Monday, March 19, 2012

This was done a while back. . . read at your discretion

WARNING:  This is a pure, unadulterated rant.

Why do kids die?  Why, in our amazing capacity to send pictures and words through the air and have them show up on some phone in a country 5000 miles away, can we not figure out how to cure a simple disease that we know the beginning, the middle and the end too.  Why??  I just don't get how it's possible to build a car that can drive for 60 miles after plugging it in and we can't find a way to replace an enzyme that is missing from our DNA.  I just don't get why.  It's mindboggling how much money is spent on creating a better phone, a better computer, a better car, a better pizza, a better anything. . . and yet children are dying at a rate that makes me want to vomit.  I've been surrounded by children who have, who are, or who may die most of my adult life.  I taught in a preschool in the Bronx, built specifically for the hundreds of HIV+ babies that were being born, but were not being allowed into the public schools.  I lost 13 children to AIDS in just 2 years.  My class was only 12 students.  In the first year I went to 6 funerals, the second year 7.  Half of my class died each year.

Then my son was diagnosed with cancer.  I was thrust into another world where kids were dying all around me.  In Joshua's first year of treatment, I went to 5 funerals.  Why???  Why do I hear on the forums that the children are still getting the same treatments that my son did 14 years ago for newly diagnosed brain tumors!!  Where is the progress???  How have we remained in the stone age of medicine when the world around us is accelerating at a speed unfathomable to most of us?
My son has a heart defect.  20% of the kids with Congenital Heart Defects will die before their first birthday.  WHAT!!!  Are you kidding me?  Where is the progress on the surgical front, the medication front?  How is it possible that we still can't fix something man has seen and studied for over 300 years?
My daughter has bipolar. . . 60% of bipolar adolescents go on to attempt suicide.  60%!!  How is it possible we haven't found a way to help the brain of these children?  I don't know the outcome of success for that 60%, I don't think I really want to know.  I struggle with the knowledge of what's wrong, but there have been no new medicines that really are designed to meet the needs of pediatric psychiatric disorders in over 15 years.  Really???  No one out there cares enough to stop kids from killing themselves?

We live in a country where there is a battle at hand to insure every woman has access to free birth control or to end a pregnancy if she decides it's not the "right time".  At the same time, there are currently hundreds of drugs on a critical shortage list that will literally cause children, moms, dads, sisters and brothers to die without them.  Contraception is free to EVERYONE - Don't have sex.  Methotrexate - a main staple for the treatment of leukemia is now no longer sufficiently profitable to continue making. . . WHAT???  Are you kidding me?  Where can a person go into any drug store and buy Methotrexate to save their life, like you can for birth control?  They can't. Where can a child wheel into a drug store and buy the missing enzyme they need to continue to live.  They can't.  What drug store can a parent walk into and buy IVIG so their child doesn't die from massive invasive infections?  They can't.  All of these meds are on the critical shortage list.  Kids are being denied or short changed on their treatment due to these shortages.   This country has it's priorities so upside down.  I'm not left, nor am I right.  I am pro-life and pro- gay marrige.  I believe in social programs that help the poor but I also believe in making everyone have to compete in order to promote capitalism.  I am a progressive-conservative.  I am common sense. I watch left media and right media.  I see the agendas on both side and both have great points on each individual item, but when you look at the entire agenda of any one party, you find the idiocy in both sides glaring back at you.

Here's the government list of known drug shortages.  Peruse it in your leisure time, it's shocking.

Ok, my rant is done, but, I'm hoping it fires some people up.  I am in a chronic fight for my children's lives.  I pray that we'll continue to be on the front side of medical technology, however far it has advanced.  But, I also know that I have watched and held children who weren't on the right side of that technology.  Who didn't have the drugs, or access or surgery they needed.  . . not because it was denied them (though in many cases it is, just due to companies failing to produce enough) but because we the drug or surgery doesn't exist yet.  If only our ability to advance in the world of technology could move at the same pace in the world of cancer treatment, or enzyme deficiencies, or immune deficiencies, or, or, or, or.

1 comment:

  1. Renee, that is not a rant, its cold hard facts. When our son TJ was born he nearly died because of a rare platelet incompatibility problem. So rare they don't even bother to test for it, but its pretty basic. If we wanted to have an more children I would have to be on Iv Ig therapy for most of my pregnancy to suppress my immune system. This is a drug that is in short supply and is used for leukemia px, and as a healthy pregnant woman, I would be prioritized over them. We agreed that life provided us with one miracle, and we were not taking someone else's can something so important be in such short supply?