Group Looks at New Plan for Liver Transplants – NBCNews.com

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The nation’s transplant network is taking a long-awaited step to ease a serious disparity: Where you live affects whether you get a timely liver transplant or die waiting.

Desperate patients sometimes travel across the country to get on a shorter waiting list – if they can afford it. On Monday, the United Network for Organ Sharing is proposing a change, redrawing the map that governs how donated livers are distributed so patients wouldn’t need to leave home for better odds.

“We want to make sure we give everyone a fair opportunity to get a liver transplant,” said Dr. Ryutaro Hirose, chairman of the liver transplant committee at UNOS, which runs the nation’s transplant system. “It’s pretty much long overdue.”

The problem is that some parts of the country have fewer available organs, and higher demand for them, than others. That means someone in California or New York, among the toughest places to get a new liver, tends to be sicker before getting a transplant than someone in South Carolina or Washington state.

“There’s a huge difference in the risk of death on that waiting list depending on where you live,” said Hirose, a transplant surgeon at the University of California, San Francisco. Shifting the boundaries that determine where a liver is offered first “matches better the organ supply and demand.”

Related: Competition Affects Who Gets Liver Transplants

More than 14,600 people are on the waiting list for a new liver. Just over 7,100 received one last year – all but a few hundred from deceased donors – and more than 1,400 people died waiting.

The geographic disparity adds another hurdle.

Livers are offered first to the sickest patients as determined by a ranking, a so-called MELD score, which uses laboratory tests to predict their current risk of death. The nation’s 11 transplant regions are subdivided into local areas with individual waiting lists, and there are wide variations in organ availability both within and between regions.

Today, some regions are able to transplant patients before they’re super-sick – with MELD scores as low as 23 – while others can’t provide transplants until a patient’s MELD score reaches 35, meaning they’re at risk of death within weeks, Hirose said.

It’s legal to move around for a better chance, if people know that and are able to. For example, the late Apple CEO Steve Jobs lived in California but in 2009 had a transplant in Tennessee, which at the time had one of the shortest waits.

UNOS’ proposed fix is similar to how politicians redraw voting maps: divide the nation into eight new “districts” for liver transplants. That allows wider sharing and shifts the boundaries to better mix areas where more potential donors live with areas that have longer waiting lists.

The goal is for patients to have similar MELD scores at the time of transplant no matter where they live. Research models suggested the change would mean the less sick in some places, such as in the South and Northwest, would wait a little longer so that sicker people elsewhere can get a new organ a little sooner.

UNOS has debated how to change liver distribution for several years, a process Hirose called contentious as some transplant centers with shorter waits didn’t want to lose them. The proposal will be open for comment from the public – check https://optn.transplant.hrsa.gov/ – through mid-October before any changes are finalized.

Related: Want a Liver? Try a Different State

Sick patients shouldn’t have to leave home to improve their odds of a transplant, said liver recipient Myles Kane. He was shocked when his own doctors in New York urged the Brooklyn man to explore that option after an autoimmune disease caused his liver to fail at age 33.

“There’s this magical window where you have to be the sickest person on the list, but if you die from that sickness it’s a real narrow window,” said Kane, who eventually got on a shorter waiting list in North Carolina, where his girlfriend’s parents lived.

They gave Kane a place to stay for three months while recuperating from his December 2013 transplant; he met other patients who had to spend months in hotels.

The transplant chief at a leading liver center welcomed the proposed change.

“The distribution of organs is not a right, it’s a gift. We want to try to allocate that gift in the most fair way possible, the way that does the greatest good,” said Dr. Abhinav Humar of the University of Pittsburgh Medical Center, who isn’t part of the UNOS committee.

Because a piece of a liver can regrow, patients can avoid the transplant wait if they’re able to find a living donor, he noted. But ultimately, more organs from deceased donors are needed.

With the proposed remapping, “we’re just changing the way the pie is distributed,” Humar said. “The best solution would still be to make the pie bigger.”

Life as an organ transplant recipient: the reality – Irish Times

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The first recorded kidney transplant took place in Ireland in 1964, and in the more than half a century that has followed, more than 5,000 organs have been transplanted. Nowadays, more than 3,500 people are alive in Ireland thanks to a successful organ transplant, having benefited from the increased life expectancy and enhanced quality of life the procedure can bring.

However, once the early threat of organ rejection is over, life with somebody else’s kidney or liver is not without its challenges. Transplant recipients have to make key adjustments to their lifestyles, and choices that others take for granted require careful consideration.

Prof Aiden McCormick of the specialist liver unit at St Vincent’s Hospital, Dublin, explains that different transplant patients will encounter different challenges, and adds that it depends on factors such as the age of patient and their general health beforehand.

Patients are not normally considered for liver transplant if their life expectancy is less than two years with their current liver. “Liver transplantation, in particular, is an excellent operation and for young people who have liver transplants, the life expectancy afterwards is believed to be 30 years plus. There really is an enormous bonus in terms of life expectancy if you have a transplant,” he says.

Between 70 and 80 per cent of those who were working before their transplant will return to work within about three to six months of their transplant, and people can get back to driving within about six weeks.

Pregnancy is a major issue for most young women who receive a transplanted organ, McCormick says.

“In general we don’t like people getting pregnant within about 12 months of a transplant because they are on a lot of immunosuppressive drugs afterwards. We reduce to maintenance doses, but we like to make sure the liver is working well on minimal doses first.

“There are quite a lot of medications that we use for immunosuppression and many of these would be dangerous during pregnancy.”

A pregnancy in someone who has had a transplant is inherently high-risk, with certain complications of particular concern such as gestational diabetes. There is also a higher risk of needing a Caesarean section and having a premature birth and/or low birth weight.

“If it is managed carefully, we get very good results. We have had at least 20 babies born to ladies who have had liver transplants and they have done really well,” McCormick says.

While male fertility isn’t generally affected, in recent months there have been warnings about one of the immunosuppressant medications used post-transplant, mycophenylate, and a potential risk with men taking it whose partners are pregnant.

“We use it a lot and we have always been very careful to stop it in females before pregnancy but there are now concerns that it should be stopped in males too, as it may get into the sperm and cause problems with the foetus.

“This is a theoretical risk, and I don’t think there have been any other cases, but we will have to look at medications in males too.”

The interesting thing about liver transplant is that women with the condition autoimmune hepatitis often have trouble conceiving but following a transplant their fertility is hugely improved, he adds.

“Therefore, we have to have a conversation with those ladies to start using contraception as they may have not been, in order to avoid an inadvertent pregnancy.”

According to McCormick, one of the bigger problems in older patients is an increased risk of hypertension and diabetes, as well as obesity, meaning an increased risk of vascular disease, in terms of stroke and heart attack.

Typically, patients may be underweight before their transplant and they are encouraged to eat more and gain weight but this advice is reversed post-transplant.

“A lot of transplant patients tend to put on a lot of weight the first year or so after transplant, and we do warn them about that and advise them to watch their diet and get plenty of exercise,” he explains, adding that there is a specific transplant dietitian who works with the patients on these aspects.

One way in which they can be restricted is in their choice of holiday destination. McCormick explains that he prefers patients not to travel to countries where the quality of medical services may be poorer or where they might be at risk of major infectious diseases such as malaria or dengue fever, for example. Transplant patients are more prone to infections and are thus more likely to get common problems such as travellers’ diarrhoea and respiratory infections following long flights.

“The first few years after liver transplant we have to be careful about foreign holidays. We say to the patient, if you think you wouldn’t be happy to be in a hospital in the country you are visiting, or get a blood transfusion there, then don’t go. Stick to safer territory and countries with good medical services.”

Smoking and drinking should be avoided. With transplant patients there is an increased risk of cancer due to immunosuppression medication, and lung cancer is one they are particularly susceptible to if they smoke.

“Most of the transplant patients we see, it is not related to alcohol abuse, but none of them should really drink alcohol at all post-transplant,” adds McCormick.

Mark Murphy of the Irish Kidney Association echoes many of McCormick’s comments regarding the vastly improved quality of life that transplant patients enjoy, saying transplant medicine has progressed to allow this.

“For example, years ago women were just told not to become pregnant but now they do and it is very successful.

“I often say that with dialysis you’ve got half a life but with a transplant you get back 95 per cent of your life.

“It isn’t a cure, however, and patients with kidney transplants still have end-stage kidney disease, albeit managed with a kidney transplant.”

Murphy reiterates that the increased risk of developing cancer is significant for a transplant patient due to the use of immunosuppression – by year 25 of a patient’s new kidney, some 80 per cent will have had a cancer episode, he says.

“The vast majority of these will be skin cancers, and what they say is that the kidney transplant patient is 250 times more likely to get a skin cancer than you or I, so they are closely monitored.”

For the 500-plus patients who receive transplanted organs each year in Ireland, their lives will never be the same again.

“It is modern medicine that has got us there. The longer we are dealing with immunosuppression, the more we are able to manage it, and the drugs have become more refined.

“There are between 3,500 and 4,000 people alive in Ireland today thanks to an organ transplant.”

Bone marrow transplant patients report better quality of life compared to peripheral blood transplant recipients … – Science Daily

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A large, nationwide study published in the journal JAMA Oncology found that people who received transplants of cells collected from a donor’s bone marrow ― the original source for blood stem cell transplants, developed decades ago ― had better self-reported psychological well-being, experienced fewer symptoms of a common post-transplant side effect called graft-vs.-host disease and were more likely to be back at work five years after transplantation than those whose transplanted cells were taken from the donor’s bloodstream.

“We’re hoping that once we provide information about long-term quality of life and recovery, patients and their doctors can take this into account when they’re planning their transplants,” said lead author Dr. Stephanie Lee of Fred Hutchinson Cancer Research Center. She noted that the results would only be applicable to transplant patients who are similar to those enrolled in the trial. The study also showed that there was no difference in overall survival, treatment-related death or relapse between the two groups of study participants. Lee said that this result would reassure the many patients for whom survival is the top concern.

“There are many ways to do a transplant. Choosing a source of stem cells is just one decision. But anything that improves the success of transplant can help future patients,” she said.

The study included 551 people between age 16 and 66 with leukemia or certain other blood malignancies who needed to receive a transplant of blood-forming stem cells from an unrelated donor. The patients were randomly assigned to one of the two types of transplants. From 6 months to five years after the transplant, study researchers called the participants periodically to assess how they were doing.

The researchers found that people whose transplanted cells were derived from their donor’s bone marrow were more likely to report better psychological well-being others than those assigned to receive the stem cells from circulating, or peripheral, blood. They were also much more likely to have returned to at least part-time work than their counterparts in the bone marrow transplant group.

“Results of this study set bone marrow as the standard source of stem cells for transplantation from unrelated donors” said Dr. Claudio Anasetti, senior author of the study and chair of the Department of Blood and Marrow Transplantation at Moffitt Cancer Center.

The researchers suspected, but could not confirm, that these patients had better emotional well-being because they also experienced fewer self-reported symptoms of chronic graft-vs.-host disease, or GVHD, and had fewer side effects from GVHD treatment. Chronic GVHD is a common transplant complication in which transplanted immune cells turn against the patient’s healthy cells, causing symptoms such as a debilitating thickening of the skin and permanent loss of lung function.

This condition is a major focus of Lee’s research as research director of Fred Hutch’s Long-Term Follow-Up Program, which provides lifelong monitoring and care of transplant patients, and as leader of a national research consortium on chronic GVHD.

The study led by Lee is the latest example of the decades of research by many scientists that has continued to improve bone marrow transplantation and related forms of blood stem cell transplantation by boosting the therapy’s success rates and decreasing toxicity.

“When both your disease and the recommended treatment are life-threatening, I don’t think people are necessarily asking ‘which treatment is going to give me better quality of life years from now?'” Lee said. “Yet, if you’re going to make it through, as many patients do, you want to do it with good quality of life. That’s the whole point of having the transplant. It’s not just to cure your disease but also to try to get back to as normal of lifestyle as you can.”

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The above post is reprinted from materials provided by Fred Hutchinson Cancer Research Center. Note: Content may be edited for style and length.

Post-transplant anxiety linked to complex instructions, caregiver empathy – Science Daily

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Some anxiety is perfectly normal for kidney transplant patients, but new research suggests that medical staff can help patients feel more at ease when they leave the hospital and that could decrease the chances they’ll be readmitted.

High levels of anxiety a week after a kidney transplant patient went home more than doubled the chances he or she would be readmitted within 30 days of release, researchers found.

And anxiety was higher for patients who received inconsistent directions related to post-discharge care while in the hospital and who reported less-than-optimal empathy on the part of nurses, doctors and other caregivers, researchers from The Ohio State University Fisher College of Business and Wexner Medical Center report in September’s Journal of Surgical Research.

“The more patient-centric the care, the more trust the patient had in the information provided, the lower the anxiety level after discharge,” said Aravind Chandrasekaran, study co-author and an associate professor of operations and associate director of Fisher’s Center for Operational Excellence.

“If you’re anxious, you’re going to come back.”

Readmissions can happen for true medical reasons — such as a patient taking the wrong medications or not adhering to post-transplant safety measures.

They can also arise when the worried well return unnecessarily, said Susan Moffatt-Bruce, study co-author, cardiothoracic surgeon and chief quality and patient safety officer at Ohio State’s Wexner Medical Center.

“Sometimes we can make ourselves unwell because we’ve been so anxious,” she said.

Standardizing post-transplant care and training caregivers to convey more empathy during their educational interactions could go a long way toward keeping new kidney recipients well and out of the hospital, the study concluded.

“It comes down to understanding the whole patient,” Moffatt-Bruce said. “With some simple interventions, including being kind and being present, we can make a difference.”

About 17,000 people receive kidney transplants each year in the United States and more than 100,000 are on the waiting list, according to 2014 data from the Health Resources and Services Administration. More than 30 percent of them are readmitted within 30 days of their release, previous research has found.

When patients head home, good self-care — including taking medications properly and avoiding infection risks — is critical for maintaining good health.

But the list of instructions for transplant patients is long and it can be confusing, Chandrasekaran said. On top of that, patients sometimes hear conflicting advice from different members of their care team.

Prior to beginning the study, he and his collaborators reasoned that anxiety after discharge could be a significant player in the high rate of readmissions.

Ohio State’s research team first interviewed 20 patients who received a transplant at the Wexner Medical Center to get a handle on the quality of care delivered during hospitalization. In general, the interviews suggested that information conveyed to patients varied depending on the caregiver and was delivered “in a somewhat rushed manner.”

Researchers also shadowed the care team to listen first-hand to the instructions they gave transplant patients after their surgeries.

One example of inconsistent advice they witnessed: One nurse recommended “a lot of fluids,” another said to drink two liters a day and another told the patient to consume 100 ounces.

“There must have been 16 different ways to tell them to drink a lot of water,” Chandrasekaran said, adding that this wasn’t because the nurses weren’t following protocol. Rather, they were passing along various guidelines they’d been told over the years.

The researchers then used information from those shadowing experiences and the initial 20 interviews to develop surveys given to another 77 kidney recipients, 24 of whom were readmitted within 30 days.

“We wanted to see what was it that caused them to have anxiety and what could we do to alleviate that,” Moffatt-Bruce said.

“We asked patients, ‘What went right, what went wrong?’ ”

The researchers assessed the consistency of patient education using a five-item test that measured the ease of getting information and the level of understanding of symptoms and procedures. To evaluate empathy, they used a three-item scale that asked patients about their comfort level when they interacted with caregivers.

The researchers worked closely with the entire transplant team at Ohio State’s medical center, including 24 nurses and several physicians.

They found a strong association between anxiety levels a week after discharge and readmission within a month. They also found that the odds of getting readmitted increase by 110 percent for a one-unit increase in anxiety levels.

They did not find a direct link between consistency and empathy measured in the surveys and readmissions. But they did find that those elements appeared to play a clear role in raising anxiety, which was linked to readmissions.

The researchers took into account factors that could skew their findings — including age, ethnicity, preexisting health conditions and the function of the transplanted organ upon discharge.

Since conducting this work, the researchers and transplant staff designed interventions to improve pre-discharge care and attempt to reduce preventable readmissions.

The discharge nurses, in particular, played a key role in the changes, which have cut the number of individual instructions given to patients from about 80 to 25, Moffatt-Bruce said.

“When you go home you’re going to be more confident, you’re going to be safer and you’re going to be less likely to come back to the hospital,” she said.

The researchers plan to publish results from the follow-up study soon.

Astellas and World Transplant Games Federation Announce Launch of Fit for Life! to Promote Physical Activity in … – PR Newswire (press release)

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HONG KONG, Aug. 19, 2016 /PRNewswire/ — Astellas Pharma Inc. (TSE: 4503, “Astellas”) and the World Transplant Games Federation (WTGF) today announced the launch of Fit for Life!, a global program to help transplant recipients live full and active lives through ongoing physical activity and participation in organized sports. The announcement was made at the 26th International Congress of The Transplantation Society in Hong Kong. As a longtime supporter of the transplantation community, including world and local country transplant games, Astellas has expanded its collaboration with WTGF through this program to help evolve the WTGF’s physical activity focused programming to include providing transplant and organ donation communities resources, research and advice regarding nutrition and physical activity post-transplant.

A healthy lifestyle is important for everyone, but it’s especially important after an organ transplant as poor lifestyle habits can increase the risk of organ rejection.1 Additionally, studies have shown that those who are obese may have more health problems after a transplant than someone who weighs less.2 For example, the long term success of a kidney transplant depends on several factors including proper diet, exercise, and weight loss, if needed.3

“As longtime supporters of the transplantation community, we are proud to continue our collaboration with the World Transplant Games Federation and help make a difference in the lives of transplant recipients and their loved ones around the world,” said Yoshihiko Hatanaka, president and chief executive officer, Astellas. “Astellas is committed to continuing to work with partner organizations to respond to transplant recipient challenges and address unmet medical needs.”

To help raise awareness of the importance of maintaining a healthy lifestyle post-transplant through the Fit for Life! program, the WTGF will begin accepting applications for Fit for Life! Ambassadors on September 1, 2016. Transplant recipients from participating countries around the world can submit an online essay explaining how they have stayed fit and active in their life post-transplant. Fit for Life! Ambassadors will be responsible for inspiring other recipients through their own commitment to remaining fit and active post-transplant. Ambassadors will represent WTGF by speaking about their physical activity and fitness experience to transplant clinics, participating in sporting programs and encouraging others to attend transplant games.

To celebrate the start of this program, an independent judging panel will review the submissions and select 12 ambassadors from around the world to receive an all-expenses paid trip to Chicago, Illinois to be recognized during an international test rugby match between the World-champion New Zealand All Blacks and the Irish Rugby Football Union at Chicago’s iconic Soldier Field. Legendary All Black Jonah Lomu was a kidney transplant recipient, and both former All Black wing Joeli Vidiri and former Ireland lock Richard Costello have received kidney transplants.

“Our Federation is committed to encouraging transplant recipients to be more active, more often, because research shows that physical fitness plays a critical role in maintaining long-term well-being for transplant recipients,” said Chris Thomas, president, World Transplant Games Federation. “Fit for Life! is a mantra that everyone in the community, and especially transplant recipients, should embrace. We are thrilled to showcase this program at such a prestigious rugby match and are grateful for Astellas’ continued commitment to the global transplantation community.”

The judging panel will be chaired by Professor Jeremy Chapman AC, a world-renowned renal physician and former president of The Transplantation Society.

Please visit wtgf.org. to learn more about Fit for Life! and the Fit for Life! Ambassadors program.

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p itemprop=”articleBody”>About the World Transplant Games Federation
The World Transplant Games Federation units transplant recipients from across the world to promote the success of organ and tissue donation and life-saving transplantation. With more than 70 member countries, we stage the world’s largest awareness event for transplantation, the Summer World Games, to inspire the public to consider organ and tissue donation. We inspire recipients to rehabilitate following their transplant and keep fit and healthy in their ongoing journey.

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p itemprop=”articleBody”>About Astellas Pharma Inc.
Astellas Pharma Inc., based in Tokyo, Japan, is a company dedicated to improving the health of people around the world through the provision of innovative and reliable pharmaceutical products. We focus on Urology, Oncology, Immunology, Nephrology and Neuroscience as prioritized therapeutic areas while advancing new therapeutic areas and discovery research leveraging new technologies/modalities. We are also creating new value by combining internal capabilities and external expertise in the medical/healthcare business. Astellas is on the forefront of healthcare change to turn innovative science into value for patients. For more information, please visit our website at www.astellas.com/en.

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p itemprop=”articleBody”>1 Managing Your Health After an Organ Transplant. (2014, July 16). Retrieved July 28, 2016, from http://www.webmd.com/a-to-z-guides/organ-transplant-after-the-transplant?page=3
2 Lentine KL, et, all (2012). Obesity and kidney transplant candidates: how big is too big for transplantation? Am J Nephrol. 2012;36(6):575-86. doi: 10.1159/000345476.
3 National Kidney Foundation (2016). Care After Kidney Transplant. Retrieved August 4, 2016 from: https://www.kidney.org/atoz/content/immunosuppression

Logo – http://photos.prnewswire.com/prnh/20140416/84970

 

SOURCE Astellas Pharma Inc.

Medicare should cover costs for marrow donor/cord blood transplants like solid organs – The Hill (blog)

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Many of us have never been touched by blood diseases. But tens of thousands of Americans diagnosed with leukemia and lymphoma each year are not so lucky. Those individuals—as well as their friends and loved ones—understand the ceaseless struggle with disease. They understand the heroism of survivors. And, with heavy hearts, they too often understand the sadness that accompanies loss of life.

Fortunately, there is more hope than ever for those facing blood disease diagnoses, and the primary reason is increased access to bone marrow and cord blood transplants. As a physician and the CEO of National Marrow Donor Program® (NMDP)/Be The Match®, I have witnessed great progress in the treatment of these diseases. Since our organization’s Be The Match Registry®was created by an act of Congress almost 30 years ago, our organization has facilitated more than 74,000 life-saving transplants. Thanks to the selflessness of donors in the United States and around the world our reach continues to grow; Be The Match now stands ready with more 27 million potential marrow donors and 680,000 cord blood units to deliver to patients in need.

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Despite this, one of the greatest challenges facing the program today is ensuring that patients in need of a transplant can actually access one. That’s because flawed Medicare payment policies often hamper the true effectiveness of our nation’s transplantation infrastructure, putting vulnerable Americans with blood diseases at risk. While we have seen steps in the right direction in recent weeks, we have also been disappointed by the failure to act. And our nation’s policymakers must go even further to make critical changes in reimbursement if patients are to have the treatment they need.
Let’s start with the positives. The Centers for Medicare & Medicaid Services (CMS) recently unveiled its proposed hospital outpatient prospective payment system (HOPPS), which would increase Medicare reimbursement to partially address the deficits marrow and cord blood transplant centers incur in providing transplants in the outpatient setting. 

I cannot emphasize enough how important these measures are and how vital it is that they are finalized later this year.  That’s because—despite the fact that marrow transplants often represent a patient’s last hope—there is a chronic, almost unthinkable underfunding among bone marrow and cord blood transplant centers for Medicare beneficiaries seeking life-saving transplants. In fact, the current outpatient reimbursement formula does not even consider the cost of the marrow or cord blood acquisition in setting reimbursement. These costs alone can easily reach $45,000 or more.

The proposed HOPPS rule is a vital change that will provide a positive pathway to address underfunding.  Among a number of changes, it reclassifies transplants in the outpatient setting, increases the payment rate nearly five-fold, and demands clear reporting for acquisition charges, including NMDP fees, human leukocyte antigen (HLA) typing, donor evaluation, collection of cells and other costs.  The last is especially important as it will allow CMS to assess the costs and gauge how well the payment reflects the costs of providing these services.

But the improvements contained in the proposed outpatient rule will still significantly underfund the cost of a transplant in that setting. More important, the vast majority of allogeneic transplants are still done in the inpatient setting. Unfortunately, CMS released a final rule in early August for the inpatient prospective payment system (IPPS) that retains the current flawed reimbursement system without explanation for the omission of bone marrow and cord blood transplants reimbursed in the inpatient setting, which is where the vast majority of these transplants occur.  Without resolution to this serious problem, patients 65 years and old are at risk for not being able to access life-saving transplants simply because of their age and type of insurance.

For those of us in healthcare, we understand that when the numbers do not add up, especially to this extent, limited access is the unfortunate result. But this just will not do—not when the stakes are this high.  Not when transplant represents a patient’s last chance at survival.

I commend CMS on its work on the HOPPS Proposed Rule, and I urge the Agency not only to finalize the rule, but to also continue working on behalf of patients to eliminate barriers to transplant in the inpatient setting.

CMS needs to make robust changes to payments in all settings, as vast differences in the cost of care and rate of reimbursement persist. This also means addressing narrow networks and ensuring that patients can access transplant options in a timely, convenient and cost-effective manner.  And it means reworking payment policies so older Americans will know whether or not Medicare will pay for their transplant. 

Our nation’s transplant infrastructure has made incredible progress since 1987. Let’s keep moving forward, first with changes to the HOPPS, next with similar reforms in the inpatient setting, and then with more meaningful reforms in years to come.

CEO of National Marrow Donor Program® (NMDP)/Be The Match®. The National Marrow Donor Program (NMDP)/Be The Match is the global leader in providing a cure to patients with life-threatening blood and marrow cancers such as leukemia and lymphoma, as well as other diseases. The nonprofit organization manages the world’s largest registry of potential marrow donors and cord blood units, connects patients to their donor match for a life-saving marrow or umbilical cord blood transplant, educates health care professionals and conducts research through its research program, CIBMTR® (Center for International Blood and Marrow Transplant Research®),so more lives can be saved. NMDP/Be The Match also provides patient support and enlists the community to join the Be The Match Registry®, contribute financially and volunteer. To learn more about the cure, visit BeTheMatch.org or call 1 (800) MARROW-2.

The views expressed by authors are their own and not the views of The Hill. 

Infant Receives Heart Transplant at Duke Hospital – TWC News

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DURHAM — A Johnston County family is sharing their story to encourage others to become organ donors.

Jared and Bethany Reeves’ youngest daughter, Naomi, was born in late March. But doctors diagnosed her with hypoplastic left heart syndrome.

“Essentially half of her heart is not working the way it should. It didn’t develop properly,” says Jared.

Doctors told the family Naomi needed a heart transplant. After waiting 145 days, Naomi recently received her new heart at Duke Hospital on Sunday.

“It was a very surreal. Again, we had no reason to think anything was wrong,” says Bethany.

Bethany says Naomi’s story highlights the need for more organ donors.

“Organ donation is a true need, and it’s a rampant need the continues to grow.”

According to Donate Life NC, a person is added to the transplant waitlist every 10 minutes. The average number of people who die waiting for a transplant everyday is 22. Currently, there are more than 123,000 people waiting for a transplant in the U.S.

“How amazing that your last act on Earth, could be saving eight other lives,” says Bethany.

Naomi is doing well but will have to take anti-rejection medicine for the rest of her life. The family doesn’t know when they’ll be able to go home but they say it could be within the next month.

Florida Hospital partners with Duke to expand bone marrow transplant program – Orlando Sentinel

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Florida Hospital for Children announced on Friday that it is expanding its existing bone marrow transplant through a new affiliation with Duke Pediatric Blood and Marrow Transplant Program.

“I came to Florida Hospital for Children with a vision of building a world-class transplant program for the people not just of Central Florida, but of the entire state,” said Dr. David Shook, medical director for the hospital’s Pediatric Bone Marrow Transplant program, in a news release. “By leveraging the vast resources of Duke Health, we’re one very large step closer to making that a reality.”

As an affiliate, Duke Health with provide Florida Hospital with advisory and operational support services, including business development, quality oversight and education and training. 

“We have been working toward this affiliation for some time and are thrilled to see it become a reality,” said Dr. Joanne Kurtzberg, director of the Pediatric Blood and Marrow Transplant Program at Duke, in a news release. “We see this as a way to extend the innovative treatments developed at Duke to children in the state of Florida through Florida Hospital’s visionary program.” 

Earlier this year, Arnold Palmer Hospital for Children announced that it’s opening a bone marrow transplant program with a $5 million gift from local a philanthropist.

Stem cells in the bone marrow help the body remake its immune system, especially after the patient receives high doses of chemotherapy or radiation. Bone marrow transplants can be used for several pediatric cancers including neuroblastoma, lymphoma, leukemia, blood disorders where traditional chemotherapy hasn’t worked, and sickle cell disease.

Teen donates kidney to younger brother needing transplant – Today.com

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Collin DeGonzaque was born with a birth defect affecting his urinary tract. He had his first surgery when he was 2 months old, and more than a dozen others have since followed.

His most recent operation took place last month: The 15-year-old New Yorker underwent a kidney transplant thanks to a living donor, his big brother.

The DeGonzaque brothers share bond after kidney transplantCourtesy of Jody Wilson

Wesley DeGonzaque, left, and his brother, Collin, see each other for the first time after their surgeries.

Both boys knew for years a transplant would eventually be the only option for Collin, who otherwise would have had to start dialysis. His severely damaged kidneys forced him to use a catheter since the age of 3. More recently, he’s had to follow a restrictive, bland diet, and a rigorous daily regimen of pills.

“I could see how it was affecting him. Being a teenager, he just wants to be a normal kid,” Wesley DeGonzaque, 19, said of his brother.

Earlier this year, Wesley volunteered to get tested as a donor for Collin and learned he was a perfect match.

“I saw my opportunity to make his life easier and help him out, so I took it,” he told TODAY.

The DeGonzaque brothers share bond after kidney transplantCourtesy of Jody Wilson

The DeGonzaque brothers shortly before their surgeries

The transplant took place July 19 at a Syracuse, New York, hospital. The procedure went better than even doctors expected, said the boys’ mother, Jody Wilson.

“Everything went splendid,” she said. The second doctors put Wesley’s kidney into Collin, “it turned pink and it started working right away, as if it had never left Wesley’s body.”

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Wilson said she initially found it difficult to accept Wesley’s desire to donate a kidney to his brother.

“Because how are you OK with your other child putting himself in that position and sacrificing like that?” Wilson told TODAY. “We didn’t want him to feel like he had to.”

But Wesley was determined.

“He said, ‘There is no way I can’t not give him a kidney,’ so all I could do was support him,” she said.

The DeGonzaque brothers share bond after kidney transplantCourtesy of Jody Wilson

Wesley, left, and Collin as children

Wesley and Collin have always shared a special bond, especially when they were much younger, their mother said.

“Wesley was like a little daddy. He used to take care of Collin and make him feel special,” Wilson said.

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Though the two boys look nearly identical, their interests couldn’t be more different, especially as they became teens. Collin listened to alternative rock and played video games while Wesley preferred hip-hop and played basketball.

“They’re not super close and they don’t hang out every day, but they’re very close in that they understand each other more than anyone else,” Wilson said.

The DeGonzaque brothers share bond after kidney transplantCourtesy of Jody Wilson

The brothers at Wesley’s high school graduation two years ago

The boys live just blocks away from each other — Wesley with their mother and Collin with their dad — but see each other at least every other day.

RELATED: North Carolina man who donates kidney saves own life in the process

“We are close but we were never special buddies before,” Wesley said. “But this was a chance for me to show him how much I cared about him without saying it.”

Collin agreed, describing what his brother did as more about their connection rather than the relationship they were born with.

“Mostly it goes to show what you would go through for someone you care about. Blood or not,” he told TODAY by email.

The DeGonzaque brothers share bond after kidney transplantCourtesy of Jody Wilson

“They understand each other more than anyone else,” Jody Wilson said about her sons.

Collin’s recovery is going well, but “it’s still one step at a time,” his mother said. He is able to eat regular food now but still must limit his exposure to the general public until his immune system gets stronger.

But Collin said he has seen improvements.

“I live a little happier in general. I can eat more. I do see more of Wesley and I talk to him more,” he said. “I guess we are kind of bonded for life (considering) the fact part of him is now me.

“It was an amazing experience to go through. Pain and all. Just to end up here knowing who saved me and how much potential my future now has because of him.”

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Transplant boy dreams of becoming a tennis star after winning gold – Birmingham Mail

This was originally published on this site

A Black Country youngster has scooped gold medals in tennis and is now dreaming of centre court stardom – five years after a life-saving liver transplant.

Kristof Polgar, aged eight, took part in this year’s British Transplant Games and came back with the impressive haul of medals despite suffering from a rare genetic disease.

The schoolboy, from Kingswinford, hopes to become as good as his hero Novak Djokovic.

He was born with the condition Progressive Familial Intrahepatic Cholestasis (PFIC).

Following a transplant at Birmingham Children’s Hospital, when he was just three years old, the determined youngster has gone from strength to strength and now receives tennis coaching three times per week at Tipton Sports Academy.

The ace performances of the Blanford Mere Primary School pupil at the British Transplant Games saw him win gold medals in the mini tennis, badminton and table tennis events.

He beamed: “I really enjoy playing sports, especially tennis. My favourite player is Novak Djokovic and it’s my dream to be as good as him one day.
Serbian tennis star Novak Djokovic in action.
“It was great to be part of the Birmingham Children’s Hospital team at the British Transplant Games. I’d really like to compete at the world event in the future.”

Kristof’s efforts, along with the 41 other young people, aged between three and 17, who represented the hospital this year, helped secure the ‘Best Liver Team’ title and coveted ‘Best Children’s Team’ prize for the 20th year running.

He was cheered on by his sister, Fanni, father, Csaba and mum, Erika.

She said: “It’s the fifth time Kristof has taken part in the games and it’s always quite emotional. Not only for us, but for all of the families who come together.

“It makes you remember the difficult times but it’s also fantastic to see children like Kristof enjoying sport. This is something that’s been made possible because a donor has given us the gift of life and it’s lovely the annual event celebrates this.”

  • To find out more or register on the national organ donation list see www.organdonation.nhs.uk or call Organ Donor Line on 0300 123 23 23.

Inspiration + Education : . . . . for parents of children who are going through transplant

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