Effecting Change

 

The Story of a Successful Rally

I have lived with multiple sclerosis since 1990. In 1998, I organized and led a rally on the steps of the Legislative Assembly in Alberta. I wanted our provincial government to move forward on its decision whether or not to include four new drug therapies for MS in the provincial formulary. It had been postponing its decision, and I wanted to let the government know that Albertans with multiple sclerosis would wait no longer.

The cost of these drugs was upwards of $1,500 per month per person — not accessible to most people not covered under private drug plans through work or a spouse. I had had numerous talks with my MS clinic, the MS Society and people who had written to the government. It was very clear that, to Alberta’s government, the drug-coverage needs of people with MS were not an immediate concern.

I decided that the only way the government was going to hear the voices of people with MS was to speak loudly and clearly, from a position they couldn’t ignore: right in the Minister of Health’s office. At this point, I envisioned going to Edmonton, perhaps with a few supporters, and having a face-to-face meeting with the Health minister.

I spoke with as many people as I could who were close to the MS drug-coverage issue (the clinic nurses and doctors, and staff at the MS Society) to see if they felt that a meeting with then-Minister Halvar Jonson would prove useful in our fight to get the drugs onto the formulary. I realized that Mr. Jonson was probably not willing to talk about the MS drugs. Period!

I decided that if the Minister of Health would not grant us a meeting, we would bring the issue to his front door. However, I did need to prove that he would not meet with us. So began my letter-writing blitz to Minister Jonson. I wrote Mr. Jonson to express my concern with the government’s refusal to include the MS drugs onto the provincial formulary. I ended all the letters by asking for a meeting. I received no reply.

While in Montreal at the inaugural meeting of the Canadian MS Network, I had the opportunity to speak with the president of Teva Marion, which manufactures one of the MS drugs, Copaxone. I expressed my concerns regarding Alberta’s position on the coverage and outlined my plan to take my concerns right to the legislature in Edmonton. I was offered the backing of Teva Marion in the form of transportation costs to Edmonton, if I was able to get a group of supporters around me. The vision of the rally began!

Now I needed to contact people and find out if they were willing to come to Edmonton with me. My first call was to the MS Society office in Calgary. The society could not to support me, due to its ethics code, which disallows them from becoming involved with any form of political rally. Because they refused even to spread the word of the rally, its success was completely in my hands.

I decided to use people who had multiple sclerosis to help me get the word out about the rally. I asked myself where it was that people with MS gathered. The answer was the MS clinics, both in Calgary and Edmonton. It was a simple matter to get the clinics to post notices about the upcoming rally.

The posters listed my name as a contact for more information. This was probably my first mistake. It became very difficult to deal with the actual plans for the rally and at the same time field the many phone calls asking for information about it. If I were to do it over again, I would designate a group of committed people around me as the contacts. This would leave me with more time to actually plan the rally.

I am a member of an independent MS support group. The people in our support group were all very eager to participate and to help spread the word about the rally. The news started spreading through the MS community.

There are several things to address when you plan an event of this kind:

– You must decide on the form of transportation. In this case, I chose a bus. The phone calls necessary to inquire about the buses were time consuming. I knew we required buses with washrooms on board, because the ride from Calgary to Edmonton is four hours long, and we WERE transporting people with multiple sclerosis!

– The length of the bus ride also meant that I had to think about refreshments of some kind. People could pack lunches, but the trip would take us through two main meals of the day, lunch and dinner. I decided to find sponsors to donate refreshments. Usually, community retailers are more than willing to donate to good causes in their area. Phone calls to the retailers usually require follow-up faxes. Also, most retailers require several weeks’ notice about donations, so you have to book your sponsors early.

– Media attention is a must if a rally of this nature is to prove successful. I had established contact with a TV reporter from CBC during previous interviews, so I used this contact to my advantage. I offered CBC the only media spot on the bus trip to Edmonton. I reasoned that any reporter would relish the chance to be the only one able to cover an event from start to finish, and the reasoning proved sound; CBC rode on the bus from Calgary to Edmonton.

– Attention from political opposition is also very advantageous. Once it became clear that the Ministry of Health was not going to respond to me, I used that silence to enlist the help of the opposition. It just so happens that, in Alberta, the health critic’s riding is in Calgary. I decided to ask him if he would be interested in speaking at the rally. (I had realized that the more speakers we had at the rally, the more media attention we could generate.) One thing led to another, and before I knew it we had both opposition parties on our side.

– During the bus ride to Edmonton and the actual rally, I sent people into the crowd to gather names and addresses of those in attendance. This list can be used to inform fellow Albertans with multiple sclerosis about what is going on within the province — not only regarding the MS drug issue, but for future issues.

A lot of what happened to make the rally a success occurred as the event unfolded. Many things played to my advantage: the health critic being in Calgary; an established media contact; communication lines with the MS clinics. The most critical factor in this event, however, was my total commitment to the cause. I was determined that nothing was going to stop me from taking my cause to the seat of the government!

The rally was an incredible beginning, but the fight raged on in Alberta for another three months. I had to remind people that we must keep the heat on the government. I did this by encouraging all of those people who had attended the rally to write letters to their MLAs and to the Minister of Health.

The eight-month struggle had a happy ending, but it came from my determination to be heard. When people feel that their disability will hold them back, they should realize that it may just give them the strength they need to move forward. I never once thought that we wouldn’t win our struggle.

I remember stepping down from the stairs of the Legislative Assembly after the speeches were over and the TV cameras and microphones had been packed away. I was walking as part of a group, when someone tapped me on the shoulder and told me that someone was trying to get my attention. I looked around to see a man sitting in a wheelchair. He was smiling brightly. He extended his hand to me as I approached, and covered my hand with both of his. “God bless you for all that you have done for us here today.”

This man’s effort to catch my attention made the months-long struggle worth all of the energy I had expended. Moving beyond the supposed confines of a disability can be the most rewarding experience of a lifetime.

If I ever have the opportunity to plan something of this magnitude again, I will make sure that I have scouted out numbers of committed people who are willing to pass on their enthusiasm for a single cause. Any event like a rally needs a focus, and you must stick to that focus throughout the event. We never wavered from our main message: “We want the MS drugs put onto the provincial formulary. We want the MS drugs now!”

(On September 30, 1998, the Minister of Health announced that four new multiple sclerosis drug therapies would be listed in the Alberta drug formulary.)

(Linda Villeneuve is a freelance writer living in Turner Valley, Alberta.)

MAKING A DIFFERENCE LOCALLY

I believe that the successful efforts of the Port Alberni Multiple Sclerosis Support Group are an inspiring example of what a small group is capable of accomplishing.

The population of Port Alberni, B.C., is just under 20,000. Yet, with an average of 15 members in our group, we have made an impact on our lives and in the community, mostly as a result of optimistic outlooks and monies raised from our weekly bingo slot, donations and other fundraising events.

Although all members are markedly affected by multiple sclerosis in terms of physical abilities and energy levels, one member approached the group 12 years ago suggesting that we submit an application for a bingo license. The benefits of such a venture soon exceeded everyone’s expectations.

The group’s prime focus has been to encourage better lifestyles, assisting all those with MS in the area to function as independently as possible, both within their homes and while attending community activities. To this end, we have jointly sponsored workshops with other local support groups on related issues, assisted with disability-related travel expenses and drug research participation, and provided social and recreational programs.

For the past four years, we have financed a weekly Adapted Fitness Program specifically for people with MS at a local fitness centre, which has proved beneficial in maintaining fitness and flexibility. Others prefer swim therapy, also financed from the coffers. Since 1989, practically all
recommended medical equipment required by an average of 30 consumers with multiple sclerosis in the Port Alberni area has been provided by our group. To date, roughly $150,000 has been spent on scooters, customized wheelchairs, ramps, lifts and other equipment which is loaned to the consumers, reverting back to the group when no longer required.

We have loaned two power scooters to the local mall for the use of all shoppers with physical disabilities, and donated portable stairs to the local swimming pool. Along with financial contributions from other local support groups, automatic doors, as well as a canopy providing a covered area for loading and unloading visitors using wheelchairs, have been installed at the local community centre.

The greatest gains by far in our successful endeavours are the feelings of pride, the return of self-esteem, and the ability to make a difference in our own lives and in the lives of others. We have grown from a struggling support group to a positive, sharing influence.

Mytown, Yourtown, Anytown — one small group truly can make a difference, regardless of disability.

— CAROL E. NUTTALL

 

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