On April 18th BC PharmaCare announced that it was expanding its existing coverage of medications for the treatment of Attention Deficit Hyperactivity Disorder (ADHD) in the paediatric population.
Three long acting ADHD medications (Adderall XR, Vyvanse and Strattera) will be added under the Special Authority (SA) program.
During the fall of 2015, CADDRA, B.C physicians and CADDAC, called on the B.C. government to provide coverage for all long-acting medications for all age groups diagnosed with ADHD. So, CADDRA and CADDAC along with BC medical practitioners welcome these expanded medication options for children. However, British Columbia continues to lag significantly behind other provinces by denying coverage to individuals over 19, thereby discriminating against adults with ADHD.
The GOOD NEWS
Since treatment through medication is not a “one size-fits-all” scenario, adding more choice improves the ability “to get a better treatment fit.” And clinical experience tells us that long-acting medications are better tolerated, have fewer side effects, greater effectiveness, less abuse potential, and improved adherence.
The BAD NEWS
On turning 19, children who have had access to these medications through Limited Coverage will now be refused treatment under PharmaCare. To qualify for access to these newer medications as a child, they had to fail on a trial on the short acting medications. Therefore, reverting back to these medications is not an option.
This is the wrong time to remove treatment. Moving into post-secondary education, the workplace and adult life is one of the most vulnerable times. We will be setting them up to fail.
The only way that adults with ADHD, might access these newer medications is for their doctor to spend hours mining years of medical data from numerous sources, and writing lengthy reports describing symptoms and past failed medication trials.
IN SUMMARY
Increasing treatment choices for children and adolescents with ADHD using Pharmacare is good. Barring adult patients’ access to these treatment options is discriminatory. This will result in increased post-secondary school failure, more job loss and unemployment and greater overall costs to health care.
View Media Release
A new Huffington Post article is talking about changes coming to the BC Special Education Guidelines that will allow students with ADHD, who present learning needs, to be identified under the learning disability (LD) category. This may not seem like a huge change, but parents of children with ADHD in BC and CADDAC have long been advocating for this change. In fact, CADDAC has been advocating for this change to occur in Ontario since our inception in 2005.
What does this change mean and why did it come about?
In the past system, students with ADHD in BC, who were struggling at school, were denied recognition as exception students (learners) because ADHD was not listed under a category. This recognition allows students access to special education resources and an Individual Education Plan (IEP). By placing ADHD under the LD category the Ministry of Education in BC has acknowledged recent changes in the DSM 5 (the document that defines mental health and neurological disorders) which now categorizes ADHD as a neurodevelopmental disorder, rather than a behaviour disorder. Learning disabilities have long been recognized as neurodevelopmental disorders. Although ADHD is not an actual learning disability it can significantly impair learning even without an LD being present.
Unfortunately, CADDAC continues to receive countless calls from parents in Ontario frustrated that their children are still being barred from being recognized as exceptional learners, many also being denied an IEP. Although a 2011 Ontario Ministry Memorandum states that a student with ADHD presenting learning needs should not be barred from being recognized as an exceptional learner, this is still routinely occurring.
You see, school boards are entitled to set the bar of learning impairment (how impaired a student must be to be recognized as an exceptional learner) wherever they like. There is no requirement for school boards to document this, so decisions are often quite arbitrary and difficult for parents to challenge. This is resulting in little consistency across boards or even within the same school board. Even though the Ministry’s 2011 memorandum exists, we continue to receive calls from parents who are told that their board does not recognize students with ADHD, period. The latest parent I spoke with, who also happened to be a teacher, just told me that their principal was totally unaware of the memorandum and when it was brought to their attention was sure that it must be out dated.
So here is my “ask” of you. If your child with ADHD is struggling at school and continues to be denied an IEP or recognition as an exceptional student in the Ontario School System and you would like to share your story with us to further advocacy efforts in Ontario, please contact heidi.bernhardt@caddac.ca
Access the article HERE
On Thursday March the 16th at 8pm, CBC’s The Nature of Things will debut a documentary on Adult ADHD. The documentary “ADHD: Not Just for Kids” features adults sharing their storey of a lifelong struggle with ADHD symptoms and how they felt after receiving a diagnosis. ADHD medical experts and researchers discuss many aspects of adult ADHD; that in most cases symptoms are not outgrown, that it continues to go undiagnosed, that it is over-represented in the prison population and still often missed in girls. New research and the impact of ADHD on families and society at large will also be covered.
For more information access CBC Documentary
Interested in adult and adolescent ADHD? Join us for our full day Workshop.
This past Sunday CBC’s “Out in the Open” with Piya Chattopadhyay featured a great show on hidden disabilities including a segment on adult ADHD. Piya interviewed Russ LeBlanc, CADDAC’s communication/media consultant. Russ is our “go to guy” whenever we do any media outreach. Russ, a former radio host, was almost fifty years old before he was diagnosed with ADHD. He shared his feelings and experiences when first diagnosed and what happened when he disclosed that he had ADHD to family, friends and colleagues.
Russ feels the most important thing is that people understand it is real and does exist. "I term it as the Rodney Dangerfield of disorders. It gets no respect." stated Russ.
Join us at our up-coming Adult/Adolescent ADHD Workshop this April the 9th and meet Russ.
To hear the entire interview access, CBC’s “Out in the Open”
Results of the largest ADHD brain imaging study of its kind was released this week in The Lancet Psychiatry. MRIs of 1713 people with ADHD were compared to a control group of 1529 people without ADHD, between the ages of 4 and 63, across 9 countries.
Some of the study’s findings were:
Why are these findings of interest?
To listen to our interview click HERE
To view more access, CBC Lancet ScienceDaily
A recent study by the Institute for Clinical Evaluative Sciences found almost 12 per cent of children and youth with attention deficit hyperactivity disorder, or ADHD, were prescribed antipsychotics like Risperdal, Zyprexa and Seroquel. Since the study found that 5% of Ontario children have ADHD, this means that .06% of children may be receiving antipsychotic medications. The study went on to report that 20% of children with ADHD were also receiving antidepressants for depression or anxiety which the lead researcher Dr. Paul Kurdyak, head of the mental health and addictions program at ICES, did not find surprising since these disorders frequently coexist with ADHD. However, the researchers did find it surprising, that children with ADHD would be receiving antipsychotic medications when these medications have not been shown to treat ADHD.
Unfortunately the article implies that these medications are being used to treat simple ADHD, while at the same time conceding that these medications have a sedating effect and assist with disruptive behaviour. Unfortunately what the researchers did not mention is that some children with a more severe presentation of ADHD can also have extreme forms of emotional dysregulation, in some cases so severe that they are unable to attend school or be involved in normal family life without experiencing episodes of emotional “meltdown” and sometimes aggression. This would be the common profile of the majority of children who are receiving these medications. Normal levels of ADHD disruptive behaviour would not commonly warrant a prescription of antipsychotic medication.
In addition, it makes perfect sense that more people who see a psychiatrist have these medications prescribed. It is child and adolescent psychiatrists who generally see these more severe cases. General practitioners and paediatricians refer these more difficult cases to child and adolescent psychiatrists, when they have been unable to successfully treat the child themselves. Of course, better education for front line physicians on how to assess, diagnosis and treat ADHD appropriately may be helpful as well. We know that the sooner we diagnose and treat ADHD the better chance we have of reducing co-existing disorders and the long term consequences of ADHD.
No one would argue that if there is a choice antipsychotic medication should never be given to children and that psychotherapy should always be the first choice of treatment. Unfortunately it is also true that affordable family, child and youth mental health therapy is very difficult to access across this country resulting in a two tier mental health system. However, after speaking with many of these families and the physicians who treat these children it is clear that even when parents do everything right and therapy is implemented, for some children and youth it is still not enough.
Also, no one would disagree that many of these medications have significant side effects and should not be a first line treatment. However, at this time there are no medications that have been approved to specifically treat these symptoms in children and youth so physicians are forced to use these medications off label. Obviously more research is required.
One new medication, Intuniv, has been approved by Health Canada for treating children and youth with ADHD and has been found to be very helpful for many children with emotional dysregulation and aggression issues. This medication is not an antipsychotic medication and can be prescribed along with ADHD stimulant medication or on its own for those who have difficulty tolerating stimulant medication, or have not found stimulant medication to be effective. While Intuniv does have some mild side effects, as do all medications, they seem to be far fewer than those of antipsychotic medications.
For this reason CADDAC is currently asking the Ontario Public Drug Program to include this medication on their list of approved medications making it accessible to families receiving their medication through this program. Advocacy on this issue in other provinces is also on the agenda. As this study indicates not many children will require this medication, and while it will not work for all children with these symptoms, I have spoken to many families who have indicated that it has changed their child’s life and their family’s quality of life.
Of course, better access to newer more easily tolerated once-a-day ADHD medications being covered on provincial drug programs would be helpful and may actually help to decrease prescribing of antipsychotic medication. Coverage across Canada is sporadic leaving vulnerable families unable to access a wide variety of ADHD medications. The more choices we have in ADHD medication the better chance we have of being able to achieve the best treatment options for each child and adolescents with mental health disorders. Unfortunately mental health medications are definitely not a one-size fits all scenario.
My major concern about articles on this particular study such as this CBC article, and often articles on other ADHD topics, is that writing about these very complex issues superficially and with an aim to sensationalize only increases misunderstanding about childhood mental health and the way we treat it. They also result in increased stigma, confusion and fear for parents and care givers trying their best to make informed decisions on treatment for their children.
Since CADDAC continues to receive feedback from our stakeholders about reduced symptom coverage and/or increased side effects they are experiencing with the generic forms of Concerta available in Canada we are keeping you updated on what is occurring south of the border and in Canada on this issue.
You may remember that in the fall of 2014 the US Food and Drug Administration (FDA) determined that two generic versions of Concerta one manufactured by Mallinckrodt Pharmaceuticals and the other by Kudco would be downgraded. This meant the Mallinckrodt and Kudco products were still approved and could be prescribed, but were no longer recommended to be automatically substituted for Concerta by a pharmacist. These medications are not available here in Canada, but we do have different generic versions of Concerta here that have been approved for direct substitution and remain so.
Recently, the FDA announced that "Neither Mallinckrodt nor UCB/Kremers Urban has voluntarily withdrawn its product from the market, and neither has provided data confirming its product’s bioequivalence consistent with the revised recommendations. Accordingly, the FDA is proposing to withdraw approval of the products’ ANDAs and is announcing an opportunity for the firms to request a hearing on the proposal. As part of this process, the FDA is publishing Notices of Opportunity for Hearing (NOOHs) on its Proposals to Withdraw Marketing Approval in the Federal Register. If approval of these ANDAs is withdrawn by the FDA, the products will no longer be able to be marketed in the U.S."
I will be meeting with Health Canada next week to share feedback that CADDAC has received through our past parent/adult surveys and the e-mails, calls and discussions with our stakeholders.
After our meeting I will up-date you on any feedback that we receive during the meeting or any decisions made by Health Canada.
Access the full FDA announcement HERE
The content of CADDAC's new paper on the impact of ADHD in the Canadian Justice system was recently featured on CBC Radio's "The Current". The half hour segment featured three interviews, a young offender diagnosed after several incarcerations, Heidi Bernhardt our Executive Director, and a lawyer who has worked with clients impacted by ADHD. Access this LINK to listen to the interview or read the transcript. Please spread the word far and wide by sharing the link with everyone you know.
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
If you have ever wondered how to respond when your friends and family question the validity of ADHD? Or do you get hot under the collar whenever you read another article telling you that ADHD is due to bad or lazy parenting or unmotivated or defiant kids? If so, you need to read Patricia Tomasi’s response to an article in the Huffington Post by Alyson Schafer. Not only does Patricia correct many of the mistruths in Ms. Schafer’s article she calls out the Huffington Post for publishing the article. The Huffington Post will most likely hide behind the fact that this is a commentary and not a factual piece. But let me ask you this, would they have published a commentary questioning the validity of depression as a disorder? Of course not, they would be tarred and featured. But for some strange reason people still use the fact that there is no blood test that can be used to diagnose the disorder as justification to question its existence. Well there are many conditions in mental and physical health that do not have a particular test that validates their existence, but that is why we use experienced physicians to rule out other disorders that could be causing the symptoms and validate the occurrence and history of the symptoms of the disorder, just as we do with ADHD. So the next time someone brings up the issue with you and you start to feel your blood boil, pull out Patricia’s article and know that she has it covered.
Access Patricia Tomasi’s article Here
