A Durham woman with Amyotrophic Lateral Sclerosis encouraged lawmakers during a Monday hearing of the Public Health Committee to pass legislation allowing terminally ill patients to try experimental drugs.
Debra Gove testified on a bill permitting patients with terminal diseases to try medications, products and devices not yet approved by the U.S. Food and Drug Administration. Patients could be eligible if they have exhausted available treatments approved by the FDA and have been unable to participate in clinical trials within 100 miles of where they live.
“I am the lab rat. I am the ALS patient and I do support this bill,” Gove told the committee.
Diagnosed with ALS almost one year ago, Gove said she’s participating in a placebo-controlled clinical trial called BrainStorm. She said she did not know whether she received the experimental medication or a placebo.
“I don’t know if I got the treatment. How scary is that? I was subjected to needles. I’ve given 57 vials of blood so far. Spinal taps. You name it,” she said. Gove asked the committee to “knock on wood” that she received the treatment rather than a placebo. “Because next year I probably wouldn’t be able to walk in here and tell you this.”
The bill before the committee has support from lawmakers on both sides of the aisle. It was co-sponsored by Senate President Martin Looney, D-New Haven, and Sen. Kevin Witkos, R-Canton. Looney told the committee that recent court decisions have found that terminally ill patients do not have a constitutional right to try unapproved medications.
States have responded by passing statutes enabling patients to try the drugs. Four states — Colorado, Louisiana, Michigan, and Missouri — passed similar bills last year. Voters in Arizona approved the law through a ballot measure, Looney said. This year, Connecticut is one of at least two dozen states considering the bill, he said.
“It is a growing movement around the country,” Looney said. “… While some may argue that access to experimental treatments poses a significant risk of harm to the patient, it would seem that this danger is far less than that posed by certain death due to the underlying illness.”
Looney said the bill contains adequate safeguards to protect patients. It requires patients to give written informed consent and obtain a recommendation from the doctor treating them.
Rep. Noreen Kokoruda, R-Madison, said the bill would offer hope to people suffering from ALS, also known as Lou Gehrig’s disease. Kokoruda said many people became familiar with ALS last year as a result of the ALS Ice Bucket Challenge fundraiser.
Kokoruda said the Ice Bucket Challenge provided “education, it raised a lot of money, it did good things.” But it did not provide more treatment options for the deadly disease, she said.
“I ask each of you to imagine anything in your life, being told there are no options. I think what this bill does, is it offers options,” she said.
Doctor and state Rep. Prasad Srinivasan, R-Glastonbury, said there is a “fine line” between providing adequate oversight for experimental drugs and providing terminally ill patients with hope of survival.
“So with proper monitoring and oversight, I think in our armamentarium there is a role for these drugs to be used as well. This will be a very important discussion and debate as we move forward,” he said.
Some supporters of the legislation call the proposal a “Right to Try” bill. The name invites comparison to the so-called Right to Die bill, another proposal the legislature is considering, which would allow doctors help terminally ill patients end their own lives.
Stephen Mendelsohn, a member of a group opposing the latter bill, testified in support of the experimental drug proposal.
“Even if the majority of these experimental drugs prove not to be advantageous, [the bill] offers people who desperately need hope the means to go on and fight to live,” he said.