Dying with your Privacy Intact

Questions about PHIPPA and Deadly Genetic Diseases

The rigorous application of the Personal Health Information Privacy Protections Act (PHIPPA) and the presence of known disease causing genes or genetic mutations raise a host of medical/legal/ethical challenges for doctors, patients and families. In my role as a patient advocate working on behalf of families affected by inherited heart rhythm disorders; a group of diseases typically transmitted by a dominant gene and therefore affecting on average half of all children of a gene positive parent; I meet several families and physicians each year that are facing serious challenges in balancing PHIPPA and the best interests of their loved ones and patients respectively. Every year 700 young Canadians die suddenly from cardiac arrest caused by an underlying heart arrhythmia disease, for most death is the first indicator of the presence of disease. The challenge is to identify at risk individuals and get them the preventative treatment that they require before they go into cardiac arrest

This post does not have any answers it simply sets out to ask some of the questions.

Story One - A 22 year old male tests positive for Long QT Syndrome after a fainting episode at hockey practice. Follow-up testing finds his Mother is also gene positive for Long QT. His 26 year old cousin on his Mother’s side is pregnant with her first child and refuses to get tested. It is important to understand that if the female cousin and the baby both test positive there are many simple and effective options for preventing sudden death.

·        Can or should the healthcare system be able to force the mother to undergo testing to protect the unborn child?

·        Should there be exceptions to PHIPPA when minor children are known to be at risk?

The current system typically involves a letter written by a physician being sent to first degree relatives of the index patient asking them to consider being tested. If they do not respond to the request little else can be done.

·        Should Doctors and/or Genetic Counsellors be allowed to call or visit first degree relatives and explain their options and the pros and cons of undergoing testing?

Story Two - A 14 year old boy dies in his sleep. The initial autopsy fails to determine cause of death. Subsequent Molecular (genetic) autopsy determines that the cause of death was likely Brugada Syndrome. The parents are informed of the findings and it is strongly recommended that all first degree relatives undergo testing. No one in the family moves quickly to get tested. A year and a half later a 17 year old brother goes into cardiac arrest and Paramedics are unable to save him.

·        Should coroners in every province/state be required by law to complete genetic testing and inform known first degree relatives within a specific time frame, say 90-120 days ?

·        Should genetic swab kits be sent to all first degree relatives?

·        Should there be more rigorous guidelines for coroners and medical examiners following up on Sudden Unexpected Death in the Young including timelines and protocols for informing relatives?

·        Is there a way to protect healthcare professionals from disciplinary action when they pursue relatives of known gene positive patients?

Due to the constraints that PHIPPA puts on Doctor’s they often find themselves on shifting unstable ethical legal ground. When the disease they are contemplating is carried on a dominant gene there is a 50/50 chance that the knowledge they possess imparts potentially lifesaving information.

The 17 year old brother of the boy whose autopsy was positive for Brugada Syndrome died with his privacy intact.

·        Is that the intent of PHIPPA ?

Two Cost Comparison’s for Cardiac Arrest Prevention Programs

 

Brock Reuther died as a result of a sudden cardiac arrest experienced while playing volleyball at his Alberta High School in May of 2012. Since that day Brock’s mom Kim has been advocating for programs to prevent other families from experiencing the pain the Reuther’s have gone through and it has been, to say the least, an uphill battle.     http://projectbrock.com/

I was speaking with Kim this week and shared with her two comparators that I often use when speaking about preventing sudden cardiac arrest in youth. She asked if I could send them to her in writing so here they are.

The HPV (Gardasil™) Vaccine vs. ECG Screening for Heart Arrhythmia

In August of 2007 the Government of Ontario announced it would spend $39 million to provide every Grade 8 girl in the province with the vaccine for Human Papillomavirus (HPV) which is known to be a cause of many cervical cancers. That works out to a little over $400.00 per child. Cervical cancer claims the lives of 150 women of all ages in Ontario each year and is the second most common type of cancer in women between ages 22 and 44.  This is an expensive but worthwhile prevention program that will assuredly save young lives.

For many years patient advocate groups in Canada have been seeking funding and support for a pilot study into ECG screening of young teens. Many advocates would like to see the screening process include Echocardiogram as well. Published studies show that ECG alone can be over 80% effective at identifying children at-risk for sudden cardiac arrest and when Echo is added screening will identify over 90% of those at-risk.  The tests are non or minimally invasive and very inexpensive. The Ontario Health Insurance Plan billing code for an ECG to be acquired and read by a physician is $11.05. A targeted Echo is a little more expensive at $33.50.  For 10% of the cost of an HPV vaccine we could protect all young people from a far more prevalent and preventable cause of death – Sudden Cardiac Arrest.

A $250,000 grant would easily fund a pilot study that could gather, study, analyze, weigh the values and publish the results of screening tests for over 5,000 youngsters. Every year 700 young people die suddenly of cardiac causes in Canada - 200 in Ontario, 65 in British Columbia, 60 in Alberta, etcetera.   An ECG/ECHO screening program for teenagers is relatively inexpensive and assuredly would save hundreds of young Canadians from sudden death.

Note: ECG screening of elite athletes in northern Italy has reduced sudden cardiac arrest deaths in that population by 89%.

Anaphylaxis Awareness vs. Sudden Cardiac Arrest Awareness

In the spring of 2012 I gave a talk on Recognizing and Managing Cardiovascular Emergencies to 250 Human Resources professionals from across Ontario. A portion of the talk included a discussion of cardiac arrest in youth.

·        I asked for a show of hands to the question “How many of you know that you cannot send a child to school with peanut products in their lunch?”

o   Virtually every hand in the room went up.

·        I then asked “How many of you know that “fainting” is a common warning sign of a potentially lethal heart rhythm disorder?”

o   Perhaps 10 hands went up.

·        I then asked “How many kids in Ontario will die this year from peanut allergies?”

o   The answer is probably none, perhaps one and if it is a very bad year two.  Note : 2 deaths in ON since 2010

·        Finally I asked “How many young people will die in Ontario this year as a result of Sudden Cardiac Arrest?”

o   The answer is 200 – a palpable buzz went through the room.

It is fantastic that the Provincial Government and the School Boards that it funds have invested so much money, time and effort into creating universal awareness and compliance for strategies for preventing two or three peanut allergy deaths each decade. It is frustrating and nonsensical that the same Government and the same School Boards have invested virtually nothing into awareness and prevention strategies for the most common cause of death on school properties and the most common medical cause of death amongst Ontario children.

Every patient advocate probably believes that research and programming for their disease is underfunded. Those of us working to protect the lives of children at-risk for Sudden Cardiac Arrest can look around and see tens of millions of dollars being spent on prevention strategies for diseases that cause less than 1% of the suffering brought on by Heart Arrhythmia Diseases. We would never want or ask Governments to cut back that spending, we are simply asking them to listen to our story and act on our requests for similar consideration. Again this year 700 young Canadians will die suddenly of cardiac causes, many of those deaths should be prevented.

Sudden Cardiac Arrest Prevention Strategies for your League

Share in the Knowledge - not in the Tragedy

PACED, Parents Advocating for Cardiac Education, is hopeful that 2015 will be a watershed year for heart arrhythmia awareness and sudden cardiac arrest prevention in Canada. A little basic knowledge of heart arrhythmia diseases and their warning signs can go a long way to reducing the toll that sudden cardiac arrest takes on our children and families. Many of the young athletes that die each year exhibit warning signs in the days weeks or months prior to their death. PACED would like the opportunity to speak to the executive, coaches, trainers and parents of your minor sport organization and share simple strategies that can protect young athletes.

If your organization is based in southern Ontario, from London to Barrie to Oshawa to Niagara Falls, PACED will be happy to come out to an upcoming meeting and deliver a brief but comprehensive overview of Inherited Heart Rhythm Disorders that addresses the critical questions:

·        What is an Inherited Heart Rhythm Disorder (IHRD)?

o   Are there other diseases that can cause a child to experience sudden cardiac arrest?

·        What are the warning signs of an IHRD?

·      How should our organization and parents respond when warning signs are observed?

·        Is there value in a “return to play” policy for athletes that have exhibited warning signs?

·        Are there pre-participation screening tools for IHRD?

·        What is the role of genetics in the recognition and management of an IHRD?

·        There is an AED (Defibrillator) at the arena; won’t that prevent sudden cardiac arrest?

·        What happens after a positive diagnosis for an IHRD?

PACED works closely with Paediatric Cardiologists from across Canada to ensure that our message is accurate and current. The evidence based recommendations that we share are already being implemented by sport organizations across the United States and Europe. To date 13 US States have legislation passed or pending that make sudden cardiac arrest prevention programs mandatory for school and community sport organizations.

Sudden Cardiac Arrest is the leading cause of young person deaths that occur during participation is sport and play. There have been a least eight on ice deaths over the last nine years of Canadian minor hockey players. In Ontario 200 young people die suddenly of cardiac causes each year - not all of these deaths occur during participation in sport. Building communities that are more sensitive and responsive to the warning signs of potential heart arrhythmia will go a long way to reducing these numbers and the only cost is the time it takes to learn the facts.

It takes 45 minutes to acquire the tools to prevent the Sudden Cardiac Death of an Athlete

Every time a young athlete dies it is a tragedy.  When that child exhibited known warning signs of heart arrhythmia in the weeks or months prior to their death and no one picked up on those signals the tragedy is deepened. PACED is asking for 45 minutes of your group's time to help you start building the safety nets that will prevent these tragedies.

The knowledge that PACED has shared with the  Ontario sports community has already led to several children being correctly diagnosed with an IHRD and receiving the treatment that they need to lead a long and productive life. Please pick up the phone or send an e-mail inviting PACED to come and present at an upcoming league meeting.

Blake Hurst, Co-Founder of PACED may be reached at (905) 527-0462 or

info@paced.ca

 

Mandatory ECG for Paediatric Syncope - MEPS

ECG’s acquired when a child faints provide lifesaving data

Every Paramedic in Ontario, and probably where you live, is trained and equipped to take an ECG (Electrocardigram) and do basic heart rhythm interpretation. When Paramedics respond to a call for a child that has fainted it should be mandatory to get an ECG and to provide the strip to the Doctors in the ER, even if upon arrival at the scene the child has regained consciousness and “seems” fine.

Of the 700 young people that die suddenly of cardiac arrest each year in Canada about half had a fainting episode in the days, weeks, months or years prior to their death. These sentinel events provide the best opportunity to identify an underlying heart rhythm disorder and initiate treatment and prevention therapies.

Important information about what was happening to the child’s heart at the time of collapse is lost as time passes. The sooner the first or "presenting" ECG is taken the greater the understanding that Doctor’s will have of what triggered the event.  As time passes the heart returns to baseline and important clues may be lost.  

It is not essential for Paramedics to interpret these early ECG’s, they simply have to acquire the strip. Once acquired the ECG strip can be shared with the physicians in the ER or the Paediatric Cardiologists for analysis. Once acquired the ECG becomes part of the electronic call record and can be accessed weeks, months or even years later perhaps making an important contribution to a future investigation.

Studies estimate that roughly 1 in 20, about 5%, of all childhood faints are a warning sign for an underlying heart rhythm disorder. For faints occurring during or shortly after physical activity, while swimming or as a result of a loud unexpected noise (auditory startle) that number may go as high as 1 in 3, or 33%. Building communities that are more sensitive and responsive to childhood fainting can only result in young lives being saved.

There are some questions around the ability of Paramedics and the equipment they work with to collect accurate ECG’s from prepubescent patients. Two things occur to me - first, get the strip and let the physicians decide if it contains useful information – second, perform more ECG’s on children and get better at it which may also require additional training and equipment software upgrades with better paediatric programs.  As taxpayers we are paying for our Paramedics to be equipped and trained to gather ECG data, this toolkit has its greatest potential value when it is applied to our children.

Currently at least 14 states and provinces have legislation passed or pending designed to increase sensitivity to the warning signs of paediatric heart rhythm disorders in our communities. If Teachers and Coaches call 9-1-1 every time a child faints and Paramedics acquire an ECG for every child that faints and ER Doctors do a thorough work-up including event history, patient history and family history (and consults with appropriate specialists when required) for every child that faints, many young lives will be saved.

When a youngster has one or more fainting episodes and then dies an opportunity to save that child’s life has likely been missed. I have listened to the stories from dozens of families that have lost children to sudden cardiac arrest and far too many of those stories include anecdotes of fainting episodes that educators, sport officials and most concerning healthcare professionals have overlooked, brushed off or misdiagnosed.  Paramedics and the EMS system can play a vital role in ensuring that potentially lifesaving information is recognized and acted upon whenever our children experience a loss of consciousness faint.

Watching our Children Die on the Ice

Somebody do Something … just don’t ask me to perform CPR

For nine years I was the Public Access Defibrillation (PAD) Program Co-ordinator for a municipality with a population of just under 500,000. It was an exciting time on the frontier of AED placement in Canadian communities. In five years the number of cardiac arrest survivors in the community more than quadrupled, from 7 in 2005 to 31 in 2010, with many of those additional lives being saved by members of the public performing effective CPR and deploying an AED within minutes of patient collapse.

One life that was not saved was that of a hockey referee. He collapsed during a game that was well attended in an arena equipped with an AED. No one that witnessed the collapse knew where the AED was located or how to use it. No one was able to locate any of the arena staff that were trained to use the AED. CPR was performed but by the time Paramedics arrived it was too late for a defibrillator to be effective. In this earlier blog I share my thoughts on why this should have never happened.  

http://leadingcause.blogspot.ca/2012/12/cancel-one-game.html

A few weeks after the event the EMS Chief and me met with Executives from the Hockey and the Referee’s Associations. There were lots of emotions and lots of suggestions coming from all sides. The consensus was to move forward in a positive manner that would help ensure that the next time resuscitation needed to be performed the hockey community would be better prepared.

I lobbied hard with management to be allowed to offer “free” certification level CPR/AED training to any adult associated with the local minor hockey association – coaches, trainers, referees, officials and parents. In the end I was given the go ahead to offer six free sessions for up to 20 people per session over six consecutive Wednesday evenings in February and March. I would provide the training but the hockey association had to provide the people. The marketing and promotion, the filling of the seats, was entirely their responsibility, a condition which they readily agreed to.  The first week five adults with two teenagers in tow showed up – I had prepared 20 manikins and brought in another trainer to assist. I called the association and they promised more people the next week, four is not more than five.  After three people showed up in week three I spoke to the association and we mutually agreed to end the program. Out of the 120 seats that we had made available to the association 12 were filled.

The following winter good friends of mine that had lost a child on the ice to cardiac arrest (the AED was deployed but could not convert the heart back into a blood pumping rhythm) partnered with a local charity to donate an AED to an arena in their community. After a very nice on ice presentation ceremony that included a long and heartfelt standing ovation in memory of their beautiful son we announced that the following morning in the arena’s community room we would be offering free CPR/AED training to any and all interested parties, the session was also promoted through other means. Three people, plus the three of us attended.

The next time a coach, referee or player collapses to the ice and no one in attendance knows what to do where will the blame lie? In a public sports venue equipped with an AED it is the responsibility of every adult that regularly attends that venue as a coach, trainer, official or spectator, paid or volunteer, to acquire basic resuscitation skills. It is not the sole responsibility of the Zamboni driver to safeguard everyone’s life or to be highly visible whenever someone collapses.  

Again this week a child collapsed after taking a puck in the chest (a phenomenon called “commotio cordis” that claims the lives of about twenty young teens each year in North America) at an arena in Toronto. Thankfully arena staff and trained spectators were able to resuscitate the child. Nice job by Doug Jamieson and team. According to the CBC News story no hockey people – coaches, trainers, referees - helped with the resuscitation effort; if this is not true please let me know. 

The CBC interviewed several parents that witnessed the event and they put forward suggestions on how cardiac emergency response could be improved at Toronto arenas. The suggestions ranged from somewhat plausible to downright silly. However not one parent stepped up and suggested that they themselves and in general more people from the minor hockey community should be trained in CPR and AED use. There was lots of half-baked, buck-passing, ill-informed recommendations but not one person stepping up to take a little personal ownership for resuscitating friends or family members in cardiac arrest.

http://www.cbc.ca/news/canada/toronto/aed-defibrillator-helps-save-teen-hockey-player-s-life-1.2837497

In a related CBC story from June 2014 a senior executive from Hockey Canada explained that despite at least 8 on ice deaths in 9 years Hockey Canada is satisfied with its cardiac emergency response protocols which do not require CPR/AED training for coaches and trainers. In fact the recommendation is that if a coach or trainer suspects a player is in cardiac arrest they should seek out someone in the arena that is trained to manage the situation. This is the stated policy of the governing body of the sport that our entire nation loves so much.

http://www.cbc.ca/news/canada/nova-scotia/cardiac-arrests-kill-8-young-hockey-players-in-9-years-1.2669393

Long before the hockey referee died and every day since (it has been more than 6 years now) I have shouted from the mountaintops the importance of universal user group CPR/AED training. I believe that both minor and adult sport organizations should not be allowed to rent municipal sports venues unless the majority of their members are trained in CPR/AED and in general anyone that lives, works or plays in a building equipped with an AED should be trained.

My final two thoughts on this story:

1. When interviewed  by CBC Ali's sister used the word lucky.  A lot of forethought, planning and training on the part of The City of Toronto and the arena staff went into 13 year old Ali being "lucky" that day.
2. When you buy a Ford Escape everywhere you go you see Ford Escapes. When you take AED training everywhere you go you will notice the AED hanging on the wall. Take the training.

The Role of the Death Investigator in Preventing Sudden Cardiac Death

When a child dies of a cardiac cause seize the opportunity to protect siblings and cousins

In some jurisdictions they are called Coroners in others Medical Examiners. Regardless of job title they have the potential to significantly reduce the toll – 7,700 per year - that Inherited Heart Rhythm Disorders take on young people in provinces and states across Canada and the US.

The Coroner’s responsibility begins with correctly identifying the cause of death.  For the first degree relatives of a child that died of sudden cardiac arrest caused by an underlying genetic heart rhythm disease the words “unknown” or “undetermined” or “possible cardiac” on the death certificate is too often their own death sentence. (this will sound like hyperbole …. until it happens to your family). Inherited structural diseases, the cardiomyopathies such as HCM and ARVC can normally be detected through routine examine due to the extensive remodelling of the hearts structure. Inherited electrical diseases such as Long QT and Brugada Syndromes are more challenging as the telltale electrical signature of the disease is now switched off.  Often molecular genetic testing is required to determine cause. There are currently at least 15 genes and many more mutations associated with the various heart rhythm diseases and with the intensity of research in the field that number grows almost monthly. When on autopsy a clear phenotypical cause of death does not present the coroner must use DNA testing to seek a genotype that suggests a likely cause.

Coroners and ME’s should be collecting and storing genetic material, blood and tissue, for all young person deaths - under the age of 35 would be ideal, 18 is too low. Every province and state should have a DNA Bank where death investigators can safely store and easily access genetic material. Collecting and testing DNA samples from infants where the death was classified as SIDS (Sudden Infant Death Syndrome) is essential. Published research estimates up to 30% of all SIDS death are caused by an arrhythmia gene.

Every time a young person dies of “cardiac” or “presumed cardiac cause” both sides, the ME's Office and the Family (with guidance from the family physician) should be pursuing DNA testing.  Typically if the family does not ask, the ME will not initiate genetic testing.  Typically if healthcare professionals do not present DNA testing as an option the family is unaware of its availability and unaware of its lifesaving potential for gene positive first degree relatives. This is why death investigators and family physicians should be simultaneously informing parents of their options.  If it takes two or three or ten years for the family to recognize the importance of genetic testing the genetic material should be readily available when the call comes.  Note:  The family physician may wish to call upon the services of a genetic counsellor to help the family understand the importance and significance of genetic testing and the implications of all of the possible results – positive, negative, undetermined or any number of shades of grey.

When the testing is complete and the results are positive for a known genetic association with a heart rhythm disease the real work begins, notification and testing of all first degree relatives.  Most primary heart rhythm disease are transmitted by an autosomal dominant gene – if one parent carries the gene on average half of the children will acquire the gene, with no gender bias.  Step one therefore is determine which parent carries the gene.  Note: I have worked with a family where one parent was positive for Long QT and the other for ARVC, rare but possible.  Step two is to test siblings and then aunts, uncles, cousins and grandparents on the affected side of the family. It is common to identify four, five or more affected first degree relatives for every index patient.  This is the silver lining; this is the gift that the deceased has given to his or her family.  From one child’s death comes the ability to identify many at-risk relatives and provide them with the appropriate prophylaxis for sudden death.  
 

Step two is not without challenges. Identifying and locating all of the potentially affected family members may be difficult, convincing each of them that they should get tested for a genetic disease that they have never heard of  may be near impossible.    “Catcallamungowhatapolywhatacardia….. You think I might have this wack-a-doodle disease and should get tested?”    At this point all of the stakeholders – the Parents of the deceased, the Family Physician, the Paediatric Cardiologist/Electrophysiologist, the Genetic Counsellor, the Coroner’s Office must work together to protect the living.

Often this process moves into areas where the moral/ethical issues around personal health information privacy come into play.  Navigating these waters can be tricky, rules must be followed and boundaries respected. On a very personal note I believe that when a child’s life hangs in the balance it is best to err on the side of protecting the child.  I hate it when children die with their parents privacy still intact.

The other critical challenge in this process is speed. The Family and the Coroner’s Office must move quickly to pinpoint the cause of death and then to locate and test the first degree relatives. It is difficult to say exactly what the appropriate time frame is for this often complex process to play out but I would submit that if seventeen and eighteen year old cousins die just over one year apart the system has failed both families. Anecdotally, I hear some version of this story far too often.

In every jurisdiction in North America there is significant room for improvement in the way death investigations of young people dying from cardiac causes are handled and followed-up.  If you are an advocate for cardiac arrest prevention in youth please be sure to include improving protocols for death investigations on your must-do list when speaking with provincial or state bureaucrats and legislators.  If you are a family that has lost a child to sudden cardiac death and are unclear what triggered the event push the healthcare and death investigation systems for answers.

The Arrhythmia Train

The Arrhythmia Train is pulling out of the station.  In my talk at Canadian Cardiovascular Congress (CCC) in Vancouver I spoke about the growing awareness of Inherited Heart Rhythm Disorders that I have been observing in many communities and organizations.  My observation has been confirmed over the past few weeks as there has been a flood of arrhythmia news both in the mainstream media and in the places where only an arrhythmia geek like me would look.

The folks at CHEO (Children’s Hospital of Eastern Ontario, Ottawa) have put genetic heart rhythm disorders, especially Long QT Syndrome, front and centre. CHEO has launched a legal challenge to the concept of patenting a gene or gene sequence.  A positive outcome to the case will benefit all Canadian families seeking diagnosis of a genetic disease.

http://ottawa.ctvnews.ca/cheo-launches-lawsuit-against-owners-of-gene-patent-1.2084430

In conjunction with the CHEO story CTV ran the story of the Dines Family from Ottawa. Their story is similar to many of the stories we hear from families affected by an arrhythmia gene. The elements of family history and misdiagnosis in the 20^th century are common themes.  The fact that a definitive diagnosis was made immediately based on a simple, inexpensive, non-invasive ECG is also noteworthy.

http://www.ctvnews.ca/health/diagnosis-of-genetic-heart-rhythm-disorder-life-changing-for-families-1.2089409

A colleague from Victoria BC sent me information about Sports Cardiology BC and the ECG screening clinics that they are hosting in that province.  At the end of November they will be hosting a clinic in Victoria for competitive athletes between the ages of 12 and 35. To the best of my knowledge, please correct me if I’m wrong, this is the first and only group to hold ECG screening clinics for Canadian youth.  While the merit of ECG screening is debated in the cardiology community PACED sees this as a very good thing.

http://www.sportscardiologybc.org/news/sports-cardiology-b-c-is-coming-to-victoria/

In a related story Dr. Vicotria Vetter the highly respected paediatric cardiologist from Children’s Hospital of Philadelphia (CHOP) came out firmly in support of ECG screening for all youth.

http://www.pharmiweb.com/PressReleases/pressrel.asp?ROW_ID=102909#.VFzsq410zec

More positive news (with a very sad and tragic etiology) out of BC is the $1.7 million out-of-court settlement paid by a Vancouver School Board to the family of child with Long QT. The board failed to prevent the cardiac arrest which left the Grade 5 girl with significant physical and neurological deficits. These preventable tragedies should not happen however lawsuits encourage the type of due diligence that can prevent future tragedies. Ontario law firm Miller Thomson picked up on the story and discusses the implications in their client newsletter.  Our thoughts and prayers are with Bezawit and her family.

http://www.millerthomson.com/en/publications/newsletters/education-law-newsletter/september-2014/keeping-abreast-of-the-standard-of-care

Perhaps the most exciting news to come out of CCC is that the BRIDGE project at Canadian Cardiovascular Society (CCS) has invited a SUDY (Sudden Unexpected Death in Youth) working  group to join the project. This invitation from CCS represents invaluable recognition for Inherited Heart Rhythm Disorders, the Electrophysiologists that treat them and the families affected by them. To learn more about the BRIDGE project visit the website.

http://bridge.ccs.ca/index.php/en/

Closer to home PACED is very pleased to announce that a new and improved version of Bill 81, The Inherited Heart Rhythm Disorder Awareness Act, 2012 is in the works and may be receiving First Reading at Queen’s Park prior to the Christmas Break.  Amongst other things  bill require that 911 be called for all children that faint during physical activity at school or while participating in minor sport and that they be physician cleared for return to play. It will also require educators and coaches to receive regular training on recognizing and responding to the warning signs.

http://www.ontla.on.ca/web/bills/bills_detail.do?locale=en&BillID=2629&isCurrent=false&ParlSessionID=40%3A1

Here are seven links to recent news stories that are directly related to creating greater awareness and heightened sensitivity to the warning signs and prevention strategies for Inherited Heart Rhythm Disorders and sudden cardiac arrest in youth. The Arrhythmia train is picking up passengers and momentum.