After a Canadian drugmaker doubled the price for the most commonly prescribed aid-in-dying drug, Washington Death-with-Dignity advocates created a cheaper new medication to help terminally ill patients who choose to end their lives under the law.
By JoNel Aleccia
Washington state Death with Dignity advocates have found a way to thwart a drug company that abruptly doubled the price — to more than $3,000 — of the lethal medication some terminally ill patients use to end their lives.
They’ve come up with a new mix of medications that induces death for about $500, said Dr. Robert Wood, a longtime University of Washington HIV/AIDS researcher who now volunteers with End of Life Washington, an advocacy group.
“We thought we should concoct an alternative that would work as well,” Wood said. “It does work as well.”
Now doctors in Oregon have adopted the drug mix, too, as a way to ensure that cost doesn’t prevent terminally ill patients from making the choice they want under the state’s right-to-die law. And in California, where a similar law takes effect later this year, officials are considering it as well.
“We’ve always had the belief that no matter who you are, whether you’re rich or poor, you should have access to a lethal dose of medicine that does what you want: to end your life in a peaceful and dignified manner,” said George Eighmey, president of the board of the Death with Dignity National Center, based in Portland.
The issue arose last year, when Valeant Pharmaceuticals International of Quebec acquired the rights to Seconal, the trade name of secobarbital sodium, the most commonly prescribed drug for aid-in-dying patients. The firm quickly doubled the cost, from $1,500 to more than $3,000 — and up to $5,000. That’s on top of previous retail price increases for the nearly 90-year-old sedative that once sold for $150 for a lethal 10-gram dose.
The impact on patients considering using the drugs was immediate, said Beth Glennon, a client-support coordinator for End of Life Washington.
“People were horrified. They were daunted. They thought it was criminal,” she said. “The cost increase has been significant for some people. Some are on a very fixed income.”
Some patients were worried about burdening their families with the extra expense of the medication, she said.
Health insurance often doesn’t pay for aid-in-dying drugs and they are not covered under Medicare. In Washington, the drugs aren’t covered under the state Medicaid plan or by several Catholic health systems that prohibit doctor-aided death based on religious objections.
So Wood and other doctors in the state decided to seek an alternative to the high-priced drug sold by Valeant, which is among firms under fire by Congress for hiking prices on desperately needed drugs.
They turned to a compounding pharmacist, who doesn’t have access to the exact ingredients included in secobarbital. The result was a less-expensive mix of three medications: phenobarbital, chloral hydrate and morphine sulfate, all in powdered form to be mixed with water, alcohol, applesauce or juice.
Alternative’s side effects
Last year, 55 of the 155 Death with Dignity patients seen at End of Life Washington chose the cheaper dose, Wood said. They opted for it even though the new medication tastes worse, burns the mouth and may take longer to work than Seconal.
“Roughly a third decided they’d try the untried and more burning method,” Wood said.
The other lethal drugs are bitter, often requiring patients to take anti-nausea drugs before ingesting them, he added.
Washington doctors shared their discovery with colleagues in Oregon, which was also grappling with the secobarbital price increase, Eighmey said.
In 2015, 16 of the 132 people who died in Oregon under the state’s Death with Dignity Act provisions ingested the new mixture.
Washington doctors also have been talking with colleagues in California, which passed a right-to-die law last year, becoming the fifth state to legalize the practice, along with Oregon, Washington, Vermont and Montana.
News reports last month suggested that Valeant increased the price as a reaction to California’s law, a contention rejected by company officials.
The increase came in February 2015, a month after the idea was proposed, but the law wasn’t signed by Gov. Jerry Brown until October, the firm noted.
In addition, Valeant said that secobarbital should be used for short-term insomnia, epilepsy and preoperative anesthesia and is not intended for any other use.
“The suggestion that Valeant raised the price to take advantage of a law that had not yet passed, for a use for which the drug is not even indicated, defies common sense,” officials said in a statement.
Valeant officials, along with those from Turing Pharmaceuticals, faced scrutiny in Congress this year after federal lawmakers released excerpts from documents detailing how drugmakers hiked prices to wring more revenue from new medications, including lifesaving drugs.
“Many companies are lining their pockets at the expense of the most vulnerable families in our nation,” Rep. Elijah Cummings, D-Maryland, said in a statement after releasing documents from Valeant and Turing Pharmaceuticals before a hearing on rising drug prices.
Valeant bought two lifesaving heart drugs, Nitropress and Isuprel, then tripled the price for one and increased the other sixfold, The Associated Press reported.
Under Death with Dignity law provisions, it’s up to doctors to choose and prescribe the drugs used to end patients’ lives, Eighmey said. Seconal became the drug of choice when Oregon’s law took effect in 1997 because it was used in the Netherlands, which provided a model for the first U.S. effort.
The drug was a popular sedative widely misused in the 1960s and 1970s, when it was associated with accidental overdoses, Eighmey explained.
It went off-patent in the early 1990s and some generic versions became available. But the drug fell out of favor as other sleeping aids, including Ambien, grew more popular. Because of the drug’s dwindling market, there were no generic competitors when Valeant acquired it and increased the price. Valeant reported the firm has sold only 1,000 units of Seconal since acquiring the brand in February 2015.
New drug of choice?
In 2014, 176 terminally ill patients in Washington received prescriptions to help end their lives and 170 died, according to the state Health Department. Of those who took medication, about two-thirds used secobarbital. The Washington act, which went into effect in 2009, allows terminally ill patients with less than six months to live to request lethal medications from their doctors.
The remaining patients used pentobarbital, a sedative used in death-row executions that became hard to get after European drugmakers cut off the U.S. supply to protest the practice.
As of 2014, at least 725 adults with terminal illnesses had chosen to end their lives with a doctor-prescribed dose of lethal medication in Washington. State figures on Death with Dignity Act patients for 2015 will be released this summer, officials said.
With stored supplies of secobarbital dwindling and the price remaining high, Washington’s concoction may become the drug of choice for most aid-in-dying patients, Eighmey said.
Most patients who end their lives under Death with Dignity provisions are educated and financially comfortable, like Ethan Remmel, a Western Washington University psychology professor and father of two who took a lethal dose of sedatives in June 2011, a year after being diagnosed with terminal colon cancer. He was 41.
The cost of the drug wasn’t a problem for their family, said his partner, Grace Wang, an associate professor of environmental studies at WWU. But she worries that financial need and a lack of insurance coverage might mean other families won’t have the option.
And the idea that a drug company would deliberately hike the price on dying patients?
“Wow, that stinks,” Wang said in an email.
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