An Open Letter to Disease Advocates

Rep. Fred Upton (R-MI-06)

This article was originally published on Medium

Thanks to a remarkable outpouring and mobilization of rare disease advocates, August 2016 will go down in the books as the “Summer of Cures.” While our journey on the “#Path2Cures” began three years ago, many, many advocates have been fighting for cures for much longer.

Together, we’ve made incredible strides in our effort to deliver #CuresNow. Every story, every single voice matters, and we are grateful for your support and willingness to share your personal experiences with disease.

It’s been a tremendous effort by the rare disease community and I am proud to report that we are closing in on the finish line. But we can’t get there without everyone’s continued efforts — now is the time to double down on all our efforts. As we have said before, all eyes are on September, and together, we will get the job done.

21st Century Cures is a win for everyone.

It will accelerate the discovery, development, and delivery of life-saving therapies in a safe and effective way. We want to support biomedical research and harness medical innovation to turn discoveries in a lab into the treatments and cures that change patients’ lives. Our goal is to bring our health care innovation infrastructure into the 21st century, so that we can deliver real hope for patients and loved ones by providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments.

Our approach has always been about helping the patients of today and tomorrow. From asking for your feedback on legislation, to opening up our doors for roundtable discussions, this critical legislation has been a collaborative effort in every way.

Earlier this year, members of the Senate Health, Education, Labor, and Pensions (HELP) Committee followed suit and finished considering — and approving — nearly 20 pieces of bipartisan legislation related to medical innovation.

To help get these critical reforms across the finish line, we need each and every one of you on the #Path2Cures to charge ahead. Please continue to make your voice heard, share your stories, meet with your leaders in Washington, and stay active on social media. Tell the world why you need #CuresNow.

This effort has been about teamwork from the start. We’ve seen that when we work together, big things can happen — and this is no exception. We continue to work with all stakeholders, including the White House, in order to make 21st Century Cures a reality for patients, families, researchers, doctors, and job creators across the country.

Your efforts in August have laid the groundwork. Together, we’ll close the deal. Let’s make the most of this opportunity to deliver hope to millions of Americans by making #CuresNow a reality.

To learn more about 21st Century Cures, please visit

Rep. Fred Upton is the Chairman of the Committee on Energy and Commerce. 

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