As veterans die while waiting for organ transplants, Texans lead fight to fix VA policy
When Charles Nelson — a disabled Army veteran from Leander — learned he would need a kidney transplant, his son volunteered.
Coty Nelson, 28, was a perfect match. And the Nelsons qualified for a program called Veterans Choice that let them receive care at a local facility instead of traveling out of state to a Veterans Affairs transplant center.
But Coty isn’t a veteran — so that means they couldn’t get coverage under the program. Other veterans seeking transplants from civilians also have been affected, and Rep. John Carter, R-Round Rock, has introduced a bill in Congress to allow coverage for civilian-to-veteran transplants.
“We got the donor. We picked out the hospital. Everything was wonderful,” said Tamara Nelson, Charles Nelson’s wife. But just before the surgery was scheduled to take place, the Nelsons were informed their request for coverage was denied.
Tamara thought it was a mistake. While waiting for the VA to respond to her requests, Charles Nelson, 48, was hospitalized with a life-threatening infection. He recovered but went on dialysis and his condition worsened. At that point, the Nelsons realized their coverage under the Veterans Choice program had been denied.
“My first reaction was disbelief,” Tamara said. “And then into anger, and then, ‘This is not going to happen.’ One way or another, he was going to get the transplant.”
The Nelsons decided to pay for the surgery with Medicare and assistance from the hospital, which donated some services. Later, the VA apologized and agreed to cover the deductibles from the operation.
But what happened to the Nelsons was not an isolated incident.
The number of veterans who have died waiting for a transplant is “in the thousands,” according to estimates by self-proclaimed whistleblower Jamie McBride, the program manager for solid organ transplantation for the South Texas Veterans Healthcare System. Since 2012, McBride has been working to expose issues with transplant policy, taking his concerns to the the offices of the inspector general, medical inspector, and secretary of veterans affairs.
In February, Carter introduced the Veterans Transplant Coverage Act that would authorize the VA to cover transplants from live donors regardless of whether the donor is a veteran. It also ensures that this coverage will apply to operations at VA and non-VA facilities.
“I’m proud to fight on behalf of warriors like Charles Nelson. The role of the VA is to care for and serve our Veterans, not make things more difficult,” Carter said in a news release when he filed his bill. “No veteran should be denied a life-saving procedure due to bureaucratic red tape under the VA Choice Program.”
Few choices under Choice
The Choice program was intended to expand veterans’ access to care through local providers if they live over 40 miles from a VA facility. President Barack Obama signed it into law in 2014.
But spokesperson Tatjana Christian said, the VA can’t fund transplants from civilian donors at non-VA transplant centers since the transplant operations require significant donor care. Under Choice, the VA isn’t authorized to cover any care for non-veterans.
“VA remains committed to ensuring veterans continue to receive high quality health care services they deserve, to include transplants when required,” Christian said, noting that the National Surgery Office has recently undertaken “a number of efforts” to improve transplant care.
Still, current policy leaves most veterans in need of a transplant with just two options — travel to a VA facility, which could be hundreds of miles away, or have the procedure closer to home and shoulder the cost without VA assistance.
Making the trip for care
For most veterans in need of a transplant, traveling isn’t feasible.
“It is no secret that veterans who are cared for through the VA system have limited resources,” said Dr. Stuart J. Knechtle, a liver transplant specialist at the Duke University Hospital who has worked with veterans throughout his career.
“When you ask them to move or travel to another state to be evaluated and live there before and after a liver transplant, that is not a practical reality for many patients,” he said.
Transplant operations involve weeks to months of care, both before and after the procedure. A lack of social support and financial resources makes the process even more difficult.
Even though veterans and families are compensated for their travel expenses, they often don’t have a source of income while at a faraway hospital.
For some families, choosing to travel for a transplant had disastrous consequences.
We’ve had patients who stayed in the hospital for 10 months,” McBride said. “It’s the spouse that stays with them. When one patient died in the hospital, the spouse went home, had lost their car, their home, and stayed in the shelter.”
For others — like Pam Moore of Big Lake, Minn. — it wasted valuable time.
Her late husband, John Moore, was infected with hepatitis C while serving in the army and needed a liver transplant. Although the hospital at the University of Minnesota was equipped to perform liver transplants, the VA would not cover the operation. Instead, the Moores agreed travel to Houston for hepatitis C treatments and wait for a transplant. He died in 2015 while waiting.
“If they would have given him the liver here, he would not have passed away,” Pam Moore said. “We waited almost eight, nine years — it’s absolutely ridiculous — and traveled back and forth from Minnesota to Houston, Texas. And they’re willing to pay for that, and for our room, but they’re not willing to have it done here. It’s a sin.”
The other option: pay up
But paying the enormous cost of transplant surgery without the VA’s assistance — which, should they refuse to travel, veterans must do — is just as infeasible.
The United Network for Organ Sharing estimates live donor transplant costs range from $262,900 for a kidney transplant to $577,100 for a liver transplant, the operation that could have saved John Moore’s life.
“For most people, that’s not affordable,” Knechtle said.
Source: Dallas News