This Memorial Day weekend, FBI officials are combing Southern California and parts of Northern Mexico in search of Daniel Hauser, a 13-year-old from Sleepy Eye, Minnesota who has Hodgkin's lymphoma. Authorities believe Hauser and his mother fled to the area after a Minnesota judge ordered his parents to consent to treating him with chemotherapy on May 14. Hauser's parents claim they're part of an obscure Native American religion called Nemenhah, which eschews chemo and radiation in favor of natural remedies (though there's some indication Hauser and his parents may actually be reacting to a relative's fatal reaction to chemotherapy).
Hauser's case presents some interesting and difficult ethical questions about balancing parental rights with protecting children from potentially deadly parental decisions. Hauser's doctors say that with treatment, he has an 85 percent or better chance of beating the cancer. Without it, he'll likely die.
But even as federal authorities went on a continental manhunt for Hauser this weekend, another issue concerning human rights and medicine is making headlines in Minnesota. Two days ago, Gov. Tim Pawlenty vetoed a relatively tame bill that would have allowed terminally ill people to use marijuana to alleviate pain in their final days. The bill didn't allow patients to grow their own marijuana, and didn't even allow for non-terminal cancer patients to use the drug to treat the nausea associated with chemotherapy, which, as Reason's own Jacob Sullum noted last week, is "remarkable…since this is one of the most common and best validated medical uses for the drug."
Yet in a fit of doublespeak, Pawlenty vetoed the bill while at the same time proclaiming his "empathy for the sick," to which the Marijuana Policy Project's Bruce Mirken replied, "He just thinks they belong in jail if they need medical marijuana." As reasons for his veto, Pawlenty cited (poorly argued) law enforcement opposition and his own worries about "expanded use" of marijuana.
It would at first appear that the two stories are inconsistent: The state of Minnesota is forcing Daniel Hauser into chemo because he isn't old enough to decide his own course of treatment, and because his parents' claimed moral opposition to chemotherapy is irrational. Yet at the same time, the state will forbid Hauser from smoking marijuana to offset the effects of said chemo because, despite research showing marijuana's clear benefits in that area, the state has a moral obligation to prevent people from smoking marijuana. Science should trump belief. Except when it doesn't.
But the two positions are consistent in one important way—perhaps the only way that really matters: The government, not sick people or their parents, gets to make the decision.
When it comes to medically useful drugs that also have psychoactive properties, that's par for the course. Stopping people from getting high always takes precedent over patient care, usually because it's politicians and law enforcement officials—not medical professionals—who write and enforce the laws.
The DEA's decade-long assault on opiod painkillers is perhaps the best example. Because some people get high off of drugs like OxyContin and Percocet, the DEA has determined that political appointees and drug enforcement officials—not medical professionals—will determine what courses of pain treatment are medically acceptable. Consequently, high-dose opioid therapy, a promising and once-emerging method of treating chronic pain patients, has effectively been strangled in the cradle. Doctors are too afraid of getting arrested to administer it.
And it goes beyond psychoactive drugs. Earlier this month, The New York Times ran a front page article about the excruciating battles terminally ill people and their families face to get access to potentially lifesaving drugs not yet approved by the FDA. Even when the companies developing the drugs are willing to provide access, getting a "compassionate use" exemption from the federal agency can be a nightmare. Even if patients are successful there, their efforts can be hampered by complex patent and liability laws.
Last year, the Supreme Court refused to hear the case of Abigail Alliance v. Eschenbach, thus allowing to stand a U.S. Court of Appeals for the District of Columbia decision ruling that the FDA has the power to deny potentially lifesaving drugs to terminally ill patients—even when the only remaining questions center on the drug's efficacy, not its safety. So let's say your spouse dies just months before the FDA finally gets around to approving a drug that later cures people with his or her disease. Tough luck. After all, acknowledging that freedom of association and contract allows private citizens to purchase potentially lifesaving drugs from private companies before government approval could undermine the FDA's regulatory power. And we can't have that.
In other words, policies governing how and when we give sick people access to the medication that could mitigate their pain, ameliorate the side effects of their treatment, or even save their lives, aren't based on compassion, individual rights, or even an honest assessment of science and risk. Instead, we have a patchwork of laws and enforcement policies driven by decades-old drug war hysteria, pharmaceutical paranoia, irrational aversion to risk, bureaucratic turf wars, and, of course, politics.
All of which means that you don't really have much say about what drugs you put into your body, whether you're seeking to alter your state of mind, dull excruciating pain so you can function day to day, or even to prolong (or, for that matter, to end) your life.
These decisions are far too important to let individuals make for themselves. Better that someone like Tim Pawlenty make the decision for them.
Radley Balko is a senior editor at Reason magazine.