No ventilator beds for state's long-term patients

By Mary Wade Burnside
Times West Virginian



FAIRMONT - Kenneth Black is a Vietnam veteran from Marion County whose amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, will require him to be on a ventilator for the rest of his life.

But even when the West Virginia Veterans Nursing Facility in Clarksburg passes all inspections and can accept more than the current eight patients, there will not be a bed there for Black.

That's because ventilator beds for long-term patients do not exist in West Virginia, because of a law that effectively put a moratorium on them about 20 years ago.

"This issue has been around since I've been here," said Delegate Don Perdue, D-Wayne, who chairs the House Health Committee. "I remember vividly when a delegate from Mercer County would get up twice a week and speak for 45 minutes about the need to fund a program such that vent beds could be granted."

While it may sound uncaring not to provide a service that some people need to survive, the Legislature has to look at the health system as a whole to determine how best to spend money, Perdue said.

"It's basically terrible that someone who gets a disease and needs vent service and Medicaid won't pay for it so they have to go out of West Virginia," Perdue said. "It's a pretty bad message to send. But I do understand the administration's point that if you use too much resources for those people, then you would have to reduce services for another group of people."

Legislation was passed in the 1980s stating that a certificate of need for a ventilator bed for a long-term patient would have to show there would be no fiscal burden on the state, said Marianne Kapinos, general counsel for the West Virginia Heath Care Authority in Charleston. This effectively made ventilator beds for long-term patients obsolete.

"If someone wants to change it, it would take a statutory legislative change," she said.

Legislators familiar with health issues, including Perdue, expressed frustration with the situation, but also noted that while something might change as they begin to explore ways to overhaul the state's health system, nothing will be happening soon on the issue.

In the meantime, several patients a year either must leave the state where their friends and family reside in order to live out their lives with a ventilator, or be cared for at home by family with limited access to professional help.

After a year of struggling with the issue, the Black family has chosen the latter route. After training, Cynthia Black and her daughter, LaShawna, will care for Kenneth in Cynthia's home, learning how to take care of the ventilator and do dialysis that Kenneth needs.

Kenneth Black has been in three hospitals in the past year. Until last February, he lived at Cynthia's home in Grant Town, after he began to experience symptoms eventually diagnosed as ALS.

When he contracted pneumonia a year ago, he was admitted to Ruby Memorial Hospital in Morgantown, where he was placed on a ventilator.

Eventually, his family began to search for a long-term placement for him but were told that he would need to be sent out of state to a nursing home in Ohio.

That did not appeal to Cynthia Black, who was considering quitting her job as a patient service representative at University Health Associates so she could follow her brother to Ohio.

But after a reporter called Sen. Jay Rockefeller's office, she learned Kenneth would be moved to the VA Pittsburgh Healthcare System (VAPHS), an acute-care hospital that would not provide a long-term solution.

The move allowed Cynthia Black to keep her job but she could not visit her brother as often as she had when she worked right next door to Ruby. Then, last fall, the family begin to face the same situation again when a decision had to be made on where to move Kenneth for a long-term placement.

LaShawna Black, a student at West Virginia University and a member of the women's track team, wrote to area politicians for help and also started a petition to ask that ventilator patients be allowed admittance to nursing homes in West Virginia. She has gotten 500 signatures so far.

After a few months, the decision was made to move Kenneth to the Louis A. Johnson VA Medical Center in Clarksburg, also an acute-care facility and therefore a short-term placement. The move finally took place late last month.

However, the family expects this to be the last move before he comes home to be cared for by his family.

"We'll be trained on how to do the home dialysis and how to work his vent," Cynthia Black said. "They will give us a number to Ruby and we can call that number" if there is a problem.

"But we'll be on our own. I'll try to see if we can get some basic help, like a nurse that can come in two days a week to check his vital signs. But we will do everything ourselves."

While preferable to moving out-of-state, the solution is not a perfect one. Cynthia Black still will have to quit her job, and Kenneth cannot be left alone.

"There will be somebody at the house 24/7," Cynthia Black said. "Even if I have to go to the doctor or go to the store, there will be somebody there to give me time to get out and get back."

No one has exact numbers on how many other patients and their families deal with this situation in West Virginia. But Perdue said that at point, he had a figure of 72 ventilator patients in a five-year period that had to go to Ohio.

Determining the cost of a ventilator bed also can be difficult, because it changes from state to state and there are no current figures in West Virginia. Costs considered not only include the actual machine, but also the price of staffing and maintaining them.

In Pennsylvania, the Medicaid reimbursement rate for a vent patient in a nursing home last summer was $543.99 and for Medicare, the figure is $586.99, according to Alison Delsite Everett, spokeswoman for the Pennsylvania Health Care Association.

One figure given by more than one source for what the cost would be in West Virginia was $800 a day.

"That's our best guess of what it would cost," said Shannon Landrum, spokeswoman for the state Bureau for Medical Services, which includes Medicaid. "But we do have the caveat of what are you going to measure what counts as the cost? What are we comparing and what are we measuring? We're still trying to sort that out."

Legislators currently are examining the state's health system and what can be done to make improvements. Sen. Roman Prezioso, D-Marion, noted that a private health care consultant has been hired to provide a report.

"He just started," Prezioso said. "He's going to work with persons from business and labor to identify their particular needs and do a comprehensive study and report back to us."

One method that has been considered for allowing nursing homes to apply to have ventilator beds has been to try to drop them as an item that would require a certificate of need from the state Health Care Authority.

"We studied certificate of needs in the interim and basically the answer came back that we need to continue to look at it," Perdue said.

Legislators worry that any changes they make will have a domino effect on other services, and therefore, want to examine the entire health care system.

"When you start making those changes, you have to study it to see what kind of effect it would have," Perdue said.

In the meantime, Kenneth Black is closer to home and his sister will not have to drive to Pittsburgh on weekends to see him.

"He's doing much better," Cynthia Black said right after her brother had been transferred. "He's just glad to be in West Virginia."

E-mail Mary Wade Burnside at mwburnside@timeswv.com.

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