Life with MS

Advocacy: What is it?

By Jeri Francoeur

When you hear the word advocacy, what comes to mind? Some people may picture a person marching on Capitol Hill. Others might picture a social worker assisting a client. But do you see yourself as an advocate?
           
With any chronic medical condition, a person often becomes their own advocate, standing up for their own rights and needs, or in the interests of others like them. There are several ways of doing this. Let’s explore the different areas of advocacy. 
           
Advocacy can be described as having five different areas:  Political, Fundraising, Support, Watchdog, and Research. 
           
Political Advocacy is advocating at the state (your state legislators) and/or national (your Congress members) level. In some local communities, a person may also have access to local government agencies (such as city council or the mayor’s office) that can help. 
           
Political advocacy is your strongest form of advocacy. All state legislators and Congress members have offices in their district. Get to know their staff – they do the work and some-
times working with them is better than working with the actual legislators. Congress members have their own health aid that exclusively specializes in health-related issues. Make sure you have a voter’s ID card, as the offices will check to see if you are a registered voter. They can also tell what party an individual is affiliated with and it is always a plus if they have the same party affiliation. 
           
Fundraising Advocacy involves seeking financial assistance for your needs or supporting organizations that provide those services for others. There are many nonprofit organizations that are out there that can help with financial assistance for necessities and treatment.  There is usually a yearly limit as to how much they can provide, and advocacy may involve seeking partial funding from several different sources.  All the pharmaceutical companies also have financial assistance and can help get the medications a patient needs for a discount or even free.
           
Support Advocacy is taking advantage of or promoting such resources as support groups, or support programs at the local, state and national level.  They can help in a variety of ways such as patient navigation, patient resources, counseling, coordinating appointments and connecting a patient with other patients with similar conditions. Nothing is more helpful than talking to someone who has already been through it when an individual is first starting their journey. 
           
Watchdog Advocacy involves organizations that regulate different things. For example the Multiple Sclerosis Coalition looks at legislation, how policies are made, advocating for healthcare for their constituents. The most known watchdog organization is the Food and Drug Administration (FDA). They approve medications, medical devices, clinical trials, etc. to make sure everything that goes through their approval process is safe. You take part in watchdog advocacy when you do things like report ADA violations, or respond to calls to action from organizations like the Coalition.
           
Research Advocacy is making sure there is funding available for continued research for a specific condition. Money is always tight and it is extremely important to advocate for continuous funding. Breakthroughs are being made constantly. 
           
All these types of advocacy involve making sure your voice is heard. Remember, the squeaky wheel gets fixed first!