DEStiny

You might know her as @Cascadia on Twitter and see that her tweets cascade in a continuous stream of warning.   You might know of her from her time with Group Health and judge her by the values of that organization.  You might know her as that questioning voice on a web conference call stridently defending patients, and picture her within your mind as an avenging hero with sword in hand.  You might have seen her comments and questions posed to the Society for Participatory Medicine list serve.   Her intellect and wit is quite apparent as her comments appear on topics ranging from emergency room design to the Open Notes project supported by the Robert Wood Johnson Foundation. 

Or you might see Sherry and think of Lilith.

Do you know of Lilith (Adam’s first wife)?  In Judaic mythology Lilith is the one Adam casts away.  Lilith questioned, Lilith refused to be subservient and was cast out from the Garden of Eden.  That sounds a bit like the Cascadia I know.

This is “DEStiny” a Walking Gallery jacket for Sherry Reynolds.

Sherry/Lilith is the center of this piece.  Her right eye is large and all seeing, magnified by the glass before it.  She is here to observe the story as it unfolds and through her questions act upon the scene.

In October, I saw this tweet from Sherry.

When I clicked upon the link I watched a story unfold describing the horrible side effects of the drug DES (diethylstilbestrol).

In the 1970's Sherry was only 12 years old, the medical community discovered the disastrous result of fetal exposure to DES.   This drug had been commonly prescribed to help maintain pregnancies.   Young girls were being diagnosed with a rare vaginal cancer that had never been described in youths.  Traditionally, onset of this rare disease occurred in women over the age of 60.

A diligent mother of one of these girls asked the question that led to a flurry of research.  She told her daughter’s doctor she had taken DES during pregnancy and asked if there could be a correlation.  This alert physician immediately interviewed the other mothers. 

They had all taken DES.

Dr. Robert Hoover, director of National Cancer Institute Epidemiology and Biostatistics Program, was very involved in the study of DES and explains the sad ramifications of the millions of prescriptions of DES.  DES was discovered in 1938 and was the first synthetic estrogen.  It was prescribed shortly thereafter to combat complications of pregnancy.  According to Dr. Hoover, in the early 1950’s, there were four clinical trials done to determine the efficacy of DES in preventing complications of pregnancy.  It was determined that DES did not prevent adverse outcomes in pregnancy.  Unfortunately, while the use started to decline, it was not stopped.

In the early 1970’s studies began tracking the adverse effects of DES on the mothers and their children.  In 1971 the US government ordered doctors to stop prescribing DES.

The discontinue use recommendation occurred 20 years after DES was proven ineffective in clinical trials.  Sadly, the product continued to be sold for another decade in Europe.

In the late 1980’s-through early 1990’s, Dr. Hoover approached the authors of the prior studies.  They agreed to put the data together to form a large study compiling all the adverse outcomes that became the paper: “Adverse Health Outcomes in Women Exposed to Diethylstilbestrol.”  It contained relative risks and cumulative risks. 

Dr. Hoover pointed out one of the most important lesson of the study: Do not prescribe a drug that has not been proven to be effective, especially not in pregnancy.

Oh, but how we have paid for this lesson.  It is estimated that over 4 million American’s were exposed to this drug while in the womb.  Many of the daughters are infertile, and/or have rare cancers.  Many of the sons have testicular cysts.  The grand-daughters are reporting late on-set of menstruation.

But one of the saddest elements of this tale is Dr. Hoover’s comment that when he enters a class to quiz medical students about their knowledge of DES, no one raises a hand to answer his questions.

So this is why we need our Lilith’s and our Sherry’s.  We must ask questions, look for answers and find scientifically supported results.     Sherry is not the kind of gal who eats the apple without question. 
And I cannot see her open her mouth in obedience while a doctor pours an unproven concoction down her throat.  Sherry makes the establishment uncomfortable. 

She has seen so much through the magnifying glass of experience.  She was a volunteer firefighter and paramedic during college.  She worked within the AIDS community at the height of the disease and watched so many friends die. She has worked in Health IT for many years and frequently volunteers her time to advocate for patient and consumer rights.

She does all of this as a cast away.  She helps create advocacy positions that others fill.  She advocates for better health outcomes for our country’s children whilst having no children of her own.

Can you imagine the bravery of Sherry?  She is the one who speaks of things not spoken of.  She is the one who labors all alone to tell us about DES and so many other tragic things.  She is the lonely oracle of the mountain, the center of the heart tree, and what she tells us may be hard to hear, but she tells us all the same.

It is her destiny.