Maine’s delayed kidney donation shows disgrace of U.S. health care

[Clark]

http://bangordailynews.com/2015/04/16/health/blogs-and-columns/maines-delayed-kidney-donation-shows-disgrace-of-u-s-health-care/

Maine’s delayed kidney donation shows disgrace of U.S. health care
By Dr. Philip Caper

Getting health care in the U.S. often seems first and foremost to be about money. Our first encounter when seeking health care always seems to be with the billing department, not a caregiver. The problem often is about too little money.

But the latest health care media kerfuffle in Maine is about too much money. It centers around the efforts of a local woman needing a kidney transplant to find a donor. She posted a note on her car’s window asking for somebody to volunteer. A man did volunteer and turned out to be a good match for the patient.

That was the easy part.

Because the U.S. has not created a system to routinely pay the costs of health care, including organ donation, a friend of the donor set up a crowdsourcing fund to cover some of the medical costs, lost income and other expenses he would incur, estimated to be around $6,000.

To everybody’s astonishment, donations came flooding in and soon amounted to about $50,000. Great news and a great success story.

Not so fast. The size of the fund triggered concern on the part of Maine Medical Center, where the transplant was scheduled to be performed, that the donor would be perceived to be selling his kidney. That turns out to be a violation of federal law. Accordingly, the hospital put the transplant on hold, pending resolution of the legal question.

This is just one more example of the ways in which the dysfunctional way we finance health care actually interferes with the provision of care instead of facilitating it. That is true not only for individual cases, but there is evidence the daunting prospect of unpaid bills in the U.S. is deterring potential organ donors to boot.

In many other wealthy democracies that, unlike the U.S., have well-designed health care systems, the donor’s and the recipient’s medical costs and ancillary expenses would be covered, no questions asked. No crowdsourcing, bean suppers or cookie jars in the general store are needed.

“How can they afford to do that?” we might well ask.

The answer is pretty straightforward. Instead of wasting billions of dollars on unnecessary administrative costs related solely to dealing with multiple insurance companies, they have eliminated those costs by simplifying their health care financing into a single system. Savings in the U.S. from eliminating such administrative waste are credibly estimated to reach $190 billion.

By doing that, they free up resources to devote to actual health care and other pressing public needs such as infrastructure, education and public safety. As a result, they are able to cover everybody; get better results than ours; have systems that are simpler and more popular with their public, politicians and doctors; and spend, on average, about half of what we do. If we had such a system, where money is not the dominant issue in determining whether appropriate care is provided, we could join them.

Unfortunately, the top management in many of our nation’s largest medical centers, where much of the care is provided and much of the money is spent, are well known to be hostile to a simplified, single, nonprofit payment system. Instead, they seem to be preoccupied with increasing their “market share” and boosting their bottom line rather than embracing the most efficient system for providing quality care for everybody.

I would love to be proven wrong and see more influential health care leaders advocating for such a transformation. But there is no evidence this will happen anytime soon. It seems that the barriers to reform of our health care system — apathy, fear and anger, ignorance and greed — are alive and well in our medical-industrial complex.

The fundamental problem is that we still treat health care as a privilege instead a right and spend inordinate amounts of money to make sure nobody who doesn’t “deserve” it has to grovel to get it. In the meantime, this patient’s kidneys continue to fail, her transplant continues to be on hold and the patient and donor continue to be subjected to unnecessary anxiety and delay.

This a disgrace. It’s an entirely unnecessary evil. Americans deserve better than this. We all need to push harder for more fundamental reform.

[Clark]

http://www.wgme.com/news/features/top-stories/stories/two-people-involved-kidney-donation-controversy-talk-at-breakfast-fundraiser-26794.shtml#.VTJA_VwbIRZ

Two people involved in a kidney donation controversy talk at breakfast fundraiser
Updated: Monday, April 13 2015, 07:59 AM EDT
 
On Sunday, two people at the center of a kidney donation controversy spent the morning together at a breakfast fundraiser to raise money for an organ donor.

Last week the donation looked like it was in jeopardy because of concerns about money being raised for the donor.
 
Christine Royles needs a kidney transplant so she wrote a plea for help on the back of her car window. Josh Dall-Leighton responded to the plea and turned out to be a perfect match.
 
Everything appeared to be moving in the right direction until the hospital temporarily put the transplant on hold. A Go-Fund me account created for Dall-Leighton by someone else raised legal concerns. Everyone involved says the funds are intended to help Dall-Leighton’s family while he is out of work recovering from surgery.
 
Federal law makes it's illegal to profit off an organ donation. Hospital officials from Maine Medical Center in Portland say the average out of pocket expense for an organ donor, including lost wages, is around $6,000. The Go-Fund me campaign has raised nearly $50,000.
 
Hospital officials said the situation is considered uncharted territory and they want to make sure no laws are being broken with the fundraising campaign. Dall-Leighton said he's not in it for the money, but to save a life.
 
"When people have their hand out and you can give them a helping hand you should do it," said Dall-Leighton.
 
Christine Royles said, “He decided to donate before all the donations started pouring in."
 
On Friday, Maine Medical Center announced testing needed to move forward with the procedure is back on. Hospital officials said legal advice regarding the transplant is expected this week.

[Clark]

http://news.mpbn.net/post/maine-med-hopeful-about-kidney-transplant-ethics-debate-rages

Maine Med Hopeful About Kidney Transplant, as Ethics Debate Rages
By PATTY WIGHT • APR 10, 2015

Maine Medical Center is continuing to work toward a successful kidney transplant for Christine Royle, the South Portland mother whose story attracted national attention after she advertised for a donor on her car and a stranger volunteered.

But now there's a glitch over a fundraising effort for Royle's potential kidney donor, Josh Dall-Leighton. An online fundraiser was intended to cover the cost of Dall-Leighton's unpaid work leave, but donations far exceeded the initial $6,000 goal and reached nearly $50,000.

That raised legal concerns for Maine Med, which must comply with federal law that restricts compensation for organ donors.

In the U.S., more than 123,000 people are waiting for a lifesaving organ transplant - most of them for kidneys. And that number far exceeds the supply, says Laura Dempsey of the New England Organ Bank.

"On average about 21 people in this country will die waiting for an organ donation that just didn't come in time," Dempsey says. "Unfortunately, we just don't have enough organs to save everyone who's in need."

That's 21 people a day. The New England Organ Bank coordinates donations from people who have died, and Dempsey says the shortage is due to a variety of reasons. For one, not everyone is registered to be an organ donor when they die. And not everyone dies in a manner where organ donation is possible.

"The problem is, 30 years ago we thought we could solve the whole organ shortage with cadaveric organs - so, organs from deceased organ donors. And the truth is, that's never going to happen," says Sigrid Frye-Revere, co-founder of the American Living Organ Donor Fund, an organization that supports organ donors.

Thirty years ago, Congress passed the National Organ Transplant Act, which outlawed the sale of human organs, but also helped establish transplant networks. Frye-Revere says decades later there's still a donor shortage. She says she spent seven years researching the issue at a think tank called The Center for Ethical Solutions. "We discovered that so many donors couldn't donate because they didn't have a way to cover their expenses during unpaid leave."

Frye-Revere says the recipient's insurance typically covers all medical-related expenses for a donor. And there's a federal program to cover travel and lodging expenses for low-income donors and recipients.

Frye-Revere says the problem is, the compensation is just enough to get these donors in the door, and they often feel abandoned once the surgery's over, "because the government would pay their flight or lodging near the transplant center, and then send them home essentially with no money to take care of themselves while they were recovering."

Including the time they miss from work. The American Living Organ Donor Fund helps donors cover these extra out-of-pocket expenses related to their donation - on average, they give donors between $1,300 to $4,000. That is allowable under federal law.

But some donor advocates say the government should automatically cover these expenses, and maybe even pay above and beyond the costs associated with the donation.

"We could wipe out the organ shortage virtually overnight," says Jeff Rowes, a senior attorney with the Institute for Justice, a civil liberties law firm in Virginia. "I think our principal ethical consideration should be saving people's lives. And our second ethical consideration should be allowing both patients and donors to make informed decisions as adults. That's how we respect their dignity and autonomy - by treating them like grown adults."
 
Rowes says even if donors received compensation, the process would still require informed consent and extensive physical and mental screening. But Mildred Solomon, president of The Hastings Center, a research ethics institute, says making organs more of a commodity raises serious ethical issues.

"The main concern I have is, at the end of the day, it's going to be poor people who sell their organs," Solomon says. "And to call that a free choice and say it's up to them is to really ignore the financial desperation."

Solomon says she sees the long waiting list for transplants not as a failure of the current altruistic system but as a failure of the U.S. public health system to prevent diseases like diabetes that create the need for organ donation in the first place.

As for the kidney donation that Maine Medical Center is grappling with, Jeff Rowes of the Institute for Justice says the best solution now is for donor Josh Dall-Leighton to return the fundraising money that exceeds his expected costs of donating a kidney.

[Clark]

http://www.heraldonline.com/living/health-fitness/article18227963.html

Hospital optimistic after car window plea lands kidney donor

Hospital officials said they're optimistic they can overcome the remaining medical and legal hurdles in a kidney transplant case whose donor was found through an ad on a car window.

Joshua Dall-Leighton responded to a plea for a donor painted on the back of Christine Royles' car.

Royles, who's suffering from kidney failure, organized fundraisers to pay bills and reimburse the potential donor's unpaid time away from work. An online fund, set up by someone else, raised about $50,000.

The fundraising, though well intentioned, created a problem because hospitals must avoid any appearance that donors are being financially rewarded.

Still, Maine Medical Center remains hopeful it will "be in a position to perform a successful operation," spokesman Matt Paul said Friday. The hospital must determine how the rules of the National Organ Transplant Act apply to crowd-sourced donations for Dall-Leighton, Paul said. Legal advice is expected next week, he said.

It's not unusual for money to be raised to help defray costs associated with organ donation, such as missed work, baby-sitting or transportation, but those expenses usually are only about $6,000.

The director of the organ transplant program, Dr. John Vella, suggested Thursday the problem of the fundraising in Royles' case can be resolved. He said the money flowed only after Dall-Leighton, of Windham, responded to the plea by Royles, of nearby South Portland, and made an "altruistic" decision to donate a kidney.

The hospital also needs to complete testing and evaluation of Dall-Leighton to confirm he's an eligible kidney donor. Royles has an uncle in Syracuse, New York, who's a potential match, but Dall-Leighton is considered to be a stronger candidate.