Voter dying of rare lung disease confronts presidential candidates

The Des Moines woman has attended nearly 50 events with presidential hopefuls.

DES MOINES, Iowa (AP) — A little over a year ago, Kathy Stangl received a devastating prognosis: Doctors told her she had only a few months to live.

Then April came around and Stangl, still very much alive, did what comes naturally to Iowans — she started meeting presidential candidates.

“I just think we have a unique opportunity here. It’s a rare privilege to talk to everybody running,” said Stangl, a 56-year-old mother of two from Des Moines who has an incurable lung disease. “I see the caucuses as a big round-robin open-table job interview. Why should we hesitate to ask any questions?”

Stangl hasn’t hesitated, attending nearly 50 events with presidential hopefuls from both parties and talking one-on-one with several. She tells them about her illness and gives her pitch for directing more health care dollars toward research, early intervention and prevention.

Just this month, Stangl put former Arkansas Gov. Mike Huckabee on the spot.

Moving slowly with the help of a walking stick topped with a carving of a morel mushroom, Stangl arrived early to get a chair. Hundreds of people crammed shoulder to shoulder into a room in a downtown Des Moines office building, but Stangl edged through the supporters, photographers and reporters until she stood directly before Huckabee.

He greeted her. She told him of her diagnosis and a need to redirect health care spending.

“Actually, that’s what I did in Arkansas,” Huckabee said. “We started moving our whole state system toward prevention.”

Stangl asked what he would do as president to change the national health care system.

Huckabee responded that it must start with federal programs like Medicare and Medicaid.

“If we don’t set the model, then the rest of the industry doesn’t move that way,” he said.

Through all the noise and chaos generated by hundreds of people clamoring for the candidate’s attention, Stangl held Huckabee’s focus for several more minutes.

“Thank you. I appreciate your coming out today,” he told her as he moved away.

Stangl was pleased with the exchange.

“He did answer the questions,” she said. “He didn’t blow me off.”

It’s not that she’s a single-issue voter, but Stangl said people should consider changes to the health care system, and she wants more to be aware of a disease that ultimately will probably kill her.

It was 10:30 one evening in October 2006 when a doctor told her she had lymphangioleiomyomatosis, a progressive lung disease. The doctor told her she was past the upper age of life expectancy for women with the disease and she was likely to be dead by April.

More than a year after that initial word, Stangl has no explanation for her survival, although she notes that LAM is unfamiliar to many physicians. It’s frequently misdiagnosed or missed altogether by doctors who don’t have experience with the condition.

Stangl said conservative estimates are that 250,000 people, mostly women, have the disease and don’t know it. Meeting with presidential candidates is her way of spreading the word and pushing for more research.

At most events, she wears a T-shirt emblazoned with the question: Can You Say lymphangioleiomyomatosis. The shirt also notes the Web site for a foundation offering information.

“It’s a hard road,” she said. “It just isn’t on doctors’ radar screens. We’re kind of like where breast cancer was 100 years ago.”

Stangl now lives off disability payments. She also teaches classes in chronic disease management and has talked about LAM at health fairs and other events sponsored by the Partnership for Better Health, an Iowa-based group that calls for health care reform.

Natalie Battles, the partnership’s executive director, said the attention given to the caucuses enables groups and people like Stangl to shine a light on such issues.

“The eyes of the world are on us and so I think that type of attention to this issue really gives us the opportunity to elevate these messages, engage the candidates in those conversations, engage our peers and other caucus goers in those conversations,” she said.

Stangl said some candidates have been more responsive than others. Those who have experienced health care challenges themselves or in their families have been more willing to consider spending more on research and disease prevention, she said.

“I don’t know how long I’m going to be here,” she said. “I’d like some answers on the record so if I can’t, other people can hold them accountable.”