Monday, February 20, 2012

A Hot Topic: Down Syndrome in the News

"HHS mandate"


The recently finalized Health and Human Services (HHS) regulations will mandate that private insurers provide no-cost prenatal genetic testing for all expectant mothers.  Down Syndrome advocates are calling for the mandate to be rescinded.  Here's why.

The mandate is included in the Patient Protection and Affordable Care Act's (PPACA) requirement for no-cost preventative care services for women.  To include this mandate under "preventative care" implies that Down Syndrome can be prevented (which it cannot).  It also seems to imply that it SHOULD be prevented. 

As written now, the HHS only requires no-cost testing.  It does not, however, require no-cost supports, etc so that an expectant mother may make a more informed decision based on the findings of the prenatal testing.

Also of note: Mammograms are not included in the mandate, and mammograms would prevent cancer deaths.

Another important note: The screening for DS is funded by the government in the HHS mandate. 

"The Value of Prevention"


It is reported that the life-time cost for all cases of Down Syndrome (in 1992) exceeded 1.8 billion dollars.  This includes incremental medical, developmental, and special education costs as well as "lost productivity and earnings due to disability and death."

"The economic benefit of prenatal screening is defined as the averted cost from preventing the birth of a child with a chromosomal abnormality."



The International Down Syndrome Coalition (IDSC) for Life has two major concerns with current health care mandate . The first concern is for the child who is in the womb, and is diagnosed with Down syndrome. Currently, the termination rate for children who are diagnosed in utero is reported to be near 90 percent in America. The International Down Syndrome Coalition for Life is concerned that the current health care bill will encourage families to abort the life of a child who happens to have Down syndrome, in the name of cost effectiveness.

“Will there be a panel that will decide that the price savings of terminating the pregnancy outweighs the dignity and value of the life of a child? Will it then become a patriotic responsibility to end a life that others deem less than perfect? Will there be measures written into the reform that protect the life of a child diagnosed prenatally with special needs?

“Since the goal of the healthcare reform bill as it is written is to help save the nation money, the IDSC for Life believes these are vital concerns which must be addressed.

“Our second major concern pertains to the individuals with Down syndrome who have been born. Currently, these people are given therapies and life-saving surgeries to help enhance the quality of their lives. Under HR 3200, can we be sure that this will continue? Will their medical concerns be treated equally with individuals who do not have Down syndrome? The IDSC for life is very concerned that our children, grandchildren, sisters, brothers and friends will not be given equal access to health care, because of their diagnosis. We believe that each individual deserves medical care that is needed to ensure that they can live full and happy lives. We cannot help but wonder if this health care reform act will actually lower the quality of care that our loved ones require.

“The IDSC for Life would like to see provisions in any health care reform bill which will ensure the protection of the lives of individuals with disabilities. We believe those provisions must be written into any health care reform to protect those in the womb, and those who are already born.”

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