Friday, May 25, 2018
News Roundup

Hernando Commissioner Diane Rowden fights for her sister's life

SPRING HILL — County Commissioner Diane Rowden knows about problem-solving and chasing down solutions.

Her constituents seek that kind of help all the time.

But recently, Rowden has been following that same familiar course for someone who doesn't live anywhere near Hernando County.

Rowden's sister, Denver resident Dana Bennett, is dying of liver disease. Because she had no insurance coverage when she was diagnosed, Bennett had no hope of ever getting a life-prolonging liver transplant.

Even though Rowden, Rowden's daughter and a friend of Bennett have each pledged a portion of their own liver so that Bennett doesn't have to go on a waiting list, she is still not eligible.

In recent weeks, Rowden has been on a mission to change that.

"My goal is for my sister to have a long life and be able to accomplish some other things that have been goals for her,'' she said. "The 800-pound gorilla sitting on top of her is this thing called liver disease.''

• • •

Rowden's mission has taken her to the offices of the governor of Colorado, the Colorado speaker of the House, Bennett's congresswoman, U.S. Sen. Bill Nelson of Florida and the head of Florida's Democratic Party, Karen Thurman.

In addition, she has mobilized her extended family to keep Bennett's spirits high and more than 700 of her fellow retired Delta Air Lines flight attendants to provide everything from prayer shawls to a letter-writing campaign to find some way to get Bennett her much-needed transplant.

During a recent visit to Denver, Rowden got her sister signed up for the insurance of last resort for Colorado residents, a program known as Cover Colorado. But the plan requires a six-month delay before providing benefits for a pre-existing condition.

Rowden isn't sure that her older sister has that long.

She tried to get Gov. Bill Ritter to do something, but his aides said that no exception could be granted under the current state law.

That was why last week, Rowden returned to Denver again. This time, she set her mind to changing the law that created the six-month delay, at least for her sister's sake.

She had previously contacted Colorado Speaker of the House Andrew Romanoff. But on May 5, Rowden and Bennett simply showed up at his Denver office.

"I said, "Hi, I'm Diane Rowden. This is my sister, Dana. We're here,'' Rowden recalled.

Even though Romanoff was busily trying to get through the last three days of the Colorado General Assembly's legislative session, he took the time to talk to the women, and Rowden said he expressed compassion about Bennett's predicament.

Still, Romanoff said he couldn't push through an exception for Bennett, not so late in the session and not just for her case. He asked if there were others in her same position. "Dana said, 'Yeah, a lot,' '' Rowden said.

After the meeting, Rowden arranged to attend the State of the State luncheon while she was in town. The governor spoke. Rowden said if she had closed her eyes, she just as easily could have been in Florida — the same hot-button issues were being discussed.

The governor and other speakers talked about health care for those who need it but can't get it. Unable to find a solution at the state level, they voiced hope that new blood in the White House after this year's election would create a federal solution to the problem.

Rowden left shortly after, not feeling confident that there would be a simple government fix for her sister's situation, or anyone else's for that matter.

"There's such a cry out there for people that need health care coverage,'' Rowden said.

• • •

Bennett, 60, has taken antiseizure medicine called Dilantin for 42 years. That medication took its toll on her liver, and now doctors say she is in end-stage liver disease. If it weren't for the fact that she has no insurance, she would have been placed on the transplant list.

Her condition is known as primary sclerosing cholangitis, or PSC. The rare autoimmune disease brings hardening of the bile ducts, progressive scarring and finally cirrhosis and total liver dysfunction.

Bennett said she is trying to stay positive and go on with her life, marking off the six months until a transplant becomes an option. Rowden's contact with federal officials is also speeding up a chance that Bennett will get Social Security disability by the time the transplant is possible.

"I'm having to approach it on a day-to-day basis because I have good days and I have bad days,'' Bennett said.

The condition brings her bad nights, when she can't sleep, and a strange schedule. She hasn't been able to work regularly for some time. When she was working, she taught reading and writing, tutored, worked as a writer and editor, designed media, managed various media projects, and planned and organized events.

On her bad days, when she can accomplish little else, she still reads. That is among her passions.

Bennett was working on her master's degree when she first learned of her liver problem. Her dream has been to teach reading and writing at the college level.

She knows plenty of people who work in that capacity as part-time or adjunct instructors.

"They don't make a lot of money, but they are very happy,'' she said. "I want to return to that.''

At any time, the liver disease can send Bennett into chills and fever, and she has to be ready at a moment's notice to return to the hospital. She said her sister's efforts have kept her focused to keep moving forward.

"I just try to take care of things,'' she said. "Diane has helped me a lot to take care of a lot of the big things that I haven't been able to get to because the small things really add up for me.''

Those extra worries intensify the chance that Bennett will spiral into another medical crisis.

"Now we're trying to eliminate things that cause more stress,'' to keep her healthy and focused on the possibility of the transplant, Rowden said.

While Rowden, her daughter, Dayna, who is a captain and public affairs officer with the Virginia National Guard, and one of Bennett's friends are all willing to give up part of their liver, testing for a match can't happen until the waiting period is over and the insurance is available.

Overall, the transplant can cost upward of $250,000.

Rowden wants it to be her liver rather than her daughter's, but Bennett said there is some question about whether she might be too at risk because she is older. Rowden is 58.

Still, Rowden said she has read about older people donating portions of their livers, and she will push that issue, too, if she has to.

The reason is a no-brainer for Rowden.

"Because she's my sister,'' she said. "I feel it's the right thing to do.''

Bennett has been overwhelmed by the support she's found since she was finally willing to set aside her fierce independence and admit to her sister that she needed help.

"I am a little overwhelmed at the level of generosity that they are showing me,'' Bennett said of her friend and family members. "It really blows me away.''

Bennett said she has become acquainted with many others awaiting transplants who have relatives who have not made the same offer.

"And I have three,'' she said. "I'm very touched by that. I feel like a wealthy person.''

Barbara Behrendt can be reached at [email protected] or (352) 848-1434.

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