Kidney patients may face hardship

Alexa Blair's hospital bag was packed.

Her parents were set to care for her 6-year-old daughter. Blair's employer understood the 33-year-old might be away from the office for up to six months after her operation.

All Blair needed was a phone call from her transplant coordinator confirming a matching kidney and she was out the door.

Those were last week's plans.

Today, Blair's plans are in disarray, as are those of the 200 Nevadans awaiting kidney transplants through the University Medical Center's kidney transplant program.

The Centers for Medicare and Medicaid Services has told UMC that certification for the state's only kidney transplant center is being revoked, effective Dec. 3. Medicare pays for nearly 100 percent of the costs of transplants at UMC.

The move is leaving patients such as Blair, who are fighting end-stage renal disease with dialysis several times a week, with one option: travel at least 300 miles to an out-of-state facility. It's a challenge Blair is uncomfortable with because she needs to be at the transplant center within three hours of getting the notification call.

Blair also was told by her transplant coordinator that if she has the procedure outside of Nevada, she should plan to stay near that facility up to 12 weeks.

"That means my care provider would have to go with me. My mother is my care provider who also watches my daughter,'' said Blair, sitting in a recliner at Fresenius Medical Care South Pecos Dialysis.

Blair undergoes dialysis at the facility three times a week, from 6 p.m. to 10 p.m.

"I can't imagine being away from home because I am sick,'' she said.

Because of the transplant center's importance to the region, Reps. Shelley Berkley, Jon Porter and Dean Heller sent a letter to CMS acting administrator Kerry Weems expressing their "strong disagreement" with the agency's decision.

The letter, sent Friday, urges CMS to reconsider the decision.

Berkley said Monday that she had yet to hear from the federal agency.

"I asked them to please contact me immediately,'' Berkley said. "I am hopeful that the new administrator would re-examine this decision and prevent this travesty from occurring.''

In addition to the letter, Berkley said she has called Senate Majority Leader Harry Reid, as well as Clark County commissioners, about the revocation. She said her office has received dozens of calls and e-mails from current and former patients of UMC's transplant program.

Berkley has asked callers and writers to send letters to CMS.

CMS officials said Monday that they had received the letter from Nevada's congressional leaders but were not ready to respond. CMS did reiterate that the transplant center's revocation was the result of it not meeting minimum required patient survival outcomes based on surveys conducted in March and August.

The two other areas of concern include timely submission of key information about patients and living donors, and proper verification of blood type and donor identification.

According to the March and August survey reports, the hospital's actual death rate for kidney transplant recipients was more than 50 percent higher than the federal standard allows.

However, hospital officials and others say the program is unfairly penalized because one of the deaths used was a suicide in 2005. They say the suicide overlapped two reporting periods -- July 1, 2004 to Dec. 31, 2007 and Jan. 1 2005 to June 30, 2007.

Berkley said UMC's kidney transplant program has rectified the problems and its status should be reinstated.

CMS officials say arguments presented by UMC still indicate that its administration has not done a comprehensive review of other factors that caused the outcomes to be lower than expected since January 2007. Also, CMS says that UMC has not taken steps to correct issues so that deaths do not occur in the future.

Unless UMC and lawmakers can persuade the federal agency to change course, the state's only kidney transplant program is left with just two options: involuntary decertification on Dec. 3, or voluntarily withdrawing its certification by Nov. 3.

UMC Chief Executive Officer Kathy Silver said the latter course will be taken, but that UMC still plans to challenge the decision.

The problem with challenging the CMS decision is that the program will still have to close during the appeal. It can't be operational during the appeals process, said Brian Brannman, the hospital's chief operating officer. If UMC loses the appeal, then it would have to re-apply for certification, which could take a year or more.

"We're trying to get a hearing now,'' he said. "This is a very complex process with a lot of nuances. ... The situation is, these cases took place between 2005 and 2007, before Kathy and I got here.''

Ironically, Brannman said, UMC's kidney transplant team received an award this weekend for decreasing the time transplant patients are on the waiting list. UMC also just negotiated contracts with three University of Utah surgeons to perform kidney transplants at the hospital on a rotating basis.

One of the surgeons recently got his Nevada medical license.

The two other surgeons are set to get their licenses "any minute now,'' Brannman said.

The additional surgeons were needed because UMC's only other transplant surgeon became ill a few months ago. As a result of the surgeon's illness, UMC administrators inactivated the program until a new surgeon was brought on staff.

Patients were sent a letter on Sept. 10 notifying them that the program would be "functionally inactive" for 90 days, meaning it would not be accepting organs from donors or conducting any transplants.

Blair said she became concerned when she received the letter but assumed everything would work itself out. With CMS' move, she's now unsure.

"This is absolutely devastating," said Amy Allen, who underwent a kidney transplant at UMC last November. "I can't say anything negative about UMC and its transplant team. This is just not right.''

Allen credits part of her recovery to the fact that her family and friends were close after the surgery. Without them, she said, "I don't know if I would have made it'' emotionally.

Allen, 30, said she can't imagine undergoing a transplant in another state, especially with the follow-up care.

"They will have to live in that state for at least three months,'' she said.

The traveling is a concern to Blair and her family.

Blair said her insurer, Health Plan of Nevada, will pay for the transplant. Under the plan, she is allowed up to $10,000 for travel expenses. However, since she and her mother will need an emergency flight, the cost of the flight alone could use up much of that money.

What remains will probably not be enough to support two people during the 12 weeks of follow-up care, she said.

"I don't know how that's going to happen, not to mention me wanting my daughter with me,'' Blair said.

Blair's mother, Kaylin Somavia, said she would have to take a leave of absence from her job.

"This is an absolute nightmare,'' Somavia said. "We haven't even begun to figure out where she is going to have this procedure done if our lawmakers can't get CMS to change their minds.''

The CMS survey of UMC's kidney transplant programs came just after Sunrise Hospital and Medical Center consolidated its transplant program with UMC.

As of Monday, according to the United Network for Organ Sharing, 208 people were awaiting kidney transplants in Nevada.

Contact reporter Annette Wells at awells@reviewjournal.com or 702-383-0283.