Legislation seen as 'door of hope'

Pulmonary fibrosis activist petitioning Congress for research money to study illness

By Jill Callison

DELL RAPIDS - When an ophthalmologist told Deb Lawrence that eyelid surgery would change her life, she didn't realize how prescient that statement was.

Because Lawrence learned the day after surgery that a pre-operative exam had discovered a spot on her lung.

Just days later, 55-year-old Lawrence learned she has idiopathic pulmonary fibrosis, a condition that leaves the lungs scarred and unable to transfer oxygen into the bloodstream.

And in less than three months, Lawrence has been transformed into an activist, one still coming to grips with the heart-breaking news.

"I asked the doctor straight out what kind of time frame are we looking at here, and he said five years," Lawrence says. "But another doctor said he wouldn't get too stuck on the five-year mark. So I don't know what that means. Does it mean six, seven years, does it mean I'll go 10 years before I have symptoms? Because I don't have symptoms now."

Her husband, Michael, can't talk about life without his wife. The couple will celebrate their 37th anniversary in October and have three children - Michael Jr., 36, Amy, 33, and Matt, 32 - and five grandchildren.

Deb Lawrence, a collector at Capitol Card Services in Sioux Falls, has her focus on Congress, which went back in session Monday for 20 working days.

During that time, she wants South Dakota's three congressional delegates to sign on as co-sponsors of the Pulmonary Fibrosis Research Enhancement Act of 2010. The bill would authorize $16 million in new federal funding for pulmonary fibrosis research.

She has sent letters of her own urging support of the bill, HR1079 and S3703 and is seeking the support of others.

Lawrence knows that many people know little about pulmonary fibrosis, which affects about 200,000 American a year with about 40,000 dying annually.

Compare that to invasive breast cancer, where about 207,000 new cases are diagnosed annually in women with about 40,000 deaths each year.

Pulmonary fibrosis affects more men than women and commonly occurs between ages 50 and 70. Symptoms include a dry, hacking cough, fatigue and weakness, discomfort in the chest, loss of appetite and rapid weight loss.

Lawrence, her pulmonary fibrosis caught in the early stages, has none of those symptoms.

Yet.

"Sometimes I get a little winded, especially if I walk fast, and sometimes when I laugh really hard I can hear a crackle (in my chest)," Lawrence says. "But you think those things are because you're getting older, and you're a little out of shape."

Lawrence could be eligible for a lung transplant at some point when her condition progresses. But that is something for down the road, and that is no easy procedure.

So what she's hoping is that $16 million from Congress could go a long way in helping with research.

Online research has given her information on some clinical trials that is going on, and she currently takes three doses of an antioxidant three times a day, mixing it with Dr. Pepper to make it palatable.

But current clinical trials offer little hope. A drug approved for use in Japan was rejected by the FDA in this country.

Lawrence, on hearing this, said to a doctor, "So I need to get on a plane and go to Japan?"

Her doctor realized how serious she was, but he couldn't offer her even that possibility.

"He said, 'You'd be amazed at how many people ask me that,' " Lawrence says. "But he said, 'For no more success than I've seen with that drug, I wouldn't fly over there.' "

Lawrence isn't ready to face a room full of people all dealing with pulmonary fibrosis and a related ailment, pulmonary hypertension, but when she's ready, there's a group waiting for her.

DeLores Aaron in 2008 founded a support group in Sioux Falls, which since has expanded to Rapid City and Huron.

Aaron was diagnosed with idiopathic pulmonary fibrosis in 2006. She also has pulmonary hypertension, which is high blood pressure in the pulmonary artery.

The support group meets the fourth Tuesday of every month with the next meeting Sept. 28.

The proposed bill, known as PFREA, would establish a patient registry along with paying for research.

"Education is the main thing," Michael Lawrence says.

That means not only educating the state's congressional delegation but educating the people they meet.

That is why the Lawrences are speaking out.

"I sometimes dread the idea of what's coming at me," Deb Lawrence says. "But I see this legislation as a door of hope, to maybe find a medication that will help me before I have symptoms. And if not me, maybe someone else."

Jill Callison's column runs Tuesdays and Thursdays. Reach her at 331-2307.