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Brigham Robst

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Brigham Robst
Brigham was born in 1983 with two underdeveloped kidneys, so he spent much of his childhood enduring treatments and surgeries.

Still, his father, Clarence, says, Brigham was a happy person. His medical condition seemed to make him years beyond his chronological age.

"My son was like a little old man because of his wisdom," Clarence says.

He had an offbeat sense of humor that Clarence admits he didn't always get.

Nevertheless, Brigham was adored by his family, whether he was sick or well.

In 2011, he was in the hospital with lymphoma when the doctors noticed fluid around his heart. They had to get rid of the fluid before Brigham could have a lifesaving bone marrow transplant, and they knew the one drug that could do it: Bleomycin.

But there's a shortage of Bleomycin. Drug companies sometimes scale back or discontinue certain drugs because they are less profitable.

Clarence always will remember the horror he felt when Brigham's doctor explained that his son couldn't get the drug and that they would have to try a different drug that was less certain to work.

"I thought of things, I mean anything to help him get that medication, you know,  because I was told he couldn't have it," Clarence says. "I was thinking things  like, do I have to go to Canada to get this medicine?"

Where Bleomycin would have been infused with an IV, the new drug had to be injected directly into the chest.

"He said he thougt he was having a heart attack," Clarence says.

Because of his having had a kidney transplant, Brigham's immune system was suppressed, and he got an infection, which proved fatal. He died Sept. 13. He was 28 years old.

Clarence believes his son would have lived if he could have gotten Bleomycin. He also believes greed was the cause of the so-called shortage.

Capt. Valerie Jensen of the US Food and Drug Administration said her agency  has tracked shortages for the last five  years, "and we've noticed a large increase in shortages which occurred in 2010 and  we've continued to see a large number of shortages in 2011."

Jensen says the reasons vary from quality issues during manufacturing or  delivery to, "Often companies tell us when they discontinue these drugs its  because of a business decision. These drugs aren't making as much money as new agents, so unfortunately, we  see fewer firms making them."

Lawmakers in Washington D.C. are gathering information - and have proposed changes that might include requiring manufactures to notify the FDA when they  anticipate a shortage or stoppage.

"This was an executive decision," Clarence says. "How some of these people go home and kiss their kids goodnight, I don't know."

But he adds, if Brigham's death prompts government action that saves other lives, then he believes his son's death won't have been in vain.

To see a news report on Brigham's story, visit http://www.abcactionnews.com/dpp/news/health/lawmakers-meet-to-discuss-critical-drug-shortages-that-are-hurting-patients


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Brigham, a year before his death.
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