Cape mom fights for access to experimental ALS drug
October 7, 2009
http://www.news-press.com/article/20091007/NEWS0101/91007020/1003/ACC
Son suffers from Lou Gehrig’s disease
BY MAE YOUSIF-BASHI mbashi@news-press.com
Gwynne Hickman never thought she’d be making regular trips to Washington, D.C., to speak with senators and members of the U.S. Food and Drug Administration.
But two years ago the Cape Coral resident’s life changed. Her son, Erik Metzler, 30, was diagnosed with Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis. Patients usually live only two to five years after being diagnosed with the neuro-degenerative disease.
Hickman, 56, is continuing her fight. She wants the FDA to give her and the other members of the Partnership for Compassionate Use permission to make IPLEX a drug that combines insulin-like growth factor (IGF-1) and IGF binding protein 3 available to all diagnosed with Lou Gehrig’s.
"I don’t think it’s a miracle drug that will save his life, but it’s miracle enough that it will buy time and that’s enough," Hickman said. She noted that her son is too far gone to get into a clinical trial and needs to stop the progression of the disease before it’s too late.
She is a board member of PCUT, which was started by Jess Rabourn whose father has also been diagnosed with ALS. They’re asking the FDA for permission to make enough of the drug for their loved ones and others who need it. Rabourn is currently in negotiation with Insmed, the original maker of the drug. If they get the go ahead from the FDA, they’ll have to get the formula from Insmed.
Hickman made her initial visit to Congress in May. But this time she has the support of others around the country, such as Rabourn, the Founders of the Abigail Alliance, PCUT, and another woman whose husband is dying of cancer.
"We actually made a good team because we completed the whole," Hickman said.They met with Peggy Hamburg, commissioner of the FDA; Joshua Sharfstein, deputy commissioner; and seven other high-ranking officials with the administration, hoping they’d open their minds about making experimental drugs an option as a last resort for those who are struck by a life-threatening illness.
A family talked about how an experimental drug could have possibly saved their loved one from cancer. Hickman passed around photographs of her son and shared stories about how his disease has taken over his body and how IPLEX could slow down the process. The Alliance reiterated how patients and their physicians should be able to make their own choice about using promising experimental drugs.
"I left Washington feeling so empowered, Hickman said. "I really feel like I can make a difference, that this could really happen."
Frank Burroughs, 63, lost his daughter, Abigail, eight years ago to neck cancer when she was 21. That’s when he founded Abigail Alliance to help create wider access to developmental drugs for life-threatening illnesses. A drug he was trying to get for his daughter was approved by the FDA five years after she died.
He’s met with the FDA numerous times.
"It was a very different feeling than the previous eight years with the previous administration," he said of the meeting with the FDA. "We feel like we really had the FDA listening to us."
Metzler’s condition continues to worsen. He can’t swallow well and can only eat soft foods such as mashed potatoes. He’s going to have a feeding tube inserted into his abdomen in about a month to prevent him from choking.
"He doesn’t have a gagging or coughing reflex," Hickman said.
Metzler and his wife have a 3-month-old baby girl named Lilly Ann. The only way he can hold her is if his wife, Lindsay, is watching. She has to put a pillow around his waist and move his arms to cradle his baby. To feed her, his wife places the bottle into a velcro contraption that hangs over his shoulder.
Lindsay Metzler takes care of her husband while Hickman continues her fight for IPLEX.
"She’s my hero," Hickman said. "I don’t know if we’re going to get access to IPLEX in time to save my son ... but I want to make a difference in this ALS world and eventually I’ll save a person and hopefully many more."
~Best viewed with a positive attitude~