People often ask me, “Gina, what’s the best medication for ADHD?” No one wants to hear the answer: “It depends.” These days, they also ask me about genetic testing for ADHD medications. That is, DNA tests to help identify the best medication for a person with ADHD. Sorry to say, we are not there yet.
Hence this 7-part blog series: Genetic Testing for ADHD Medications: What Your Genes Might Tell You That Your Doctor Cannot. Look for the next six posts each Wednesday for the next six weeks. You’ll find them listed at the end of this post.
Finding effective ADHD medication therapy is highly individualistic. We lack a way to reliably predict which ADHD medication might work best for any one individual. With the advent of genetic testing, that is beginning to change. But only that: beginning. Failing to understand the benefit—and lack thereof—risks depriving you or your loved one of evidence-based treatment.
Meanwhile, the tried and true approach remains the most reliable method:
- Identify symptoms that might respond to medication
- Carefully track the response over time, and
- Try at least one choice from each stimulant class (amphetamine and methylphenidate)—and several different delivery systems, if possible.
This is a longer-than-average post. Here is a bird’s eye view:
- Why and how genetic testing for ADHD medications is widely misinterpreted and misused—with potentially disastrous consequences
- What are our (Gina Pera and husband) qualifications for writing this series?
- The trouble with current prescribing patterns; it will take lots more than misinterpreted genetic testing to improve!
- Pin the Rx on the ADHDer: too often the standard of care
- Are ADHD meds an easy fix? Ha!
- Introducing the term pharmacogenomics: It’s the study of genetic differences that explain, at least in part, our individual responses to drugs
- A linked list of all posts in this series
Warning: Genetic Testing Widely Misused
Unfortunately, physicians and consumers alike are misusing these tests.
Why did we write this series? Because for too long I’ve heard too many parents say, “ADHD medications gene-testing said my child could not take a stimulant.” That is absolutely untrue—and extremely alarming.
Stimulants are the first-line treatment for ADHD. Yet they often show up in the third “extreme caution” column of this testing report. In this series, we explain why this tends to happen. But for now, please know this: We cannot eliminate the entire category of medications on the basis of misreading a test. Too much is at stake.
To repeat: This testing cannot predict which medication will work best for an individual. It can indicate if some medications will be especially problematic, given the individual’s gene mutations. But even then, the most it can reliably tell you if you should take an extra-low or extra-high dose of a medication. It should be used as one tool, however, and perhaps only after a methodical treatment approach has failed.
My husband and I share our gene reports later. While we went through a company that is no longer offering the testing (Harmonyx), the same information applies. The dominant player in this field now seems to be Genesight. [Update: Genomind is a later entrant to the field.]
Who Are We?
With all humility, I can’t think of a pair better qualified to educate the public on this important issue. We are an internationally recognized ADHD expert, author, and advocate—and her scientist husband who happens to have ADHD.
My husband (“Dr. Goat”) and I wrote the series. He is a molecular biologist with a strong emphasis in genomics and data mining—and he takes medication for ADHD. Moreover, he remembers the parade of prescribers whose detached incompetence resulted in one disaster after another. This changed only when I stepped in.
His nickname is Dr. Goat. Because he is not writing professionally here, we’ll stick with that. He is happy to help make sure that other people with ADHD get the science-based help they deserve.
I am an advocate and educator who has heard 1,000s of medication-gone-wrong/right stories. Because I hear and remember the details of the consequences, I passionately work to improve the odds of good outcomes.
Readers say I have a knack for translating complex ideas into simpler, layperson’s terms. This topic, however, was a challenge! It took us weeks—and many drafts back and forth. But I think you will learn as much as I did if you take it slowly.
By way of background, I am the author of a bestselling book on Adult ADHD, especially as it affects relationships: Is It You, Me, or Adult A.D.D.? It’s the first and still the only consumer book to actually detail an effective way to approach ADHD medication. Others, for the most part, say, “talk to your doctor.” Sorry, that is not enough.
For the most part, mental-health professionals who are not physicians or other licensed prescribers cannot—by the terms of their licensing—advise on psychiatric medications.
By contrast, I am not limited by a license. My career as an award-winning print journalist reflects strong respect for the facts. I never stop being aware that, when it comes to ADHD science, real lives hang in the balance. You are not an abstraction to me. Nor are you to my scientist husband.
My second book, with Arthur L. Robin, PhD., came out in January 2016. He is a veteran highly regarded ADHD expert whose career involved training psychologists in a hospital setting. It’s called ADHD-Focused Couple Therapy: Clinical Interventions ((Routledge, January 2016).
My work has been endorsed by many preeminent authorities in the field of ADHD and of couple therapy.
The Trouble With Current Prescribing Patterns
To be clear:
- We have strong data showing the effectiveness of ADHD medications for people with ADHD in general.
- We also have common-sense methods of selecting medications for trial by an individual person, as described in my book.
But the trial-and-error process can involve weeks of
- Titration (dosage-adjusting),
- Procuring this or that medication
- Wrangling with the insurance company or poorly supplied pharmacy
- Trying to obtain brand over generic (because who needs an extra wild card in all this, especially in the beginning?),
- Teasing out what is “side effect” and what is the medication exacerbating a co-existing condition, and
- Making several trips to the doctor, who might or might not even be a skilled prescriber.
Given that many adults try medication only when they are in crisis, this is especially problematic. When in a crisis—with a job or marriage hanging in the balance—there is little margin for error.
Pin The Med On the ADHDer?
Let’s be honest: Most prescribing physicians are just not that expert at treating ADHD. Surveys underscore that. To be sure, you will find excellent exceptions. Unfortunately, however, you simply can’t expect that the average psychiatrist (or another prescribing physician) to know much more than you do after reading a few good articles or books.
Please trust me on this: Self-education and self-advocacy are mandatory.
In fact, when it comes to predicting an individual’s response to a particular medication—stimulant, non-stimulant, one class or stimulant or the other—it’s too often a game of what I call Meds Roulette. Or even Pin the Tail on the Donkey. Remember how that childhood party game is played? A blindfolded person tries to pin the tail where it should be on the donkey.
I call this adaptation Pin the Rx on the ADHDer. It doesn’t have to be this random. There can be a methodical approach. But genetic-testing is not that approach.
ADHD Meds An “Easy Fix”? HA!
Perhaps the biggest ADHD myth floating around is this: ADHD medication treatment is an “easy fix.” Yes, a minority of people do luck out: They quickly find a medication that works well for them or they find a skilled prescriber. I’m glad for them—but concerned for the rest.
There’s a reason my first book (Is It You, Me, or Adult A.D.D.?) includes a detailed section on medication. The goal? I empowering ADHD-challenged individuals and couples to work pro-actively with their physicians.
Arthur Robin, PhD, and I included a full chapter for couple therapists in Adult ADHD-Focused Couple Therapy: Clinical Interventions (Routledge, January 2016). Prescribing physicians often have only a few minutes with clients. This means they know very little about their patients, especially if they aren’t using rating scales and getting feedback from a loved one.
Therapists, however, have more time to help target behaviors that might be addressed by medication and to track progress over time. Therapists cannot specifically offer medication guidance. But they are well within their “wheelhouse” in performing this function.
The evidence that medication is the single most powerful tool in the ADHD toolbox is there—and has been for years.
If you choose to include medication in your treatment plans, being pro-active about your own medical care, or that of a loved one, is not a luxury. I believe it is a necessity.
Introducing: Pharmacogenomics (or Pharmacogenetics)
I know. That’s a mouthful. Don’t worry. We’re going to walk you through it.
Here goes. We’ve always known that different people react differently to the same medications. Finally, we are beginning to understand why.
That means we can now benefit from new genetic testing that helps predict how a certain medication will work with our particular genes. This is one tool furthering the “personalized medicine” movement.
The field is called pharmacogenomics, or sometimes pharmacogenetics. It’s the study of genetic differences that determine our individual responses to drugs, whether positively and negatively.
The value of such genetic testing is why the FDA has posted a table of 150 FDA-approved drugs with pharmacogenomic information in their labeling.
Pharmacogenomics: the study of
genetic differences that
determine our individual
responses to medication.
The field of pharmacogenomics has broader implications, too. For example, it is being used to identify medications that, while not shown effective in large populations, might be effective in sub-populations. This is important. The state of drug discovery is such that we’ve already hit most of the “targets”. Inroads will be made not so much by discovering new medications but by finding other uses for existing medications.
So, What’s the Bottom Line Here?
Does the advent of genetic testing for ADHD medications make it suddenly a snap to find an effective medication—at the right dose? Sorry, no. Human brains are like snowflakes: no two alike. Moreover, the brain’s complexity makes a snowflake look like a simple dot.
Plus, there are so many other factors that contribute to an individual’s response to a medication—including weight, overall health, age, and other lifestyle factors. But, increasingly, new ways of gathering data are helping to inform treatment decisions.
Look for the next post in this seven-part weekly series. Dr. Goat and I will help you to make sense of this new information.
All the Posts in This Series
Part 1 (this post) of this series provides an overview of the topic (click on the blue number to visit that post).
2 Shares genetic testing results for my husband and I, along with my husband’s reactions to seeing the “hard data” related to his ADHD diagnosis.
3 Dives into the details of genotyping, or genetic testing: what does the term mean?
4 Examines “when and why” to pursue genetic testing—the real-world value and usage
5 Covers the limits of genetic testing for ADHD medications
6 Brings it all together with a closer look at our personal testing results and real-life application of the findings, beginning with Gina’s results
7 …and continuing with Dr. Goat’s personal test results.
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