What You Can Do

Approximately 4.5 million Canadians live with arthritis, and their collective voices have the potential to be very powerful. Arthritis Consumer Experts urges people with arthritis, their family members and friends to speak out across the country about their needs and the daily challenges they face. To help those wishing to speak out, ACE provides a "toolkit" for action. Here are some of the things you can do and use:

Expressing your views to government and health care decision-makers

It may seem like a small gesture, but writing a letter to an elected official or key decision-maker is one of the most effective ways of communicating your views as a person who lives with arthritis, or as someone who cares about the disease. Elected officials need to be continually reminded that their constituents are paying attention to the critical decisions they make.

While a quick, informal e-mail missive may seem easiest, a single handwritten or typed letter will have much more impact.

Here are a few guidelines to keep in mind when preparing your letter:

Composing your letter
  1. Prepare your letter in a way that reflects the importance of the issue and your message.
  2. In the first paragraph, introduce yourself and state the reason you are writing, and why it is personally relevant to you and your community. Keep the first paragraph to three sentences, at most.
  3. In the next paragraph, provide specific details about the issue, and why it's important to you and your community. Remember that facts and numbers help to support your argument.
  4. Offer constructive solutions. Once you've outlined the problem, discuss what action you would like to see taken to resolve the issue. Support your proposed solutions with facts and examples, if possible.
  5. Try to keep the letter to one page-one and a half, at most-but still allow yourself to make the points that you think are most important to you and your community.
  6. If you have more than one issue to raise, send more than one letter-keep each letter focused to one issue if at all possible.
  7. Close the letter by restating the action you would like to see taken and when, and thank them.

General tips on letter writing to elected officials
  1. Be respectful, but make your points clearly and very firmly.
  2. Prepare your correspondence in a way that does not threaten the security of your elected representative, staff or anyone related to him or her.
  3. Do not rant or be abusive.
  4. For issues related to the delivery of, or access to, provincial health care, write to your provincial Minister of Health and send copies of the correspondence to your local Member of the Legislative Assembly ("MLA"). You can find your Minister of Health's mailing address on your provincial government's web site.
  5. If you are writing about a federal health care issue, write to the federal Minister of Health and send a copy of your letter to your local federal Member of Parliament ("MP"). You can find your local MP's mailing address on the federal government's web site.
  6. Be sure to spell the person's name correctly, and include their official title.
  7. Always remember to sign your letter, and below your signature, provide your full occupational title/position, residential address (more important than a post office box number since politicians need to know if you live in their riding), and postal code. Make sure you put your return mailing address on the envelope, as well.
  8. NO STAMP is required for correspondence to a Member of Parliament, the Prime Minister or a Senator (Canadian federally elected/appointed officials).
  9. A stamp IS REQUIRED for correspondence with a provincial or municipal elected official (MLA, Premier, Councilor/Alderman, or Mayor). A stamp is also required for correspondence with government staff.

Writing a letter to a newspaper

  1. If you are writing a "letter to the editor" of a newspaper in response to an announcement or news item, do it quickly-the same day or next day is best. Letters that go in three or more days later typically do not get published because the interest in the news item is less.
  2. Letters to the editor should not exceed 250 words; as such, your letter needs to be "to the point".
  3. Remember that facts and numbers help to support your argument.
  4. Send a copy of a letter you write to your elected official to your local, provincial, or national newspaper as well.
Here is a letter that was published in the National Post to use as an example. It was written in response to a story about a woman living in New Brunswick whose expensive arthritis medication is not being covered by her province's drug benefits plan.

Wilhelm's Not Alone
Re: "My One Hope Was This Drug" November 28.
Sadly, Linda Wilhelm's story is one of over 40,000 stories of Canadians living with severe rheumatoid arthritis fighting to get the medications and health-care services they desperately need to function, let alone live any semblance of quality of life.

Tragically, in Alberta, Prince Edward Island and Ms. Wilhelm's home province, New Brunswick, the fight for access painfully drags on. Neither Enbrel nor Remicade have been placed on the provincial drug benefit plans. The ministers of health in these provinces should hang their heads in shame for allowing this to happen. Let us hope the Romanow Report brings transparency, accountability and public participation as key ingredients of the "cure" it will prescribe for Canada's chronically ill healthcare system. Otherwise, Canadians like Ms. Wilhelm will have witnessed millions of dollars being thrown out the government window rather than paying for drug coverage for catastrophic and chronic illnesses such as rheumatoid arthritis. Cheryl Koehn, president, Arthritis Consumer Experts, member organization, Best Medicines Coalition, Vancouver.

Speaking to government and health care decision-makers

From time to time, people living with arthritis are given the opportunity to address key members of government and other health care decision-makers. It is critically important that members of the arthritis community make the most of these opportunities; as people living with the disease, your voices are vitally important in the fight to get the best possible treatment and care into place for Canadians living with chronic disease.

Here are a few tips for speaking effectively to government:
  1. Dress respectfully; a speaker who is sloppily attired is given less attention and respect than one who looks "pulled together" or professional.
  2. Speak clearly and with confidence; remember that you possess a vitally important perspective, and you have every right to be heard.
  3. Remain calm. Health is often a very difficult, emotional issue to discuss, but avoid shouting and ranting. Know that your facts and messages, supported by your experience with disease, give your words more weight than yelling ever could.
  4. Know what you are going to say-do not ramble. Have your key points outlined on a piece of paper if you find this helpful, but do not read or memorize a speech.
  5. Introduce yourself, and give a brief outline of your experience with disease-no more than 1 or 2 minutes in length. The purpose of speaking to government is not to tell your story or gain sympathy; rather you are outlining a problem and providing suggestions about concrete solutions. Your disease gets you through the door, but once you are through, you are speaking on behalf of thousands and millions of people like you.
  6. Outline the points you are going to make, and then clearly elaborate on each one.
  7. Support your arguments with accurate facts and numbers.
  8. Be as brief as you can, while still providing all of the necessary information.
  9. When you finish speaking, thank your listeners for their attention, invite them to ask you questions, and tell them that you look forward to seeing concrete progress on the issues you have discussed.