California’s End of Life Option Act, will allow patients to exercise the right to die on their own terms beginning this June. Adult patients who have less than six months to live may obtain a lethal prescription.

Aid-in-dying, as the practice is known, was legal in Oregon, Washington, and Vermont before it was legalized in California last year. California’s law, which gained popular attention through the advocacy of 29-year old terminally ill brain cancer patient Brittany Maynard starting in 2014, was modeled after Oregon’s Death with Dignity Act. Passage of the bill was considered a major success for aid-in-dying activist groups like the Death with Dignity National Center.

Starting on June 9th, patients with a terminal diagnosis will be able to buy Seconal, the most commonly used lethal prescription, to end their lives. David Grube, a retired family doctor in Oregon and the medical direction for advocacy organization Compassion and Choices, says that Seconal helps facilitate a gentle passing with no complications.

But unfortunately, passing the End of Life Option was just the first step for terminally ill patients choosing to end their lives. The next hurdle is affording the medication.

Price gouging: a pharmaceutical company practice

One month after the initial proposal to legalize aid-in-dying, Valeant Pharmaceuticals, the company that now owns Seconal, doubled the price of the drug. Valeant bought the drug, along with several others, from Marathon Pharmaceuticals in 2015. As recently as 2009, a lethal dose (100 capsules) cost just $200; now, the cost is $3,000. There are no available generics in the United States.

Seconal (secobarbital sodium) is part of a class of drugs called barbiturate hypnotics. Barbiturates depress the central nervous system, and thus are often used for sedation and anesthesia or as anticonvulsants. After being created in the 1930s as a sleeping medication, secobarbital sodium was implicated in many cases of accidental overdose (and suicide) between the 1960s and 1980s; because of the risks, and the emergence of benzodiazepenes, physicians began prescribing it less frequently.

“Most drug companies justify such hikes by pointing to high research costs,” writes April Dembosky, a reporter for KQED, in a story produced in partnership with NPR and Kaiser Health News. “But Grube [medical director for Compassion and Choices] says that’s not the case with Seconal. It’s been around for 80 years.” Many argue that the price hike is yet another unconscionable example of greedy drug companies profiteering off the dying.

Valeant is just one of a slew of pharmaceutical companies in the United States engaged in price-gouging; the first company to draw government attention for the practice was Turing Pharmaceuticals, which bought the antiparasitic drug Daraprim in 2015 and increased the price by 5,000% overnight. Valeant has faced criticism for its extreme price hikes as well, price hikes that prompted Congress to investigate the company. On March 21, the board of directors forced Valeant CEO Michael J. Pearson.

Mick Kolossa, founding partner of Medical Marketing Economics, says that since demand for Seconal is so low, Valeant has to price it high enough that they still profit after the costs of making and selling it. And with the lack of generic competition, that incentive to raise prices ran unchecked.

Alternatives for patients

Under the aid-in-dying law, insurance companies are not required to cover lethal drugs. However, many private insurers plan to, as does Medicaid. Fortunately, there is another option for patients who aren’t covered and who can’t afford Seconal – a mixture of three drugs that costs about $400. But because it must be mixed by a compounding pharmacy, it can be difficult to procure.

With June 9th just a few months away, advocacy groups are fighting to get the price of Seconal lowered. Doing so would eliminate a significant cost barrier for suffering, terminally ill patients who wish to die with dignity.

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