The Importance of Advocacy

The Importance of Advocacy – Part One:

When a child is diagnosed with MPS, his or her family is immediately faced with a significant health issue.  As they make their way through the system, at every step, parents and other loved-ones are hopeful that their children are receiving the best care, at the right time, for this rare disorder.  But as many of you know from experience, there is much more that can be done beyond hope.  One of those things is advocacy.

From the outset, it should be noted that this series is not specifically aimed at advocating for better care for patients with MPS.  Rather, we will introduce the basic concepts of advocacy and discuss why, in general terms, it is important for people to make their voices heard when a critical issue of any kind arises in their lives.  To more effectively illustrate these concepts though, the discussion will focus on advocating to government, primarily because decision-makers (politicians and bureaucrats) make public policy choices every day that impact the quality of health care we all receive.

According to the Canadian Oxford Dictionary, advocacy is verbal support or argument for a cause, policy.  More simply, it is telling your story to a decision-maker, through various means, with the express purpose of compelling that person to do (or not to do) something.  It is a process that normally takes time to realize tangible results and there is no one way to go about advocating.  It is personal to your own style and comfort level, and can give you a sense of empowerment by exerting some form of control and initiating some form of action around an issue that matters to you.  Advocacy is built on two fundamental cornerstones:

• the ability of you to tell your personal story
• the establishment and fostering of mutually-beneficial relationships with those who have the ability to affect change

You may initially be concerned if you’ve never before told your story about living with MPS, or if you don’t currently have any relationships with people in government.  We’ll delve further into these advocacy components in the coming months.

The Importance of Advocacy – Part Two:

As we continue with our series on advocacy, it’s worth taking a moment to answer a fundamental question – why is advocacy important?  The easiest answer is because the squeaky wheel gets the grease.  Or rather key decision-makers react to those credible groups or individuals who most effectively bring their issues to the forefront of the public agenda.  But advocacy is also important because the alternative, not doing anything, is really no alternative at all.  Inaction has never led to change or progress.

There are two different kinds of advocacy; personal and issue-based.  Personal advocacy is the typical way one starts to engage.  An issue that affects you or a loved-one, like MPS, compels you to take action.  You’re not looking to change the world; you just want to get help.  It’s out of this personal need though, that some people start to realize that they have an opportunity to bring about larger public policy change by advocating for broadly-based issues.  They decide that by engaging in issue-based advocacy they can not only help themselves, but help others who maybe can’t make their voices heard.

As with most things in life, preparation is essential in advocacy.  You need to have a clear understanding of the issues that you want to raise with the decision-makers you need to contact.  The more focused your issues are, and the fewer of them you have, the more likely you are to be successful.  And while you may need to make some choices about which matters to concentrate on (i.e. access to support services, or access to medications), that is preferable to having too many issues covering a broad cross-section of concerns.

Next month, we’ll begin to walk through the three step process that you can start doing right away to create a personal advocacy plan that you can then implement in support of your issues.

The Importance of Advocacy – Part Three:

In this installment of The Importance of Advocacy, we’ll review the first step of the three step process that you can use to create an advocacy plan or strategy.

Step 1 – Key Messages:

Politicians in particular tend to know a little about a number of things (that’s the nature of their job), so this requires you to take an array of information and break it down to its simplest form.  Start by drafting three key messages that explain the core points of your issue in easy to understand language.  Each of these key messages should consist of 25 words or less and be written in a clear, compelling, concise and consistent manner.  They represent the essence of what you want a decision-maker to remember and respond to around the issue presented to them.  Don’t forget, this person is hearing from you and many others all the time, so your words need to stand out.

To get started, your first key message should briefly explain the issue.  An example would be “As residents of BC, myself and others are unable to get publicly funded access to a treatment that could help our children with MPS.”  Your second key message should address why this issue is important to those people affected.  “Left untreated, MPS can cause progressive damage to the hearts, bones, joints, respiratory systems and, sometimes, central nervous systems.”  Finally, your third key message should conclude with how it might look if your issue were resolved.  “With access to this important new treatment, it has been shown that many MPS patients have had the effects of their disease lessened.”  This last key message will then serve as the bridge to your one ‘ask’, which we will discuss next month.