From National Public Radio NPR, by Richard Harris (On Morning Edition)
Medicare Pays For A Kidney Transplant, But Not The Drugs To Keep It Viable
The federal government will pay more than $100,000 to give someone a kidney transplant, but after three years, the government will often stop paying for the drugs needed to keep that transplanted kidney alive.
Constance Creasey is one of the thousands of people who find themselves caught up by this peculiar feature of the federal kidney program.
Creasey started kidney dialysis about 12 years ago after her kidneys failed. That meant going to a dialysis center three times a week, for three hours per session. (A typical patient undergoes three to five hours of dialysis per session).
"The first three years of dialysis was hard. I walked around with this dark cloud. I didn't want to live, I really didn't," she says.
Being dependent on these blood-cleansing machines was physically and emotionally draining. But she stuck it out for 11 years. Medicare pays for dialysis, even for people under the age of 65. It also pays for kidney transplants for people with end-stage renal disease.
"Finally, a year and a half ago, transplant came. I was a little apprehensive but I said OK. And I call her Sleeping Beauty, that's my kidney's name."
Creasey, a 60-year-old resident of Washington, D.C., no longer needs to spend her days at a dialysis center. She has enough energy for a part-time job at a home furnishing store and time to enjoy life's simple pleasures.
"I was able to do my favorite thing — go to the pool — and I was just loving it because it's like I had no restrictions now," she says.
But there is still a dark cloud on Creasey's horizon. Medicare's kidney program currently pays for a large share of the expensive drugs she needs to take twice a day to prevent her body from rejecting the transplanted kidney. But under federal rules, that coverage will disappear three years after the date of her transplant.
"I have a year and a half to prepare, or save," she says. "How am I going to do this?"
She's already paying copays, premiums and past medical bills. She says she sleeps on the floor because she considers buying a bed a luxury she can't afford.
She has no idea what kind of insurance she'll be able to get after her Medicare coverage runs out. And she was shocked to discover how big the bills could be. One day she went into the pharmacy to pick up her drugs, and the Medicare payment hadn't been applied.
The pharmacist told her she'd need to pay a $600 copay for the one-month supply. "And I'm like are you kidding me? Six hundred? What am I going to do? I can't pay that!"
A social worker at MedStar Georgetown University Hospital in Washington, D.C., where Creasey got her transplant, sorted that out. But it's not a permanent solution.
The three-year cutoff for Medicare payments is a common problem, says Dr. Matthew Cooper, who runs the kidney transplant program at the hospital. That's especially so since many people with serious kidney disease have low incomes in the first place.
"It's probably about 30 percent of people who find themselves in a troublesome spot at this 36-month mark," he says.
Some people end up trying to stretch out their drug supplies by not taking them as often as they need to, he says. "We see that a lot."
But this isn't like skipping a pain pill and bearing the consequences. People lose their transplanted kidneys through organ rejection if they don't take their medicine religiously.
Rita Alloway, a clinical pharmacist at the University of Cincinnati, says she also encounters this false economy. "If we were telling them to take four pills twice a day, they may start taking three pills twice a day without telling us, to extend their coverage that they had for the prescriptions they had," she says. [Read more]
PKD Research
From PR.com
3D Map of PC2 to Jump-Start Drug Discovery Efforts in Polycystic Kidney Disease
ADPKD is one of the most common life-threatening genetic diseases, affecting ~1 in 800 individuals at birth. The disease is characterized by the formation of fluid-filled cysts that compromise kidney function and cause substantial pain for patients. 50% of patients with ADPKD eventually develop end-stage kidney disease and require dialysis or a transplant to survive.
Mutations in the genes that encode polycystin-1 (PC1) and PC2 cause the disease, but the mechanisms by which these mutations disrupt the function of these proteins and lead to disease are not known. PC1 and PC2 proteins are embedded in multiple membranes of kidney cells, regulate the movement of positively charged ions into these cells or into specialized compartments within the cells, and impact cellular signaling.
Scientists led by Profs Liz Carpenter and Juha Huiskonen at the University of Oxford employed a technique called cryo electron microscopy (cryoEM) to provide a three-dimensional view of PC2. The work revealed a novel substructure called the Tetragonal Opening for Polycystins or TOP domain, which caps the protein. At least 27 of the known ADPKD-causing mutations map to this region of the protein, and this structure provides important insight into how the TOP domain impacts the ability of PC2 to bind to and control the movement of ions.
“There is a significant need for scientists to provide insight into the biology of PC1 and PC2 so we can develop medicines to help patients with ADPKD. These structural insights will help scientists begin to understand how mutations in PC2 cause disease, and more importantly, generate ideas for how the disease can be treated,” said Chas Bountra, Director of SGC Oxford.
SGC scientists now plan to identify small molecules that stabilize PC2, with the hope of supporting its function in kidney cells and inhibiting cyst formation.
The paper, Structure of the polycystic kidney disease TRP channel Polycystin-2 (PC2), was published December 19th online on Nature Structural and Molecular Biology’s website.
PKD Fundraising
From Digital Journal
Philadelphia, PA -- (SBWIRE) -- 12/23/2016 -- Chorus Communications, a leading customized business solutions consultant, held a fundraiser last month for Brian Servis, a polycystic kidney disease (PKD) patient currently undergoing dialysis. The fundraiser occurred to support Servis and his sister-in-law, Amy Servis, Chorus Communications' Channel Manager, and kidney donor to Brian.
"The outpour of support for Brian and I has been a true inspiration, and made this holiday season so special for our entire family," said Amy Servis.
As soon as she discovered that she and Brian share the same blood type, Amy Servis, a member of the coveted Women in the Channel organization, quickly jumped at the opportunity to donate a kidney to her brother-in-law. PKD is a hereditary disorder that causes cysts to grow inside a person's kidneys, which leads to their enlargement and subsequent failure. As of now, Brian is on dialysis, and in need of a kidney transplant as soon as possible.
Chorus Communications would like to give a special thank you to Telecom For Change, for their generosity in contributing $2,500 to Amy and Brian to help supplement their recovery time post-surgery.
The fundraiser took place at Chambers 19 Bistro & Bar in Doylestown, Pennsylvania on November 30, and saw an enormous and supportive turnout. As well as the restaurant donating 20 percent of their profits for the day to Brian and his family, donors were able to raise roughly $10,000 through a Hair O' The Dog ticket raffle, gift basket sales, a 50-50 raffle and a GoFundMe campaign.
Those interested in contributing to Brian Servis' GoFundMe campaign can click here. To learn more about Chorus Communications, a leading business internet consultant in Bucks County, Pennsylvania and Greater Philadelphia, please visit their website.
About Chorus Communications
Chorus Communications is an award-winning Technology Consulting Firm that has built an unmatched reputation with its sales-partners, suppliers, and customers. Founded in 1995, Chorus is highly regarded as a leading Master Agency and has an extensive portfolio of cutting edge products and services to meet today's ever-evolving world of technology. The experts at Chorus provide knowledgeable recommendations on your needs from complex cloud designs to global wide-area network deployments and everything in between.
Chorus is dedicated to helping sales partners and customers in making knowledgeable choices about services, technology, and cost-efficient communications.
For more information on this press release visit: http://www.sbwire.com/press-releases/chorus-communications-helps-raise-10000-for-polycystic-kidney-disease-patient-and-donor-754164.htm
Gift of Life
Dana Clayton had waited more than 20 years for this moment. It was the day her body was free of the disease that had caused her extreme pain, exhaustion and shortness of breath, had yellowed her skin, and was about to force her into dialysis treatments to stay alive.
In early December, just four months after her best friend’s husband donated her one of his kidneys, Dana had her own, diseased kidneys removed. She’s showing no signs of organ rejection and, for the first time in more than 20 years, she is healthy and free of polycystic kidney disease.
“It’s going to change my life and our lives now that I’m going to be able to be healthy and do things again,” Dana said in an interview last week.
Dana’s story and that of her donor, Cowlitz 2 firefighter Brad Yoder, have been told before. But even now that this unlikely story is coming to a close, Dana, Brad, and their spouses are still amazed at how fast the process from matching to donation to recovery took. And while there are tinges of guilt and some struggles with recuperation, the bond between them and their families has never been stronger.
A perfect match
In 1994, Dana, of Kalama, was diagnosed with polycystic kidney disease, which causes cysts to form on kidneys and eventually causes them to fail.
In November last year, Dana, 44, was placed on the transplant list when her kidney function dropped below 10 percent. Her kidneys were the length of a ruler; they should have been the size of a fist. Dana and her husband, Brian Clayton, prepared for a long wait and dialysis treatment, thinking it would take years to find a matching donor. But, to their surprise, this wasn’t their future.
“Everything went incredibly faster than what they anticipated,” Brian said. “Everything has worked out. It’s pretty amazing.”
When Dana was placed on the transplant list over a year ago, her mother sent an email about it to close friends and family. The message listed statistics on wait times for organs, information about Dana’s disease and a link to sign up to become a donor. Among the recipients of the email was Laura Yoder of Kelso. She’s been Dana’s best friend since junior high school.
Knowing he had O-negative blood, the type to be a universal donor, Brad Yoder, Laura’s husband, clicked on the link taking him to the organ donor website. Forty-eight hours after he read the email, he signed up to see if he was a match.
A week later, a transplant team contacted him. They had reviewed his application to become a donor for Dana. They had discarded every single applicant but him. When his wife found out, she said she wasn’t surprised her husband, 44, was willing to donate a kidney to Dana.
He started the testing process immediately. Normally, the matching process takes four to six months, but Brad was determined to get it done quicker. He didn’t want Dana to go through dialysis, he said.
The testing process was rigorous. But after six weeks, he had confirmation: Not only was Brad a match for Dana, but he was so close of a match that doctors typically only see those results in siblings or relatives. Brad was so excited about the news that he showed up to Dana’s workplace to tell her in person.
On Aug. 15, the pair underwent the transplant surgery at Legacy Good Samaritan Hospital in Portland, removing one of Brad’s kidneys and implanting it in Dana. They left her two diseased kidneys in place.
Following the surgery, there were high-fives, hugs and excitement shared among family, friends and coworkers in the waiting room. After Dana’s surgeon came out to say her operation had gone well and that the donated kidney was in and functioning, Laura cried tears of happiness.
“Having been (Dana’s) friend for so long and knowing that you were going to go to her surgery someday, I knew I would be there in a form of support role somehow,” Laura said. “But, realizing that both of my best friends, literally my best friend — my husband — and my best friend of childhood ended up there … you already knew you were going to walk those steps. I just didn’t quite realize how big of a shoe it was going to be.”
Recovery
It’s been a little over four months since the transplant, and just a few weeks since Dana had her diseased kidneys removed. Doctors had waited to remove them to give the donated kidney every fighting chance, she said.
One thing the group noticed after the surgery was how healthy Dana looked. They had not realized how sick she had been.
“I noticed it 24 hours after the surgery,” Brad said. “During pre-op surgery we’re side by side, we’re across the room from each other, and I started taking things in and just kind of noticing … how Dana looked. It didn’t really hit me until the next day.”
Dana improved dramatically right away.
“The day before it was like a black and white picture and then you see that same picture with full color and it is a trip. Her skin looked tighter. It was glowing and there was color and just vibrance, and that hit me,” Brad said. “I don’t think any of us paid that much attention to it until we just sat back and noticed it. I mean that’s how long it’s been, I’ve known her for seven years, and you just didn’t see it.”
WHILE some girls hope for an iPad or perfume for Christmas, Erin Taylor, 12, is hoping for a kidney.
It may come from the true spirit of humanity — although rare, organ donor officials say they now see cases where a healthy person donates one of their two kidneys to a stranger as a gift of life.
Erin will spend Christmas with her Aunty Eleanor in Torquay enjoying their special bond.
Four years ago, Eleanor Taylor donated one of her kidneys to her niece but, in a sad twist, rejection of the organ means another transplant will be needed.
The North Brighton family’s emotional ordeal began in the lead-up to Christmas 2011 when Erin, then aged seven, was taken to Flinders Medical Centre on December 7 with what the family thought was gastro. She was immediately transferred to the Women’s and Children’s Hospital intensive care unit with kidney failure.
She made it home for Christmas Day but within four months her under-formed kidneys had been removed and she was being kept alive by dialysis.
Her parents, Andrew and Sarah, were not suitable donor matches but Andrew’s sister Eleanor selflessly stepped in to volunteer one of her own healthy organs for her niece.
On September 17, 2012, Erin received the donated kidney.
Unfortunately there have been problems since the transplant operation, Erin’s mother said.
“For the last three years her body has been rejecting the kidney and a biopsy a couple of weeks ago showed it is getting severely scarred,” she said.
“We’ve been told she has probably got one or two years left with it — she will need another transplant.”
Mrs Taylor is considering joining a donor pool where she would donate a kidney to another family in a similar position in return for a suitable kidney for Erin.
Erin is on growth hormones due to the treatment slowing her growth but is full of enthusiasm for life — she swims three times a week and plays sport, including volleyball and softball.
“I feel fine,” she said. “I’m really looking forward to going to Torquay for Christmas with Aunty Eleanor.”
In cases where a family member is not a suitable match, people needing a kidney transplant go on the waiting list for a donor organ which usually comes from a deceased person who made the decision to donate.
According to the Australian and New Zealand Organ Donor Registry, in 2015 in Australia 435 deceased organ donors donated to 1241 transplant recipients which included 703 kidneys.
However there are rare cases of a gift that even Santa can’t match — a healthy person giving a total stranger a kidney.
In the past 12 months several selfless people have stepped forward with a life-changing gift by making an altruistic donation of an organ.
Kidney Health Australia spokeswoman Professor Carol Pollock said it was now not uncommon for friends as well as family members to volunteer.
“Sometimes there are cases where a person who was getting ready to donate a kidney to a friend — and who had been through all the tests and was a good candidate to be a donor — no longer has to give one because a suitable donor kidney became available,” Prof Pollock said.
“We are now seeing cases where those people decide to continue on and become an altruistic donor — they give a kidney which goes into the pool to help someone they do not even know.
“In the past 12 months there have been several cases like this that I am aware of.
“You can function perfectly well with one kidney and it makes a huge difference to the recipient.”
