Amid pain, some hope

$14 separates woman from the medication she needs to live

Editor’s note: This is part one of a four part series on the health care challenges facing the community, particularly senior citizens.

Jennifer Praiss is familiar with what it takes to defy the odds.

Twenty years ago, she was the quintessential blonde “surfer girl” in a sport dominated by men. Twelve years ago, she was diagnosed with Hepatitis C after a blood transfusion and given five years to live. In October, she was hospitalized with Acute Respiratory Distress Syndrome and survived a six-week coma.

Today, the 45-year-old Friday Harbor woman faces her biggest challenge: At Friday Harbor Drug is a bottle of Rebetron, a combination of ribavirin and Intron A used to fight Hepatitis C. It has her name on it, but she can’t pick it up.

The reason: She receives from Social Security $14 a month over the limit allowed by Medicare, so her medication isn’t covered. Without the medication, Praiss expects she won’t live past May.

“We’re at our wit’s end,” said her husband, John Praiss, 65. “There’s got to be hope out there for someone who’s almost on their deathbed.”

For the Praisses, news that Medicare won’t cover the cost of her prescription of 5-10 capsules a day — at $9.84 per capsule — was a bitter end to a long wait for the medication to become available.

In 1998, after treatment with Interferon failed to send her hepatitis into remission, Jennifer’s doctor told her of a new drug that had been developed. “He said it could cure me. It was my best opportunity for getting well,” Jennifer said.

Problem was, drug manufacturer Schering-Plough didn’t make enough of the drug for people who need it. Praiss was put on a waiting list.

This year, her number came up and the prescription was called in. “We waited for two years and it’s finally here,” Jennifer said. Then, on Feb. 15, the Praisses got the bad news: Medicare won’t cover the cost, leaving them with a bill of $1,500 a month.

The ensuing two weeks have not been idle ones. John and Jennifer have researched and made telephone calls; four companies that provide assistance say they can’t help. The state Department of Social and Health Services told Jennifer that if she were uninsured, the state would pay for her prescription.

The Praisses are applying for help with Option Care, a home health care services company that provides some assistance in meeting prescription costs. Islands Convalescent Center’s Curt VanHyning, a state-approved Statewide Health Insurance Benefits Adviser, hopes to connect the Praisses with an agency or company that can help her meet her prescription costs. Patti Omdahl, administrator of the DSHS office in Mount Vernon, said an application for assistance is working its way through the system; a doctor’s determination that Jennifer is disabled would make her eligible for full prescription coverage.

So, Jennifer waits for an answer. And the clock is ticking. “I was told I had five years to live 12 years ago,” Jennifer said. “I’m living on borrowed time.”

Jennifer’s emotions are a unique blend of faith, hope and a desire to help others.

Faith: “We all have to go sometime,” Jennifer said. “The difference is, I know when I’m going to go. When you know that, you can face God and make all your corrections.”

Desire to help others: She talks to five other chronically ill people a day on the telephone. On Mondays at 2 p.m., she participates in the Chronic Illness Support Group, sponsored by North Islands Mental Health in Friday Harbor every Monday at 2 p.m.

Hope: “I try not to get my hopes up for fear of being let down,” Jennifer said. Still, she continues researching to see if help is available.

“We know there’s something out there for us,” she said. “We’re not looking for charity. We’re looking for someone who knows where to go, what to do.”

John added, “We’re hitting just outside the target. Someone knows where the bullseye is.”

While she tries to keep her hopes in balance, Jennifer relishes the thought of being healthy again. She wants to resume her business as a specialty soap maker. She wants to see her son, Jimmy Pura, play professional baseball — he’s a star pitcher for Katella High School in Anaheim, Calif., is being coached by retired Angels pitcher Clyde Wright and is being watched by pro scouts. She wants to visit her oldest son, Thomas, a chef in Florida. She wants to be there for her 15-year-old daughter, Tara.

“I would like nothing more than to take care of my family,” she said.

Heck, if she were healthy, she might even surf again or rollerskate.

“I would do all of those things,” she said.

— Sources for this story include Schering-Plough; Norm DeGraaf, Friday Harbor Drug; Curt VanHyning, Islands’ Convalescent Center; Patti Omdahl, administrator, Department of Health and Community Services, Mount Vernon.

Making the journey easier

Finding help obtaining medication can be a daunting experience. These sources can make your search easier.

— Curt VanHyning, Islands’ Convalescent Center, 378-2117. VanHyning is the county’s Statewide Health Insurance Benefits Adviser, or SHIBA. As a state-trained adviser, VanHyning can provide information on access to health insurance, help people find the care they need, and fill out necessary forms.

“I meet with about three people a week,” VanHyning said. “If you’re employed, check with your insurance company first and find out what’s available. If you’re not employed and not familiar with resources in the community, I can help.”

— Department of Social and Health Services, (800) 735-7038, ext. 7328. Patti Omdahl, administrator of the DSHS office, said people who are disabled can get state coverage of their prescription costs if their household income is over the Medicare limit, or if the person is disabled.

The income limit for a family of three is $546 a month. If a household member is a minor, the level is $1,935.

“If household income is over the limit, the next step is to determine whether the person is disabled. We send out forms to have doctors complete, then the disability unit in Olympia determines if the condition meets the disability requirement.”

Omdahl said a disability application for Praiss is “already in the works ... We have an appointment with a doctor and a determination is in the process of being made.”

Other programs that can help meet prescription costs:

— Be In Charge Program, (888) 437-2608.

— Commitment to Care, (800) 521-7157.

— CuraScript, (866) 773-4372. CuraScript The nation’s largest privately held specialty pharmacy services company. Provides pharmacy benefit assistance.

— Option Care, (360) 756-8315, 854-7743. Option Care. A nationwide provider of home health services, with an office in Friday Harbor.

— Senior Services, 378-4474. Some of the county’s senior centers have funds to help seniors pay prescription costs.

— Local churches. Some churches have funds, such as Deacons’ Funds, to help defray costs of medication. Check the Yellow Pages for numbers of local churches.

— Editor Richard Walker reports on local government, politics and economic development for sanjuanjournal.com and The Journal of the San Juan Islands, sister publications of islandssounder.com and The Islands’ Sounder. He can be reached at (360) 378-4191 ext. 15 or email.

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