Orphan Drug Act Turns 30, Helps Macon Man with Rare Disease

MACON, Georgia (41NBC/WMGT) – It’s been three decades since legislation gave people with rare diseases more options to live a better life, and one man in Macon is living life to the fullest because of it. Jameson Atkinson has a rare condition, but because of the Orphan Drug Act passed 30 years ago, his life can be as normal as possible.

Jameson Atkinson makes lots of young ladies jealous.

“Girls tell me all the time, ‘Oh my God, I wish I could have what you have so that way I wouldn’t get fat!’ And I’m just like ‘Shut up,’ he says, chuckling.

For him, not being able to gain weight isn’t all that fun. In fact, it requires a lot of daily effort. Jameson has short bowel syndrome, or SBS. He was diagnosed when he was 16.

“My small intestine knotted up and basically just killed itself off and they had to go in and take it all out.  Imagine the worst stomach ache you’ve ever had and then imagine also getting stabbed in the gut and having burning rocks on the inside, too. It’s the worst pain imaginable,” he says.

Jameson sleeps with an IV attached to his arm–for 8 hours each night, he gets his daily nutrients, since he can’t absorb the ones he needs from solid food.

“Basically I eat just for the pleasure of it.”

Jameson studied marine biology in college, but he had to stop because that major put him at a high risk of infection, due to his illness; so he switched to psychology and graduated from UGA in 2007.

SBS is a rare disease, and his situation is similar to millions of other Americans living with uncommon disorders; but because of the Orphan Drug Act passed in 1983, Jameson and others are able to get the drugs he needs to treat his condition, something that before was almost impossible.  In fact, in the last decade or so, annual sales of orphan drugs have grown by almost 26%, much faster than the growth of traditional drugs. See here.

So, Jameson can live a relatively normal life. He doesn’t worry that his IV could one day shut his liver down, he chooses not to dwell on that.

“You have to take things one day at a time, enjoy it while you can–nobody’s here forever,” he says. Things can change in the blink of an eye, and so you just have to make the most of it while you can.”