneys that may or may not be at-risk due to the deceased’s medical history. They “evaluate nearly 40,000 deaths in [a network] of 129 area hospitals, almost 110 per day. Only about 750 are suitable donors,” he said. “Mike’s getting called because he’s been on the waiting list for a while,” since 2012 in his case. Even before the dialysis began.

The first four calls that Farulo’s received haven’t materialized into a donor. The initial three were highly at-risk and, being even a little sluggish on the chance to jump on the fourth combined with being fifth on the list, both kidneys from the fourth call just missed him.

Every once in a while, the Point Breeze resident tells his story to an interested party and they swear they’ll consider being a live donor. Although he doesn’t hold his breath, he seems peacefully hopeful that his luck could change at a moment’s notice.

“I tell my story to people who want to listen,” he said humbly.

When his mother was dying, his father went to the local newspaper and swears her story resulted in 10 or 12 people that went into the nearby hospital to test their kidney compatibility.

“4.7 million people have it on their license out of 9 million drivers [in PA],” Nathan reported. “In the U.S., 125 million have it on their state ID or driver’s license and that’s half of the driving public. Over 90 percent say that organ donation is a good thing” but, he notes, trauma scenes often don’t include a state ID and that’s why it’s important to register as an organ donor with PennDOT. “One to two percent of all potential people who die are potential donors,” he says. “The need is great [for donors].”




From The Beaufort Gazette, Hilton Head, SC, BY RYAN COPELAND



This will be Linda Keene's second Christmas with one of Sara Oakley's kidneys.

Three years ago, when Keene's organs began to fail, Oakley was there to offer a shoulder to cry on, an ear to listen, and, ultimately, an kidney to donate.

But that is not where the story -- or their bond -- really began.

Over thirty years ago, Oakley serendipitously stepped into Keene's music room at Laurel Bay Elementary. Both teachers, both relatively new to Beaufort, and both about to have their first babies. They also lived one street over from each other and began to carpool to work.

Keene soon took time off to stay at home with her daughter, Meredith, as well as Oakley's son, Hayes. Their lives were running smoothly as the 1970's came to a close.

But as the 1980's began, so did health problems for Keene's family.

Her mother had long suffered from Polycystic Kidney Disease. Two of her three sisters were diagnosed with the illness. Keene was tested and found to be carrying the hereditary gene as well. At that time, all she could really do was monitor her blood pressure and kidney functions. But the time bomb was quietly ticking.

It wasn't until 2006, when Keene's sister Claudia passed away, that Oakley became aware of the serious nature of the disease. She told her husband that if it ever came to Keene needing a transplant, she would provide the kidney.

Her chance to make good on that vow came sooner than either she or Keene imagined.

By the summer of 2012, Keene noticed herself slowing down physically. The smallest effort left her exhausted. Her nephrologist in Savannah set up an appointment at the Medical University of South Carolina in Charleston to discuss treatment options after her kidney function dropped well below the 15% standard for healthy organs. She was in full renal failure.

"It's funny, I had seen my sister Susanne receive a transplant and suffer from some complications and told myself I never wanted to go through with that," said Keene.

But faced with few other options, she accepted the news that she was a good candidate for a transplant.

Several friends immediately got tested as possible donors, a gesture Keene found "meaningful" and well-intended. Most of them, however, never made it past the point of having good enough blood pressure readings.

One who did make it through to the next round was Oakley.

"I procrastinated in filling out the paperwork, but once I passed the 24-hour blood pressure monitoring, I realized I had made it further as a potential match than others," said Oakley.

Calling it the "best physical anyone could have," Oakley passed the stress test, blood matching and every other measuring tool the doctors threw at her. She had not only a clean bill of health, but the health of a woman half her age. That matters only because she was soon to become the oldest transplant donor in the history of MUSC.

"They called me on my birthday to tell me I was a match and everything was a go," said Oakley.

The present, though, was for Keene.

For two people as close as sisters, the match was no surprise.

The transplant was performed in May of 2014.

As Oakley lay on the operating table having the kidney removed, Keene waited in a nearby room to receive it.

The surgeon emerged from the operation room to say the "new" kidney had begun working immediately in Keene's body.

Now, Keene gets compliments about how healthy she looks -- a fact Oakley attributes to having the gift of her kidney.

While Keene knows not to push things too much, the transplant has transformed her.

"It added years to my life and opened up new opportunities I didn't have before," said Keene, including a continuing friendship with Oakley.

Oakley agrees.

"She knows more secrets about me than anyone, but now she can't tell them because she has my kidney," said Oakley.

Sara Oakley gave Linda Kenne the gift of life.

Together they share the gift of one another.




From Panama City News Herald, Panama City FL, By JENNIFER RICH

Read more here: http://www.islandpacket.com/news/local/community/beaufort-news/article50721035.html#storylink=cpy


Bonifay resident celebrates 'sister-like match' this Christmas

Candi Hinson and Becky Raulerson went on a cruise to the Bahamas two years ago.


Even with Christmas just days away, 39-year-old Candi Newsom Hinson says she already has received the biggest gift possible.

“It’s right here,” said Hinson, patting the right side of her abdomen.

Hinson has spent the year recovering since receiving a kidney transplant earlier this year. In the ninth-grade, Hinson first learned about her kidney disorder during a sports physical for the Blue Devils basketball team. As the physician palpated her stomach, he felt Hinson’s spleen was enlarged. The observation led to further testing and a diagnosis of polycystic kidney disease (PKD).
PKD is a genetic disorder in which the kidneys develop cysts over time, causing kidney function to suffer tremendously.

“They take over the kidneys where they can’t filter,” Hinson said.

There’s no known cure for PKD, and more than half of people diagnosed will experience kidney failure by age 50. These patients eventually require dialysis or a kidney transplant.
Hinson said after her diagnosis, she was put on blood pressure medicine to avoid putting unnecessary strain on her kidneys. She lived a normal life with PKD, but had occasional lower back pain and fatigue. Hinson continued to get yearly checkups — until two years ago, when her kidney function had deteriorated enough for doctors to advise it was time to consider a transplant.

“Some people stay on the transplant list for years, and you have to meet all this criteria,” she said.
Hinson’s husband, Travis Hinson, was first to be tested as a possible donor. He was a match to his wife, but he was ruled out due to kidney stones.

Doctors told Hinson her best option would be a live organ donor.
Doctors “see how well people do with transplants before dialysis, so that was the goal, and we met it because of Becky.”

‘It’s going to be you’

Hinson’s best friend since elementary school, 39-year-old Becky Raulerson insisted she would be next to be tested as a potential donor.

“A feeling came over me,” Raulerson said, "and God said, ‘Becky, it’s going to be you.’ ”

In November 2014, Raulerson flew to Walter Reed National Military Medical Center for three days of compatibility testing. After the gamut of blood work and scans, the lifelong friends received the news for which they had hoped — Raulerson was a perfect match.

“They told us it was a sister-like match,” Hinson said.

Raulerson said she wasn’t at all surprised, and a surgery date was set for April 16. The friends saw one another the day following the surgery.


Read more here: http://www.kansas.com/entertainment/holidays/article50694485.html#storylink=cpy


Read more here: http://www.kansas.com/entertainment/holidays/article50694485.html#storylink=cpy

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