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Share Your Story: the Critical Role of Patient Protection Provisions in Healthcare Coverage

Screen Shot 2017-02-15 at 10.34.02 AMEven as we speak, the future of the Affordable Care Act (sometimes called “Obamacare”) is being discussed and debated by politicians on both sides of the aisle in Washington. Yet during these debates, it is far too easy for policy-makers to focus on dry facts and ideological grandstanding and forget that there are real families whose lives will be dramatically altered by their decisions. So it is our goal to make sure they don’t forget the faces, to bring those faces—your faces—to the forefront of this debate

We ask you to help us show the politicians in Washington the personal side of the importance of healthcare coverage by sharing your story, by sharing the face of your childhood cancer warrior. We ask you to tell us how patient protection provisions in healthcare coverage have been a critical part of your family’s fight against childhood cancer. We ask you to work with us to remind the politicians that their decisions, whatever they may be, will have a very real, very human impact.

So how can you help?

  • Send us a photo of you and your family holding a sign  with the words #CoverageMatters (please Click Here or the button below if you would like to print your sign)


  • Tell us your story in a video, including the sign with #CoverageMatters

Please feel free to share your photo and/or video on our Facebook page using the #CoverageMatters hashtag, or send it to us via email at!

What do we mean by “Patient Protection Provisions”?

Simply put, Patient Protection Provisions are elements currently built into healthcare coverage to guarantee that more individuals have access to better health insurance. Some of the most well-known of the Patient Protection Provisions include:

  • Preventing insurers from denying coverage (including retroactively rescinding coverage) to children and adults with preexisting health conditions, or charging more for coverage.
  • Prohibiting lifetime caps or annual limits on healthcare coverage.
  • Enabling unmarried children to remain on their parents’ health insurance until the age of 26.

You have told us that these provisions matter to you! A recent ACCO survey indicated that:

  • 9 out of 10 respondents believe the prohibition on lifetime and annual caps on coverage is important;
  • 9 out of 10 respondents that the prohibition on preventing denial of coverage for preexisting health conditions is important.
  • 7 out of 10 respondents believe that it is important for dependent children to receive healthcare coverage until the age of 26;

Moreover, the survey clearly indicates just how expensive childhood cancer treatment is, even with these provisions in place: 24% of respondents noted that out-of-pocket costs of cancer treatment was between $5,000 and $10,000, while 18% stated that they had incurred more than $10,000 in out-of-pocket expenses. Moreover, nearly 40% of respondents indicated that their family incurred “considerable” debt as a result of their child/teen’s cancer diagnosis. We can only imagine what these percentages might have been if healthcare coverage did not include these critical patient protection provisions.

To see the results of the survey, scroll down. This survey was shared on 2/8/2017 and had over 500 responses in four days.


Health care coverage matters! You know it, we know it, and now we need to make sure the politicians in Washington know it. So please, send us your photo, send us your story on how these provisions have impacted your family, and help us remind Washington that #CoverageMatters!

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at , call 855.858.2226 or visit:

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