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Stop Federal Rule That Costs Cancer Patients Their Lives

This petition had 10,738 supporters


Saving lives should not be a crime.

Research should not be a crime.

Helping to cure cancer should not be a crime.

Nearly 3,000 Americans die each year because they can’t find a bone marrow donor match. 

I have been fighting for years not only to find bone marrow donors for my three daughters, but to help create new model research programs to see if compensating bone marrow donors could encourage more people to donate.  Nearly half of those who are told they are a match never show up.  Compensation could change that, deepening and broadening the donor pool while remaining medically safe and ethically sound.

I sued the U.S. Attorney General in federal court to allow these model programs to move forward and I won.  But three years ago, the U.S. Department of Health and Human Services proposed a new rule that has prevented these research programs from moving forward.  HHS seeks to declare that marrow cells in the blood stream are an “organ,” which would make participating in these model educational programs a felony punishable by up to five years in prison.  As a result of the proposed rule, the model research programs were forced to shut down until a more certain future for the study could be assured.

But loose cells in the bloodstream aren’t an organ.  Government agencies don’t have the power to redefine words just to keep things the way they want.  At a minimum, HHS should allow researchers to find out if incentives can stop the shortage of bone marrow donors.

HHS should immediately announce that it has rejected the proposed rule and allow these model educational programs to move forward so cancer patients’ lives can be saved.



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