Pam Cunningham will never forget how she told her 6-year-old grandson where his mommy went: "I told him people get sick and doctors can help," said Cunningham, "but some people can get very, very sick."
That account was not the whole truth. What Pam left out was that before her daughter, Lori Fedor, died at the age of 44, she first struggled to find medication that may have saved her life.
"This never should have happened. Not in this the country," Cunningham told the NBC 4 New York I-Team. "Something needs to be done,"
Fedor, a teacher from Walden, NY, had just given birth to her second child last September when the symptoms arrived. It began with vertigo, then seizures and finally a diagnoses.
"A brain tumor," said Cunningham. "Cancer."
Fedor took immediate action, enlisting the same surgeon as Ted Kennedy. The tumor was removed, but in April there was concern that cancer cells were spreading to the spine. The chemo drug Etoposide was the only drug that doctor's said would work.
"She had to start immediately," said Cunningham. "Time was of the essence."
Cunningham and her daughter spent countless hours making phone calls to pharmacies throughout New York. Everyone told her the drug Etoposide was backlogged. She was also told the drug might be on a shelf somewhere, there just wasn't a search engine that allowed pharmacists to check.
Cunningham finally enlisted the help of state Sen. William Larkin, whose staff spent many days making calls. A small supply was found in the Bronx, but it was located three and a half weeks after it was prescribed. The cancer had spread.
"She died two days later," said Larkin, a Republican who represents parts of Orange and Ulster counties. "It's a human life and that human life had a chance to be extended. We just couldn't get our hands on the medication."
Mylan, the manufacturer of the drug, confirmed in a statement to NBC 4 New York that the medication was on back order from late March to early May, the exact time Fedor needed it. A spokesperson went on to say "Mylan addressed any supply issues as quickly as possible".
Drug shortages are nothing new in the United State. Doctors and pharmacists say with generic cancer drugs like Etoposide, the problem is threefold: The expire quickly so can't be stored on shelves for long periods of time, they're complicated to make and don't make manufacturers much of a profit. In fact, according to the FDA, 118 drugs are currently in short supply for similar reasons.
"It's very frustrating. something I deal with on nearly a daily basis," said head pharmacist Brian Malone at Long Island's Winthrop University Hospital.
To keep up with the demand and ensure patients would have access to medication, Malone created a database that allows local hospitals to electronically plug in the name of a drug and see what shelves it may be stocked on.
"We no longer have to embark on a scavenger hunt in the 11th hour," said Malone.
Larkin is now calling for a bill that would create a national database and prevent tragedy from striking again. It's a nightmare Lori's mother hopes no other parent has to ever face.
"He can't understand why he can't call her," Cunningham said. "He asks: 'Well, if she's in heaven, why can I call her. Why cant I visit her. Where's heaven?' "