Who's in Charge of Your Health?

Minnesota cancer patient Daniel Hauser, medical marijuana, and the politicization of medicine.

Radley Balko | May 26, 2009

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.

Comments

|5.26.09 @ 3:31PM|#

Who in their right mind would seek medical treatment in Mexico? You can't even drink the water.

|5.26.09 @ 3:31PM|#

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.

It does more than that actually. If patients were allowed access to unproven drugs, we would never be able to conduct the tests to determine their efficacy.

Efficacy tests rely on blind studies where some subjects receive placebos. No patient would participate in a study where the was a good chance he would not get the drug, if he could be sure of getting the drug.

I think it might be possible to replace the standard staged testing regime with statistical analysis. I'm just saying there are better reasons for not letting dying patients have access to new drugs than the concentration of power.

|5.26.09 @ 3:36PM|#

In animal studies, Graviola extract proved more effective that Chemotheraphy for some lymphomas, but since it is a relatively safe thing to self-administer, and since it cannot be patented, the Cancer Industry cannot make money with it; therefore anyone who tries to self-treat is persecuted, like this family. There are other substances like this which work for cancer as well.

What the pharmaceutical companies like to do is to take natural substances like this, and create a patentable analogue. They then make a huge profit selling it to the hospitals. The oncologist then charges thousands of dollars to administer it in a hospital or treatment center. All the while, the FDA sees to it that those those who use the original natural substance are charged with practicing medicine without a liscense.

There is a lot of going back and forth between the top echelons of the FDA and the echelons of the big pharmeceuticals. They see the FDA as an organization to protect their turf and preserve their monoply.

Two thirds of doctors surveyed say they would refuse Chemotherapy for themselves, but if they make a good living administering it to others, they are willing to do so.

Sincerely,

Douglas Westerman
[e-mail]
AUTHOR of "Terminal Cancer and AIDS Patients; How they are getting well with Alternative Therapies; Vital Consumer Information Handbook

|5.26.09 @ 3:40PM|#

Radley looks kinda young in that photo.

Tuck|5.26.09 @ 3:48PM|#

"in animal studies." Cite please.

I agree with everything in this article, but the State is justified in protecting this kid.

If the parents could point to actual studies demonstrating the efficacy of their proposed therapy, they might have a point. However, they don't.

As a young adult, I would hope the state would protect me from wackaloon therapies like blood letting if I'm a minor, and my parents want to torture me in such a way.

Xeones|5.26.09 @ 3:49PM|#

Radley Balko just wants to get children hooked on Teh Weeds! WON'T SOMEBODY THINK OF THE CHILDREN

|5.26.09 @ 3:59PM|#

I agree with everything in this article, but the State is justified in protecting this kid.

And off we go down a slippery slope. If parents are not allowed to control the medical care given their children, then what is the principled reason for saying that the state cannot order your child put on whatever drug is being peddled to make them more tractable (Ritalin, Adderal, etc.).

An underused RC'z Iron Law applies here:

4. You aren't free unless you are free to be wrong.

|5.26.09 @ 3:59PM|#

to view a partial list of crimes committed by FBI agents over 1500 pages long see
http://www.forums.signonsandiego.com/showthread.php?t=59139

to view a partial list of FBI agents arrested for pedophilia see
http://www.dallasnews.com/forums/viewtopic.php?t=3574

New World Dan|5.26.09 @ 4:05PM|#

A couple of things about what's going on in Minnesota:

1) The Houser kid is not remotely competant to be making decisions for himself. And while the mom is rather outspoken about this, it doesn't seem like the dad is on the same page. Sometimes its hard to contradict your wife in these sorts of situations, and the judge in the case may be looking at that. And yeah, sometimes incompetant parents need to be taken away from their kids.

2) As for the medical MJ, T-Paw always bends over for law enforcement. Because conservatives are all for freedom except when they're not. If he wasn't running for president, he might have actually signed it.

|5.26.09 @ 4:10PM|#

I've got a msfresh steaming pile of shit on my lawn.

Some Guy|5.26.09 @ 4:29PM|#

Douglas Westerman
[e-mail]
AUTHOR of "Terminal Cancer and AIDS Patients; How they are getting well with Alternative Therapies; Vital Consumer Information Handbook

What Sub-Saharan African country are you the health minister of, exactly?

Waiting on the sweet release o|5.26.09 @ 4:35PM|#

After RTFA, I wonder why there are not any "back alley" doctors in my area. (Or anywhere I've been lately)

Why would one go to a doctor when they are SURE to get something other than the care they are seeking?

Boner pills OK, pain pills NOT.

Doctors are the new fucking brownshirts. And it sure seems as if their only function is to relieve you of any excess wealth the state has allowed you to keep.

Fuck em! My next appointment is with the Medical Examiner. Let that motherfucker fill out some forms.

Tuck|5.26.09 @ 4:40PM|#

"what is the principled reason for saying that the state cannot order your child put on whatever drug"

The principle is the proven efficacy of the drug or treatment. There is a difference between insisting on treating broken bones with prayer which will create life-long deformity (and basic neglect), and refusing to administer kids tylenol to your child with growing pains.

Child protection makes these sorts of decisions on a daily basis. While often abusive and over reaching, CP also pulls many kids out of crack houses and off the street.

Life is not always so neat as to fit into a box, and this MN case is one of them. Give the kid four years, and then I don't give a rat's ass if he declines chemo.

|5.26.09 @ 5:33PM|#

The principle is the proven efficacy of the drug or treatment.

Not good enough, my friend. Ritalin, Adderall, etc. are proven effective at turning rambunctious young males into tractable little desk-sitters.

Give the kid four years, and then I don't give a rat's ass if he declines chemo.

He and his mother have both declined chemo. Not sure where the Dad is.

As someone who has dealt with this first-hand, I can tell you that it is almost impossible to give chemo to someone who doesn't want it. It requires a very high degree of compliance to be effective at all.

Is he wrong to turn it down? Probably. Is his mother wrong for going along? Probably.

Is it abuse? Not in the ordinary sense of the word. Is it neglect? No. This isn't a kid whose not getting treatment because his parents don't give a shit.

Life is not always so neat as to fit into a box, and this MN case is one of them.

My point exactly. It doesn't fit into the box where the state is allowed to shove the parents aside and do something against their will and the will of the patient.

EscapedWestOfTheBigMuddy|5.26.09 @ 6:17PM|#

I imagine that we can all agree that two year olds don't get to make all their own decision and should be protected, guided, and nurtured by some set of responsible adults.

We can probably further agree that there are decisions that the guardians are not allowed to undertake, and that the greater society should be allowed to protect the kids from the guardians if they try it. (No word on the limits of that agreement yet, of course, see below)

Most of us probably figure this applies to typical eight year old as well. And maybe to physically adult individuals with the emotional and reasoning capacity of eight years to boot.

But at some point you are an adult, and you get to make your own decisions (even if they are dumb) and suffer the consequences thereof.

Now we need only answer the following questions:

* Who is responsible enough to make what decisions and how do we judge?
* What decisions can a guardian *not* make for their charge? Does it matter if the charge concurs, and again what are the limits and how do we judge?

The system as it exists is badly and total fucked up, what with 19 year olds competent to swear themselves into military service, but not to buy a beer or (it seems) take out an unsecured loan, and 16 year olds conditionally competent to commit capital crimes but not take an adult job or sign a contract.

In my opinion, the combined position of the parents and the child should overrule the government if:

1. Both the parents and the child can (separately) articulate a clear reason for the choice and demonstrate a grasp of the possible consequences and an understanding of the scientific positions on his odds (not that they believe that positions, just that they understand how the "experts" judge the odds).

2. The kid can and does do so when the parents are not around, and with the option of accepting a court appointed guardian for this choice or in general available to him.

Not that I think they're making a good choice, you understand, but because people do not belong to the government.

The Lurkee-loo|5.26.09 @ 6:18PM|#

When our son was 2 1/2 he was diagnosed with non-Hodgkins lymphoma. He went through 6 months of chemo., and is now a healthy 12 year old.

To help with his nausea we would take a couple of fat buds and gently simmer them in a stick of butter. We then spread some of this butter on his toast and jam. Not only did he have a good appetite but he actually smiled and laughed.

My husband had the thought that the docs. may find the THC in his blood work....highly unlikely, but we WERE giving our child an illegal substance. He said that if they did find it, we should just come clean and hope the docs. understood. I looked at him and told him in no un-certain terms that if that should happen we would lie, lie, lie.

It's interesting that the state would see us as responsible parents because we chose chemo. for our son, but would charge us as criminals for giving him something that helps with the side effects of that decision.

|5.26.09 @ 9:37PM|#

"""I imagine that we can all agree that two year olds don't get to make all their own decision and should be protected, guided, and nurtured by some set of responsible adults."""

That I agree, but if I created a list of who the responsible adults might be, the government would be at the bottom.

Jay|5.26.09 @ 10:03PM|#

Anyone who has true empathy for the sick would allow them to use medication that can provide them relief from symptoms of their illness.

EscapedWestOfTheBigMuddy|5.26.09 @ 10:11PM|#

"""I imagine that we can all agree that two year olds don't get to make all their own decision and should be protected, guided, and nurtured by some set of responsible adults."""

That I agree, but if I created a list of who the responsible adults might be, the government would be at the bottom.

Oh, hell yes.

Government is afterall the mechanism which has given us the current clusterfuck of inconsistent, ill-thought out laws, regulations and guidelines.

That's the easy part.

The hard part is figuring out how to manage the bit about "there are decisions that the guardians are not allowed to undertake" without empowering a bunch of busybodies as tyrants.

And how to agree on what the limits on the guardians ought to be.

flounder|5.27.09 @ 8:43AM|#

RC,

The difference between giving Hauser chemo and the cases you mention is that in this case the condition is life threatening while hyperactivity isn't. In fact I would argue that if there is a slippery slope, it goes the other way. If parents can deny life saving treatment for their child, is there anything they can't do to them?

I also feel squeamish about the government getting involved with personal health decisions, but I think a bright line can be drawn between lifesaving and non-lifesaving medical care. Children aren't property of the government, but they also aren't property of their parents.

EscapedWestOfTheBigMuddy|5.27.09 @ 10:41AM|#

Children aren't property of the government, but they also aren't property of their parents.

This is the key point and the source of all the difficulty. But it also works if you turn it around:

Children aren't property of their parents, but they also aren't property of the government.

In this instance the minor is thirteen years old.

Now when I was thirteen, I was a smartass little brat and not nearly as wise or clever as I thought I was. But I was able to hold opinions contrary to those of my parents, and understood death well enough to be scared of it.

If this kid is that together, shouldn't his input weigh in somewhere?

Guy_Smiley|5.27.09 @ 10:58AM|#

Hodgkin's lymphoma and testicular cancer are actually the only two cancers that chemo has been shown to have a significant effect on.

http://www.germannewmedicine.ca/documents/Chemo%20Australia%20Study.pdf

If it were any (non-testicle) organ cancer, then the science would be on the side of the parents.

d|5.27.09 @ 12:50PM|#

> "in animal studies." Cite please.

Tuck, can't produce these citations (since medical folks safeguard academic information, lest one of us non-M.D.'s gets his hands on some information that contradicts the medical party line), but how about some patents?

------------------------------
J.L. McLaughlin and Y.-H. Hui, "Chemotherapeutically Active Acetogenins," (bullatacin and bullatacinone) U.S. Patent No. 5,229,419, issued July 20, 1993.

J.L. McLaughlin, Z.-M. Zu, and G.-X. Zhao, "Bioactive Acetogenins and Derivatives," (Protects several new structures), U.S. Patent No. 5,536,848, issued July 16, 1996 (International Serial No. PCT/US95/07490, international date June 13, 1995).

D.C. Hopp and J.L. McLaughlin, "Use of Selectively Cytotoxic Annonaceous Acetogenins," filed February 4, 1997, P-97006.00 U.S.

D.C. Hopp and J.L. McLaughlin, "Annonaceous Acetogenins Selectively Cytotoxic Against Pancreatic Tumors," filed February 17, 1997, P-97019.00 U.S.

N.H. Oberlies and J.L. McLaughlin, "Use of Annonaceous Acetogenins to Treat Multidrug Resistant Tumors," disclosed to Purdue Research Foundation, February 17, 1997, P-97020.00.U.S..
------------------------------

Would they have filed them if Graviola were some new-agey, hippie voodoo? (Purdue University researchers, mind you.)

|5.28.09 @ 3:33PM|#

To all those who think chemo is a must remember Billy Best? His story parallels that of Daniel Hauser. But, Billy Best was able to escape and use naturopathic methods to cure his case of Hodgkin's. Billy is now a healthy grown man. Why isn't the whole libertarian community up in arms over government intrusion in Daniel Hauser's case? Next, we'll have arrests of parents who refuse to have their children vaccinated.

Mike Cann|5.28.09 @ 6:25PM|#

Interview with Billy Best regarding Daniel Hauser.

http://www.mikecann.net/2009/05/mikecannnet-bill-best-interview-part-1.html

Kathleen Hill|5.29.09 @ 1:12AM|#

ten ways to recognize whether you're living under the oppressive tyranny of a medical police state.

#1 - If an armed U.S. Marshall is posted outside your house at night -- just to make sure you don't escape "treatment" -- you're probably living in a medical police state.

Source: "Daniel was allowed to spend the night at home, but County Attorney James Olson said a deputy was posted at the Hauser farm in Sleepy Eye." (FoxNews)

#2 - If saying "I'd rather not inject my child with that poison" to your doctor results in him calling Child Protective Services, you're most likely living in a medical police state.

#3 - If a nationwide manhunt (involving FBI agents) is unleashed just to find you and drag you back to the hospital to submit to dangerous pharmaceuticals, there's little doubt you're living in a medical police state.

#4 - If you find yourself suddenly wondering if you should flee to Mexico in order to find freedom, you're probably living in a medical police state.

#5 - If doctors call the police to prevent you from visiting competing cancer clinics outside the country, that's a warning sign that you're living in a medical police state.

#6 - If your doctor claims to be practicing "integrative medicine" but then calls the police when you don't submit to chemotherapy, you're definitely living in a medical police state.

Quote from Daniel Hauser's oncologist, Dr. Bostrom: "Although I've had patients concerned about getting chemo, this is the first time I've ever had to report someone." Source: http://abcnews.go.com/Health/Cancer...

#7 - If you're blasted by the mainstream media for supporting a mother's right to protect her teenage son from an injection of toxic chemicals, you're almost certainly living in a medical police state (populated by sheeple).

#8 - If you walk into a hospital and they handcuff you, steal your child and forcibly inject him with dangerous poisons while explaining, "It's for your own good," then you're almost certainly living in a medical police state.

#9 - If the State calls you "medically negligent" for feeding your child raw foods, or medicinal herbs, or holistic diets that are free from sugar, red meat and chemical additives, then you're definitely living in a medical police state. (Fact: Parents who feed their children diets of raw, living foods have been accused of medical neglect.)

#10 - If you disagree with your psychiatrist, and in response he diagnosis you with "Oppositional Defiance Disorder" and demands you take his mind-altering psych drugs, you are absolutely living in a medical police state!

~~~~~
by Mike Adams (Health Ranger, Natural News
http://www.naturalnews.com/026345_medical_police_state_chemotherapy_cancer.html

|5.29.09 @ 3:45PM|#

It makes more sense to conduct studies wherein a new drug is compared to the standard of care, rather than placebo.

At least in the former case, patients are getting the best medicine available, and the comparative effectiveness (include therapeutic effectiveness and relative risk) can be determined. Determining that a drug is better than a placebo isn't of nearly the same value for a physician trying to choose therapeutic routes for a patient.

The addition of genotyping to these studies is also going to be invaluable, as it can reveal the source of certain adverse reactions in some patients, or explain the lack of therapeutic response in others.

The FDA is slowly, gradually moving into the 21st century, and taking these things into account. It's a mess.

|5.30.09 @ 3:16PM|#

Or, to approximately quote Sinclair Lewis:
"That you pity so much the generation after the generation which is to come, that you can look beyond those that are dying at your feet." Which is fine, I suppose, as long as those who are dying at your feet are not your relatives.

|5.31.09 @ 2:47PM|#

My son had hodgkins also, you know the curable cancer. The chemo, not the disease, is what killed him. Hauser's mom, right or wrong, was trying to make the best decision she could,for her child. She should not be harshly judged.