Maine Lawmakers May Allow Dying Patients Unproven Drugs

A former hospital chaplain who was motivated by his work with terminal patients wants to make Maine the first state in New England to give dying patients the right to use experimental drugs.

The "Right to Try" bill would allow patients to use drugs that have passed the first phase of the Federal Drug Administration approval process but remain in clinical trials.

"There are some who say it builds false hope," said Rep. Thomas Longstaff, D-Waterville, an ordained Episcopalian priest who worked for 6 years as a chaplain at hospitals in Augusta and Waterville. "My take is I think it ought to be a person's choice."

Critics, however, worry the bill would make it easier for drug-makers to sell expensive, but unproven drugs to desperate people.

The bill stipulates that doctors, hospitals and drug companies would not be held liable for any harm caused by experimental drugs, and it also does not require insurance companies to pay for experimental treatment, which would only be available to patients with less than 6 months to live.

While 24 states have similar laws on the books, although none of those are in New England. Legislatures in New Hampshire, Vermont and Rhode Island are considering Right to Try bills, according to the Goldwater Institute, a libertarian think tank based in Arizona. The group has been lobbying for Right to Try bills in legislatures around the country.

In Rhode Island, the House unanimously passed his bill last year, but the Senate did not take action before adjourning. It will be heard again in March. In addition to giving hope to people with terminal illnesses, the bill could help Rhode Island develop into more of a biomedical research hub, said the bill's sponsor, Rep. Joseph McNamara, a Warwick Democrat and chairman of the Health, Education and Welfare Committee.

"I've gotten a lot of support," he said.

Longstaff's bill will be taken up Wednesday by the Maine Legislature's Health and Human Services Committee. Some of the strongest supporters are conservative Republicans, including Sen. Eric Brakey of Auburn and Rep. Karl Ward of Dedham.

Brakey said the bill aligns with his libertarian beliefs that government should not interfere with people's right to make choices about their own health.

"When you have got nothing left to lose, why have government stand in the way?" Brakey said.

Ward said his best friend from high school died after a seven-year battle with breast cancer. As the disease progressed, he gave her money to travel to a cancer center in Texas for treatment.

"This is personal for me," he said.

At the public testimony for the bill last April, Ward read a letter written by a constituent, Geraldine Baxter, who was diagnosed with inoperable pancreatic cancer at age 84. In her letter, Baxter said the bill's passage would allow her to find a drug that would stop her tumor's growth. She also said that she had recently received a visit from staff members from a local hospice.

"I told them I felt like a quitter, and I am not one," she said.

She died at her Verona Island home on Dec. 8.

Gordon Smith, a lobbyist for the Maine Medical Association, said the group is not opposing the measure but nevertheless sees the downside. The bill could allow drug makers to prey on vulnerable people and sell treatments that won't help them, he said.

"People are willing to take unnecessary treatments toward the end of life," he said, "because people won't want to accept death as being part of life."

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