Lyme Disease there Ought to Be a Law, and There Is!

Published in Vitality magazine May 1, 2015:

Readers of Vitality magazine will know that May is Lyme Disease awareness month. This magazine has done a real public service by educating people about Lyme disease for years. My own journey to understand the threat of Lyme disease started in 2007 when one of my neighbours in Pictou County, N.S. told me why she was in a wheelchair. It was not what I had ever imagined could happen from Lyme Disease. Brenda Sterling’s story really shocked me. She went from being healthy and active to being wheelchair-bound. And she told me it was because of a bite from a tiny tick. But what was most shocking was that, once she discovered the source of her illness – Lyme disease – the medical establishment in Nova Scotia did not believe her. “You cannot have Lyme disease,” they told her. “We do not have Lyme disease in Nova Scotia.”

When I moved to southern Vancouver Island, I ran into many more people with the virtually identical experience. Over and over again, I heard the same story: “You cannot have Lyme disease. We do not have Lyme disease on Vancouver Island.”

 

And I heard, over and over again, “You won't believe this, but I had to go to the U.S. for treatment.” Tragically, I heard this more than once, as well as, “We sold our house to get the treatment we needed in the U.S.”

 

What I found baffling was the resistance, from some in the provincial health departments and some family doctors, to taking Lyme disease seriously. There could be no vested interest at work. Unlike my decades of experience fighting toxic pesticides and herbicides like Agent Orange, there was no profit motive to explain the rigidity of the resistance. When spokespersons for Dow or Monsanto made claims that Agent Orange was safe enough to drink, I knew I was dealing with the profit motive and experts for hire. But this made no sense.

 

Lyme disease was clearly spreading in Canada. The science regarding the climate crisis lined up with the experience of Lyme disease.

 

I have been working on climate change issues for decades now as well. Early reports from the mid-1980’s referred to the reality that a warming climate would bring with it an increase in vector-borne diseases.We used to point to malaria and Dengue fever as increased risks. But for Canadians, the first significant public health impact has been from Lyme.

 

It was not that our doctors and health agencies were deliberately misleading those patients who came to them with the debilitating symptoms of Lyme. It was that when these doctors and experts had gone to medical school there was no such thing as Lyme disease. Its rapid spread, due to climate change, meant that what they thought they knew was no longer true.

 

The Birth of a Private Members Bill (PMB)

The frequency with which I ran into Lyme disease patients, and heard their heart-wrenching stories, made me realize we had an orphan issue. Nowhere near enough attention was being paid to this growing illness. One of my most fervent supporters, a former Conservative, Fraser Smith, also had a family member suffering with Lyme. Even as I campaigned for the seat representing Saanich-Gulf Islands, an idea began to form in my mind. If I had one crack at a private member’s Bill (PMB) in parliament, I would make it a Bill to help people with Lyme disease.

 

Generally speaking, private members’ Bills do not pass. In fact, the general experience is that fewer than 2% of such bills ever become law.

 

I started work on my Bill right away.

 

There were jurisdictional considerations. No federal law can interfere with areas of provincial jurisdiction. Health care delivery is federal, but coordinating a federal strategy with other levels of government that is within the federal Bill is not allowed to require the spending of money. The parliamentary system has House of Commons ‘drafters’ who work with Members of Parliament to develop their Bills.

 

We went to work to craft a Bill that I believed could receive all party support.

 

The next question: When would I be able to have my Bill put forward for a vote? This is determined by a lottery. Yes, an actual lottery in which each MP not within the Cabinet gets a numbered ranking for putting Bills forward. I got number 150. Not as good as number 1, but a lot better than number 280!

 

In developing the Bill, I consulted with members of the medical community, experts in public health, and the Canada Lyme Found-ation. We decided to structure the Bill around the creation of a federal strategy with several components: Better prevention through public awareness, better detection and diagnosis, better data collection, and work to find a cure for those who were experiencing long term issues as a result of Lyme disease.

 

Given the high emotions around the terminology, I decided not to take a position on whether long term illness is described as “chronic Lyme” or as “post-Lyme disease.” I needed as much support as possible to get the Bill passed, so I avoided entering into battles over labeling.

 

Support from Politicians and the Public

The way the Bill would work was to set a strict time limit on how long after the Bill passed that the Minister of Health would take to hold a national meeting, involving all key medical and expert groups, federal, provincial and territorial health ministers, and representatives from the Lyme disease community. With everything checked, i’s dotted, t’s crossed, in English and in French, I was all set to submit the Bill for First Reading in June 2012. I was supposed to have a time slot for First Reading on one of the last days of the June sitting. I happened to overhear other MPs talking about early adjournment. I went to the other party whips to make it clear I would not consent to early adjournment unless my Lyme disease Bill went to First Reading before the summer recess. It was a near miss, but we got the Bill tabled.

 

That was essential, as a Bill accepted for tabling cannot be shared publicly until after it receives First Reading. I knew that, in order to pass the Bill, we would need tons of support from across Canada. The best way to do that was to ask for the Lyme disease community to help us by taking copies of petitions we had drafted in my office, getting them signed locally, and taking them to their MPs to explain the issue. Our plan was to start with petitions across the country over the summer of 2012. We nearly lost that chance with the early adjournment, but thanks to good luck and help across the House, I got the Bill through First Reading moments before an early adjournment.

 

Fairly quickly, the other opposition parties – the Official Opposition NDP and the Liberals – told me they would support the Bill. NDP Health Critic (at that time) Libby Davies promised full NDP support. Kirstie Duncan,  Liberal MP with a background in health issues and a champion for MS patients, was also quick to help me.

 

Over the summer, the Lyme disease community got thousands of signatures on petitions. At the same time, my office was overwhelmed with letters and phone calls from Canadians from coast to coast sending us heart-wrenching stories and offering their support for the Bill. Media stories also began to increase, using Bill C-442, the act to create a federal Lyme Disease Strategy, as a ‘hook’. Some even told me that my Bill was already a success – whether it passed or not – because it had increased awareness. But I was never prepared to settle for less than getting the Bill passed.

 

Support continued to build. It was always critical to obtain endorsements from

credible ‘Establishment’ experts. We were grateful for letters of support from the Nurses Association, and from family physicians across Canada, but the major endorsement from the Canadian Medical Association was powerful.

 

The president of the Canadian Medical Association, Louis Hugo Francescutti, had this to say:

 

“Diagnosis of Lyme disease can be difficult because signs and symptoms can be non-specific, and found in other conditions. If Lyme disease is not recognized during the early stages, patients may suffer a seriously debilitating disease that may be more difficult to treat.”

 

I had been hoping for support from the Minister of Health. Clearly, a private member’s Bill from the Green Party would not have a hope if the majority of Conservative votes were whipped to vote against my Bill. Even though it is a parliamentary tradition not to whip votes against PMB’s, I had seen it happen all the time. To get my Bill past Second Reading and into committee, we had to have support from the Conservatives. Individual Conservative MPs were quick to offer support. Terence Young from Oakville had knowledge of Lyme from his own crusading work on health issues. Brad Butt, Gordon Brown, Dave Tilson, Michael Chong, and John Williamson were early allies in the Conservative Caucus – but that would all be for naught if the Bill was opposed by the Minister of Health.

 

In July 2013, Stephen Harper shuffled his Cabinet. Someone I had always liked, and for whom I had respect and a positive working relationship, was appointed Minister of Health – Rona Ambrose coming into the portfolio was, no doubt, a lucky break. As soon as the House resumed in the fall, I sought her out to tell her about Bill C-442 and the human toll of Lyme disease. I also wanted her to know that my approach was completely non-partisan; that I was flexible about any changes she might want. I was immediately encouraged by her positive response. She committed to looking at it.

 

By spring 2014, everything began to come together. Health Minister Rona Ambrose committed to supporting the Bill, with me making only slight amendments. The first big hurdle was cleared on April 29, 2014 when we received unanimous support to send the Bill to committee. The hearings before the Health committee were positive and helpful.

 

The experts from the Public Health Agency provided strong support for action. Steven Sternthal, Acting Director General for the infectious disease branch, told the committee, “The spread of Lyme disease is driven, in part, by climate change, as the tick vector spreads northwards from endemic areas of the United States. Moving into Canada, it is impacting our most densely populated regions. Based on the lessons learned in the United States, we anticipate the disease will affect over 10,000 Canadians per year by the 2020s.”

 

The most impressive witnesses were likely Chris Powell and her daughter, Nicole Bottles. Nicole is one of those southern Vancouver Island Lyme disease patients who had prompted me to champion this cause in the first place. Their evidence was compelling. Nicole uses a wheel chair. Her charm and wit shine through, even when describing how ill she became while no medical help came forward. Her mother said through her tears that, if they had not sold their home and gone to the U.S. for treatment, she was sure Nicole would not be here today.

 

No witnesses testified who wanted any changes beyond those that the Minister of Health proposed, and which I supported. No one came forward criticizing Bill C-442. The Bill was reported back to the House where, thanks to cooperation from MPs on all sides of the House (letting my Bill jump through some hoops, and allowing some PMBs to wait until after mine had received its final vote), the Bill passed the House of Commons unanimously on June 11, 2014!

 

Opposition from Experts

However, the fight was just starting. Experts in Infectious Diseases started a media campaign against C-442 just as it went to the Senate. I asked an old friend, Senator Janice Johnson of Winnipeg, to sponsor my Bill and steer it through the Senate.

 

The committee hearings were set to begin in the fall and I was to be the first witness. I had pleaded with the experts  in infectious diseases to understand the process. They raised a last-minute objection in the preamble. I tried to explain to them that the preamble was not something we could amend in the Senate (as a matter of procedure, this could only be done if the whole Bill was overhauled to such an extent that the preamble no longer made sense). I was nervous knowing that the Bill would now have experts opposing it.

 

The morning of the first day of Senate hearings dawned. Who could have known on October 22nd that the events of that day would overshadow everything else? Instead of being in the senate to testify, I was in lock-down for ten hours on Parliament Hill. The police and security guards carefully searched every nook and cranny of Parliament Hill to be certain that the ‘now-dead gunman’ had no accomplices.

 

When the House resumed the next day, the Health Committee of the Senate had other business. I became nervous that my Bill would not get through the Senate before the Christmas recess.

 

Fortunately, once again, luck was with us. The Senate hearings took place just before I had to leave for the climate negotiations in Lima, Peru. The members of the Health Committee were strongly supportive. Senator Larry Campbell and Senator Janice Johnson had been making sure the Senate was supportive. Coincidentally, many members of the Senate had friends or relatives who had experience with Lyme disease.

 

Even in the face of witnesses demanding the Bill be rejected, it sailed through the committee with no amendments. Bill C-442 was passed in the Senate on December 12 and received Royal Assent on December 16, 2014. It is the law. Now we wait for the Minister of Health to convene the national conference to develop the strategy. In the meantime, Minister Rona Ambrose has committed $5 million from Health Canada to better respond to Lyme disease federally. There is more that needs to be done, but this is a first step. And it could never have happened without the work of Lyme disease patients and their families.

 

Current Status

The passing of Bill C-442 has created a Federal Strategy for Lyme Disease. Now that the Bill is law, the federal Minister of Health is required to convene a federal/provincial/territorial conference, including medical experts and representatives of the Lyme Disease community, before the end of 2015. The goals include: develop better strategies for prevention, speedy diagnosis, best standard of care for treatment, and further data collection and research.

 

About the author

Elizabeth May is Member of Parliament for Saanich-Gulf Islands, an environmentalist, writer, activist, lawyer, and leader of the Green Party of Canada. She held the position of Senior Policy Advisor to the federal minister of the Environment from 1986 until 1988. Elizabeth was the Executive Director of the Sierra Club of Canada from 1989 to 2006. She is an Officer of the Order of Canada, author of eight books, was chosen (by a vote of all MPs) as Maclean’s magazine's 2012 Parliamentarian of the Year, 2013 Hardest Working MP, 2014 Best Orator and by Hill Times as 2013 and 2014 Hardest Working MP and Best Constituency MP.

 

RESOURCES

• Canadian Lyme Disease Foundation provides information, including prevention, diagnosing, and testing for Lyme: Contact via: CanLyme.org, email: info@lymeontario.com or on FB

• Ending Denial, 2014 edition second printing, available from BioMed Publishing 530-541-7200 or on Amazon: http://tinyurl.com/nzlae5j

• International Lyme and Associated Diseases Society (ILADS) has a number of Canadian MDs as members. Visit: www.ilads.org, email: contact@ilads.org, or call 301-263-1080

• Technical Report: Update on Lyme Disease Prevention and Control, including information on blood testing, Public Health Ontario (PHO): http://tinyurl.com/lmekr57


Showing 2 reactions

Please check your e-mail for a link to activate your account.
  • commented 2015-10-26 07:12:08 -0700
    Thank you! Thank you! Thank you! I was diagnosed with Lyme disease earlier this year and it was quite the struggle to get proper diagnoses (I ended up paying to have testing done in the states). Also, I have yet to find anyone willing to take me on as a patient and treat me for this condition. This whole situation has been exhausting physically and emotionally. I have felt as though the health care system in Canada was failing me. I would like to thank you from the bottom of my heart for advocating for individuals such as myself who are suffering with the horrible disease! There is now hope for the future… :)
  • commented 2015-09-19 00:06:15 -0700
    I can not thank Elizabeth May enough for her dedication and hard work. I am crying as I type this. I was diagnosed with Lyme Disease about 3 months ago. I have had it for 20 years. I am currently very, very ill. I feel like I’m dying. I hope that things change in our health care system. Everyone needs to know about this disease.
    Thank you Elizabeth May. I now know which party I’m voting for.
    Sincerely,
    Kate Knight.