State eyes experimental drugs for dying patients

Published 9:20 pm Monday, February 23, 2015

By Victoria Zawitkowski

Capital News Service

Lawmakers and advocates for people with life-threatening illnesses made a final push Monday to pass legislation giving Virginians the “right to try” experimental drugs and other treatments.

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“It comes down to one thing,” said Sen. Bill Stanley, R-Moneta, “that the fundamental right to life that is granted to us by our creator, also necessarily encompasses the right to fight for your life, the right to try whatever measure necessary to live.”

He spoke at a press conference urging his colleagues to give final approval to House and Senate bills inspired by Josh Hardy, an 8-year-old boy from Fredericksburg who has been fighting cancer.

Stanley introduced Senate Bill 732, which allows terminally ill patients access to experimental treatments when all other options have failed. The bill is awaiting its third and final reading in the House of Delegates.

Stanley has a special motive for sponsoring such a measure: He was 22 when he lost his father to cancer. SB 732 also stems from the ordeal of Josh Hardy, who has battled cancer since he was 9 months old. Josh’s family launched the #SaveJosh campaign so he could access an experimental drug called brincidofovir. Josh has been cancer-free for two years now.

Aimee Hardy, Josh’s mother, joined legislators at a press conference to urge approval of SB 732 and HB 1750, a companion bill in the House. She said no family should have to go through what the Hardys have experienced.

“You need to not have to go on national TV or beg people to call the company for you or do all these things,” Hardy said. “Everyone should just have the right to try.”

Hardy was initially concerned about the language of SB 732. After working with legislators to make some changes, she feels “much better about it.”

Del. Margaret Ransone, R-Kinsale, is sponsoring HB 1750. Her bill received a unanimous endorsement from the Senate Education and Health Committee last week and is now before the full Senate.

Ransone said that as long as a drug has passed through the first phase of clinical trials, patients should be allowed to request it.

“When it comes to end-stage medical treatment, patients should have the right to pursue investigational medications if they have been appropriately informed of the risks and the possible outcomes,” Ransone said.

Frank Burroughs, president of the Abigail Alliance for Better Access to Developmental Drugs, endured a situation similar to the Hardys’ but with an unhappy ending for his daughter: Abigail Burroughs died of cancer in 2001 after being denied access to clinical trials for investigational drugs.

Burroughs subsequently launched the Abigail Alliance, which has lobbied for the issue for the past 14 years. He said he is pleased with the progress in Virginia and the country as a whole.

“What is so huge about the ‘right to try’ legislation in Virginia and the other states where it’s passed is that it paves the way for changes at the national level,” Burroughs said. “Already because of ‘right to try’ laws being passed and introduced in states, they are really paying attention on Capitol Hill.”

SB 732 and HB 1750 would not require manufacturers to provide experimental drugs to patients and physicians requesting such medicines. And insurance companies would not have to cover the cost of the experimental treatments.

The legislation would let the physician and patient go straight to the manufacturer when time is critical. This would be an option only after all treatment options approved by the U.S. Food and Drug Administration had been exhausted and two doctors agree on use of the experimental drug.

House Speaker Bill Howell of Stafford is a co-sponsor of HB 1750.

“I’m glad that the hard work of members in the House and Senate has resulted in legislation that will help Virginians in dire need,” Howell said. “I support this legislation, because once all other options have been exhausted, if there’s a treatment that holds promise, we owe it to the patients and their loved ones to let them try.”