People in Georgia with a terminal illness got a little help Monday from the Health and Human Services Committee of the Georgia House, as it unanimously approved a bill to give patients a right to try experimental drugs when all other treatment options have failed.
House Bill 34, with an amendment that would prohibit patients from suing a doctor who refuses to help a person gain access to an experimental drug, now heads to the Rules Committee.
“I’m thrilled,” said Ted Harada, who has ALS and sits on the board of directors for the ALS Association of Georgia. Amyotrophic lateral sclerosis is an incurable neurodegenerative disease, also called Lou Gehrig’s disease. It afflicts about 30,000 people in the United States.
“I feel liberated,” said Ed Tessaro, who uses a wheelchair to get around because of the toll ALS has taken on him. Tessaro testified nearly two weeks ago when the bill was first introduced to the committee.
Harada and Tessaro have participated in experimental therapy involving complicated surgery to instill more than 1 million stem cells into their spines. Harada,who said he used to walk with a cane, said his symptoms have been reversed as a result of the experimental treatment. The progression of Tessaro’s disease has been slowed as a result of his treatment.
A second amendment that would have held prescribing doctors to a certain standard of care was voted down after several representatives expressed concern that arguing over language could slow down the bill or complicate it.
Tessaro told the committee members that he did not need them to protect him from a doctor or a drug.
“I don’t need to be saved in that way,” Tessaro said. “I have a fatal disease. I’m hearing a policy discussion here, and it just really bothers me.”
Rep. Ed Rynders (R-Albany) finally asked Rep. Mike Dudgeon (R-Johns Creek), who brought the legislation to the House committee, whether he wanted the additional wording.
“No,” Dudgeon said.
The bill does not force drug companies to supply or pay for a drug or therapy, and it doesn’t hold them or doctors liable if the treatment doesn’t work. It simply gives patients a right to try.
“If you’re on a plane that is going to crash, and you’ve got a parachute that hasn’t been approved by the government, aren’t you going to try to use that parachute?” said Harada. “That’s all we’re asking.”
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