The Arthritis NewsletterFall 2011
Bring Hope To Others: Linda Wilhelm Part 1
Linda Wilhelm is the Atlantic Canada representative and Co-Chair for the Consumer Advisory Council. She is on the operations committee of the Best Medicines Coalition, frequently participates in Health Canada expert advisory panels and conferences concerning access and drug safety issues. She is a member of The Expert Advisory Committee for Vigilance of Health Products and a member of the Drug Safety and Effectiveness Network’s steering committee.
Linda has been an active advocate for treatment access and quality of care for all patients both regionally and nationally for over ten years and is a past board chair for the New Brunswick Division of the Arthritis Society.
Linda has been living with Rheumatoid Arthritis for over twenty-five years. She and husband Kerry have been married for over 25 years, have three grown children, one grandson, and live in Midland, Kings County, New Brunswick. Linda is an inspiration to all those living with arthritis. In fact, this summer she learned to Kayak, but that’s not all … would you believe …
…Running for MP in the Riding of Fundy Royal
Linda’s Journal: March 26, 2011 – Day One, Week One
PM Stephen Harper visited the Governor General today to call for an election. We’ve been constantly hearing that an election is imminent and frankly, I think most Canadians feel as unengaged by the news as I do.
“K” and I were taking advantage of what was a cold rainy day to watch a movie when the telephone rang, as it always tends to do when we get into a movie. The call was from the Co-chair of The NB Elections readiness committee. I couldn’t imagine why she would be calling me. I had met her in June 1999 when she was seeking re-election for a MLA in my provincial riding. At the time I had lost my mobility due to RA and was in limbo waiting for *Enbrel’s approval by Health Canada, becoming more and more desperate by the day. I asked her about access to the new drug. She said that access to drugs was “complicated” and her answer made me furious. In hindsight, what I perceived as evasion was actually the truth, it was and is extremely complicated. In the past 12 years, I have come to realize just how complex our healthcare system is and my anger faded away a long time ago. I guess if it were not for her, I wouldn’t have set myself on the path that I ended up on, all to prove that I could understand the drug approval system in Canada.
She called to ask me to run for the Liberal Party in Fundy Royal for this election!! This was the last thing I expected to hear or to be doing at this point in my life. The riding of Fundy Royal is tucked away in what is a largely rural region of south east NB and has only gone to a Liberal once in 90 years, Paul Zed won it in 1993 and he had the Irving family and money backing him.
I call each of my three kids who live in Moncton, Saint John and Fredericton. I want them to be okay with this since part of an election campaign could mean personal criticism of their mom and they have lived through so much in their lives with my RA, making them very protective of me.
The local Liberal riding association is obviously disorganized, if they ended up asking me on the very day of an election call, but they have a bit of money to run a low key campaign. But I will have flexibility in what I can say, which enables me to bring forward the issues that are important to patients and maybe I can make some contacts that will benefit me in my advocacy work.
I plan to bring my life experiences to this campaign: the launch of The Arthritis Bill of Rights and Responsibilities; The Romanow Commission on Health care cross country tour; appearances before The Standing Committee on Health; the negotiation of the 2004 Health Accord; and my work with Health Canada on expert advisory committees, panels and working groups.
My pretty extensive media experience, which includes CTV and A Channel interviews; Canada AM with Seamus O’Reagan; CBC NB clips on Arthritis treatments and care; newspaper articles by Andre Picard in the Globe and Mail; an op-ed piece and Letters to the Editor (too numerous to count) will come in handy.
Linda’s Journal: March 27
What in heaven’s name have I gotten myself into this time? That was my reaction after they delivered the 1 inch thick packet of forms that need to be filled out—- some for the Liberal Party and some for Elections Canada, including 25 signatures from residents who live in the riding saying I will be a suitable candidate. They tell me not to worry about the signatures yet; we can get them at my nomination meeting on April 5. I begin the process of completing all the necessary forms, providing every detail about myself and my life for the public record. I’m not sleeping well, waking up with anxiety attacks in the middle of the night and not being able to get back to sleep. I hope my RA doesn’t flare up; fatigue is a major factor in a flare and I have been doing so well on Simponi*** after a slow start.
Linda’s Journal: March 28
My first campaign team meeting. There are four of us going through the list of the many things we need to get done to get ready for the nomination meeting just over a week away. We need a bio from me with all my credentials. Some voice concern that my experience is not broad enough, too health related. I find myself becoming defensive, having worked very hard, putting in countless volunteer hours to help all Canadians access the treatments they need, as well as my membership on so many committees. I understand that they don’t understand just how much has been accomplished, or how challenging it was to become more known nationally and provincially than locally and thus often too busy to attend all the local community events. Have I made a major mistake in stepping up to do this? I am in a good place in my life, happy that my kids are all grown up and independent, satisfied that my volunteer activities are making a difference, even if others don’t know what I do and that their lives will be better because of it. I am angry at K for pushing me to take this on. After all, the Liberal party came to me and now seems to be suggesting that my experience is not broad enough!
Linda’s Journal: March 29
The Canadian Cancer Society NB (CCS NB) is holding two events this week to put pressure on the Alward government on Catastrophic Drug Coverage (CDC). During the fall 2010 provincial election campaign, they promised us that CDC would be implemented but there is nothing in the budget and they are now saying it will only happen at the end of their FOUR YEAR term because the finances are so bad. We’ve heard that before from FOUR previous governments, and we can’t let them get away with it again.
We have our meeting this afternoon in Fredericton to see the video for the first time. I’m in it and it makes me cry, it is a powerful tool. The NB Prescription Drug Program manager provides us with an update, nothing much, just as expected; they send her as the sacrificial lamb, typical of politicians. When it is good news they take the credit, when it is bad news, send the public servant who then says it’s not their fault, but the elected officials.
I tell the CCS NB Executive Director and Public Relations person that I am running in the election and they are very supportive. Thank goodness for the formation of the NB Health Charities Coalition and their continued championing of this issue. Tomorrow there is a MLA breakfast where the video will be shown, then released to the public.
It still hasn’t quite sunk in that I have been asked to run in this election, but I’m too busy with this right now to think about it!!
Linda’s Journal: March 30
The MLA legislative breakfast is being held at the Crowne Plaza Hotel in Fredericton across from The Legislature. There is a great turn out, except of course my own MLA and “M”. He didn’t even show up at the breakfast when he was in opposition. I recall that despite this— for the past 12 years—even while his party formed government—he would send anyone having difficulties in accessing medications to me so I could walk them through all the red tape. It’s infuriating that he can’t even show up to give support to this issue. “M” attended the first breakfast when they were in opposition but spent the entire time on her black berry, never even looking up. After the video was shown, there was complete silence in the room. However, the MLA’s promised to put aside the partisan politics and to work together to solve this. The Premier and the Minister of Health said they would start this year, not in year four, as previously stated. They also committed to having the NB Health Charities Coalition represented on the Advisory Committee for Health Benefits, which was formed during the previous government’s mandate.
People spoke of personal medical treatment experiences. One young woman who had cancer ten years ago spoke about the fact that she is still paying off her debt from her medication costs. The media was there and we had a great press conference with plenty of good coverage on the news and papers. I hope the Premier keeps his word. I believed him to be an honourable and a good man and I hope he doesn’t disappoint like so many others. I suspect that he doesn’t like my MLA, as he has not been given a cabinet position or been restored to the Speaker role despite this being his 4th term in office. I tell the Premier that I am running in the election for the Liberal party and he wishes me luck.
This evening at Walmart I run into “J S”. Her husband is a family doctor in Sussex who ran in a couple of “Joints in Motion” marathons while I was TAS NB Board Chair. They are wonderful people and she comes running up to me from across the store asking if it’s true that I am running. I confirm the news and she is very excited and supportive.
Back to the Federal Election campaign, another campaign meeting to finalize the program for Tuesday night.
Linda’s Journal: March 31
I do an interview with Andre Picard for his Federal election coverage in The Globe and Mail on the state of a National Pharmaceutical strategy, including the need for a National Pharmacare program. This can’t hurt my campaign. We post the CDC video on our facebook group, “Linda4MPFundyRoyal”, it is so powerful. “K” insists that I need a new high tech cell phone for the campaign. Now I have the added stress of how to figure out how to use it! “B” is jealous that I have a Motorola Atrix so that tells me I may never figure it out!!! I’m still not sleeping, there is so much to do.
Linda’s Journal: April Fool’s Day
Is this all a joke? No—- it’s not—and the stress levels are high. We go out for dinner with four friends. One couple just returned from a week in Jamaica, the other leaving on Sunday for the same. How lucky are they and how much more fun would that be than what I’m doing? Of course all the talk at dinner is politics despite everyone saying we wouldn’t go there. This election will probably come down to a decision on which political leader they like the best. I can’t believe that people will reward the government on its record. I call all my participants for the upcoming CDSMP set to start Monday night at 6:30 pm for two hours for the next 6 weeks. Like the catastrophic drug coverage events, this was planned before the election business and I am determined to do it. After all, I recognize that my chances of winning are slim and I do want my life back after the election experience. “G” tells me that anything can happen during an election campaign, which scares me because I’m not sure I’m ready to be an MP yet!!
Linda’s Journal: April 2,
The start of Week 2 ..There is a campaign meeting in a snow storm. It was supposed to be at 9:00 am and we pushed it forward to 10:00 am because the roads are so bad. No one is happy to see the snow after the tough winter we’ve had, and it is making everyone cranky, including the Liberal candidate.
The campaign team drafts a budget. We start to order brochures and signs. I am still stressed out because we are already a week into the campaign, we have no signs ordered, no one even knows there is a Liberal candidate running, the calls and emails are coming in steadily asking if anyone is running?
Linda’s Journal: April 3
The photographer comes from the Globe & Mail to take pictures for Andre’s article. The snow is a memory, melted away. My grandson Owen is over for a visit and he is such a sweetie, so happy all the time. My time with him will be severely limited for the next month and I miss him already.
Linda’s Journal: April 4
“K” and I go to Costco. We just get there and my new cell phone rings. Apparently, I need 100, not 25 signatures, from people in the riding!! My nomination meeting is tomorrow night!! Needless to say I’m not happy. Goodbye Costco!! We’re off to “G’s”, she knows I’m not happy and feeling almost ready to pull out. I pick up signature sheets. I feel I was a long shot to begin with and time is ticking away, all the other candidates have their signs up. “K” and I decide to have some lunch before heading out, but my appetite isn’t great. We walk into the Kozy Korner Restaurant and who is sitting there but my Conservative opponent, and another PC MLA. “B” asks me why I am running for the Liberals? I say that I dislike the Conservatives and why I feel that way. But they each signed the top of a signature sheet, which I could use to encourage others to sign, since “signers” don’t have to be Liberal. Within two hours, I have my signatures and I have finally completed the nomination papers. There is an announcement in The Telegraph Journal today on the candidates in Fundy Royal. At the same time, Andre Picard’s article is in the Globe & Mail showing my hands and speaking about the situation in NB. His figures show that the Federal government spends almost 30 billion dollars a year on health, with very little accountability. The Conservatives don’t believe the feds have any business getting involved with how the provinces spend the money. Who gives someone 30 billion a year and doesn’t care how it is spent? Good information for my campaign and an angle for the debates.
I receive a donation from my dear friend Colleen Maloney in BC with a very lovely note that makes me cry and gives me a renewed sense of purpose. The end result is not what matters to me; just the fact that I am doing this is the point. Who would have thought when I was in a wheelchair in 1999 that in 2011 I would be running for a Member Parliament, absolutely incredible? My email exchanges with Anne Dooley and Colleen lift me up and help me press on!!
After a hectic day, I head to Sussex to facilitate my chronic disease self-management program, the first of six two hour sessions but this is hard after a very hectic, stressful day and I’m exhausted. Fortunately I have an excellent co-facilitator, and we deliver the program we both know very well having delivered many of them but afterwards I’m more than ready to go to bed.
Linda’s Journal: April 5
My car, a 2001 Ford Focus, goes in for detailing. I do an interview with the Kings County Record, the local community weekly paper that everyone reads, to find out who received a DUI over the weekend or whose kid was in trouble lately.
Off to my nomination meeting; “P”, a prominent Liberal emailed “G” expressing his concern that I am an unknown in the community. Frankly, I don’t see anyone else stepping up to do this and had I known how badly organized they were I likely wouldn’t have either!! I’m exhausted already and my papers haven’t even yet been filed with Elections Canada, a week and a half into the election campaign—-although I have been accepted by the Liberal party.
“M M’ the former Liberal Government’s Health Minister and now Leadership contender came. I gave an amazing speech to a full house and standing ovation. All day my stomach was in knots but when I got into the room I just relaxed and worked the room. I know I surpassed their expectations and now have their full support.
Senator “D” does the opening remarks. “G” is afraid that he will go on too long and he does, but he is a good speaker so it’s okay. “J”, who was our Progressive Conservative MP before the reform and Canadian Alliance experiments, is introducing me. I first met “J” when I heard that he was having a public meeting in the nearby village of Norton. Fed up with my immobility and life of pain, I struggled to my car and drove there to speak to him about why it was taking so long for the new drug to get approved. It turned out that I was the only one who showed up and so I had his undivided attention for two hours. He tried to find out how I could access the drug, but it was just a few weeks later that I ended up in the hospital where I remained for almost three months, ultimately getting special access because I simply refused to go home until they gave it to me.
After I speak “P” is realizing that they are fortunate to have found me. “K” is shocked and surprised by my public speaking ability. Others are as well. They had the expectation that I would fall flat on my face. I think it’s the first time my son Blair has heard me speak. Some Liberals originally wanted to just have a NDP candidate running so the votes wouldn’t be split, but the guy who ran last time who did well is running in Saint John and they have an unknown running here as well. The public speaking part comes easy to me; it’s talking to people one-on-one that is harder for me to do.
Linda’s Journal: April 6
We finally take my papers over to the returning office to file them with Elections Canada. Of course they require one more paper, a letter from an auditor to say he is my auditor. A fax will suffice for now, but they must have the original by the first of next week. I can’t believe that they actually go through every one of the 100 signatures to make sure they are authentic. At 7:00 pm I am confirmed as the Liberal Candidate for Fundy Royal !!
So I’m off and running!! As the campaign takes on an aggressive edge, I feel things get easier for us every day. The recent action in kicking students out of a Conservative rally over comments made on a Facebook Page gives me something to boost and bolster my fighting spirits!!! I’m ready for the next chapter in this i
*Enbrel—an injectable “biologic” arthritis drug
**Simponi—an injectable arthritis medication
Part two of Linda’s journey will be published in the next quarterly issue.