Man needing kidney transplant finds state program a hindrance

YAKIMA, Wash. -- Skip Rodvold's most important job these days is staying alive and healthy until he gets a kidney transplant.

Rodvold, 53, has polycystic kidney disease, an inherited disorder that caused his kidneys to fail seven years ago. He had to quit working at Snokist and go on Social Security disability, and has been on dialysis ever since.

Doctors have told Rodvold he's a good transplant candidate. But a state program intended to help him manage the disease actually set him back several years by not paying for much-needed dental care that he couldn't afford on his own.

The help should have come from the Kidney Disease Program, a state-funded plan that helps low-income, eligible clients with various costs associated with end-stage renal disease.

Transplant candidates must not have any mouth or gum disease because of the risk of infection.

Tired of waiting for help, Rodvold and his wife recently refinanced their house and used the proceeds last week to have all his teeth pulled. At $7,500, the extractions and new dentures took all the savings from the refinancing.

Transplant specialists, including patient advocates and social workers, say barriers to dental care are a major problem for organ transplant candidates throughout Washington state.

Medicare, which Rodvold receives because he is disabled, doesn't cover dental work, and dentists who will accept Medicaid can be hard to find.

"It's out-of-pocket for most people, and it's expensive," said Stacy Adams, a social worker with Providence Sacred Heart Medical Center in Spokane.

Louise Kato, a social worker with Swedish Medical Center's transplant program in Seattle, said transplant candidates get routine tests like colonoscopies to make sure their health is optimal. Dental health should be part of overall health.

"It's unfortunate that the dental piece of your physical body is considered separate and incidental," Kato said. "It's very sad."

Stressful, but educational

The journey has been long and stressful for Rodvold and his wife, Linda. At 59, she is disabled from fibromyalgia, a chronic condition with symptoms such as painful joints, tendons and muscles.

But it's also been an education.

Linda, a former bookkeeper, has made it her mission to push for more accountability from the state Kidney Disease Program. It covers some of Skip's expenses, namely his insurance premium that allows him to get dialysis.

At the Rodvolds' prodding, the state auditor examined contracts between the Department of Social and Health Services and a for-profit dialysis company that delivers services under the program.

The auditor concluded that DSHS has failed to adequately monitor contracts with kidney service providers, including DaVita Inc., an El Segundo, Calif.-based company that operates dialysis centers in the Yakima Valley.

In effect, the auditor found that the state has no way of knowing whether the dialysis centers are actually delivering the services they are billing for.

"From an accountability standpoint, a prudent person is going to at least make sure we're getting what we're paying for," said Lynda Karseboom, audit manager in Olympia.

The auditor also found that DSHS couldn't immediately verify that everyone who is getting services under the program is eligible.

The Kidney Disease Program is not for the poorest segment of the population -- their dialysis and treatment is paid by Medicaid, the state-federal program. Rather, the program is for people who fall between 200 percent and 300 percent of the federal poverty level, which is between $28,000 and $42,000 a year for a family of two.

But if people who could be getting Medicaid are instead getting services from the Kidney Disease Program, they are taking money away from people like the Rodvolds, whose combined disability income is about $30,000.

With an annual budget of just $2.17 million and up to 800 participants in any given year, the Kidney Disease Program can hardly afford to waste a cent. Most of its funding is used to pay patients' health insurance premiums and prescription drug coverage, as well as co-pays.

Lauren Johnston, the program manager for DSHS, said the number of people found to be ineligible was actually less than the auditor found, but the agency has agreed to step up its monitoring.

The program used to have a single manager, but with budget cuts Johnston said she now manages the kidney program along with at least five other programs in her division.

Costly dental work

Rodvold inherited polycystic kidney disease, which is the formation of fluid-filled cysts on the kidneys, causing them to enlarge and compromise the organ's ability to clean the blood.

His father also had the disease and died of renal failure when Rodvold was 7 years old.

He's already had one kidney removed; it weighed 8 pounds, compared with about a pound for a normal kidney.

Rodvold was placed on the kidney transplant list in 2006 at Swedish Medical Center. But the hospital subsequently notified him that he had been bumped to inactive status -- placed on hold -- because his dental health had not yet been affirmed by his nephrologist.

In 2008, Rodvold obtained an estimate and a treatment plan from a Yakima dentist to treat his gum disease. The estimate came to $8,250. The state would only agree to reimburse the dentist $2,111 -- the Medicaid reimbursement rate.

DaVita officials told Rodvold to find another dentist with lower rates, but he couldn't find one willing to absorb a $6,000 loss.

A year later, with Rodvold still needing dental treatment, DSHS changed its dental reimbursement policy to reflect usual and customary rates. In other words, someone like Rodvold could get the procedure paid if not in full, close to it.

"We realized the rate wasn't reasonable," said Johnston, manager of the Kidney Disease Program in Olympia.

No one -- not the state nor its contracted provider, DaVita -- bothered to tell the Rodvolds about the change. No one realized Rodvold went ahead and had his teeth pulled last week, paying the bill himself.

DaVita spokesman Kelsey Rood declined to discuss Rodvold's case specifically. But she said if a patient is denied services, it's not DaVita's fault.

"DaVita has no authority or role to approve or deny any claim that is processed through the KDP. As such, if a patient's medical claim through the program is denied, the patient would need to gain authorization or develop an alternative with the KDP -- not DaVita," Rood said.

After inquiries by the Yakima Herald-Republic, DSHS said that DaVita had agreed to reimburse Rodvold for the dental work. The company will then bill DSHS.

Linda Rodvold is still angry.

She said neither the state nor DaVita provided any manuals on the Kidney Disease Program that would have helped them better navigate the system. She dug them up online.

And she still believes Skip isn't getting reimbursed for all the services that qualify under the program.

Johnston said the program simply runs out of money before it can reimburse everyone for everything and thus divides the funds equally among all program participants.

For his part, Skip Rodvold praises the nurses and technicians of DaVita who care for him during his three-hour dialysis sessions three times a week. He's also counting the days until he won't need them anymore because he will have that new kidney.

Rodvold should know more next month after his next dental checkup. The average wait time for someone with his blood type -- which is highly compatible -- is one year to 18 months.

* Leah Beth Ward can be reached at 509-577-7626 or lward@yakimaherald.com.