A Down Syndrome Mid-Life Crisis

Midlife DS GraphicI turn 40 this weekend. As I look back and look forward, I see a mid-life crisis for Down syndrome. 

Mid-life crises are most often the punchlines to jokes. But then, you have one yourself and you find it’s not all that funny.

At 40, I am for the most part at mid-life. While I lost my dad when he was only 61, I should be able to expect another 40 solid years of life. In looking ahead to these next 40 years, I see where today, right now, Down syndrome is at it’s own mid-life crisis.

It is sadly amazing to realize that just 100 years ago, my daughter would already be at her life expectancy, having turned 9 this summer. Think of that. Nine years old was the average life expectancy for a person with Down syndrome at the turn of the last century.

Fortunately, due to medical and social advances, individuals with Down syndrome are now living much longer, and fuller lives. Their expected life expectancy has more than doubled since just the 1980’s. Truly, my daughter’s generation will be the first to enjoy the full benefits of the advances in inclusive schooling and community living that our forefathers advocated for since the 1970’s.

Moreover, it is foreseeable that in these next 40 years my daughter may have the option of certain treatments that could enhance her cognition. So, she is and, as her father, I am, and, as a member of the human family, you are, at an unprecedented point in living a life with Down syndrome:

  • Longer lives than ever.
  • Fuller lives than ever.
  • With the promise of actual treatments within these existing lifetimes.

But, despite all of these promises for a brighter tomorrow for my daughter and the hundreds of thousands like her in the United States, and millions around the globe, it is equally likely that fewer individuals with Down syndrome will get to enjoy these advances.

This is due to the advances in prenatal testing and the persistent refusal to implement the necessary ethical measures for its implementation.

I was born the year Roe v. Wade was decided. That ruling, coupled with amniocentesis and ever more accurate screening technologies, has allowed more women than ever to end their pregnancies after a test result for Down syndrome. This, in a time when there are more pregnancies positive for Down syndrome than ever before, due to more women having more children later in life than ever before.

Unfortunately, that’s where the discussion usually ends. People go to their corners on the pro-life/pro-choice spectrum and stop listening. And, that is why the calls since amniocentesis was introduced for all stakeholders to be involved and for women to receive the needed information and support so they can make an informed decision has not progressed beyond just that: calls, but no actual system-wide action.

The U.S. Government has invested millions upon millions into prenatal testing for Down syndrome. The National Institute for Health invested over $13 million in the development of the nuchal translucency test and granted $2 million to Natera, a private, for-profit company, for the development of its Non-Invasive Prenatal Screening (NIPS) test called Panorama. Over half of all births in America are now covered by Medicaid, with many states funding prenatal testing, and states like California and Iowa have had state-wide public Down syndrome prenatal testing programs in place for decades. In four days, when the Affordable Care Act’s open enrollment is scheduled to begin, maternity care is to be an essential health benefit and prenatal care is to be a no-cost preventive care measure, which very likely will include the cost of prenatal testing.

Can’t reasonable people of good faith, no matter their position on the abortion issue, agree that some percentage of those millions of public dollars be invested in ensuring accurate information about Down syndrome and support services be provided to expectant mothers? It’s what happened when the staunch pro-choice advocate Sen. Ted Kennedy and equally staunch pro-life advocate Sen. Sam Brownback reached common ground in co-sponsoring the Prenatally & Postnatally Diagnosed Conditions Awareness Act. But, despite passage in October 2008 authorizing the Secretary for Health & Human Services to invest in accurate information, a national hotline for parents, and support and adoption services, not a single appropriation has been made.

Just the same, can’t the millions of dollars in revenue that the NIPS laboratories are enjoying as the marketing efforts of their product are ever more successful, and the even more millions of dollars genetic testing laboratories receive for conventional prenatal screening and diagnostic testing invest a scintilla, a fraction of their income, into providing accurate written information and referral to support organizations for expectant parents?

And what of the insurance companies that have spent millions in covering Down syndrome prenatal testing? Their coverage is premised on professional medical guidelines that call for offering prenatal testing to all women and NIPS to high-risk expectant mothers. But, these same professional guidelines also recognize the need for accurate information and referral to support organizations, with the most recent statement by the American College of Medical Genetics & Genomics recognizing three resources to be provided expectant mothers with a prenatal test result.

But, so far, they have chosen to only invest in funding the prenatal testing, and not the rest of the information recognized as needed for expectant women to make an informed decision about prenatal testing and after receiving a prenatal test result.

Unless changes are made in what we fund when it comes to prenatal testing, there is no reason to expect any different outcome than the trend that has already been established by the way prenatal testing is administered. And that is a trend line that bends ever downward.

Before there was prenatal testing, 100% of the babies what would have been born with Down syndrome (meaning those that would not have naturally miscarried) were born. With the introduction of prenatal testing, at first limited to women over the age of 35, some of those pregnancies were then terminated. Since the change to offer prenatal testing to all women, about 50% of all pregnancies in the United States are terminated. At this rate, with NIPS making the uptake of prenatal testing ever more likely, there is no reason not to expect the trend line to reach the number experienced in countries where the costs of prenatal testing has long been covered, where almost 90% of all pregnancies are terminated.

Perhaps making the funding changes will not affect this downward trend. Perhaps, with the accurate information and awareness of support resources like early intervention therapy, inclusive education, and parent support organizations, more expectant mothers will still choose to terminate their pregnancies. And, if so, then prenatal testing at least will be being administered according to medical and ethical guidelines. But we have never known if that will occur because the administration of prenatal testing has never been ethically done due to the lack of investment in those needed educational resources.

But, with the advent of the estimated billion-dollar NIPS market and the investment in prenatal testing mandated by insurance companies and the Affordable Care Act, we are at the moment in time when we can begin to invest in the needed resources for the ethical administration of prenatal testing.

So, we are at a crossroads. The next 40 years should be very good years for my daughter. She can look forward to inclusion in her school years, possibly classes on a college campus, increasing job opportunities, and expanding community-living options. But she can also look forward to being an ever-rarer member of the human family and, unless funding priorities are changed, one that will be perceived as a life that could have been prevented through prenatal testing.

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