It appears that the topic of ADHD in older adults is catching some attention. I was invited by Ann Fisher of WOSU Radio (NPR affiliate) in Columbia, Ohio to discuss adult ADHD especially in older adults. The host, Ann, asked insightful questions about identification and diagnosis in older adult and how that’s different from younger adults and children. We also covered treatment options including medication and cognitive behavioral therapy.
I am very excited that some media outlets have decided that ADHD in older adults is an opportunity to increase public awareness that “ADHD is not just for kids.”
I invite you the listen to the 20 minute interview. You can find it here. On the time scroll bar, move it to 14:40 minute mark to listen.
In my previous blog, I wrote, in general, about the increasing obstacles set up by insurance companies to restrict psychiatric medications to patients. Today, I’ll tell you a specific example of how a medication dosing thoughtful established for a patient was denied despite both clinical and research evidence to support my dosing recommendations.
My patient Jill (not her really name) is a high functioning woman in her early 60s who is employed by a federal scientific agency. She was diagnosed with ADHD 20 years ago by very knowledgable psychiatrists and treated with medication over the years. When Jill started seeing me in August 2015, her dosing of Focalin XR was 20 mg twice a day but the effect was not lasting throughout the day. A single dose of Focalin XR 20 lasted approximately 4 hours so the dosing was increased to 20 mg three times a day. This dosing would be considered outside product label as the PDR max daily dose is 40 mg. Yet, without adequate duration of action, 3 times a day dosing is very reasonable. Blood pressure and pulse were not elevated.
Because even 3 times a day dosing wasn’t adequate, I changed to Concerta because the delivery technology is different and, perhaps, the absorption of drug would be better. However, because it was clear the absorption and/or the metabolism was accelerated, I anticipated the need for higher dosing of Concerta.
Concerta was gradually increased to 108 mg in AM and 54 mg at 1pm. With this dosing, patient was satisfied with the effect and duration of action of the medication. The afternoon dose mitigated the wear-off effect at 2 pm of the morning dose.
The challenge to this dosing came from the insurance company who initially denied the dosing on the basis of PDR listing max daily dose of 72 mg in adults. I filed an appeal given the patient’s positive response and research support for this dosing.
Dr. Tellioglu , an addiction physician in Rhode Island, was assigned the case review for BlueCross BlueShield Federal Employee Program and called me to review the specifics. When we spoke, he informed me that he had no information on the patient “not even a birth date”. Really? He didn’t even have the letter I sent to the insurance company with supporting information for the patient’s dose.
I explained how I arrived at the dosing and the likely interference of effect by absorption and/or metabolism. He asked if I had run a genetic profile to establish metabolic issues. “No.”, I replied as there are no such tests. While genetic profiling can be ordered to look at liver enzymes for metabolism, methylphenidate, the drug in Concerta, is not metabolized through the liver, instead it is metabolized through the blood serum and this enzyme is not assayed. Blood levels of methylphenidate can be obtained but the blood sample has to be processed quickly or the methylphenidate degrades in the test tube. So, I explained, given these variables, effective dosing is established based on clinical response and symptom reduction.
Dr.Tellioglu went on to explain that the FDA max daily dose was established for efficacy and safety. I pointed out that that was not the case and highlighted that the U.S. clinical trial with Concerta in adult ADHD dosed subjects to 108 mg in the morning (Adler et al 2009). At that dose, there were no significant safety concerns by the FDA and the study had been approved by an IRB (agency responsible for overseeing the safety of clinical research trials). In fact, in that trial, over 30% of the adult subjects were on ≥90mg in the morning. Notice that one third of the adults needed a Concerta dose higher that what the FDA approved for max daily dose.
He was unfamiliar with this research and said “I don’t need to read that to come to my conclusion.” I also pointed out there is a published study in adult ADHD with dosing to 144 mg in AM (Biederman et al, 2005) with no report of significant safety findings. A study in children and adolescents with ADHD investigated methylphenidate blood level with high Concerta dosing (mean dose 170 mg in AM) found unexpectedly low blood levels of methylphenidate with no significant safety issues (Stevens et al, 2010). Remember, this was a child, not adult, study. I offered to forward these studies to him but he repeated his position that the FDA didn’t authorize dosing above 72 mg a day.
So, despite research publications to support higher Concerta dosing in adults with ADHD and a thoughtful clinical approach, he expressed no interest in reviewing this literature. This literature does support using higher than usual dosing in those adults who have suboptimal reduction of ADHD symptoms at “recommended daily dosing”. Absorption can be disrupted by gastric acid content that is modified by Nexium, which Jill was on.
Here is the explanation from the insurance company following their review of the appeal.
“the dosage requested exceeds maximum prescribing guidelines and therefore medical necessity is not established for this drug. Medical necessity is determined by adherence to generally accepted standards of medical practice in the United States, is clinically appropriate, in terms of type, frequency, extent, site, duration and considered effective for the patient’s illness, injury, disease, or its symptoms.”
Do you think this was written by a doctor or lawyer? Was I naive to believe I would get anything other than a pro forma template letter?
In my previous blog, I outlined some of the conflict of interests inherent in these “independent reviews”. In my opinion, the circumstance of this patient’s review reflect a disregard by Dr Tellioglu for patient care to the benefit of the insurance company and the physician reviewer. While I understand the motives of cost containment for the insurance company, in my opinion, the physician reviewer’s ethics are compromised when in the face of reasonable clinical decisions and research support, he/she finds in favor of their “employer’s” interests. Physician ethics dictate that a patient’s medical interest is first and foremost.
If you have reached this paragraph, you have been interested in the story and eagerly awaited “What can I do?”
If an appeal is needed, discuss with your physician/prescription writer how to coordinate the effort. While the physician can provide the medical justification, it is VERY important that you contact and write your concerns and need for your medication to the insurance company. Believe it or not, the companies actually are concerned about patients opinions, as social media becomes very influential.
If the response from the company is unsatisfactory, take the documentation that your physician provided to the insurance, write a letter of explanation of circumstance and send it to your state Insurance Commissioner Office. They in turn will likely send it to the insurance company for “reconsideration”. Insurance companies don’t like these offices accumulating complaints against them.
It may be possible to get the name and phone number of the physician reviewer from your doctor. Give that reviewer a call yourself and explain your circumstance and experience with previous treatment. I confess, the reviewer will not be happy to hear from you and may express anger. So what! That person has some responsibility for your medical care and needs to know it effects a real person’s life.
You may also consider send a copy of your letter (without the medical documents) to a state senator. In Maryland, I have been impressed with the attention some of my patients have received.
However, the strength of your position and the need for the specific medical treatment lies in the clinical course of symptoms/treatment and research support. You don’t get what you want just because you want it.
This is a very long blog and I apologize. Unfortunately, there was simply no way for me to convey briefly the complexity of this situation. For those of you who have encountered this situation, I hope this illustration and information is helpful in better arming you for these challenges.
On September 30, 2015, The New York Times ran an article in the Tuesday Science section on ADHD in older adults. I was interviewed for the article and discussed a former patient age 73 who was first diagnosis with ADHD by me and successfully treated. The article is an introduction into an important clinical area for ADHD heretofore ignored. As we discovered, 60% of children will continue to have ADHD symptoms to an impairing degree into adulthood. The presumption is that ADHD in adults will simply continue throughout one’s life. However, the research is only just accumulating to support this assumption. The largest collection of research in this age group is published by my colleagues in Amsterdam and additional research from other research groups around the world.
Early this year I wrote an article for CHADD’s Attention Magazine on issues related to diagnosis and treatment of ADHD in older adults. The diagnostic issues and treatment considerations in older adults are more complex. In brief, diagnosis needs to consider medical illnesses, medications, history of head trauma, and other medical illness that worsen thinking ability. Treatment consideration are complicated by the presence of medications and medical illnesses that might limit the use of ADHD medications. Older patients and families considering an evaluation for possible ADHD should see a psychiatrist or mental health professional who has expertise and experience treating adults with ADHD.
Remember, while attentional changes occur in those of us over age 50, the cornerstone for the diagnosis of ADHD is the presence of symptoms since childhood that are relatively chronic and unchanged over one’s life and that these symptoms cause impairment in daily functioning. A comprehensive evaluation of all possible psychiatric and medical is critical for the accuracy of the diagnosis.
In my periodic entries of insurance companies’ denial of ADHD medication dosing, I offer you this recent example.
A female in her late 20s treated for ADHD with a combination of Adderall XR and Strattera. Strattera adds a benefit for her executive function not optimized with Adderall XR. I carefully dosed the Strattera upward and suggested increase to 120 mg daily.
Well, the folks at BlueCross Northeastern Pennsylvania denied the dose “As per the FDA recommended dosing guidelines for Strattera in adults the maximum dose is 100 mg per day.” Correctly stated per the package insert for Strattera. “There are no data that support increased effectiveness at higher doses. Therefore medical necessity for 120 mg of Strattera per day has not been met.”
This last statement is a misrepresentation of the purpose of a drug package insert. In fact, the adult registration trial for Strattera submitted to the FDA lists the dose that was used as up to 120 mg daily. Registration trials are designed for the purpose of seeking drug approval for a specific disease state. This research DOES NOT answer the question “If the patient is suboptimally treated with x dose, will they improve further with a higher dose?” So the logic of their denial is a misrepresentation of research for the sole purpose of constricting treatment and conserving money, in my opinion.
Yet more damage is done with these letters. People reading these letters may think the doctor is over-dosing them and not considering safety issues. This is simply not true since safety data on medications are routinely undertaken at much higher doses. There was no unusual safety concern with Strattera at 120 mg daily in the adult registration trial.
It is unfortunate that I find myself blogging about the denial of medication authorizations for my patients who clearly need better outcomes from their medications. While these companies have set up appeal processes, this tends to administratively time consuming without any guarantee that the medical necessity and logic of the dose request will be reviewed with the patient’s interest in mind.
So, what can YOU do if this happens to you? Here are the steps:
1. Call the insurance company and respectfully explain why you need your medicine. If the person is unresponsive, ask to speak to supervisor. If you don’t get to speak to someone with authority, ask if the conversation is being recorded and tell them to “tag” the audio file so that the State Insurance Comissioner’s Office with be able to listen to the audio file. Now, write down the date and time.
2. File a complaint with your state insurance commissioner’s office. You can find the contact information online by searching “<your state> insurance commissioner office”. In your complaint, which should only be one page (no reads anymore), state your brief history of medication history and why it is necessary to have the new dosing authorized for coverage. Write that you spoke with the insurance on what date and time.
In my experience, more often than not, you’ll be getting your approval. However, no guarantees. Good luck.
Chris Davis set a club record last year with 53 home runs. Yet, his presence in the media now has more to do with his ADHD and suspension for the use of Adderall. This has been a set of unfortunate circumstances since Mr. Davis has ADHD which was diagnosed years ago and treated with ADHD medication. The article in the Baltimore Sun newspaper February 27, 2015 reviews and clarifies the current status with Mr. Davis and his provision for a therapeutic use exemption (TUE).
I was interviewed for the article to provide background on ADHD, medications, treatment, and the increased attention by professional sports to formalize a process by which players can be appropriately identified with ADHD and permitted to take medication for this disorder. It is my hope that professional sport leagues, international sports leagues, and college sports consider adopting a clear protocol for diagnosis and treatment according to experts in the ADHD field. In doing so, we can identify athletes without ADHD who seek to take stimulants for performance enhancement and penalize them accordingly while allowing those with ADHD to seek and follow their treatment.
You might think you’re exercising good judgment by enhancing your health and wellbeing by taking herbs and supplements. While the scientific research with replicated studies is limited, the nutraceutical companies have spent billions promoting their use. Yet now, the real problem is uncovered. The New York Times recently published a story on a investigation into herbs and supplements and found several companies whose products sit on shelves at national pharmacy chains don’t contain the ingredient on the label. UGH. Feeling trick and swindled. You bet. Read the full story here.
While I don’t discourage my patients from pursuing complementary and alternative treatments, understand that regulatory oversight and scientific research is critical in determining the real utility of treatments. Without this, marketing under the guise of education becomes the detrimental order of the day.
As time goes on, my patients are increasingly complaining about the loss of medication coverage or no longer affordable medication copays. Well, they are right and here is the proof. The following text was posted today by the American Medical Association with a link to Bloomberg News. Unfortunately, the public was never informed that the Affordable Care Act would prompt the insurance companies to change contract coverage to deny your medication that had effectively treated you for years. Health care has clearly morphed from effective treatment to contracted treatment. And this is the difference between being a patient (treatment under ethical guidelines) and being a consumer (treatment under legal parameters). Choose to be a patient first and consumer second, not the other way around.
Analysis: Benefit managers excluding more medications next year to cap costs.
In a 1,900 word analysis, Bloomberg News (11/26, Langreth) examines the trend for healthcare benefit managers such as Express Scripts to increase the number of drugs they exclude from coverage in order to keep a lid on prices. Express Script will be excluding 66 branded therapies from its main formulary next year, an increase from 48 this year, including the rheumatoid arthritis drug Simponi (golimumab). Meanwhile, CVS Health is excluding 95 drugs from its 2015 formulary.
To those of you who read this information, thank you for your interest and I hope it is insightful.
With each passing day, I encounter an increasing number of obstructions by insurance companies to authorize and provide my patients with their much needed medication. In my last blog, I highlighted Sav-Rx bogus reason to deny my patient the authorization to continue effective medication because of a change in policy coverage despite being on this dose for over 6 months .
Today, I’ll highlight CVS/Caremark’s explanation for “canceled” prescription to a patient who was on Vyvanse 70 mg in AM but needed to reduce the dose to 60 mg in the morning because of difficulty falling asleep. Here is the quote for canceling the 60 mg prescription sent to them.
“We were unable to fill this prescription because taking it is not advised based on your allergies, health conditions or potential interaction with another drug you are taking. Please contact your prescriber for assistance.”
While you might think there is legitimacy in this reason under the guise of safety, the fact is that the patient has been on Vyvanse since 2008 and there has been no clinical relevant change in his treatment that merits CVS/Caremark’s reason.
Such denials under the seeming auspicious of patient safety seem to be nothing more than denial of coverage for cost containment, in my opinion.
I encourage patients to call insurance companies and complain. When that doesn’t work, file a one page complaint with the State of Maryland Insurance Commissioner’s office. This office needs to be aware of the denial of treatment by insurance companies with regard to medication treatments for ADHD.
I intend to post more examples of such denials by specific companies along with the quoted explanation of denial. Perhaps someone with influence over this issue will find these examples ample evidence to formally question the insurance coverage of this and other medical treatments.
October is National ADHD Awareness Month and this issue should be part of the discussion. Please make your comments here so I can see if I’m hitting a nerve.
If you’re reading this blog, you are one of the millions of people who now use the Internet to gain information on medical issues. In a recent survey of consumers, this is where people are looking for medical information.
Most accessed online resources:
53% web M.D.
22% Wikipedia
19% health magazines and websites
16% advocacy group websites
12% YouTube
10% Facebook
10% blocks
9% Pharma company websites
(results from third annual national consumer survey by Makovsky Health and Kelton, 2014)
I would like to take this opportunity to direct your attention to the attitude magazine website that has a large number of webinars from noted academic and professional experts in ADHD. For many with ADHD it’s often easier to watch a video on a specific ADHD topic then to read a book. While many with ADHD can sit and read for extended periods of time, it always struck me as odd that clinicians referred patients to books knowing their ability to sustain attention would be limited, especially in the evening when it medication affect us dwindled.
Explore the webinars on this site as a can be extremely helpful. On this blog site, I will continue to direct my patients in readers to reliable sources of information and clinical insights from my practice not available elsewhere.
Anticipating over 300 attendees, the 13th Annual ADHD Conference for parents, teachers, professionals and adults with ADHD on Saturday, February 22, 2014 from 8:00am to 1:00pm will feature several expert speakers. West Chester University is just outside Philadelphia. Below is the program of speakers and topics.
Marie Paxon, program coordinator, invited me to present on the science of diagnosis and treatment of ADHD in adolescents and adults. If you reside in the area, please consider attending because it is a great way to learn a great deal about ADHD quickly and network with people with ADHD and those who offer guidance and treatment. See you there.
ADHD and the Brain: Knowledge Matters Speakers
Marilyn B. Benoit, M.D. is a child and adolescent psychiatrist. She is senior vice president of Clinical and Professional Affairs and chief clinical officer at Devereux. She is a past president of the American Academy of Child and Adolescent Psychiatry. Dr. Benoit has served on the faculties of Howard and George Washington Universities and is a clinical associate professor of psychiatry at Georgetown University Medical Center, from which she received the Vicennial Silver Medal of Honor for 20 years of distinguished service.
David W. Goodman, M.D. is assistant professor of Psychiatry and Behavioral Sciences at the Johns Hopkins University School of Medicine. He is also director of the Adult Attention Deficit Disorder Center of Maryland in Lutherville and medical director of Suburban Psychiatric Associates, LLC. Dr. Goodman is the author of The Black Book of ADHD.
Marjorie Johnson, LCSW, PCC is a licensed clinical social worker and certified coach who provides leadership and career coaching, training, and counseling. She specializes in helping students and professionals with ADHD. Ms. Johnson serves on Chester County/Main Line CHADD’s Professional Advisory Board and is a professional member of ADDA (Attention Deficit Disorder Association.). She is past president of the International Coaching Federation-Philadelphia chapter and was named the 2011 Small Business Person of the Year by the Exton Chamber of Commerce (PA).
Jesse D. Matthews, Psy.D. is a licensed psychologist and has worked with individuals with ADHD for a number of years. He is in private practice at The Center for Psychological Services in Paoli and Ardmore and also works at Holcomb Behavioral Health Systems, a community mental health organization. He evaluates adolescents for substance abuse at the Chester County Youth Center in West Chester and does substance abuse evaluations and treatment in an outpatient program in Kennett Square. Dr. Matthews is an adjunct professor at Immaculata University. Previously, Dr. Matthews worked for six years as a counselor at Hill Top Preparatory School, and he facilitated the Chester County/Main Line CHADD teen ADHD support group for two years.
Joan M. Polka, Ph.D. is a psychologist in the Counseling Center at West Chester University assigned full time to the Act 101 portion of the Academic Development Program (a developmental education opportunity for underprepared first-time college students). She is also co-chair of Chester County/Main Line CHADD’s Adult Program and was the 2011 CHADD Educator of the Year.
Martin Patwell, Ed.D. is director of the Office of Special Services for Students with Disabilities at West Chester University. He has also been the director of evaluation clinic at Landmark School. He has presented “Trends and Issues in Disabilities in Higher Education” at Jiangxi University, Nanchung, China. He is also a consultant to The College Board, Inc.
Preeti Singh, M.S. is the associate director of the Twardowski Career Development Center at West Chester University.
Sharon Watson, M.S. is assistant director of West Chester University’s Office of Services for Students with Disabilities. She has over 20 years of experience working with students with learning differences, mental health, and physical disabilities.
8:30 a.m. Welcome
Chester County/Main Line CHADD and West Chester University
West Chester University
Earl F. Sykes Student Union
110 West Rosedale Avenue
West Chester, PA 19383
8:45 –9:15 a.m.
ADHD Across the Lifespan
Marilyn Benoit, M.D.
Research has proven that ADHD does not end with childhood. Over the course of a lifetime, the scenarios change, but the struggles might not. What does ADHD look like at each stage of life and what is the impact? This fast-paced-but-thorough presentation will help attendees learn more about this complex disorder and will provide a summary of current treatment and management options. Don’t miss this valuable session to gain a better understanding of childhood, teen, and adult ADHD.
9:15 –10:30 a.m.
ADHD and the Brain – What You Need to Know About Treatment and Management
David W. Goodman, M.D.
Those with ADHD express frustration with the disorder’s symptoms: trouble focusing, procrastination, forgetfulness, and difficulty filtering out distractions. Some people have a slower processing speed and others struggle with impulsivity. To make things even more complex, many people with ADHD will have a co-occurring condition like learning disabilities, anxiety, depression, or autism. The good news is that treatment is available, and there are strategies to counteract these challenges. Dr. Goodman will provide an overview of medications and pro-social treatments for ADHD and discuss common co-occurring conditions in this valuable presentation. Children and adults report that they receive unhelpful advice like “try harder,” “start applying yourself,” and “pull yourself up by your bootstraps.” Attend this session to learn about evidence-based treatments for ADHD and how they make a difference.
10:45 –11:30 a.m.
ADHD and Social Interactions
Jesse Matthews, Psy.D.
Social interactions can consist of anything from a casual conversation with an acquaintance to daily communication with loved ones. This can present challenges for both children and adults with ADHD. Those with ADHD may feel isolated and disconnected from others. They may find that executive function challenges can cause them to misinterpret social cues, which are usually unspoken or vague. The invisible challenges of impulsivity, forgetfulness, and an inability to regulate emotions can have a negative effect on forming and maintaining friendships. Fortunately, new information and strategies are available through the field of social learning and social cognition. Attend this session to learn more about this exciting topic and how to apply it to everyday life.
• Facilitated activity: Mindfulness Meditation and ADHD
Marjorie Johnson, LCSW
Mindfulness meditation is a way to calm the mind and relax the body while increasing the ability to sustain attention and manage distractibility. Hear about compelling research and daily applications of mindfulness meditation. Practice it to experience the deep relaxation it generates.
11:45 a.m. –1:00 p.m.
Becoming Successful in College and Early Career
ADHD and Career Success
Preeti Singh
Career development is a life-long process, involving decision making, self-awareness, exploration, preparation, and experience. What tools are available to help students successfully navigate this territory? This brief presentation will provide an overview of resources and strategies.
WCU Student Panel
Sharon Watson, facilitator
Current students at West Chester University who have “been there, done that” tell it like it is. Their transitions, challenges, and routes to where they are today provide a look at what real students face in college.
• Facilitated activity: ADD and Loving It?!
This video blends humor, hope, and science to dispel the myths about adult ADHD. Comedian Patrick McKenna seeks a diagnosis for adult ADHD and learns the facts from an impressive array of experts. Funny, moving, and transformative, this fascinating documentary will hold you spellbound!