Patient Advocacy & Politics: How to Take Charge of Your Healthcare and Create Change in Your Community
I felt the urge to write this post today because it’s fresh and I’m still on such a high from the experience. Weeks ago, I received an E-mail invite to attend Congresswoman Alma S. Adams’ Third Annual State of the District Address and Swearing. The email stated she wanted to, “recap her accomplishments of 2018, share her vision for the upcoming 116th Congress, and hear our thoughts on issues impacting the district.” I was completely caught off guard. Before I go into my reservations, I will share a little backstory.
A while ago, I briefly got involved with politics as it pertains to healthcare. I reached out to the Congresswoman, sharing my concerns about “Trumpcare.” – I knew nothing about politics. I was so scared to get involved and I felt like I couldn’t possibly make a difference. I always had an excuse, but my main concern was not knowing enough. How could I possibly inspire change in a government I didn’t even understand?
Politics Makes Me Anxious
A while ago I shared a post called, We Are The Change We Seek. I still am a firm believer in this. I believe it is our responsibility to bridge the gaps and at times when there is no way, we must create one. While I still don’t understand everything about politics and I am still very intimidated by it all, I realize I can’t hide behind that fear. Patients need a voice.
Who better to represent patients, than patients? Who better to give insight on healthcare than the people impacted by it the most? It’s important for patients to have a seat at the table, but I know first hand how scary and intimidating it all can be.
Today I stood in front of an entire room of extremely educated professionals including the Congresswoman, her staff, other elected officials, the president of Johnson C. Smith University, doctors, educators, business owners and more. I was scared out of my mind. I wanted nothing more than to storm out and never look back, but I knew I couldn’t. Not only would I be letting myself down, but I’d be letting my friends and family down. – Not to mention the countless patients who could have benefited from the change that could possibly come from me taking a stand.
Time was limited. Only about 5-7 constituents were able to address the issues that mattered to them the most. I am proud to say I was amongst the few. I stood up and allowed my voice to be heard. I requested the Congresswoman look over and consider co-sponsoring Bill HR2077. I explained the bill addressed Step Therapy, a protocol in which insurance companies require patients to first try and fail and insurer-preferred medication before they provide coverage for the medication the physician originally prescribed. I explained this would give patients more rights in the matter and would even allow some to be exempt from the rule. I also requested she consider joining the Congressional Crohn’s and Colitis Caucus. I explained that I am currently living without 3 organs because of the gaps in healthcare and that we would love to have her as a voice for our community.
Did I do this perfectly? No. I was nervous. My voice and hands were shaky. I was worried I would drop my microphone, but I did it. – And to my surprise, many people were supportive. Cheering me on during my speech and afterwards during the reception. I met so many people who explained they how they’ve been impacted by IBD or simply appreciated me speaking up about patient rights. I almost found it hard to believe how many people could relate to my story.
Your voice. Your story. It matters. Never think you’re not enough. You are. Use your voice. It will change lives.
How to Take Charge of Your Healthcare and Create Change in Your Community
- Address Your Fears: I’m so grateful for Amber of AboutIBD, Brooke of Crazy Creole Mommy and Jaime of Pretty Rotten Guts. They have been such an amazing help. I’ve been texting and calling them non-stop for advice and information and they’ve stood with me every step of the way. Talk about your fears. Talk about your concerns with someone you trust, then face them head on.
- They Work For You: As Brooke always tells me, it’s a part of these people’s job to listen to their constituents. They work for the people. Don’t be afraid to voice your opinion on what matters to you.
- Personalize Your Approach: As Congresswoman Adams mentioned, whenever you’re reaching out to someone in office, always handwrite or personalize what you’re sending. Generic emails and forms won’t necessarily grab attention like a handwritten letter or an email crafted by you personally.
- If You Don’t Speak Up, They Won’t Know: Congresswoman Adams also mentioned this and I thought it was pretty interesting. She spoke about how she runs across certain bills, but hasn’t received any feedback on them from her constituents. – How can she properly represent her people when they are silent?
- Suck It Up, Do It: Throw out the excuses and just do it. It’s scary and intimidating. It takes time and research. It’s hard. I had to completely step out of my comfort zone! – But there are so many resources and people out there that can help. Don’t dwell on the negatives, focus on the change you would like to create and go from there.
Honestly, I’m Just As Lost As You
If the thought of getting involved with bills and legislation, politics, congress and all of that other mumbo-jumbo makes your stomach curl, congratulations! You’re at the exact same level as me! I’m extremely lost when it comes to things like this, but I know the best I can do is try.
I’m still really scared to mess up the jargon. I’m terrified of sounding dumb. I don’t love having all eyes on me, but my passion for patient advocacy and patient rights burns hotter everyday. It’s no longer enough to draw ribbons and take pictures of the same scars. We must do more for our community.