By Kim Stagliano
Yesterday, I saw a Tweet that talked about a new treatment for the elderly with leukemia (article below the jump) and thought, "Wow, there's a breakthrough to add months to the life of an elderly person and yet there are folks saying our children should not be treated." Thus is born a post on Age of Autism, friends.
Help me understand why it's good to prolong the life of a 75 year old with cancer by several months, but it's not good to change the entire life path of a three year old who is diagnosed with autism? Aren't both desireable?
There appears to be a concerted effort to make sure autism is seen as untreatable, and to paint those of us who dare treat our kids as fools. Look at the Chicago Tribune article that featured a supplement so obscure (sorry Dr. Haley) that if you asked 100 parents in the biomed autism world, "What is OSR#1" 99 would give you a blank stare and the hundredth would answer, "The follow up song to Mambo #5? (A little bit of Monica in my life..)".
I'd like to ask Ari Ne'eman myself.
Sir, I have three beautiful girls who can not cross the street safely. Do you stand behind my desire, as their mother, to find effective and safe treatments outside of psychiatric medications that can be transformed into chemical straight jackets in the adult autism population? Do you respect my needs for my autistic children or do you only advocate for the highest functioning individuals who have stated that they themselves do not want a cure or treatment? I respect the desire to self-advocate for my adult friends with Asperger's. I'm in favor of employer education, post secondary school support, better awarenss and training for law enforcement and a lifetime of support as needed for adults on the spectrum. I pray my girls may one day be able to self-advocate. Until then, I am their voice.
I can't imagine a world where people with terminal illnesses advocated only for employment rights, pain management and hospice, and not treatment or cure. Or diabetics advocating for better glucose meters, sugar counts on menus and improved limbs for amputees, but not for research into cause or cure. Why should autism be any different, when the diagnosis can be life altering and even life threatening?
Do you respect my wishes for my kids?
Decitabine, or 5-aza-2'-deoxycytidine, is a cytosine analog. It is a hypomethylating agent that reduces labeling of DNA with methyl groups by inhibiting DNA methyltransferase. Excess methyl labeling of DNA that silences tumor suppressing genes has been linked to cancer development.
Investigators at the Washington University School of Medicine (St. Louis, MO, USA) treated fifty-five patients (mean age, 74 years) with decitabine intravenously for five consecutive days of a four-week cycle. Response to the drug was assessed by weekly CBC (complete blood count) and bone marrow biopsy after cycle two and after each subsequent cycle. Patients continued to receive decitabine until disease progression or an unacceptable adverse event occurred.
Results published in the December 21, 2009, online edition of the Journal of Clinical Oncology revealed that in 24% of the patients, blood counts and bone marrow returned to normal. An average of 4.5 cycles of decitabine treatment was required to attain this complete response. In those with a complete response, average survival time was 14 months. For all study participants, average survival time was 7.7 months.
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