Advocates want funding for new organs increased

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Help sought for dialysis patients
Advocates want funding for new organs increased
Extended Immunosuppressant Coverage Sought for Kidney Disease Patients
Jim Steinberg, Staff Writer
Posted: 08/29/2010 09:16:08 AM PDT

Most of us don't struggle to make time for work.

But people on kidney dialysis do.

When the kidneys fail, machines do their vital work. But it's not a streamlined process like getting gas for the car.

In-office dialysis can take four, five or more hours three times a week, as machines draw waste out of the blood.

At home dialysis takes even longer and is done daily.

And often before the next dialysis, people can feel run-down - or downright sick.

Brian Mullgrav, 45, of San Bernardino, does a good job of balancing the demands for kidney dialysis.

He was in his early 20s when he was diagnosed with Type 2 diabetes.

"I went through denial. I just started to become a crises
diabetic," he said, meaning that his body would periodically go into diabetic shock from too much sugar.

He is on a list for a kidney transplant, and hopes he can get one soon so that he can get off dialysis.

Advocates for people with kidney failure are critical of the plight of kidney transplant patients, and are calling on Congress to increase funding for people who get new organs.

Mullgrav said he lost his sight because of uncontrolled diabetes several years ago and last March, he started dialysis.

Through it all, Mullgrav continues to work full time at San Bernardino Valley College, dealing with admissions issues for veterans.

When someone younger than 65 has a kidney transplant, Medicare often will pay for three years of anti-rejection medicine. After that, transplant patients are on their own.

"They have to go back on the insurance they had previously or get some," said Lawrence Winston, a former dialysis patient who had a kidney transplant six years ago.

Winston is a volunteer for Washington, D.C.-based Dialysis Patient Citizens, a group advocating change for that practice.

Under the House version of Health Care Reform, Medicare would have paid for anti-rejection medication for the life of the organ, generally between 13 to 23 years.

But that provision was not in the Senate version and did not become part of the final legislation, said Tonya Saffer, deputy director of Dialysis Patient Citizens.

After the three-year period, transplant patients often don't find themselves in a financial situation where they can afford health insurance, Saffer said.

And they can't afford the $17,000 it takes annually to continue the transplant anti-rejection medication.

Without that medication, their new kidney will die and they will be back on dialysis, which costs about $72,000 per year, Saffer said.

Dialysis Patient Citizens and other organizations are lobbying for the passage of two bills before Congress, S. 565 in the Senate and H.R. 1458 in the House, which would require Medicare to pay for anti-rejection medicine for the life of the organ.

"This will still be needed even when health care reform is in full swing (in 2014)," Saffer said.

Last week, Jenell Bier, a staff member of Rep. Joe Baca's office, attended a presentation at DaVita Mountain Vista Dialysis Center in San Bernardino, which covered the need to extend coverage for kidney dialysis patients.

Baca, D-San Bernardino, is chairman of the House Agriculture Subcommittee on Nutrition, which is focused on preventive health care.Baca said he believes that Medicare beneficiaries deserve access to high-quality dialysis services, including medications needed to reduce the likelihood of organ rejection among kidney transplant recipients. "No one should lose a transplant because they are not able to pay for it," Baca said in a statement.

Winston, a San Bernardino resident, who was on dialysis for four years prior to his kidney transplant, said that some people, when told they need kidney dialysis to live, "let life take its toll and pass on."

Others elect to be taken off dialysis after being on it for awhile, he said.

"(Dialysis) is not something that is easy physically or mentally," Winston said. "You have to have a support base."


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