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House OKs Bill Inspired by #SaveJosh

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RICHMOND, Va. – The House of Delegates on Tuesday unanimously passed legislation aimed at making it easier for terminally ill patients to obtain investigational drugs before they have been approved by the U.S. Food and Drug Administration.

House Bill 1750, sponsored by Del. Margaret Ransone, R-Kinsale, was inspired by Josh Hardy, a Fredericksburg boy battling a rare disease.

“This legislation was inspired by the Hardy family’s #SaveJosh campaign, as they fought to get their 7-year-old boy access to a lifesaving treatment that wasn’t yet approved by the FDA,” Ransone said.

“Josh eventually got the treatment, and he’s looking forward to celebrating his ninth birthday next month, but this fight isn’t just his and it’s not over. This legislation will give other families who have exhausted all other treatment options the opportunity to access developmental drugs that could save the life of their loved ones.”

RELATED: ‘The clock is ticking’ on Josh’s life as Fredericksburg family battles drug company

Hardy’s family sought brincidofovir, which was developed by Chimerix, a biopharmaceutical company in Durham, N.C. The company initially said it couldn’t give Josh the drug because it hadn’t been adequately tested in clinical trials and approved by the FDA. Thanks to a social media campaign that prompted about 17,500 from around the world to sign an online petition, the drug was given to Hardy to help combat an infection.

House Speaker Bill Howell, who represents the Fredericksburg area, agreed with Ransone’s comments.

“I have heard heartbreaking stories from families and patients struggling to get access to a potentially life-saving treatment and sometimes, tragically failing. This legislation will help them in their fight, and I’m proud to support it,” Howell said.

Aimee Hardy, Josh’s mother, was the main force behind the #SaveJosh campaign. She said she was hopeful that the legislation would help families in need of investigational drugs.

RELATED: Josh Hardy, Fredericksburg boy who received experimental drug, heading home

“No family should have to suffer a loss if there is a drug in existence that could make a difference,” Hardy said.

Sen. Bryce Reeves, R-Fredericksburg, is sponsoring a companion measure – SB 1222 – in the upper chamber. His bill is awaiting action by a subcommittee of the Senate Education and Health Committee.

Josh Hardy and his family keep an online journal at http://caringbridge.org/visit/joshuahardy

To monitor or comment on Senate Bill 1222, visit the Richmond Sunlight website, www.richmondsunlight.com/bill/2015/sb1222/

By Morgan White/Capital News Service
Capital News Service is a flagship program of the VCU School of Mass Communications. Students participating in the program provide state government coverage for Virginia’s community newspapers and other media outlets, under the supervision of Associate Professor Jeff South.