Being a patient advocate is no simple task. On the one hand, you’re having to battle a sometimes life-threatening illness both physically and mentally, or you’re having to care for a loved one who is, and, on the other hand, you’re having to convey to legislators the significance of that battle and how the decisions they make will impact it. And to further complicate things, gaining access to Members of Congress, both House and Senate, can be difficult. Here at Dialysis Patient Citizens (DPC), we know the importance of ensuring our members have a voice in this ever-changing healthcare world and we want to help others have one as well. Below are some tips on becoming a successful patient advocate:
- Build a relationship with the district office – Every House and Senate Member has at least one office in the state/district and it is staffed by people who mainly focus on constituent services. Reach out to them and request a meeting. Oftentimes, having a relationship with staff is just as useful as having a relationship with the Member. And once you’ve established that relationship, maintain it with periodic emails checking in or sending updates.
- Request a meeting when the Member is in town – If you go to a Congressional Members’ website, most have either a way to contact them or a form to fill out to request a meeting. If you’re not sure when you will make it to D.C. next, ask to meet somewhere local. This may take some time to set up as Members’ time back in the state/district is somewhat limited, but submit a request. Whether in D.C. or back in the state/district, it is getting that time with the Member that is most important.
- Participate in a Washington, D.C. fly-in – Most patient groups will have an annual fly-in to Washington, D.C. which provides a great opportunity to meet with Congressional offices as well as network with other patient advocates. Your advocacy group will likely try to set up a meeting with your Senators and Representative – or if they are unavailable, their legislative staff. Things to keep in mind:
- If you have a meeting with the Member, use the time wisely. Members’ schedules are constantly in flux so you may have a 30-minute meeting or a 5-minute meeting – be prepared for either. Make sure you prioritize what you want to say so you take full advantage of your time with them.
- He or she will also likely have their staff member there who handles healthcare. Make sure you get their contact information so you have a way to contact them directly with more time sensitive issues. If for some reason, the healthcare staffer is not there, get their information and try to set up a separate time to briefly meet with them. Legislative staff give Members vote recommendations, co-sponsor and co-sign recommendations, and general advice on pending legislative issues – make sure they are familiar with your issue.
Advocacy work is not easy. It takes time, effort and dedication – but your hard work will be noticed and it will pay off, even if at times you don’t see immediate results. Always keep your head up and remember, if you don’t advocate on your behalf, no one else may.
