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Wednesday, May 6, 2009

We will fight the good fight. Regina's USA medical advocacy 2009

Most of you are are aware that my husband, after two months of fruitless doctor visits and two trips to two ER's, was diagnosed with stage IV kidney cancer on Friday March 27, 2009. We plunged into the nightmare that is modern medical care in the USA. I found out I needed to be with my husband constantly to make sure he received even basic care. We were going to be released to home or institutional hospice after a month of only palliative treatment. We fought for a transfer to another hospital for a second opinion. We are now getting treatment. This has been a horrible experience.

The more I talk to other people the more I hear the same story. "The doctor did not listen." "The nurse did not read the chart." "The hospital kicked us out because our insurance was running out." It goes on and on. I ask all these wonderful people what they did to right this injustice, and the response is the same. "I was too tired." "It was too hard." "I was so sad." "They just got away with with treating us this way."

This has to stop. This is not right.

Why do we have more transparency in special education law then in medical care? Why do we have more access to information on a box of Cheerios then on a medical chart? Why isn't there a medical counterpart of the Freedom of Information Act?

People tell me just concentrate on your husband, your family. Too many people have quietly done that. Too many wonderful fathers, mothers and children are gone. Too many graves have flowers on them. I will fight. I will not stop. I will not be silenced.

Today I had an epiphany. You might have seen my mural work on the side of the American City Diner. I painted all those famous stars from the 30's through the 50's about six years ago. I also painted the mural of the children reading at Child's Play. I painted the St. Jude's Hospital Thanks and Giving mural on the old Hects Building about five years ago. I would like to do a new mural series. I want to do a Medical Advocacy series. I am doing a design based on the food packaging Nutrition Facts label. Instead of Nutrition Facts it will be Medical Facts.

I want do a simple anatomy drawing that highlights the patients' illness. To the side of this will be an easy to reference list of all pertinent info. This will be done in such a way to mimic a nutrition label. I think this will be very eye-catching. I want senators and congressmen, bus drivers, and waitresses to drive by this, and I want this kind of clarity and transparency for themselves.

Where do you come in? I need walls. I would prefer them white, primed and ready for mural work. And I want these murals be in the busiest areas of Washington, DC.

I may be only a mother, a wife, a sales girl, a teacher, an artist, and a caregiver, but I will effect change. I will give all my talent, my abilities, my energy, and my belief to helping us all.

Someday you will not have to fear a trip to the hospital. You will know you will be cared for. No wife or nor husband will have to fight the silent fight for the one they love. I will stand up. They will take notice. I will never give up.

Please forward to this to anyone you think could help.

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