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Teenagers dread tests anyway, but Zachary Johnson must take this one six times a day: a glucose test for his diabetes, usually followed by an insulin shot.

“It hurts a lot,” he said.

The 16-year-old was diagnosed with type 1, or juvenile diabetes at age 11.

“In the blink of an eye my whole life changed," he said.

And his parents blame Seroquel. Zachary was 9 when he started taking it.

"His diagnosis was Asperberger’s — a mild form of autism," said Jo Johnson, Zachary's mom.

Unknown to the Johnsons, their psychiatrist prescribed Seroquel for what’s known as an off-label use. The drug is FDA-approved, but for treating schizophrenia and bipolar disorder -- not to treat what was Zachary’s illness.

The Johnsons also didn’t know what is known now about potential side effects: The association between so called second generation anti-psychotics like Seroquel and increased rates of diabetes. 

“If you already have one disease why would you want to add another chronic disease for the rest of your life?” asked Jo Johnson. “I would never have taken that chance.”

Now the Johnsons and 6,000 others are suing manufacturer AstraZeneca for not alerting patients of possible side effects. Critics charge the problem is widespread.

“The off label drug use is one of the biggest problems we face in America today,” said attorney Tommy Fibich.

They accuse big pharma of finding alternate and untested uses for existing drugs to increase sales without more costly FDA approvals.

“We are guinea pigs for unapproved use,” said Fibich.

Houston attorney Tommy Fibich is nationally known in the suits against Eli Lilly for its anti-psychotic medication Zyprexa.“It’s a $4.1 billion drug at one point in time, and I’ve seen studies as high as 66 percent of that drug being off-label, which is just incredible,” Fibich said.

Last month Eli Lilly agreed to settle 18,000 lawsuits for $700 million. They alleged patients were not adequately warned Zyprexa is linked to a higher risk of diabetes.  

While manufacturers cannot advertise drugs for off label use, doctors can prescribe them for any use.   

Pharmacist Fred Emmitt believes off label use is a good thing as a general rule.

Emmitt points out a long list of successful off-label drugs uses, from aspirin to prevent heart attacks to Viagra that saved a premature baby’s life last week to the decades-long use of quinine for leg cramps.

Supporters argue banning off-label use usurps a doctor’s and a patient’s judgment.

“At least make the decision on their own rather than have a government intervention to say these drugs are no longer available,” said Emmitt.

The FDA does regulate the marketing of drugs.  In November it sent a warning letter to AstraZeneca saying a marketing piece for Seroquel was false and misleading because it minimized certain risks including diabetes.

AstraZeneca said it has since pulled that piece and made all changes requested by the FDA.

But for the Johnsons, it’s too little, too late.  

“They can’t fix it, they can’t take his diabetes away,” said Jo Johnson. “I’d like to see it removed from the market.”

Meantime Zachary faces a lifetime of pain, discomfort and medical bills.