Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: FRIDAY, January 21, 1994 TAG: 9401210326
SECTION: CURRENT PAGE: NRV-1 EDITION: NEW RIVER VALLEY
SOURCE: By BRIAN KELLEY STAFF WRITER
DATELINE: CHRISTIANSBURG LENGTH: Long
\ In the debate over national health-care reform, it's easy to get lost in the jumble of jargon, statistics and political posturing.
But both President Clinton's Health Security Plan and the mainstream counterproposals from Republicans and conservative Democrats recognize one area of the current system in need of repair: the dilemma of pre-existing conditions.
Meet Kelly Wert.
The 22-year-old aspiring teacher needs brain surgery, and needs it soon, to attempt to control a rare and debilitating movement disorder called paraxysmalCQ choreoathetosisCQ.
For now, Wert must physically restrain her right wrist. If she doesn't, her whole arm will whip rapidly up and down. It's a continual, disturbing motion that leaves her physically exhausted and has caused her to lose weight since the fall. Her speech also is slurred somewhat. Her only relief is sleep, which doesn't come easy.
Surgery also will be no easy matter. In the simplest of terms, a surgeon will drill a hole into her skull, stick a needle into the thalamus portion of her brain and heat it with electrodes in an attempt to destroy cells that are causing the disorder.
Since her movement woes cease while she sleeps, Wert must be awake for the operation.
Wert, who graduated from the College of William and Mary in May, has fallen into a Catch-22 of the current health-care system.
Upon graduation, her family's insurance no longer automatically covered her as a dependent. So she purchased a three-month policy from Golden Rule Insurance Co. to last during her job search. She found out about it on campus through a flier targeted at graduates.
When the three months ended, Wert extended the policy. Just before the second term expired, her condition, which usually manifested itself with a barely perceptible spasm of her right hand, worsened. A Roanoke neurologist first diagnosed the rare affliction nine years ago, but it had been kept under control by drugs.
Wert sought coverage for treatment and the surgery. But Golden Rule notified Wert by letter and telephone that it would not extend coverage, according to Vickie Wert, her mother.
``They denied coverage, based on the pre-existing condition rule,'' she said.
Golden Rule officials did not return a telephone call seeking comment.
Most of the major health-care reform plans that will be considered by Congress this winter and spring call for either outlawing restrictions on coverage because of pre-existing conditions or creating a special, federally funded risk pool for people who have been denied coverage by private insurance companies.
The pre-exisiting condition bind, according to advocates of reform, is one that limits the ``portability'' of insurance and deters people from changing jobs because of fear that health coverage will be cut.
In Wert's case, attempting to restore her health is now a matter of dollars and cents.
It is frustrating for the Werts, because they believe that their daughter tried to act to protect herself, to follow the rules.
``As a parent, I'm absolutely furious,'' Vickie Wert said. ``It has forced us to take a look at this whole system.''
Kelly Wert said it's easy for people to ignore news coverage of the debate over universal health insurance. ``But we can't,'' she said. ``I would never have dreamed this would happen.
``I don't think there is an easy answer'' to the problems of health-care reform, Wert said. But ``I don't think we can wait for the government to provide answers.''
The cost estimate for the surgery, to be performed at New York University Medical Center, is $44,000. But Vickie Wert expects the final figure to be higher.
A family friend, Lenore Jackson, has organized a fund-raising drive with an account at First National Bank of Christiansburg. That money could expedite the surgery. (See box for details.)
``I've been overwhelmed with the generosity of the community,'' Kelly Wert said.
NYU Medical Center officials, who reduced the original cost estimate by $5,000, have told the family that they will not schedule the operation until the Werts put up $12,000 and agree to pay the balance within six months, Vickie Wert said.
The family is considering seeking a loan to cover that initial payment.
The latest intensification of the disorder has made it impossible for Kelly Wert to do anything but stay at her parents' home, read, write the occasional thank-you note to a contributor and spend time with her brother and sister.
Her days are ``not exactly action-packed,'' Wert said with a laugh. ``It's better to laugh than to cry.''
The former high school salutatorian earned a degree in secondary education and wants to follow in her mother's footsteps to a career in education. (Her father works in sales at Reed Lumber Co. in Christiansburg.) Wert, who worked as a student teacher in Gloucester County, wants to be a high-school English teacher, and until her condition deteriorated in late October had been substituting in Montgomery County schools while job hunting.
Now that goal is on hold. Remarkably, Wert is neither bitter nor sorrowful. Instead, she's downright optimistic given the circumstances.
``You cannot allow yourself to be confined to the role of the victim,'' Wert said. ``You have to act.
``This may sound odd, but I look at this as something that can be a positive experience ... [one that] builds strength, patience, independence.''
by CNB