Seth on advocating through the media.

There are many benefits to being the co-founder and Creak-in-Chief of this organization. I just made up that title, and, as I have already mentioned, the benefits of being the co-founder keep materializing with each passing day. Creak-in-Chief. (Time to change the business cards?)Seth on advocating through the media.

Some of the other things that I enjoy about this situation include the many emails I receive, from people throughout the world, who share their stories and lend a word of support or thanks. They’re so meaningful to me, and I always share them with the team.

The travel is also pretty neat, though very taxing on the body. But getting to “hold hands with America” and visit communities, people with arthritis, and the doctors who treat them, is always rewarding. And leaving the country is always appreciated – partly to experience the world, and partly to have the chance to return back home to New York City and order Chinese food that is delivered before I hang up the phone. Truly one of the greatest benefits of living here.

Also, I enjoy the question from time to time: “Is this like, your day job?” to which I never hesitate to answer “no, actually, during the day I am a forensic plumber. I just do this at night and on weekends.” Only one person has ever believed that. She actually once had a flood and wound up going to court about it, so a forensic plumber would have helped her by testifying on her behalf. Yes, we meet all types through CreakyJoints.

But perhaps the greatest benefit to being a co-founder of an arthritis organization is a benefit that all of our community can enjoy: being an advocate. That’s right, getting a chance to say “I live with arthritis, I’m a part of a community of more than 55,000 other people who do too, and this is what it’s like for me and for us…” so that when people make policy, or decisions that impact us, they are better informed and can make those decisions to hopefully help us along the way. We have to stand up for what we want and what we need. We can’t rely on others to do this for us!

The easiest and most efficient way to be an advocate is through the media. Interviews with reporters are now a standard part of my job – something I have been doing since the age of 15 or so – which is now second nature to me. But for someone who has never done an interview, you ought to consider how easy it is and embrace the opportunity to 1. Share your story 2. Make your point and 3. Help others.

The other day, for example, I spent the better part of an hour on the phone with a very lovely woman who was writing a story for Reuters News Service about the high cost of medications, and how to access them. (Biologics, as you probably already know, can cost on average the price of a Kia. Not a fully loaded Kia, but a fairly base model Kia. Still, with excellent fuel efficiency and standard anti-lock brakes, this is nothing to sneeze at. And the cost of these medicines keep rising – along with their efficacy and safety and convenience – so managing the high co-pays, or out-of-pocket expenses, is a real concern to us. One day they may cost the same as an Acura.)

The interview process is nothing to be scared about! In fact, it can be fun. It helps to prepare ahead of time, by knowing who you’re going to talk to, how long you have to talk, and what it is that the reporter (and you) want to talk about. I had my “talking points” – basically just a few bullets of things that I wanted to make sure that I covered – already prepared, and we went through them one by one. Reporters appreciate when you’re prepared and when you’re methodically walking them through your points.

What never stops amazing me is how little of the actual interview winds up in the actual story. But this is okay, because most of what we discussed was ‘background’ for the reporter, and it was incorporated in other ways besides direct quotes throughout the story.

It also helps to be polite and to be passionate. Giving a reporter background, or some good juicy quotes, is important. But giving her or him the perspective of what it’s really like is also important. They hear it in your voice. And the passion or enthusiasm for what you’re discussing will inevitably make its way into the story.

Lastly, take advantage of the resources that we’ve put together for people who want to be an advocate. Check out this video, for example: http://youtu.be/5ShGhw98WyU

And let us hear from you before or after an interview. I can’t wait to say “you did great!”

As usual, our media man Seth remains way too modest and did not include a link to the Reuters article where he was recently quoted,” If you can’t pay: How to get insurance to cover specialty drugs.”

Here’s the link: http://nbcnews.to/UXevSn

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