Tuesday, November 20, 2012

What would Allen think now? by Brian Skotko, MD, MPP

from Brian Skotko, MD, MPP - Blog:
One year has passed since the life of Dr. Allen Crocker ended and his legacy permanently began. During these past twelve months, I have often found myself searching: What would Allen—our friend, mentor, and advocate—think now?
Since his death, our world has witnessed the introduction of noninvasive prenatal testing for Down syndrome. With a simple blood stick performed as early as 10 weeks into a pregnancy, a woman can now learn with near 99% accuracy whether her fetus has Down syndrome. Allen was not anti-technology, nor am I. But, we both had long discussions about the responsibilities our society would have when such a day came.
About four years ago, I remember flying with Allen to Washington, D.C., by invitation of the Joseph P. Kennedy, Jr. Foundation, to discuss the creation of materials that could be consistently given to expectant couples after receiving a prenatal diagnosis of Down syndrome. We all agreed: the information needed to be honest, balanced, and real in order to be believable and used.
Before Allen died, he was able to witness the impressive result of arduous teamwork—Understanding a Down Syndrome Diagnosis. After many years of heated discussion, some of our national Down syndrome organizations joined forces with major medical associations to write this up-to-date booklet, now freely available to expectant women in print and digital formats. The materials could not be interpreted as propaganda issued by parent advocacy groups. No, the booklet had been scrutinized by organizations representing obstetricians, geneticists, and genetic counselors.  And, now, the copyright for the book is owned by the Joseph P. Kennedy, Jr. Foundation and administered by the University of Kentucky's Human Development Institute, both independent entities of the Down syndrome movement.
Allen was pleased.  But, I wonder: what would he think of our actions since then?
Our national Down syndrome organizations have now distanced themselves from the same materials they helped create, even removing all mention from their web pages. For reasons unclear to me, the National Down Syndrome Congress and Global Down Syndrome Foundation have jointly created a new pamphlet filled with factual inaccuracies and unbalanced information, which has not been peer-reviewed by medical organizations. They have replaced clarity with confusion and collaboration with competition. (I serve on the Professional Advisory Council of the National Down Syndrome Congress but was not consulted on the creation of their new materials.)
The National Down Syndrome Society has chosen not to support any materials. Its clinical advisory board did formulate a set of criteria by which it said it would hold companies accountable—a report card of sorts that outlined the responsibilities that came with the new technology. However, the National Down Syndrome Society has since silently removed these criteria from its web page, having lost its own confidence on how to advocate in these controversial times. (I served on their Board for five years, but our disagreements over this issue led to my early departure.)
The result? Expectant couples, at large, are still not receiving accurate, up-to-date, and balanced information, even though it now exists. Prior to these tests, we already knew that approximately 75% of women who received a prenatal diagnosis chose to terminate, but only 2% of pregnant women even got such a prenatal diagnosis. Now, the floodgates are open, and pregnant women across the country are asking their providers to order the test. As of 2008, there were only 240,500 people with Down syndrome in the United States, steps away from being classified as a “rare disease.” I know Allen would have been concerned.
But, he would also point out the successes of local Down syndrome organizations. They have rolled up their sleeves and gone into action, as a national effort imploded.
He would especially applaud his much loved Massachusetts Down Syndrome Congress (MDSC), whose Board he passionately served for more than two decades. The MDSC delivers a copy of Understanding a Down Syndrome Diagnosis to every expectant couple who calls. They have created a comprehensive Parents’ First Call Program, where trained mothers and fathers are available 24/7 to text, speak, or meet, in any language, with understandably frightened parents who just “got the news.” The organization has made connections—built trust—with every maternity hospital in our Commonwealth, often organizing Grand Rounds and hospital lectures. And, the MDSC made history this past summer, passing a state law that will result in our state’s Department of Public Health distributing a copy of Understanding a Down Syndrome Diagnosis, along with information about the MDSC, to every healthcare provider who takes care of expectant couples in Massachusetts. Now, that’s leadership. I hope other groups will follow; the MDSC is there to help.
We are all setting the example for other communities.
While the new tests are just available for Down syndrome and some other trisomies, the genetic revolution is arriving at our doorsteps soon. Should fetuses be tested for breast cancer genes? If genes are discovered to be associated with one’s sexual orientation, should future couples be able to test for “gay fetuses”? Should we just go ahead and decode the whole genome of our nation’s fetuses? What we do now sets the example for what’s to come.

Allen told us all to “carry on.” But, we need to wake up and realize that we cannot just carry on in the same old way. Our times demand bold leadership. Down syndrome organizations need to collaborate on important issues. The history books will write glowing chapters about Allen. But, what are they going to say about us?

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