Advocacy in rare medical conditions is extremely important. It not only educates people about the particular rare condition, but it also informs people about upcoming treatments.
Of course in a perfect world, advocacy would be redundant but in reality most of us have to fight tooth and nail to gain access to the smallest things. Access to treatment is one of the most important issues, and we all need to have good advocacy skills to communicate to our government as to why we need these treatments, and how it will improve our quality of life. It can be difficult to understand something we have no personal experience with!
So, for people living with SMA right now who don’t have access to treatment, I encourage you to tell your story!
– Tell people about your daily lives
– Give them an insight into your day: Do you work? Raise a family? Are you in a relationship?
The more people understand what you are going through, the more they are likely to support you and your needs.
Self-advocacy is vital to let people know that you want to receive a treatment, that the treatment could slow progression or give you back a degree of strength. If they don’t hear from you they may assume you aren’t wanting to have access to treatments.
The association can help facilitate these communications but we can’t advocate for you alone – we need you!
If you haven’t seen your local Federal member we encourage you to contact us to see how you can make a difference today.
I encourage you to build a relationship with your local Federal Member of Parliament. These people are your voice and represent you at a Federal level.