Council Presentation I like to thank the Council for having me. My - PDF document

JUNE 28, 2011 Page 1 of 18 5 a - CC Council Presentation I like to thank the Council for having me. My name is Christine Heffer. I am here today to ask the County of Middlesex to endorse the Lyme disease petition set forth by MPP Bob Bailey of Sarnia Lambton and help raise awareness of this infectious disease. I have Lyme disease. I contracted Lyme here in Ontario. This disease is the fastest growing infectious disease in North America with an estimate 400 000 people infected yearly. Lyme disease is caused by the bite of an infected tick which carries the bacteria Borrelia burgdorferi. In fact the Lyme bacteria are usually not the only pathogen transmitted by a tick bite. Often one tick bite will transmit numerous infections making this disease very complex. If not caught early Lyme disease becomes incurable and difficult to treat and similar to having AIDS. It took me 4 years to get diagnosed. Doctors in Ontario did not know what was wrong with me. I suffered many unnecessary tests, procedures and even a major surgery due to faulty testing and general lack of knowledge about Lyme disease in this province. At one point I was so disabled by this disease I was unable to complete a sentence and was bedridden. To say this disease has destroyed my life would be an understatement. When I began to research Lyme disease I was shocked to discover that this disease is spreading at the rate of 7x that of AIDS. With a disease that is spreading so quickly I was surprised that there is little being done by Public Health to educate the Public about a deadly bacterial infection that can be contracted in their backyards, even though in 2000 the Canadian Medical

JUNE 28, 2011 Page 2 of 18 5 a - CC Association advised that Lyme disease was spreading in Ontario particularly in Southern Ontario. I believe that had Public Health made Lyme disease education a priority I would not be fight for my life now. Patients who contract Lyme in this province are faced with an uphill battle to get diagnosed and treated. The present testing for Lyme disease in Ontario is dismal at best and has been shown in many studies to be faulty. (I myself was tested 3 times all coming back negative). Most physicians I`ve seen know little about Lyme disease, how it presents or how to treat it. And since it mimics many other illnesses people are often misdiagnosed with MS, Parkinson`s, fibromyalgia, ALS and many more. I was told I could have MS. When questioning the various organizations responsible for educating physicians in Ontario none of the groups could say who is responsible for or who is providing the education on this rapidly spreading infectious disease yet the PHAC has stated that the clinical skills of medical practitioners may be paramount in responding to the emergence of LB in Canada. The belief that the risk of contracting Lyme is rare in Ontario and Canada has resulted due to faulty testing and passive tick surveillance which are not catching the true number of cases of infected people and ticks. In fact PHAC has stated that under reporting in Canada is likely. When I questioned Public health about the lack of tick drags I was informed that the Ministry will only instruct the local health units to do a tick drag if the ticks received by the public are identifying an area of risk yet Public health will only accept ticks that have been on a person and refuse to test ticks from animals or collected from an area by the

JUNE 28, 2011 Page 3 of 18 5 a - CC public which would provide them with greater surveillance even though the PHAC stated that Ticks collected by members of the general public, veterinarians, medical professionals and wildlife biologists from pets, people, or wild animals can be submitted for identification and testing. A Canadian study showed that migrating birds are transmitting millions of ticks from endemic areas in the US into Canada yearly resulting in the ability to contract Lyme anywhere in this country. The Canadian Lyme Foundation receives thousands of calls yearly from people through this country who believe they have Lyme disease. The effects of Lyme disease on the community are far reaching. Not only is the personal loss experienced by the patient and the people who love them devastating but the loss to the community of a productive member who was contributing taxes and supporting the economy but now is forced to draw on many social services and in many cases become a burden is great. In the States it is estimate that the cost of Lyme disease to the economy is over two billion dollars per year and rising. A lot of what I spoke about could be improved upon if the provincial government implemented the changes requested in the petition. We need better testing which is available, a wide scale education program by Public Health and mandatory training for physicians on how to diagnose and treat Lyme disease so people in Ontario don’t have to go to the US to receive treatment and be forced to choose between selling their homes and spending their life savings in order to get it or becoming so disabled by this disease that even the basic task of caring for one`s self is near impossible.

JUNE 28, 2011 Page 4 of 18 5 a - CC In closing I would like to say that my experience with this disease has been in a word unimaginable. And my experience is not unique as thousands of Canadians have the tale to tell. To be ill with a life threatening infection is difficult enough but when all of the safe guards and protections of society disappear it is shattering to say the least. When I speak to people about Lyme disease most are unaware and shocked to discover what a tick can do. I am working hard to educate as many people as I can and my hope is that with this petition changes can be made to give this disease the respect that it deserves. I hope that the Council will support this petition on behalf of the citizens of Middlesex but even more important than that after learning about Lyme disease I hope everyone here will educate your families, friends and neighbours. This disease is insidious and horrific and if by my being here today speaking to you one less person has to experience what I and thousands of other our Canadians have I will have achieved part of my goal. Now I would just like to highlight some of the information I supplied in your packages.

JUNE 28, 2011 Page 5 of 18 5 a - CC LYME DISEASE AND THE EFFECT ON SOCIETY • Lyme disease is transmitted by the bite of a tick infected with Borrelia burgdorferi and results in a systemic infection similar to syphilis • Lyme disease is the fastest growing infectious disease in North America with an estimated 400 000 cases per year in the US • Lyme disease has been shown in studies to be increasing across Ontario especially in Southern Ontario • Everyone is at risk especially children (age 2-14 highest risk group) • Lyme disease is can be found everywhere, at parks, in yards, in gardens as ticks are transmitted by birds • Public awareness, testing and treatment for this disease is poor • If not caught early Lyme disease becomes chronic and incurable requiring long term treatment much like AIDS does • A person infected with Lyme disease often becomes total disabled • The far reaching effects of this disease on our communities include loss productivity , loss tax revenue, increased medical costs and increased burden on social services • The Lyme petition is requesting the Provincial Government increase public awareness, educate physicians about Lyme disease, replace the faulty testing and allow people infected with Lyme disease to receive treatment in Ontario • I am looking for the support of the County to give the petition more weight when brought to Parliament

JUNE 28, 2011 Page 6 of 18 5 a - CC These maps are from the Public Health of Canada – Canadian Communical Disease Report Jan 2009 The rising challenge of Lyme borreliosis in Canada, Canada Communical Disease Report 1 January 2008 Volume 34 Number 01 NH Ogden, DPhil, (1), LR Lindsay, PhD, (2), M Morshed, PhD, (3), PN Sockett, PhD, (4), H Artsob, PhD, (2) http://www.phac-aspc.gc.ca/publicat/ccdr-rmtc/08vol34/dr-rm3401a-eng.php (to view whole doc) This map is the projected spread of the black legged ticks. You can see that southern Ontario was well covered in 2000 and will be completely covered by 2020. This map represents the black legged ticks collected by passive survalance from 1990-2003