In May of 2016, there was a Federal Framework on Lyme Disease Conference in Ottawa. This conference came about because of Elizabeth May’s Bill C-442, “An Act Respecting a Federal Framework on Lyme Disease” which received Royal Assent on December 16, 2014″ – http://www.parl.gc.ca/HousePublications/Publication.aspx?DocId=6836507&Language=E&Mode=1&File=27#1

Of particular interest is the opening paragraphs:

“Whereas Lyme disease in an illness caused by the bacterium Borrelia burgdorferi that is spread to humans and animals through the bite of certain types of ticks and that can have serious consequences if left untreated, including recurring attacks of arthritis and neurological problems;

Whereas the risk of exposure to Lyme disease is highest in parts of southern and southeastern Quebec, southern and eastern Ontario, southeastern Manitoba, New Brunswick, Nova Scotia and much of southern British Columbia;

Whereas numerous peer-reviewed scientific studies have warned that a warming climate will expand the geographic range of Lyme disease-carrying ticks further into Canada, including a 2012 paper by Leighton et al., which states that over 80% of the population in Eastern and Central Canada could be living in areas at risk of Lyme disease by 2020;

Whereas, since 2009, Lyme disease has been a nationally reportable disease in Canada and all medical professionals must report cases of Lyme disease to their provincial public health authority, which in turn provides the data to the Public Health Agency of Canada;

Whereas Canadians will benefit from the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease, a coordinated national effort to track the spread of the disease, and increased public education and awareness to better prevent and detect instances of Lyme disease in Canada;

Whereas recent research further demonstrates the persistence of Borrelia spirochetes after antibiotic treatment that follows the guidelines used in Canada (Embers et al., 2012) and indicates that current serology does not adequately describe the diversity of Borrelia bacteria existing in Canada and that the general understanding of, and practices for dealing with, Lyme disease are no longer sufficient or in line with emerging evidence of how the disease operates (Ogden et al., 2011);

Whereas the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness;

And whereas the 2010 report prepared for the Provincial Health Services Authority of British Columbia entitled Chronic Lyme Disease In British Columbia, A Review of Strategic and Policy Issues concluded that current diagnostic testing for Lyme disease is inadequate and advocated placing the highest priority on the development of reliable diagnostic testing for the disease and on educating physicians so they can recognize the symptoms of Lyme disease and treat patients in a manner that is medically appropriate including treatment with antibiotics as justified.”

Although the Act required that:

“The Minister must, no later than 12 months after the day on which this Act comes into force, convene a conference with the provincial and territorial ministers and stakeholders, including representatives of the medical community and patients’ groups, for the purpose of developing a comprehensive federal framework that includes:

(a) the establishment of a national medical surveillance program to use data collected by the Agency to properly track incidence rates and the associated economic costs of Lyme disease;

(b) the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease, and the sharing of best practices throughout Canada; and;

(c) the creation and distribution of standardized educational materials related to Lyme disease, for use by any public health care provider within Canada, designed to increase national awareness about the disease and enhance its prevention, identification, treatment and management.”

There was a delay in holding the conference due to the Federal election and, by that time, many were “chomping at the bit” so to speak to get this issue moving forward. I was one of the fortunate ones to have been able to travel to Ottawa for the conference. A considerable amount of information was given over the three day period. There were Doctors, researchers, patients, support people, etc., all involved and being asked to provide their input, which all did freely and with the hope that change would be forthcoming.

The best part of this conference was that it brought together Lyme sufferers from coast to coast to share their stories and, more importantly, share their ideas. One of the ideas coming from this conference was VOCAL – Voices of Canadians About Lyme.

Those of us at the conference realized that only a small segment of Canada’s population were aware that this conference was taking place. If you were not on social media, chances were that you did not hear about it via your local radio or tv stations or via your local newspaper.  If was felt that VOCAL would be a way to show the government and doctors that Lyme and tick borne diseases are a bigger problem in this country than anyone truly knows. It was hoped that one day awareness/education events occurring simultaneously across Canada would finally show that this issue is not one to be ignored or underestimated.

Since the commencement of the organization of this one day event, however, the draft Federal Framework on Lyme Disease was released and it has been deemed to be inadequate in the minds of all Lyme sufferers, their support people and thousands of others. The release of the draft resulted in a number of Lyme awareness initiatives one of which, a Change.org petition – https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now has resulted in over 39,000 supporters which we would now like to see attend an event near them to put faces to the names.

Of these 39,000+ supporters, thousands left comments on how they were treated, or not, for tick borne diseases in this country. It has become even harder to be counted as a confirmed/probable case of Lyme and, if you don’t fall under the overly stringent guidelines, you are not counted. There are hundreds, if not thousands, that fall under this umbrella of not being counted.

It’s time to be VOCAL and visible!