Urge the Department of Health and Human Services to provide greater public access to potentially life-saving clinical trial results

The Issue

I lost my 14-year-old son Glenn to a rare brain cancer in December 2012. After his radiation treatment, Glenn developed a second, more aggressive cancer, so we heeded our oncologist’s guidance -- like most parents would -- to search for a clinical trial that could provide a miracle solution.

But after spending four hours every night for three years on clinicaltrials.gov desperately trying to find an experimental treatment that could save my son’s life, I found out that the majority of clinical trials in the scientific community never even get publicly reported.

That means that maybe a treatment did exist that could have saved my son, but since many scientists running the trials didn't bother to report their eligible results, there was no way for me to know that. This isn't just irresponsible -- it's also a violation of federal law.

That’s why I am calling on the Department of Health and Human Services (HHS), Congress and other related agencies to provide greater transparency in publicly reporting potentially life-saving clinical trials.

A recent Duke University study found that only 13 percent of eligible trials were reported within the legally mandated one-year mark. The study also found that 50 percent of taxpayer-funded studies have not been reported back to the American public. What’s more, from 2007 to 2012, more than 1.4 million of the 1.7 million people who participated in trials are still awaiting results. This all happens without any punishment to those who broke the law and failed to uphold a professional responsibility.

Fortunately, HHS and the National Institutes of Health are currently exploring ways to enhance transparency for the public’s benefit. Enhancements are a good start, but we need complete accountability since often times we pay for these experts to provide important results. With your signature, we can send them a clear message right now that we deserve to access the appropriate results, so we can make more informed health decisions in the future.

Please sign my petition and check our my website www.FIXCANCERNOW.com to learn more. Thank you.

This petition had 58,378 supporters

The Issue

I lost my 14-year-old son Glenn to a rare brain cancer in December 2012. After his radiation treatment, Glenn developed a second, more aggressive cancer, so we heeded our oncologist’s guidance -- like most parents would -- to search for a clinical trial that could provide a miracle solution.

But after spending four hours every night for three years on clinicaltrials.gov desperately trying to find an experimental treatment that could save my son’s life, I found out that the majority of clinical trials in the scientific community never even get publicly reported.

That means that maybe a treatment did exist that could have saved my son, but since many scientists running the trials didn't bother to report their eligible results, there was no way for me to know that. This isn't just irresponsible -- it's also a violation of federal law.

That’s why I am calling on the Department of Health and Human Services (HHS), Congress and other related agencies to provide greater transparency in publicly reporting potentially life-saving clinical trials.

A recent Duke University study found that only 13 percent of eligible trials were reported within the legally mandated one-year mark. The study also found that 50 percent of taxpayer-funded studies have not been reported back to the American public. What’s more, from 2007 to 2012, more than 1.4 million of the 1.7 million people who participated in trials are still awaiting results. This all happens without any punishment to those who broke the law and failed to uphold a professional responsibility.

Fortunately, HHS and the National Institutes of Health are currently exploring ways to enhance transparency for the public’s benefit. Enhancements are a good start, but we need complete accountability since often times we pay for these experts to provide important results. With your signature, we can send them a clear message right now that we deserve to access the appropriate results, so we can make more informed health decisions in the future.

Please sign my petition and check our my website www.FIXCANCERNOW.com to learn more. Thank you.

The Decision Makers

Leonard Lance
Former US House of Representatives - New Jersey-7
Sylvia Mathews Burwell
Sylvia Mathews Burwell
Secretary, U.S. Department of Health and Human Services

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