Sample Letter To Representatives

I am writing you regarding the chemotherapy drug Fluorouracil (5-FU).  While it is a benchmark drug in the treatment of colon and other cancers, it has little publicized and potentially deadly side effects.

Three to eight percent of the population suffers from a rare genetic disorder known as DPD Deficiency.  The only time this disorder typically presents itself is when a person is administered 5-FU.  Someone with the disorder cannot process the drug as desired and suffers from many horrendous side effects.  The mortality rate of one with a serious case of DPD Deficiency is 33 percent.  That is possibly thirty-five hundred people dying annually from the use of 5-FU.

As the disorder is rare and insurance coverage for testing is not always available, genetic testing prior to treatment is not part of the standard of care.  I have found the cost for testing from two sources so far:  $441 and $230.

My wife became an unfortunate statistic of this disorder in January, 2008. She received her first chemotherapy treatment on 18 December, 2007.  She was admitted to the hospital on Christmas Eve. I’ll spare the details but what she endured and what our family witnessed were reminiscent of chemical warfare experiences we saw in military training.   Her final hospital stay cost our insurance over two hundred, thirty thousand dollars.

I appeal to you for any assistance in making genetic testing a mandatory part of the standard of care for any patient to be administered 5-FU.  Our family’s goal is to spare others the pain and loss we have suffered.