The Fight for Cures Now

Shira Rose

This blog post originally appeared August 3, 2016 on the Sick Chicks and The Mighty

"Congress is working together on a nonpartisan issue that will have a profound effect on the lives of all Americans. H.R. 6, the 21st Century Cures Act, will bring our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments." - Mission Statement, House Committee of Energy Commerce, 21st Century Cures

Is it just me or do you get chills reading that paragraph? 

Finding advocacy allowed me take control of an uncontrollable situation (my health.) Now, one of the pieces of legislation I'm most passionate about and have fought the hardest for is facing it's day in the Senate. 

What do we want?

Cures!

When do we want them?

Right. Freaking. Now. 

We are in crunch time. 21st Century Cures has passed the House, and is now finally going to the Senate after being delayed quite a few times. August is our final time to push for this important piece of legislation. You might be asking things like, “Well, I’m not sick, so why does this affect me?” or, “I don’t have a rare disease, so why do I care?” I’m here to answer those questions.

Health legislation affects everyone. Yes, you might not be sick. Today. But health can change in the matter of seconds, and (God forbid) it ever happens to you, you’ll be hoping that 21st Century Cures in action will be there to produce potential treatments and cures.

Cures are for everyone, not just rare disease patients.

This affects cancer patients, this even affects Zika virus. But the OPEN Act (something I’m incredibly passionate about that gives bio pharmaceutical companies incentive to make off-label medication on-label for rare diseases that otherwise wouldn’t have treatments) is only for rare disease patients. So then comes the question again, “Why should I care?” Because, 1 in 10 people have a rare disease. By that statistic, everyone knows someone with a rare disease. So, get involved and care for your bother, your mom, your niece — whoever it may be. Without these vital pieces of legislation, they might be in the same situation as me — stuck living on borrowed time and who knows how long that lasts for?

Here are three ways to get involved:

1. Change your profile picture on Facebook and Twitter using this link to share your support for Cures Now.

2. Use the hashtags #CuresNow and #OPENAct on social media to spread the word and to get the attention of your local legislators. Don’t be afraid to tag them in posts about the upcoming legislation!

3. Use these hashtags and share why you need #CuresNow. For example: “I need #CuresNow and #OPENAct because paying for life-saving medications or college shouldn’t even be a choice.”

4. Write to your local legislators! As constituents, you hold great influence. Please take advantage of this and share your story. Follow this link.

5. Submit a Spotlight story! I’ll be publishing stories throughout the month of August and into early September in the Spotlight program specifically relating to the need for Cures Now. Share how you’re fighting for Cures Now, how off-label medication saved your life, and the impact the legislation would have if in place, and/or why you need Cures Now!

We have the power to impact great change. Right now we just have take the moment and turn it into a movement with lasting momentum. 

Help us win the century, and just wait and see we do with it. I promise you won't be disappointed. 

Add comment

Plain text

  • No HTML tags allowed.
  • Adds node titles to internal links found in content (as HTML "title" attribute).
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
We have health challenges in this country that science will provide answers for if given the chance and we haven't given science that opportunity
Mary Woolley, President and CEO, Research!America