A Brazos Valley family who lost their four-year-old-son to cancer in 2003 was instrumental in the passing of new legislation. Because of their efforts, the Creating Hope Act was signed by President Barack Obama Monday. The act that provides market incentives to pharmaceutical companies to develop new drugs for children suffering from pediatric diseases.
Fire Station Number 1 is unquestionably a brotherhood.
“We’re just a big family," said Bryan Firefighter and Paramedic, Matt Deemer.
They’re trained to expect the unexpected while braving the worst in response to any call that comes their way. When they're not out saving lives or fighting fire, they're fixing things; but if you're anything like 25-year-old Matt Deemer, you're thinking about family.
"Since I work every third day, Jess sends a lot of pictures and videos so I can see him,” said Deemer. Just one month after his wife Jessica gave birth to their first born son Mason, he got a phone call that he says no training could ever prepare him for.
“Our doctor had called us into his office and told us the news and we were pretty devastated,” added Deemer.
At just one-month-old Mason was diagnosed with Cystic Fibrosis; a life-threatening and chronic lung disease.
“As a paramedic, it’s easy for me to go out and rescue and help people, but everything changes when it’s your own family,” said Deemer. “I just remember Mason in the hospital and he was covered in chest tubes and just holding him felt weird because I felt like I would hurt him because he was in so much pain."
Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder.
“I didn't realize the amount of medication he'd be on, treatment he'd do and the different types of treatments he'd do,” Deemer said. "We have to give him enzymes and at first, it was a little weird feeding a one month old apple sauce before breast feeding."
Mason is 15 months old today and the family continues to take every day one step at a time.
"With Mason getting sick they [doctor's] wanted to see us every month, so we're driving to Temple every month so he can be as healthy as he can be,” said Deemer.
The Creating Hope Act just signed by the President will bring families like the Deemer's hope for their little miracles like Mason.
"Its' definitely trying, but we're coping with it and dealing with it because it's kind of what we know and we're on a schedule, so it works for us,” said Deemer. "Anything would help and if it [Creating Hope Act] provides us with better medication to help him, or even provides a miracle to make him better, than we're all for it."
At the end of June the firefighters at the Bryan Fire Department raised $5,000 during a Spaghetti benefit. It was held for two of its youngest members: Mason Deemer and Isabella “Izzy” Wallace. Izzy is the daughter of Lieutenant Eric Wallace; she was born premature and weighed a little less than two pounds. Izzy had to spend her first two months in a Temple Hospital. Her family traveled daily from their home in Marlin to be with her.
“I came back from the hospital and the guys had organized the spaghetti fundraiser and I had no idea,” said Deemer. “It was very humbling and I’m just so thankful for everyone’s support because it helps beyond words.”
The Creating Hope Act of 2011 provides market incentives to pharmaceutical companies to develop new drugs for children with rare pediatric diseases, such as childhood cancers and sickle cell.
It will expand the cost-neutral Food and Drug Administration priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases. Since 1980, the FDA has approved only one new drug for treatment of childhood cancer, compared to dozens for adults. Despite this significant unmet medical need, pharmaceutical companies have been reluctant to develop drugs for rare pediatric diseases because it requires making an investment in products that are unlikely to cover the high costs associated with their research, development, marketing and distribution. Developing products for children is particularly challenging because of the difficulties associated with conducting clinical trials on this patient population.
The Creating Hope Act will:
• Expand the Priority Review Voucher program to include treatments for pediatric rare diseases, such as childhood cancers.
• Close a loophole in current law to prevent companies from receiving a voucher for products that they already market in other countries.
• Offer unlimited transferability of vouchers to create a more easily traded asset.
• Provide greater certainty to sponsors that the drug, if approved, will qualify for a voucher, by permitting them to seek a designation from FDA before they submit their new drug application.
"The Creating Hope Act "fundamentally transforms the way that drug companies look at rare pediatric diseases and compensates for market failures that have prevented any new treatment for pediatric cancer from being developed in a generation," Rep. McCaul said.