Down on the pharm

Nate Malone was born 11 years ago, nine weeks premature. At 2 weeks old, he underwent brain surgery for hydrocephalus, a condition that compressed his brain tissue. The doctors told his mother, LaDawn, that the best-case scenario would be mild retardation and cerebral palsy. “The only thing he came out with was severe ADHD,” says LaDawn. “He’s my walking miracle.”

ADHD, or attention-deficit hyperactivity disorder, is characterized by impulsivity, inattention and hyperactivity. Every kid has those in some amount, but for the ADHD child, the behavior is excessive, long-term and pervasive.

The Malones were thorough in researching how best to deal with Nate’s ADHD, and they use a combination of medication, diet and behavioral therapy to address it. But the structure of managed care and health insurance and the influence of pharmaceutical companies on drug research make it harder for families to explore all their options when it comes to treating ADHD. Diagnoses are often rushed (less than 20 minutes), non-medicinal treatments aren’t always covered by insurance, and research is often funded and published by drug companies with a bias toward, well, drugs. Many families have to dig heavily into their own pocketbooks to get a thorough diagnosis and treatment for their child—something not all families can afford. And yet rising numbers of kids in Northern Nevada and across the nation are being prescribed medication for ADHD.

Ritalin is no longer the only name in the game; kids are being prescribed a host of newer, longer lasting stimulant medications as well as antidepressants. Most ADHD drugs are not recommended by the Food and Drug Administration for children under the age of 6, and few studies have been conducted on their effects on children and teens. Nevertheless, Medco Health Solutions data showed ADHD drug prescriptions for preschoolers went up 49 percent between 2000 and 2003.

Medco also showed that behavioral medications for kids topped all other areas of drugs in 2003, at 17 percent of total spending.

Antipsychotics—drugs originally intended to treat schizophrenia and other psychotic illnesses—are increasingly used to treat ADHD. A June 2006 study published in the Archives of General Psychiatry and reported in the New York Times found the annual number of children and teens prescribed these drugs “increased more than fivefold from 1993 to 2002″—from 2.75 per 1,000 kids in 1993-95 to 14.38 per 1,000 in 2002.

In Northern Nevada, prescriptions of the stimulants Ritalin, Adderall and generics of those medications used to treat people of all ages with ADHD rose by 26 percent between 2000 and 2005, according to the Nevada State Board of Pharmacy.

In the 2005-06 school year, the Washoe County School District determined there were 2,428 students diagnosed with ADD or ADHD, which is 3.8 percent of total enrollment. That’s only slightly more than six years earlier, when 3.7 percent of the student body had the same diagnosis. Those numbers line up with what’s considered the true prevalence of ADHD, between 3 and 7 percent.

Ain’t misbehavin’
The debates about ADHD are many, and a number of them are represented within the Malone’s home in Washoe Valley, where LaDawn lives with her husband and their young sons, Nate and Travis.

LaDawn noticed something was wrong when Nate was 3 years old. “He never sat and played with toys; he never sat and watched TV; he never sat, period,” she says. The kids in the daycare she runs from her home would shun Nate because he would “walk up and smack somebody—more than the normal kid stuff.”

Nate, an articulate, polite child, says, “Before [I went on medication], I’d go up and whack somebody or pinch somebody for no dang reason at all. I felt left out and stuff, and I didn’t know it was because I was misbehaving. I thought it was everyone was just rejecting me. Then, on the medication, I started making friends, and people started actually liking me.”

The Malones were against medication at first and tried everything to keep Nate from having to take it. LaDawn researched attention disorders and read that allergies or other dietary problems can sometimes exacerbate or mimic symptoms of ADHD. (This idea hasn’t established full credibility in the scientific community, but anecdotal evidence points to its likelihood.) The Malones found that red food dyes do “horrible things to him” and make him hyperactive. They took dairy, wheat, food dyes, sugars and sweeteners out of his diet at various times. “None of that really worked,” says LaDawn. What did help calm Nate was protein and, surprisingly, caffeine (stimulants in a truly ADHD child typically have a calming effect, which is why they’re prescribed in tablet form). They try not to give him much caffeine, but it tends to make a good substitute (as does a bean and cheese burrito or spoonful of peanut butter) when he can’t get to his medication. LaDawn also read books on behavior modification. “A lot of this stuff can really be helped by the way you discipline, the way you help them learn by treats or rewards—it really does,” she says.

But it still wasn’t enough. Nate was diagnosed with ADHD and took his first medication for it before he was 6 years old.

LaDawn says before they put him on medication, it took Nate some three hours to write his alphabet from A to Z. On the first day of taking Adderall (a stimulant), he wrote his alphabet in about two minutes. He also began to color and make elaborate Lego creations—two things he never did before that day. Adderall seemed to be the drug for him, but his body metabolizes it so fast it began to lose effect, and he’s now taking a six-month hiatus from it. He recently went through three different medications in three weeks to find one that works (methylphenidate, a derivative of Ritalin). He also takes Tenex because he “hyper-focuses on fears,” says his mom, who says the combination is working well.

“When I’m not on my medication, I feel like I have no self-control, and it’s hard to behave,” says Nate. “My mom tells me to do something that’s just small, and I get really mad about it and don’t want to do it and throw fits and stuff—basically act like a 2-year-old.”

LaDawn’s other child, 8-year-old Travis, was having trouble at school, too, and the school suggested he be tested for ADHD. It turned out he doesn’t have ADHD, but he tested at genius level. According to Dr. Bonnie Cramond, a psychology professor and expert in giftedness at the University of Georgia, kids with ADHD and kids who are geniuses often share similar characteristics. Both tend to question authority, become restless or disruptive in class, be more active and sleep less than “normal” children.

“Any little kid that’s hyper, they cry ADHD,” says LaDawn. “But there are kids out there that do need meds.”

While checking the family history for Nate’s diagnosis, LaDawn was also diagnosed with ADHD. She doesn’t take medication for it, having learned other ways to cope with it during her 37 years. “I don’t think—and it’s my own personal opinion—I don’t think everyone needs medication for it,” she says. “Some people are able to cope and are able to figure it out. … I think some kids need parents who know how to discipline correctly or at all, but I definitely know there are kids that do need it.”

Buying the pharm
There’s little disagreement within the scientific community that ADHD is a real disorder requiring medical treatment. The debate is mostly about what kind of treatment that should be; namely, are too many doctors putting kids on drugs without considering other options first? Misdiagnosis is also a concern—could the child be a genius and therefore bored and inattentive with too easy schoolwork? Could a different health or social problem be causing the behavior? Then there’s the more abstract idea that perhaps this medication is wiring children to perform in an ultra-performance society, where fitting in is more valued than individuality, and the child is changed to fit the environment, rather than the reverse.

The issue isn’t helped by lack of research on alternative methods, apparent bias in the research of the drugs that are out there and the structure of insurance and managed care, which tends to promote the quick, usually medicated, fix.

Lenore Bransford, Nate’s doctor, is a licensed psychologist and nurse practitioner in Reno. She takes about 2.5 hours to observe the child and go through paperwork filled out by the parents, teachers and child (if possible) before making an ADHD diagnosis. But with most managed care, a half-hour assessment (or less) is more typical. Health care providers are pushing doctors to deal with patients more quickly, thereby increasing the likelihood of a less-than-thorough diagnosis.

Russell Barkley, a professor of psychiatry and neurology at the University of Massachusetts Medical Center and an expert in ADHD, told PBS that managed care allows pediatricians only about 20 minutes to evaluate a child: “If the pediatrician wants to refer this child for a specialized evaluation by someone more of an expert in mental disorders, they can’t do that because it’s too costly, and only the more severe children are going to be allowed through the gate to see the experts.”

The American Academy of Child and Adolescent Psychiatry noted in a policy statement: “It is important to balance the increasing market pressures for efficiency in psychiatric treatment with the need for sufficient time to thoughtfully, correctly and adequately assess the need for and the response to medication treatment. … AACAP opposes the use of brief medication visits (e.g. 15-minute medication checks) as a substitute for ongoing individualized treatment.”

When Dr. Bransford moved to Reno about five years ago from Minnesota, she was surprised to learn that, unlike in Minnesota, most Nevada insurance companies don’t reimburse for the diagnosis of attention disorders. Clinicians have to use a co-existing diagnosis or one vaguely classified as “mental disorder not otherwise specified” in order to treat that child. Insurance companies will, however, reimburse for medications used to treat attention disorders—a policy that effectually leaves families who can’t afford out-of-pocket therapy expenses with no other option than medication to treat their child. “Because there are insurance companies that don’t pay for that diagnosis, there are children not getting adequate treatment,” says Bransford. “It’s a Catch-22 for those who want to provide good service and the insurance companies, who say, ‘But we don’t recognize it, and we’re not going to reimburse you for it.’ … It doesn’t make sense that insurance companies won’t pay for a diagnosis recognized by the American Psychiatric Association.”

Bruce Eichelberger, an Oriental Medical Doctor who works at Reno Alternative Medicine, was certified this year to treat kids with ADHD with neurotransmitter therapy. A gray-haired man with soft hands, Eichelberger tries to balance the neurotransmitters in the brain—something Ritalin is geared to do—by using natural amino acids, vitamins and minerals, as well as a more whole foods approach. He doesn’t accept insurance, but he does spend about an hour on each patient. “Anything that works, I’m in favor of,” he says, sitting beside an acupuncture table in his office. “But my personal bent is to do it as natural as possible.” He says if he got an infection or broke his arm, he’d go to the doctor and take his medication. “But for chronic, long-term stuff, for things no one really has a handle on, I try the natural stuff first.”

Most research strongly supports the safety and effectiveness of ADHD medication, but some of those studies may be skewed by pharmaceutical companies who’ve been known to manipulate data in order to get FDA approval for whatever drug they’re trying to sell. Donald Klein, a psychiatry professor at Columbia University’s New York State Psychiatric Institute, has conducted antidepressant trials for drug companies. He says it can cost $300-$500 million to develop a new drug. The clinical trial period is said to cost a million dollars a day, which adds pressure to finish trials quickly. Lawrence Price, a psychiatrist who directs research at Brown University’s Butler Hospital, says drug companies are known to handpick the most likely subjects to get the quickest desired results—the end product being biased, manipulated data.

Drug companies don’t have to publish unsuccessful trials, but they do have to report every trial to the FDA. So David Antonuccio, a clinical psychologist and UNR professor, along with University of Connecticut psychology professor Irving Kirsch and other co-authors, used the Freedom of Information Act to extract data from the FDA. That data, published in 2002, showed that placebos outperformed the six leading antidepressants (Prozac, Zoloft, Paxil, Effexor, Serzone and Celexa) in more than half of the 47 trials used by the FDA to approve them.

While that study was about antidepressants, and most drugs used to treat ADHD are stimulants, the concept of pharmaceutical company power and testing bias remains the same: There’s little money to be made in natural methods, which may affect how patients are treated.

“Not to say psychological treatments are cure-alls by any means, but they don’t seem to have medical risks,” says Antonuccio. He says it’s the idea of ‘first do no harm,’ as noted in the Hippocratic Oath.

“Kids are more involuntary patients,” says Antonuccio. “With adults, it’s kind of like, ‘Buyer beware,’ and it’s to your advantage to find out data on efficacy and safety. But with kids, it makes sense to go the extra mile and be extra careful.”

The stakes are high
Americans have been using psychiatric drugs for behavior disorders in children since the 1950s, specifically methylphenidate, the amphetamine-like stimulant used in drugs like Ritalin, Concerta, Metadate and Methylin. Dr. Bransford says stimulants “are probably the most studied psychiatric medicine. The safety record is very good.”

Antonuccio says that while the deaths associated with stimulants and other drugs used to treat children are rare, “The stakes are high.” FDA databases showed that 25 people, mostly children, died suddenly while taking ADHD stimulants between 1999 and 2003. Another 54 cases showed serious heart problems. Considering that 92 million people were prescribed ADHD drugs between 1999 and 2003, those numbers are small, but they have raised concerns.

In March, epidemiologist Thomas B. Newman of the University of California-San Francisco told the New York Times that about two to five of every 100 patients treated with stimulants for a year have “psychotic episodes like hallucinations,” typically involving insects, worms and snakes. The FDA said the hallucinations weren’t necessarily caused by the stimulant, but they often stopped after the patients got off the drug.

Other side effects may include suppression of growth and appetite, trouble sleeping, abdominal discomfort, fatigue, headaches, mood disturbances. These are usually mild and associated with higher dosages.

Some suspect that treating ADHD with medication may be setting up kids for drug abuse later on, and the drugs themselves may be addictive. The Drug Enforcement Agency lists Ritalin as a controlled II substance, a classification for medicinal substances with the highest potential for abuse and dependence. In 1995, Children and Adults with Attention Deficit Disorder (CHADD) and the American Academy of Neurology petitioned the DEA to lower regulatory control of Ritalin, which led to an extensive review by the DEA. On May 16, 2000, in a statement to the House Education and Workforce committee, Terrance Woodworth of the DEA testified, “The CHADD petition characterized methylphenidate (Ritalin) as a mild stimulant with little abuse potential—this is not what our review found, and the petitioners subsequently withdrew their petition.” Another DEA document noted, “The increased use of [methylphenidate] for the treatment [of ADHD] paralleled an increase in its abuse among adolescent and young adults, who crush these tablets into a powder to get high. Youngsters have little difficulty obtaining methylphenidate from classmates who have been prescribed it.”

Stimulants like Ritalin have been compared to cocaine, but they’re released more slowly and are considered less addictive. If you inhaled a crushed tablet of a stimulant, you could become psychologically dependent, says Dr. Barkley. But when taken orally and in the proper dosage, researchers say stimulants aren’t supposed to be addictive.

In fact, many believe the risks of not treating ADHD with medication outweigh any risks associated with rare side effects. Dr. Bransford says, “Statistics say if you don’t treat kids with attention problems, they’ll have more chemical dependency problems in the future.” She says untreated kids often have more trouble with behavior and grades at school, both of which may lower their confidence, get them in trouble with teachers and lead them to become involved with the “wrong crowd.” Poor education can lead to fewer job opportunities as an adult.

“All of that puts them at higher risk for chemical use,” says Bransford.

The Fall 2005 issue of ADHD Podium says ADHD is also associated with more speeding tickets and vehicle accidents, separation/divorce rates twice as high as a control group, more problems at work and more occasions of quitting or getting fired from a job than people without ADHD.

“It can interfere lifelong,” says Bransford. “If you treat them, and they’re thinking about their behavior and consequences and are less likely to make those choices, the research says it reduces that risk.”

Dr. Barkley told PBS, “There’s always going to be a certain small percentage of the public who want to try a medication to tweak their personality a little bit (performance enhancers), to see if it makes them more competitive in this competitive environment that we live in. … But that’s no reason to keep people with a legitimate mental disorder from having access to treatments that are well established and that are safe and effective for them.”

With all the conflicting information and what-ifs about ADHD drugs, it may be easy to lose sight of the actual parents and children dealing with ADHD on a daily basis.

When LaDawn Malone was picking up Nate’s medication one day, a pharmacist told her, “I can’t believe you’re doing this to your child.” LaDawn still has fears about medication and wonders about the long-term effects of it. “I think, ‘Maybe I could handle this without meds. Am I doing the right thing?’ But all I need is a couple days without it, and I think, ‘He’d be shunned.’” LaDawn hopes Nate won’t always have to be on medication. “I’d hope he could handle life without it someday,” she says. “But that’ll be his choice when he gets older.”

She adds, “I know there are a lot of people that say kids shouldn’t be medicated and other doctors who say kids should all be medicated. Somehow we have to find a balance.”