Patients Being Heard for Once


There are no words to describe the spirits of a terminally ill patient or parents who have dreams and hopes hanging on the progression of stem cells for the day that comes terminally ill patients can live, or disabled children can play and interact with normal children and siblings. The emotional side or the humanistic side that at times is claimed to interfere with objectivity and decision making of researchers, and at times the broken rules or taboos of having emotionalism mixed in with the critical decisions of researchers or in some cases those of medical doctors is forbidden. If millions are held helplessly with no hopes of accessing the latest breakthrough treatments, then how many must die or held hostage to their disabilities, pain, and suffering before all of our voices are heard for once? Patients are the largest stakeholders with no conflicting interest. We just want the rights to our own stem cells. Our desires are the most reputable and transparent of all the stakeholders. When will our voices finally for once be heard loudly that “we just want the rights to our own stem cells?” The argument preached by researchers with PhD’s that “terminally ill patients have irrational objectivity because of their interests has no place here in the decision process of what is in the best interest of the general public, or you do not have the background or proper emotions to base any meaningful opinion.” My seven year old son has severe CP, and he cannot walk or speak. My second daughter who is 4 asked me the other day, “Dad, when will Lawrence begin to walk and play with me?” She is finally coming to grips to the reality of the situation. I answered, “Someday you will have treatments that will help improve his speech, and he would probably play with you.” However, deep down contending with my own emotions, I thought, “Well, it can either happen in 15 to 20 years or decades depending on the possibility of the FDA stepping aside.”
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Pioneer Founding member
LLL6521 - Your post is a good reminder that it isn't just patients who have terminal or chronic diseases that are being denied their civil liberties by the FDA's regulation of our own stem cells as drugs. There are millions whose quality of life is limited.