Page 12 - HFA Dateline 2016 Q4 Winter

Understanding Advocacy: Reflections and Tips

from HFA’s 2016 Advocacy Intensives

By Deema Tarazi, JD

uring September and October, HFA brought 21 commu-
Dnity members from around the country to Washington,
DC to participate in two advocacy intensives: one for Dads in
Action and Blood Brothers, and the other for Moms in Action
and Blood Sisters. Participants spent three days learning how
to advocate for themselves and the bleeding disorders commu- Advocacy is important and anyone can do it, regardless
nity. They gained new perspectives on a variety of topics relat- of training, experience, and proximity to DC or your state
ing to advocacy, including best practices when meeting with capital. Grab your walking shoes and get ready to take
an elected official, writing an “elevator speech,” using social action with the following tips.
media to advocate, and how to advocate at home.
BE PREPARED: Before scheduling a meeting with your
In conjunction with their training, participants spent time on representative, take time to research the topic you plan to
Capitol Hill, talking to staff members from different Congres- discuss and create talking points or an “elevator speech.” An
sional offices. Blood Brotherhood and Dads in Action partici- elevator speech is a concise explanation of the situation for
pants met with six different offices to practice asking for Con- which you’re an advocate and what you’re looking for from
gressional support for Bill HR 3742, also known as the Access the listener: a speech short enough to last the length of an
to Marketplace Insurance Act. Blood Sisterhood and Moms in elevator ride. By being prepared, the meeting will likely go
Action participants sat down with members of Senator Cory most smoothly and you will be able to engage in a productive
Booker’s health staff for an educational meeting about work- conversation with your representative about the issues.
ing on Capitol Hill. The women also shared personal stories
of resilience and the challenges they face because of bleeding STAY RELAXED, YOU ARE THE EXPERT:
disorders. Both groups had fruitful conversations with legisla- It can be nerve-wracking talking with an elected representative
tive staff and gained valuable experience. or their staff. But remember, you are the expert on bleeding
disorders and people will be interested to learn from your
experience and knowledge. Elected officials are people too,
Here’s what a few of our participants took away from the and they are going to look to you for guidance about all things
experience:
related to hemophilia and bleeding disorders.
“Throughout history we have made major progress in
the bleeding disorder community. We must continue to MAKE POLICY PERSONAL: Sharing with your repre-
advocate, however. During this intensive advocacy train- sentative how specific legislation impacts you and your family
ing, I have learned that it does not matter whether you are will help personalize whatever bill might be up for consider-
a severe bleeder or a mild bleeder; we are all a part of the ation. Representatives know the language of the bill but your
bleeding disorder community, and we must continue to individual story brings it to life.
advocate for a cure.” ~ Chelsea FOLLOW UP: Stay in contact with your representative
“The advocacy intensive was a great experience. I learned after your visit by sending a thank you note or email. Follow-
how to advocate for my cause using the proper chain of com- up notes are an effective tool to remind the representative
mand and then found out what goes on behind the scenes about the issues you discussed. To ensure you have the correct
afterwards. When we advocate, lots of the time we go away contact information, ask for a business card after the meeting.
feeling uncertain. Do they care? Will I get the help I need? Or, prepare a hand-written note ahead of time and leave it with
How long will it take? And, will it make a difference? This information on bleeding disorders as you depart.
training answered all of my questions. What I took from the STAY INFORMED: Continue to track the issue, both in
training is how to pass on your knowledge to others so they your state and at the federal level, and stay in contact with
understand your position. Most important, I learned to keep your representative. With each new Congressional session, be
the fight going because help is on the way.” ~ Andrea aware that new issues will arise that could impact the bleeding

disorders community. n n
12 Dateline Federation | Winter 2016