Teen Bloggers Continue Rallying for #CuresNow
Emily Muller and Shira Strongin
How did you spend your summer vacation as a teenager? Meet Emily Muller of Chicago, Illinois, and Shira Strongin of Newport Beach, California, rare disease patients who are spending their summer on social media, discussing why the need for #CuresNow is so urgent.
“My story with #CURESNow and OPEN ACT started as many do – with a rare, serious disease, and the timid words ‘there is no FDA approved treatment,’” Emily wrote in a guest blog for The Mighty. At the young age of 13 she did some research on what treatments might help her disease. She was encouraged when she found an off-label infusion therapy. That research helped Emily and she’s working hard on the #Path2Cures to ensure off-label treatments can be more readily available to others in need of treatment.
Paired with Shira Strongin of Sick Chicks, these two teens are taking over social media in the fight to deliver #CuresNow.
Explaining that health care policy affects everyone, Shira wrote on her blog, “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 to produce treatments and cures. Cures are for everyone NOT just rare disease patients.”
“We have the power to impact great change. Right now we just have [to] take the moment and turn it into a movement with lasting momentum,” Shira added.
“We are not the vulnerable, sick youth the media so often portrays,” wrote Emily. “We are change-makers. We are movers and shakers. We are the next generation of leaders. In a world that so frequently silences based on age or circumstance, we must be bold, brave and loud.”
We salute Emily and Shira’s inspiring drive and ambition, and know they are tremendous forces to be reckoned with – both on and off – the #Path2Cures.
Why I’m Fighting for Access to Off-Label Medicine
By Emily Muller
My story with #CURESNow and OPEN ACT started as many do – with a rare, serious disease, and the timid words “there is no FDA approved treatment.”
I was uncompromising and filled with the indefatigable hope that only a wide-eyed 13-year-old could have. Unwilling to accept the fact that my future was dense with uncertainty, I did my research and found an off-label infusion therapy that maybe, just maybe, could help.
It did, and here I stand — an activist who has lived an incredible 17 years and has become a little too obsessed with making history.
This is exactly what the 21st Century Cures initiative will achieve. It will give this generation of youth the chance to see treatment developed in their lifetime. By incorporating patient perspective into drug development, identifying disease earlier, modernizing clinical trials, incentivizing rare disease drugs, accelerating the cycle of discovering, developing and delivering new cures and treatments, and providing an extra 1.75 billion dollars for the NIH and 110 million dollars for the FDA for five whole years, this may just be one of the most transformative bills to pass Congress in decades.
Youth are often grossly underestimated. It is beyond important to highlight the fact that ill young people are still intellectuals capable of playing a vital role in the passing of legislation that will directly impact their lives and the lives of many others.
It is time to turn these silent hurts into screams of survival and pleas for change.
We are not the vulnerable, sick youth the media so often portrays. We are change-makers. We are movers and shakers. We are the next generation of leaders. In a world that so frequently silences based on age or circumstance, we must be bold, brave and loud.
The conversation surrounding Cures has been gaining momentum and it is crucial we don’t allow it to peek here. With both Speaker Ryan and Senate HELP Chairman Alexander naming the 21st Century Cures initiative a top priority, we know that Washington is listening. Patient voices are important in securing a vote and gaining bipartisan support now more than ever. Cures truly impacts every American, regardless of age, gender, religion class, race, or creed.
Illness affects everyone, and therefore 21st Century Cures does too.
Read the full column online HERE.