Imagine being the parents who learn their child has cancer. It is not the news any parent wants to hear.
On top of that news, mom and dad find out the drugs that doctors need to save their child are in short supply, unavailable for the required regimen.
It is an over-arching crisis in this country, one that has been going on for about 20 years, says Laura Bray, Founder of the Tampa-based national nonprofit Angels for Change. Her own daughter faced this very dilemma.
“It kept me up at night. It is really haunting.”
A business professor at Hillsborough Community College in Tampa, Bray put her knowledge of supply chain to work.
“I started with 800 numbers and was able to find the drug for my daughter and get her back on protocol, but the shortage was still in effect and I knew there were other children not being helped.”
Since starting the nonprofit, she and other volunteers have helped some 50 people nationwide struggling to find life-saving drugs with long, complicated names, which may only be manufactured by one company and are difficult to procure.
Bray says that people have found the website and reached out for help, but it has been hit or miss. So she and her band of volunteers are holding the charity’s first fundraiser, with money going to boost the website and provide information to hospitals on how patients can find help when these drug shortages become an issue.
Swim2End Shortages takes place on Saturday, Aug. 14, at High 5, Inc., formerly Brandon Swim and Aquatics, 405 Beverly Blvd. in Brandon. People can also participate remotely. The date is subject to change, depending on weather conditions. Already, the event has raised nearly $5,000 in committed pledges to raise $8,000.
Angels for Change is also doing a Champions for Change Inaugural Gala set for Saturday, Oct. 9, at the Academy of Holy Names Brady Center, 3319 Bayshore Blvd., Tampa.
Tickets can be purchased online. The evening includes dinner, dancing, drinks, entertainment and a live auction. The goal is to raise $100,000. Tickets are $125 each or $1,000 for a table of eight.
The power of moms
Laura Davis knows firsthand the importance of this charity. Her son, Cole, a football and ice hockey player, was diagnosed with leukemia at 17. She, too, found the drugs he needed to battle the disease were in short supply. She needed to procure 90 vials of Erwinaze but could find none. Jazz Pharmaceuticals, which produces the drug and gives patients a 90% survival rate for some forms of leukemia, put Davis in touch with Bray.
“I kind of block out and don’t want to think about what would have happened if I didn’t find Laura,” says Davis of Pennsylvania. “Everyone’s hands were tied, but I was going to find the drug, somehow. That somehow was Laura. She worked with the distribution company, which reached out to people who had purchased extra vials of Erwinaze and got them to return enough to treat Cole.
Today, when Bray needs help, Davis is one of the volunteers that steps up for others. In September, she will be meeting up with Bray in Washington, D.C. for CureFest, which focuses on pediatric cancer awareness. It will be their first in-person meeting.
Meanwhile, Bray says she is close, working with two drug companies -- Clinigen and Jazz Pharmaceuticals -- to end the shortage. This will create two supply sources for cancer-fighting drugs used on patients with an anaphylactic reaction to PEG-asparaginase.
Jazz is releasing a new drug to add to the mix. Jazz Chairman and CEO Bruce C. Cozadd says Angels for Change and Children’s Oncology Group made a difference.
“After listening to families and many other organizations at the center of this community … we embarked on an aggressive development path to bring a new recombinant Erwinia asparaginase option to market.”
Eradicating painful conversations
“Our goal is not to have a patient hear the words ‘we don’t have the drugs to serve you, to help you,’ and no doctor delivering those words,” Bray says. “Those words are impacting patient survival and it is an emotional, helpless feeling to be told the drug you need to survive isn’t there. We are trying to eradicate those conversations. We have measures in place to make sure the right drug is at the right place.”
The goal is to resolve these issues before the patients ever hear about shortages, Bray says.
“We are hoping to increase our website and our relationship with hospitals so hospitals would contact us to allow us to resolve the shortage together,” she says. “We need optimization of our search engine, I need to visit and make relationships with individual hospitals. The other thing we are trying to do is we would like to sponsor some research” around patient harm due to these drug shortages.
“I understand exactly what it feels like as a patient to be in the place and I understand business, so we can advocate for patients in a way that is really unique.”