Wednesday I participated in the Liver Capitol Hill Day Visits sponsored by the American Association for the Study of Liver Diseases (AASLD). I wanted to write this reflection to demystify Hill visits for those that are reluctant to participate or feel that they are not particularly political or up on on the legislative issues. I would certainly put myself in that category, but I am an HBV advocate, and I recognize that there are simple ways I can participate that might make a difference for those living with HBV in my state and in our country.
Liver Capitol Hill Day was a well organized event with specific “talking points” and “asks”, and the logistics were very well coordinated, but in general the individual visits themselves were the same as others where I have participated. If you are in D.C. and wish to visit with your Representative or Senator’s office, I would highly encourage it. They want and need to hear from their constituents, and if you have a personal story to tell, that’s even better.
Call your Representative’s or Senator’s office and ask to make an appointment with the staff member that handles health issues. If you are not sure who your Representative is, merely type in your zip code at www.house.gov. To determine who your Senators are go to www.senate.gov and select your state from the drop down member. Call them and set up an appointment. If you are looking for specific talking points, you could consider contacting an organization like the Hepatitis B Foundation, AASLD or other viral hepatitis organizations that might be able to provide you with some ideas for your visit.
It is very unlikely you will even catch a glimpse of your Representative or Senator, so don’t worry about feeling nervous. The Staffers are accustomed to constituents coming in with their requests. There is nothing formal about the meeting and often you are crammed in a closet-sized room with a desk and a chair, or meeting wherever there is space. This is definitely not a formal presentation and time is tight. Plan on the whole visit taking 20 minutes or less. No one will be offended if your piece isn’t well-polished, or if you pull out a paper with your talking points. I always show a picture of my daughter in the hospital, after one of her liver biopsies. It really personalizes the visit.
This is a great opportunity to tell your personal hepatitis B story. It puts a face on the infection. Often, your staffer will have little or no knowledge of viral hepatitis, but from that moment on, your face and your story will be what he remembers.
I am terrible with numbers, but because this is a time of tight budgets, I always drive home the much lower cost for prevention, screening and treatment versus caring for a patient with advanced liver disease or liver cancer, or a patient in need of a liver transplant. There are the obvious medical costs, and likely the inability for the person to continue working. And of course there are the emotional aspects. In my case, my daughter was fortunate to have treatment and respond at a young age. It was expensive at the time, but nothing compared to costs associated had we been unaware of her HBV status, and her condition had progressed over time to a much more unfavorable outcome.
So consider meeting with your Representative or Senator while you are in D.C., or even at their local, home office. If you’re still not comfortable with the idea of meeting face-to-face with the health staffer, then please consider calling or emailing your Representative’s and your Senator’s office and telling them your personal story living with hepatitis B. It only takes a few minutes, and last week’s blog will tell you exactly what you need to do. We need your help!