Legislature considers new options for terminally ill

Feb 19, 2016

Ted Harada (right) is in the General Assembly to testify on a bill allowing experimental drug treatments. He was diagnosed with ALS in 2010.
Credit Rachel Baye

State legislators are considering two proposals that would affect people facing terminal illness — specifically those with less than a year to live.

One bill, from Sen. Bryan Simonaire, a Republican from Anne Arundel County, would allow patients with less than a year to live to try experimental drug treatments.

“If [the Food and Drug Administration] has gone to clinical trial and has passed the safety trials in phase one and is going into phase two or three, a patient would have the right to use that drug if they had a doctor's note and basically had a consent form that said, here's the worst and the best scenario.”

Health insurance providers would not be required to cover the costs of the treatments or any negative effects that result.

Twenty-four states have passed similar legislation, while legislatures in another 13 — including Maryland — are considering it this year.

Ted Harada has been traveling around the country advocating for the legislation before state lawmakers. The Georgia resident was diagnosed more than five years ago with ALS, a degenerative neurological disorder known as Lou Gehrig’s disease.

While Harada was fortunate enough to get accepted into a clinical trial.

“It was a very high-risk, highly invasive trial, and they told me that it probably wouldn’t help me," he said. But "I knew how the book was going to end if I did nothing, so I wanted to try and add a few chapters.”

Following the clinical trial, Harada said, he regained some of his strength. 

But Simonaire said only about 3 percent of people who want to participate in clinical trials get accepted.

Meanwhile, Sen. Ron Young, a Frederick County Democrat, has introduced a different piece of legislation targeting patients with terminal illness. His bill would offer patients with less than six months to live the right to die. 

“I've gotten emails and letters from people who said, 'I sat there with my mother the last two weeks of her life. Horrible pain, crying, begging me to help her, and I couldn't do anything,' and the woman said, you know, I want to remember how beautiful she was, not the last two terrible weeks," Young said.

The bill has several safeguards to make sure the option isn’t abused. The patient has to ask for the drugs three times — first orally, then in writing, then orally again more than two weeks later. Two doctors must approve the request. And two people, including one who isn’t related, must be witnesses.

“If they're in horrible pain at the end and say, 'I don't want to go through this,' they can simply take the medication," Young said. "It's not assisted suicide. No one can help them. It's each person's personal choice."

But Cristine Marchand, executive director of The Arc Maryland, which advocates on behalf of people with intellectual disabilities, has some concerns about the proposal.

Marchand described situations where doctors were not willing to perform medical procedures on patients with intellectual disabilities. 

"For example, somebody with Down syndrome ... needed a transplant, a lifesaving transplant that would have been given to somebody else," she said. "The doctor saw a person with Down syndrome and said their quality of life is reduced and it's not worth doing this.” 

She said that people with intellectual disabilities are also likely to ask for lethal drugs if they think it will alleviate a burden on their families.

"If a physician is recommending this and the family is pushing them, then we think people are very vulnerable to this," she said.

This is the second year Young has introduced the measure. If it makes it out of committee after next week’s hearing, Young said he has the support to pass it in the Senate.