Recently the College of Physicians and Surgeons of BC (CPSBC) developed and published guidelines for safe prescribing of drugs with potential for misuse and diversion. These guidelines were developed for the prescribing of opiates, through a lens of addiction. Unfortunately ADHD stimulant medications were also included in these guidelines. While CADDAC and CADDRA applaud guidelines for opiates, yearly urine drug screening and/or pill counts for patients receiving ADHD medication have no benefit and have not been implemented by other provinces. If a physician suspects their patient, any patient, has an issue with addiction, protocols for this are already in place. Including ADHD stimulant medication in these guidelines is unnecessary, ill-informed and will deter the treatment of ADHD in British Columbia.
What will this mean to those being treated for ADHD?
From now on, those receiving ADHD medication will be required to present themselves with 24 hours’ notice to a designated lab for a yearly routine drug screen. This drug test will screen for opioids, amphetamines (found in ADHD amphetamine medication), and THC (found in cannabis). Screening cannot be done for Methylphenidate based medication. Other drug screens can be requested as well. The patient will be given a special sample bottle, must go into a room without their wallet or coat and produce a sample. Alternately, or in addition to urine tests, physicians are being asked to conduct random pill counts requiring the patient to bring in the prescribed pills for counting on a specific day.
In addition, physicians will now be unable to prescribe stimulant medication used to treat ADHD with anxiety medications (benzodiazepines) or sedative hypnotics used to treat sleep problems. And certain pain medications will not be prescribed to a patient taking stimulant medication.
As well as the stigmatization and shaming of patients with ADHD and their families this will result in a decline in the number of family physicians and paediatricians willing to prescribe stimulant medication. These guidelines promote the perception that prescribing stimulant mediation is a problem with similar risks to prescribing opiates. There is no data or research to back up this perception. We have already seen a steep decline in the number of stimulant ADHD medications being prescribed in BC resulting in more untreated ADHD. The resulting side effects and socioeconomic costs of untreated ADHD have been well documented.
An added result of these biased guidelines will be increased costs to BC healthcare for unnecessary tests and additional physician visits. For additional details access BC Advocacy
What can you do about it?
For more than a decade now CADDAC has been advocating with the Ministries of Education, Health, Child and Youth, Justice and Social Services. Our policy papers have been sent to all ministries across Canada impacted by ADHD, and we have personally met with many of these ministries.
When CADDAC meets with government officials to advocate for needed changes to improve the lives of families with ADHD we are told that change will only happen through the interest of our elected officials. In other words, the bureaucratic arm of the government will rarely effect change unless told to do so by the political arm of the government.
However, when CADDAC meets with the politicians we are told that they have no reason to be interested in ADHD since their constituents have shown no interest. They report that their constituents do not speak with them about ADHD, but they do hear from families of children and adults with other neurodevelopmental disorders, such as Autism.
Since CADDAC receives countless calls from parents extremely concerned about the current situation we know that you are indeed very interested, but this is not being shared with your elected officials. You are interested in government policies that impact your children with ADHD in our schools. You are interested in the lack of accessibility to ADHD assessment and treatment options. You are interested in the fact that youth as well as adults with ADHD are highly represented in the prison population yet we lack screening and treatment of ADHD in most correction facilities across Canada.
Unless educated by their constituents, our MPPS fall prey to the same misinformation and misconceptions as the general public. They view ADHD it as an insignificant issue rather than the most common neurodevelopmental disorder impacting the academic success and mental well being of our Canadian children today.
This year we have a unique opportunity with the upcoming Ontario election. We can use this platform as a pilot to see if parents, grandparents, extended family, educators and medical professionals working in the field of ADHD are interested enough to let their voices be heard.
Let’s make ADHD an Ontario election issue for families impacted by ADHD!
For those of you outside of Ontario, there is no reason for you not to use the same information to assist you in letting your elected official know that you are indeed interested in ADHD.
What Can You Do To Help?
Did you know that your MPP is required to meet with any constituent that request a meeting?
Did you know that governments estimate that every letter they receive on a topic represents an additional 50 to 60 people also concerned about that topic who have not written a letter?
If you have an interest in ADHD, CADDAC and other Canadian ADHD support organizations need your help!
Advocacy efforts cannot succeed unless the voices of those like you are heard – we need all those with an interest in ADHD: parents, grandparents, adults with ADHD, extended family members, educators and medical professionals to do at least one thing to add their voice to the effort.
Please access information on or web site Campaign Page to find information that CADDAC has developed to help you in this effort.
You will find talking points and questions to share with your sitting MPP and those who will be running for election in your riding. You can use the same information to ask questions at town hall meetings.
CADDAC will be asking Ontario parties to answer a list of questions on ADHD. We will be posting their answers later in February for everyone to see. CADDAC will also be asking to meet with the party leaders to present this information and ask for their commitment to families impacted by ADHD.
Warm regards,
Heidi Bernhardt
Since 2010 CADDAC has shared our concerns about the direct substitution of methylphenidate ER-C, a generic medication, for OROS® methylphenidate (Concerta) with Health Canada. This was done through documentation, caregiver and patient survey results and several face to face meetings.
A Canadian research paper reviewing data on this issue, was recently published in the Clinical Therapeutics Journal on drug therapy. The new paper, “Differences in Adverse Event Reporting Rates of Therapeutic Failure Between Two Once-daily Extended-release Methylphenidate Medications in Canada: Analysis of Spontaneous Adverse Event Reporting Databases” looked at treatment failure adverse events of generic versions of OROS® methylphenidate (Concerta).
The research paper reported that a 10-fold higher reporting rate of therapeutic failure adverse events was found with the Canadian generic product, methylphenidate ER-C (Teva product) as compared to OROS® methylphenidate (Concerta). Although adverse events are more typically thought of as additional unwanted effects of a drug (e.g. a headache or rash), if a product fails to produce its expected intended clinical effect, or fails to produce its clinical effect for the intended duration, there may be an adverse outcome for the patient, including an exacerbation of the condition for which the product is being used. The Health Canada Guidance on Reporting Adverse Reactions to Marketed Health Products provides the example of a patient whose condition is well-stabilized, but deteriorates when the patient changes to a different brand or receives a new prescription as an example of an unusual failure in efficacy, which is a reportable adverse event.
Additionally, the study compared Canada-US data and demonstrated that this 10-fold increase in Canadian therapeutic adverse events was very similar to data seen with a US generic product by Mallinckrodt. This US product's bioequivalence status has been removed by the FDA and it is being considered for further regulatory action. Adverse consequences for patients, such as disruptions in academic performance, school suspensions, and onset of adverse social behaviors, showed similarities between the US and Canadian generics. The Canadian study data reported that “Impacts on social functioning, such as disruption in work or school performance or adverse social behaviors, were found in 22.2% of cases.” US reports for the methylphenidate ER generic product identified adverse impacts on social functioning in more than 30% of cases.
The paper also highlighted differences in the generic medication from the brand Concerta Plasma (blood) concentrations. The generic product concentrations peaked approximately 2 hours earlier and declined more rapidly than those of Concerta. As one would expect, adverse event time of day data, showed “overdose like” symptoms to be more common in the morning and lack of efficacy to be more common in the afternoon. Methylphenidate ER-C, was reported not to be effective throughout the duration of the day in 42.6% of Canadian cases, with this early loss of efficacy occurring in the afternoon for 64.3%. Signs or symptoms of too much methylphenidate exposure were also reported in 13.5% of the cases with 58.1% occurring in the morning. Therapeutic failure occurred within one week of starting treatment with methylphenidate ER-C in 72.1% of the cases.
CADDAC’s experience was included as well, “Since the market approval of the first generic drug in Canada, the Centre for ADHD Awareness Canada (CADDAC), a patient advocacy group, has received reports of issues with generic methylphenidate ER medications, including shortened or reduced clinical effects and adverse events.”
The paper concluded that “The results of the current study are consistent with a growing literature pointing to a potential safety issue with the methylphenidate ER-C generic product. Taken together, this information suggests that an investigation should be conducted by Health Canada, to evaluate the potential differences between methylphenidate ER-C and OROS® methylphenidate. If important differences are identified, this would further suggest that the bioequivalence metrics currently used to support the interchangeability of OROS® methylphenidate with methylphenidate ER-C may not be adequate.”
Earlier this year Health Canada (HC) released a notice regarding consultation on the proposed modification to bioequivalence standards for this type of medication. In September, CADDAC contacted HC expressing our pleasure with this review, but asked whether any decisions made would also impact medications that had already been approved for bioequivalency. This is information is important because the medication for ADHD in question would fall under this category. If this was not to be the case, CADDAC wanted to know whether labeling informing patients that this medication was approved under old guidelines would be required. CADDAC has yet to hear back from Health Canada.
To better advocate for students with ADHD we need to hear from you!
Download, share and post our Education Campaign Flyer Access our Education Survey Share your Canadian Education Experiences advocacy@caddac.ca
This October, during ADHD Awareness Month, CADDAC is launching our “ADHD in Education Awareness/Advocacy Campaign” to draw greater attention to the inequities students with ADHD face when accessing education across Canada.
Over the years CADDAC has spent a great deal of time with parents across Canada discussing their frustrations and concerns about this issue. Many parents complain that educators lack an understanding of ADHD, that many school systems and ministries of education do not recognize ADHD as a significant impairment to learning and that their children are not receiving equitable access to education. At the same time we have also heard stories about the positive difference a teacher or principal can make in a child’s life when they truly understand the impact ADHD has on a child’s learning and behaviour.
This campaign will include:
In the past, advocacy efforts have been hampered by parents being too intimidated to publicly speak out about their concerns. This is due to the continued stigma around ADHD, the unwarranted negative feedback parents receive, the fear of possible retaliation from schools and boards should they voice their frustrations and negative attention their child may experience.
Since CADDAC fully understands these concerns we have developed two ways for to allow your voices to be heard anonymously.
We would greatly appreciate your participation in the survey above!
It should only take 10 to 20 minutes of your time.
And, if you feel comfortable, please also share your views and past experiences with education systems around ADHD. Please send your stories to advocacy@caddac.ca either in the body of the e-mail or as an attachment.
If you are interested in becoming involved in advocacy efforts nationally or in your province please contact advocacy@caddac.ca
If this topic is near and dear to your heart we need to hear your story!
CADDAC continues to receive calls on a fairly consistent basis from parents across the country expressing concern about their child’s education. Many have tried for years to work with their child’s school to put strategies and accommodations in place. They are extremely frustrated about the lack of recognition that ADHD can significantly impact a child’s learning and the void in training for educators.
If these issues are of interest to you, you need to add your voice to our 2017 ADHD Awareness Month Campaign and advocacy efforts. While Awareness Month will be the launch, we anticipate this campaign to extend throughout the next year. We are aware that most often we are contacted about the worst situations and rarely hear about the successes. So, we also want to hear your positive comments.
Although our knowledge on how ADHD impacts learning has expanded significantly in the past twenty-five years, little has changed in how schools, school boards and Ministries of Education address student’s learning needs. While some educators have great insight into why and how students with ADHD are impaired and strive to support them, others still label students with ADHD as lazy, unmotivated and defiant. School boards and teacher education programs continue to spend very little time training educators and administrators on ADHD even when on average there are at least 2 to 3 children with ADHD in every classroom.
For the past twenty years CADDAC and its representatives has been meeting with Ministries of Education attempting to bring change to the way students with ADHD are recognized, understood and serviced. Ministries of Education that identify students with disabilities as exceptional learners continue to systemically exclude ADHD in their categories of exceptionality. However, whichever provincial special education system is in place, the continued lack of training for educators is a commonality across all provinces.
So, during this year’s ADHD Awareness Month, in October, CADDAC will be launching a campaign to bring more awareness to the impact of ADHD on learning, the lack of educator training, the lack of school services for students with ADHD, and the continued stigmatization of students with ADHD is some schools. At the same time we would like to highlight schools that do a great job of supporting our kids with ADHD, because we know that it can be done.
After meeting with Ministries, boards and government officials for years only to be told that the continual concern we hear from parents about their child’s learning and their frustration at the schools’ lack of understanding, knowledge and services is just hearsay, we think it is about time they hear it from you.
In preparation to the launch of this campaign CADDAC is requesting that you send us your stories. They can be brief or as lengthy as you like. Tell us about your experiences, good and bad. Tell us about your efforts to be heard, your frustrations and your successes. Let us know about the teacher who really “got your child” and made your child’s year. Essentially we want to hear whatever you would like say on this issue.
We completely understand that this can be a very emotional issue for some, but we do ask that you not name individual schools or boards. Since these stories will be collected, collated and eventually shared with policy makers you may wish to send your letter anonymously. If this is the case, please do not place your name at the bottom of your document. However, also remember that a signed document holds more weight. Also, it is about time that we openly address these issues and refuse to accept the stigma that many feel is still attached to ADHD.
Please send your stories to advocacy@caddac.ca either in the body of the e-mail or as an attachment.
Stay tuned for additional up-dates on this campaign through or blog post, web site or through our e-mails.
Please also join the discussion on this topic though our Facebook page.
Warm regards,
Heidi Bernhardt
This very enlightening study questions how genuine our government’s call is for improved mental health treatment. While medication is only one treatment option, for many impacted by a mental health disorder, the right medication treatment can be life changing.
This study published by the Canadian Health Policy Institute (CHPI), compares decisions on access to medications used to treat mental health disorders compared to other health conditions. The study looked at data on all new drugs that were approved by Health Canada as safe and effective and submitted for review to the Canadian Agency for Drugs and Technologies in Health (CADTH) Common Drug Review (CDR) for evaluation from 2004 to 2015. The CADTH Common Drug Review (CDR) conducts evaluations of clinical, economic, and patient evidence on drugs submitted and makes recommendations on the coverage of these drugs on federal, provincial, and territorial public drug plans, with the exception of Quebec.
The study found that 51.5% of non-mental health drugs received positive recommendations compared to 23.8% of mental health medications. The review process also took less time to for non-mental health drugs (192 days) compared to mental health drugs (242 days).
Twenty one mental health medications were reviewed during the study period. Over the eleven year time period only Schizophrenia medications (44%) and bipolar disorder medications (100%) received a positive recommendation. Zero percent of medications for ADHD, dementia/Alzheimer’s disease, and depression reviewed were recommended for coverage by government drug plans.
Why is this important? Clinical research clearly tells us that treatment of these disorders is not a one-size-fits-all approach. One medication may be very effective with few or no side effects for one patient, ineffective for another or cause major side effects for a third. The more mental health medications physicians have access to for their patients the better outcomes we can achieve for those impacted by mental health disorders.
While government departments making decisions on access to medications through their drug plans need to be frugal, research has clearly shown that delaying and denying access to mental health treatments actually increases costs to our health care systems. It was estimated that in 2015 less than 1% of the almost $55 billion Canadian yearly societal cost in economic burden of mental illness was spent on direct costs of new mental health drugs.
Access the brief and full article HERE
On October the 31st CADDAC and CADDRA, as well as other stake holders, met with Health Canada to present our activities over the past six years and express our continued concerns in regards to the bioequivalency, or more accurately the lack of therapeutic equivalence, of the generic forms of the brand name ADHD medication Concerta. Heidi Bernhardt President and Executive Director of CADDAC presented information on past advocacy efforts, patient feedback and patient surveys carried out to obtain patient feedback on this issue. In addition she addressed the continued challenges CADDAC is experiencing in having patients and caregivers report on adverse events such as the decrease in symptom control and increase in side effects of these medications. Dr. Doron Almagor, President of CADDRA, reviewed the individual and societal impact of ADHD and summarized Canadian and US adverse events and lack of efficacy reporting on these generic medications. Dr. Murray Ducharme covered the different processes and timing of absorption, peaking and elimination of the brand versus generic medications and why they are not therapeutically equivalent or bioequivalent. Dr. Judy van Stralen presented on three studies which demonstrated the difference between Concerta and the TEVA generic product. In addition she spoke about the additional wait times this issue has added to her clinic. Several of the presenters also shared specific troubling patient cases with bad outcomes due to substitution by the generic medication.
At the close of the meeting all were informed that we would receive a decision within the next month on what the Health Canada’s next steps might be.
The Center for ADHD Canada is drawing attention to an issue of importance that has long been ignored by the Canadian justice system during October, ADHD Awareness month. Incident rates of ADHD in the correctional population are 5 times greater than what we see in the community and ten times greater for youth. Yet little has been done to introduce assessment and treatment protocols within justice and correctional systems across Canada. This is occurring even though research and on site experience has shown there are significant benefits to doing so.
CADDAC is launching a new paper, “The Benefits of Recognizing and Treating ADHD in Canadian Justice and Corrections Systems”, and sharing it with Ministries of Justice and Corrections, law/bar associations, and courts with the hope that increased awareness will result in a dialogue on the implementation of screening, assessment and treatment of this disorder throughout the system. Even though this topic may make some in the ADHD community uncomfortable CADDAC feels that it is high time that we shine a light on this issue so better solutions can be found. Research has shown us that the benefits of treatment far outweigh the benefits of punishment for everyone involved.
Often in this country ADHD still remains undiagnosed and under treated. ADHD symptoms of impulsivity along with common coexisting executive functioning impairment and emotional dysregulation create general impairment in self-regulation. When we combine all of this with the self- medication of unrecognized symptoms through substance use, it is easy to understand how those with ADHD become at a higher risk for involvement with the criminal justice system.
Implementing screening and assessment procedures within all areas of the justice system would increase the chance that those with ADHD could be flagged and receive appropriate treatment.
Early detection and treatment of ADHD would benefit offenders and society, and reduce costs to the justice system by:
In summary, the reduction in criminal behaviour, improved behaviour while incarcerated and improved overall rehabilitation of inmates will increase their and their family’s quality of life, reduce costs to the justice system, benefit the communities they return to and Canadian society in general.
Access the paper, key messages and media release in English and French at www.caddac.ca
Canadians are being asked to Participate in the 2016 ADHD Challenge
Help raise ADHD awareness, show off your skills and help raise funds for ADHD Awareness and advocacy work across Canada, all at the same time!
The Centre for ADHD Awareness, Canada (CADDAC) urges every Canadian to participate in a challenge of their choice for the month of October in an effort to raise awareness of ADHD and help raise funds for ADHD awareness and advocacy work across Canada. Whether you are 6, 16 or 60+ we want you to decide on a personal challenge that you want to complete during the month of October, ADHD Awareness Month, and complete the challenge with the support of your sponsors. For more details access the CADDAC web site
It’s back to school time! Some of you parents will be excited with the thought of getting your kids back into routine and out of your hair, but many parents of children with ADHD dread the start of the new school year as with it comes the start of calls from the school, fights over homework, and the stress of advocating for your child to get what they need to be academically successful. Will this be a good year or another year of stress, misunderstandings, and challenges?
Over the past 24 years I must have spoken with tens of thousands of parents about their worries and concerns, their feelings of helplessness when dealing with the school system and getting their child the help they need. No doubt there are great teachers, principals and administrators out there, I have met some of them, and every once in a while I hear an uplifting story about a fabulous teacher or program that has made all the difference in the world to a child with ADHD. But of course, because of what I do it is generally the horror stories that I hear time and again. I am writing this after speaking to a family for the past two hours whose child was restrained at the end of last year. An IPRC was denied and accommodations not put in place. The family has done all the right things, accessed all the medical resources possible, developed phenomenal self- regulation teaching strategies and implemented them in their home with great success. They are now struggling to obtain some assurance that this trauma will not be repeated again.
Sad to say, after 24 years of doing this work very few of these stories are truly unique and even shocking anymore, but rather variations on a similar theme. So, it was with great interest that I read this past July 26th’s U.S. Department of Education’s Office for Civil Rights (OCR) media release clarifying schools’ obligations to provide students with ADHD equal educational opportunity under Section 504. The release stated that “The Department will continue to work with the education community to ensure that students with ADHD, and all students, are provided with equal access to education.”
If only we could get the same attention to this issue here in Canada. I have now been advocating on this issue for more than 20 years and CADDAC has taken a leadership role on this since its inception. In 2010 CADDAC developed a Provincial Report Card reviewing and grading how each province’s education system recognized the impairments of students with ADHD and how this lead or did not lead to special education services. CADDAC participated in the development of the 2011 Ontario Memorandum and developed a policy paper entitle, “Equal Access to Education for All Canadians” prior to the memorandum release. The topic was again covered in our 2014 Socioeconomic paper. CADDAC has also met with various provincial Ministries of Education, including Ontario (several times), Manitoba and we will be meeting with the British Columbia Ministry for the second time this fall. If you access our Provincial Report card you will notice that Ontario and British Columbia both received failing grades.
Apparently over the past five years the OCR received more than 16 00 complaints about discrimination of students with ADHD either not being evaluated for a disability in a timely manner or not receiving appropriate special education services. The “guidance” provided to school boards states that the students must be evaluated if they are believed to have addition needs, services must be individualized to the student and not just generalized ADHD accommodations. One of the points of guidance that I found of most interest was that schools were not to automatically decide that if a student was doing well academically they could not have a disability in learning, reading, writing and thinking. Another interesting point was that students who display behavioural challenges could have ADHD and should be evaluated.
This fall CADDAC has its sights set on BC again since this province has continued to deny students with ADHD recognition as exceptional students unless a coexisting learning disability exists.
