On the windowsill in Karen’s second floor apartment in Medford, there are smooth rocks. She's painted intricate patterns and words on them: Hope, Whole, Healing.
Karen, who asked that we not use her last name, has always been artistic. But she says she’s often not up for art projects any more.
“My brain just can't do it a lot of the time,” she said.
Karen traces her struggles to a medical saga that began more than a decade ago when she was prescribed a benzodiazepine. It’s a common class of drugs that carry known risks. Now, Karen, her family, and others like her are pushing the state legislature to pass a bill that aims to inform patients about this type of drug and limit certain refills.
For Karen, everything started after her father died and she was prescribed Klonopin. Like other benzodiazepine or benzos, Klonopin influences a neurotransmitter in the brain. Many benzos are well-known – including Xanax, Valium and Ativan – and they are used to treat things like stress, insomnia and grief.
“They work great, you know, at first,” said Karen. “They relieve anxiety and take away the uncomfortable feelings.”
But after less than a year, things started going wrong for Karen. She says she got yeast infections and intestinal problems. She had muscle, nerve and joint pain. She was dizzy, and she had anxiety – worse than before. The list goes on and on.
"It has literally destroyed my life,” Karen said. “I've had to stop working. I can't be the mother I want to be. I need a housemate to help me. I can’t make plans. I never know how I'm going to feel."
Benzos became popular in the 1960s and 70s when "anxious housewives" were prescribed Valium and other drugs, and they’re still common. More than 5 percent of adults in the U.S. are prescribed a benzo.
But benzos come with real risks. Some people become dependent, the drug can stop working, and long-term use can be a problem. And some people, like Karen, have such a hard time getting off benzos that it can take them years to taper and get rid of the withdrawal symptoms. The VA has “strongly recommended” benzos not be used routinely for veterans with post-traumatic stress disorder.
“Life after life just ruined,” said Karen, talking about those she knows who have suffered from benzo dependencies. “I mean, hopefully, temporarily, but many, many suicides. I've lost many friends.”
While benzo use has been linked to an increase in suicide risk, it’s also been linked to overdoses. A recent study of fatal prescription drug overdoses in the U.S. showed that benzos were involved in nearly a third of the deaths in 2013. Both Heath Ledger and Michael Jackson had benzos in their systems when they died.
Karen would like to see the drugs banned. But in the meantime, she and other advocates are pushing for a more limited solution: the bill that requires patients get more information. This week the Joint Committee on Mental Health, Substance Use and Recovery held a public hearing on the bill.
It requires patients who are prescribed a benzo to sign an informed consent form in the doctor's office. It would mandate that benzo prescriptions are labeled with a cigarette-style warning. It would also limit certain refills and create a special commission to study the drug and how to discontinue its use.
“Once the bill was filed, we started to hear from people not only in the Commonwealth and across the country, but around the world,” said State Rep. Paul McMurtry, who put the bill forward. “So there seems to be a desire and a need and a crying out for legislation.”
But there’s been push-back. The Massachusetts Medical Society opposes the bill. Henry Dorkin, the society's president, says that he agrees with the general principal: Benzos should be prescribed carefully. But, he said, “the current systems that are enforced are entirely appropriate and capable of dealing with some of the issues that have been raised in the bill.”
He points out that doctors are already required to take special precautions for benzos – similar to when they prescribe opioids.
At the public hearing, Edward Silberman, of the Massachusetts Psychiatric Society, testified against the bill. He said the vast majority of his patients benefit from benzos, but he often has a hard time convincing them to take the drugs because of all the horror stories.
“If this bill is passed, it will absolutely stifle prescription of benzodiazepines in the Commonwealth,” Silberman said. “Our patients are going to lose a major means of resorting their health.”
As a few other physicians testified against the bill, patients grew visibly upset. Some cried quietly, and one interrupted to say she’d never been told of the risks.
Having heard hours of testimony, the Joint Committee on Mental Health, Substance Use and Recovery now decides whether the bill should move forward.
