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Abortion is not a 'cure' for Down syndrome

Students at The First Academy in Orlando choose Ashley Strube, a senior with Down syndrome, as their 2014 homecoming queen. Strube, who lives in Windermere, has attended the Christian school since the 6th grade.

Many of us, whether we’re liberal or conservative, believe the media can be biased, but the bias is not just about ideology. It’s also based in favor of conflict and strife.

What else explains why a congressional hearing more inspiring than acrimonious last month largely flew under the radar?

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"I am a man with Down syndrome, and my life is worth living," Frank Stephens, a Quincy Jones Advocate at the Global Down Syndrome Foundation, told a House committee on Oct. 25, adding, "Seriously, I have a great life."

If Mr. Stephens sounds defiant, it's with good reason.

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In August, headlines began appearing that Iceland had “eliminated” Down syndrome. Left unmentioned was how: abortion. Women in Iceland abort nearly all of the babies that test positive for Down syndrome in the womb.

Three-year-old Ava McKelvey of Mt. Airy, who has Down syndrome, and her baby brother, Michael, are about to be famous, with a photo of the pair set to appear on a giant screen in New York City's Times Square to kick off Down Syndrome Awareness month, which begins in October.

It’s hardly the world's first dalliance with eugenics, but there's something especially chilling about media coverage that simply omits the gruesome reality of what some are lauding.

Maryland’s own Congressman, Andy Harris, a Republican, said that Mr. Stephens’ testimony was the most powerful he had ever heard during his time in Congress. Rep. Tom Cole of Oklahoma, chairman of the House Appropriations subcommittee that convened the hearing and also a Republican, echoed the sentiment.

The hearing was focused, polite and productive, featuring none of the incessant Washington bickering we're accustomed to. Yet still “powerful.” Perhaps it was the topic of discussion, with a man with Down syndrome asserting his right to existence.

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At issue, policy-wise, was National Institutes of Health (NIH) funding. Mr. Stephens and other witnesses argued that research into Down syndrome hasn't received sufficient funding in NIH's budget.

Michelle Sie Whitten, president of the Global Down Syndrome Foundation, testified that Down syndrome is one of the least researched genetic conditions at NIH, despite the fact there are significant medical questions surrounding it.

For example, nearly all individuals with Down syndrome will develop signs of Alzheimer's, however, they are extremely unlikely to experience heart attacks or certain types of tumors. The explanations to these phenomena could prove highly significant — not just for those with Down syndrome, but for everyone.

Is funding in this area neglected because some of the people deciding how to spend NIH's money believed Down syndrome is a condition best “treated” with abortion? It makes you wonder.

After Ethan Saylor's death in 2013, many families in the Down syndrome community grew concerned about going to the movie theater but a film festival opening in Annapolis this week aims to change that.

Ultimately, the undeniable aspect of the discussion is that funding toward researching Down syndrome-related issues is woefully lacking compared to other conditions.

Rep. Cathy McMorris Rodgers, a Washington state Republican, who herself has a child with Down syndrome, testified that the NIH’s $28 million budget for Down syndrome research, when considered against the 400,000 Americans living with the condition, is roughly $70 of research per individual. By contrast, many other diseases see much, much higher per-capita research rates. For example, NIH spends over $3,000 per patient on researching Cystic Fibrosis.

The point is not to pit one condition against the other — there are numerous factors for NIH to consider when allocating research funds, and one wouldn't expect to find perfectly equal figures. In this case, however, the disparity is glaring.

People with Down syndrome “are the canary in the eugenics coal mine,” Mr. Stephens said. With the recent coverage of Iceland, the surprising disparity in funding and the need for testimony like Mr. Stephens’, it's fair to say there’s cause for concern.

Our own granddaughter was born less than a year ago with Down syndrome. We can not imagine a world without her and the happiness she brings to us.

We applaud Chairman Tom Cole; Ranking Member Rosa DeLauro, a Connecticut Democrat; Congressman Andy Harris and all those who are working to ensure that our granddaughter has all the opportunities and health care for a wonderful and fulfilling life.

Steven (stevenmbook@aol.com) and Beverly Book live in Easton.

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