Thursday, March 23, 2017

TOTAL March Madness!!

Maybe there's another reason they call this month "March Madness," because this month has been crazy busy!! Those of you who follow me on Facebook, Twitter, or Instagram may already know that I've been doing some really exciting things recently when it comes to advocacy! So before I leave on a two week trip with my family tomorrow, I wanted to give a quick update!

The month started out with a quick trip to Dallas, where I sat on a Patient Steering Advisory Board for Lilly, providing insight on potential new programs for RA patients. It's exciting to see pharmaceutical companies paying more attention to the patient voice, and hopefully being involved in this sort of thing can help improve things for all of us in the future. 

I flew straight from Dallas to Washington D.C. for the Arthritis Foundation Strategy & Impact Committee Meeting the following day. This committee reports to the Arthritis Foundation Board of Directors and we are charged with helping make sure the Arthritis Foundation's recent transition and re-branding results in a true outcome driven organization. We're working to make sure the Arthritis Foundation is having the greatest meaningful impact on individuals living with arthritis and their families, and I'm really honored to represent the voice of patients on this committee. 

I was able to stick around Washington D.C. for two more days to attend part of the Advocacy Summit. I always love the opportunity to connect with others who are living with RA - and it was great to get to see some of my favorite people! The advocacy goals this year were (1) to ask our Congresspeople to join the Congressional Arthritis Caucus, (2) to make sure the Department of Defense maintains funding for arthritis research, (3) and to ask our Congresspeople to safeguard our interests when it comes to drafting new healthcare legislation. 

In particular, we're concerned about what happens to people with pre-existing conditions, the possibility of lifetime caps on coverage, the ability of kids with JA to stay on their parent's insurance plans until they turn 26, and overall affordability of healthcare. Unfortunately, I didn't get to stay for all the meetings on the hill. (Remember my past life when I got a law degree and a masters in environmental policy? I had to get home to finish a book I've been working on!) But I did get get to meet with Colorado Senator Bennet - the day after the ACA replacement legislation was introduced, no less! So that was exciting. 

Last week, I turned my attention to legislation at the state level, as there was a step therapy bill being introduced in Colorado. Step therapy is a practice used by insurance companies that requires patients to try and "fail" lower-cost medications before the medication actually prescribed by their doctor will be approved. SB 17-203 set out to require an override for situations where the step drug is problematic for patients and also to protect patients from having to go through the step therapy process all over again if they have to change insurance plans. 

Since I recently experienced step therapy first hand, I went to testify at the Committee meeting at the state capitol in Denver. If you're interested, you can check out my op-ed for Cybermed News, which is basically the same argument I made in my testimony. Though the bill did pass through the Committee that day (and, in fact, passed through the Colorado Senate today) unfortunately some amendments were made that makes the bill less useful for the patients affected. But as the bill heads over to the House, patient organizations like the Arthritis Foundation and the Chronic Care Collaborative continue to fight for improvements. 

Then (remember, I told you this month is madness!!) I hopped on a plane to Philadelphia for the Health Union Connexcion Conference! I've been working with Health Union since launched in 2013. Though I work primarily on their RA site, many of my legal articles have been published across their other platforms, such as,,,, and This conference was an excellent opportunity to meet many amazing advocates in person, to learn from each other, and to brainstorm how to keep moving forward. 

Though it has been really exciting to be involved in all of this, I must say that I'm really looking forward to spending some time with my family in Hawaii and California for the next two weeks! Heaven knows I could use a vacation!!! And hopefully when I return I'll be rejuvenated enough to hop back in and keep fighting for better outcomes for patients living with chronic illnesses.

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