Why I’m very suddenly excited about health policy legislation

This is Shira Strongin. She runs the blog and community The Sick Chicks which is pretty great and you should head over there sometime soon if you aren’t already familiar.

Shira received the Amelia Moore Sparkle Award at #DysConf recognizing her advocacy for fellow dysautonomia patients

Shira received the Amelia Moore Sparkle Award at #DysConf recognizing her advocacy for fellow dysautonomia patients

We met this year at the Dysautonomia International Conference and became prettttty good friends and the fact that we weren’t best friends until now is a crime.

Shira and I got very close very quickly. And Katherine approved.

Shira and I got very close very quickly. Katherine approved.

Along with our #DysConf buddies, we ate a lot of kettle corn, sang songs from Hamilton, had a lot of fun with emojis and social media’d it up. (#DysConf is the best parts of summer camp combined with a medical conference. It’s everything you never knew you needed.)

Anyways, when this excellent human isn’t busy battling chronic illness head on, she’s advocating on behalf of fellow Sick Chicks, rare disease patients and chronic illness spoonies while being a catalyst for making meaningful legislation happen. (NO BIG DEAL, except it is.)

Shira’s current projects are helping push the 21st Century Cures Act and OPEN Act through Congress. Because yes! Citizens are a part of the legislative process. (See: Schoolhouse Rock for some basics.)

So rather than macerate the descriptions of Cures and OPEN Act, I went to the source to get the best information possible. Also, because only Shira can answer a few of these questions.

 

Q&A with Shira

How are you?!

Missing you! Health wise though: I’ve had quite a few bumps in the road recently, but that’s part of the life with rare disease.

(editor’s note – I miss her, too.)

 

How long have you been working on 21st Century Cures and OPEN Act?

I’ve been working on both Cures and OPEN Act in various ways for a little over a year now, so pretty much since when they were introduced, but it’s crunch time right now for Cures as the vote is coming up in September, which Senate has been pushing off even after it overwhelmingly passed in the House.

 

Explain Cures and OPEN Act in emojis OR 10 words or less

Oh heck yeah, I’m doing this in emojis

shira-curesactinemojis

21st Century Cures Act

shira-openactinemojis

OPEN Act

 

What is the most important thing you want everyone to understand about these pieces of legislation?

Okay, so I’m going to have to say two things:

  1. Cures are for everyone
  2. Yes, 21st Century Cures is extremely costly, but progress always is. What better thing to invest in than our future? By investing in healthcare we are literally doing that.

 

What can rare patients, Sick Chicks and chronically ill patients look forward to if these pieces of legislation pass?

Basically an overhaul of the currently malfunctioning medical system, and turning the focus around on; discovery, development, and delivery through:

  • More research
  • Increased funding for the National Institute of Health
  • More clinical trials
  • Better and more affordable access to medications (including off label medication)
  • Precision medicine being practiced
  • For rare disease patients, with OPEN Act, current off label treatments have the potential to become approved therapies
  • Etc.

 

Why do these things matter outside of the rare disease and chronic communities?

  • 1/10 people have a rare disease. Even if you’re not affected by a rare disease, everyone knows someone, so care for you sibling, your parent, your weird-distant cousin.
  • If 1/10 people have a rare disease, imagine how many people have more common chronic conditions? Same logic applies.
  • Just because you might not be sick now, [it] does not mean your future is guaranteed. And because of that “in case” we all need to be aware of major health legislation like Cures and OPEN Act that will be life changing and saving.
  • Health is a universal, bipartisan issue. We need to step up and show that we give a damn about our future.

 

Why is amplifying other youth voices in your advocacy important to you?

Youth are the future. Every piece of legislation in talks now affects us so greatly because these are shaping our future. As someone whose future is always called in question, confidence and having say in your future is powerful.

Because of my health I’ve had to accept how much of my life is out of my control, but being involved with legislative advocacy allows me to take back some level of control. I want others to realize what a unique and important voice they have along with just how much of an impact they can make.

With Cures and OPEN Act being health policy, I think it’s even more important youth voices are heard because for many of us without this legislation we will most likely not have a future. We are running out of time, and we need #CuresNow.

 

What is the best way to get involved?

In Sick Chicks I wrote a post about “The Fight For Cures Now” with some action items, and I’ll list some here as well!

 

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A million thank yous to Shira for (1) being generally great, (2) acting to make real, positive change happen for people who need it, (3) DOING ALL OF THIS WHILE SHE STARTS HER SENIOR YEAR OF HIGH SCHOOL. This girl can get it.

And I encourage you to support these acts. I’m not claiming to fully grasp or understand how any of this will work out should they become law. But I do know that there are people much smarter than me who believe in this legislation, understand it, and know how to put it into action so that people like me, like Shira, like our friends and our loved ones and people we have yet to meet, can live better, healthier and longer lives.

It gets better with time
I’m grateful for fuzzy feelings on Thanksgiving

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