Fighting an incurable illness

By Meghan Patrick, contributing writer
Posted on October 1, 2007

Sophomore Amy Legget lost five family members within 10 years to Idiopathic Pulmonary Fibrosis, a disease with no known cause, treatment or cure.

As part of National IPF Awareness Week Leggett, a member of the National IPF Coalition, teamed with over forty other members of the Coalition in D.C.. She and her sister, junior Rebecca Legget, met privately with individual members of Congress over a two-day period, to discuss the disease that causes 40,000 fatalities annually.

IPF, which presently affects 128,000 people in the U.S., diagnoses approximately 48,000 new cases each year. The disease causes scarring or thickening of tissue deep in the lung, reduces transfer of oxygen to the blood, and eventually suffocates its casualties, said the National IPF Coalition’s website. IPF conditions are typically developed between the ages of 50 and 70.

“We had the specific goal of further informing Congress about the deadly disease,” Amy said.

Her sister agreed.

“Our specific goal at this point, is to raise awareness of the disease and its effects, especially to some of the people who can actually do something about it,” she said.

The Leggett family joined [the Coalition] in 2001, when their cousin, Teresa Geiger, current vice president of patient advocacy for the coalition, co-founded it, six years after the death of her father.

Charlie Norwood, the late Georgia Republican Congressman who died of IPF in February, spent the final years of his life attempting to pass Resolution HConRes178, in order to establish public recognition, his son Carlton Norwood said in an IPF advocacy letter written to Congress.

“We want Congress to pass this resolution on IPF, to recognize it as an incurable disease, so those with the disease can start to get help,” Amy said.

The current waiting period for a disability check, for those with IPF, is two years, according to the National IPF Coalition web site.

“By the time you get the check, you’re going to be gone,” Rebecca said. “We need to concentrate on raising awareness, because people won’t give money to research and the cause unless they know what it is.”

Two-thirds of IPF patients die within five years of diagnosis, reported the National IPF Coalition website.

Fourteen million dollars is the current sum annually awarded to IPF research by the US government. Cystic fibrosis, which is four times less likely to occur than IPF, is awarded 85 million dollars each year, said the National IPF Coalition web site.

“It is the goal of the Coalition, to increase this amount, at this time, to at least 25 million,” Rebecca said.

Current research shows that while there is known cause for IPF, genetic disposition may be a factor for those who have acquired the disease.

“People were surprised that my sister and I, the youngest members of the coalition, were at the conference,” Amy said. “I don’t understand that. For us, and for many people, this disease is nowhere near rare. We’re not going to take this lying down. There is no guarantee that Becca, our brother, our dad or I won’t get this disease. We have to fight. If we don’t, we will have done nothing.”

Amy looks at the coalition as a starting point.

“Grassroots efforts are where it all begins,” she said. “A barbeque, thrown by a Michigan family in their backyard, raised 40,000 dollars because the entire town showed up. We’d love to bring this cause to JMU. One of my ideas is a benefit concert. The student body is very willing to give and it’s quite big.”

Combating IPF will influence decisions that both Leggett sisters’ make, concerning their careers.

“If I’m not directly working for IPF as my career, I will still be involved,” Amy said.  “I will keep going to Capitol Hill, I will keep writing letters to Congress, until I’m 80, if I need to. Hopefully it won’t take that long.”

Rebecca agreed.

“When we were leaving DC, the cab driver asked Amy and I if we were lobbyists, I think, because we had pins all over our shirts,” she said. “I answered, ‘Only part-time right now, but we’re planning on making it full-time.’”