With Down syndrome, what are we choosing to invest in?

I wrote previously about how some describe the damage of disability as the lack of support by society for individuals with disabilities. It prompts the question: with Down syndrome, what are we choosing to invest in? 

With the ongoing implementation of the Patient Protection and Affordable Care Act (PPACA) a/k/a “Obamacare,” I receive on a near daily basis news about health care reform. Featured above is an excerpt from one-such news item, an infographic by the Kaiser Family Foundation.

As you can see, almost half of all births in the United States are paid for by Medicaid. This is explained by Medicaid increasing the income-level at which women who are pregnant may be covered. (In an unintentionally humorous statistic, the same graphic notes that “women … are more likely [than men] to qualify for Medicaid’s category: pregnancy”).

Medicaid is a state-run program. Therefore, what is covered by Medicaid depends on which state is administering it. Many, if not most, programs include coverage of prenatal testing for conditions like Down syndrome. With almost half of the 4.5 million births each year in the United States covered by Medicaid, that results in millions upon millions of Medicaid dollars spent on prenatal tests for Down syndrome.

Additionally, while there may be a few other states, I am most familiar with California having  a state-wide prenatal screening program. This program pays for screening testing and invasive testing, and has done so for the thousands of pregnancies that have been covered by the program over the decades it has been in place. The federal government also has poured millions into developing new generations of prenatal testing, with the FASTER study that led to the nuchal transclucency test receiving over $10 million and Natera’s predecessor company, Gene Security Network, receiving $2 million from the NIH to develop its brand of Non-Invasive Prenatal Screening (NIPS).

The investment in prenatal testing of course is not only public dollars. In a previous post, I shared how both Sequenom’s MaterniT21 has generated tens of millions of dollars of revenue for the company and Verinata was acquired for $160 million at the start of the year. Insurance companies are now covering NIPS, and one of the first payors for NIPS that I learned of was TRICARE, the health program for military families.

Suffice it to say, there are millions upon millions of dollars invested publicly and privately in prenatal testing for Down syndrome. These investments usually are premised on professional society statements like those of ACOG: since ACOG has recognized such testing as valid,the logic goes, then medical insurance, public or private, should cover it. But, there is a gross imbalance in the funding of prenatal testing for Down syndrome.

Private insurers and Medicaid will pay for an expectant mother to receive a nuchal translucency test; or a second-trimester quad test; or an amniocentesis for a diagnosis; or, now, NIPS. But, private insurance and Medicaid are less consistent in paying for what else is recognized as valid for prenatal testing by professional societies like ACOG, ACMG, and NSGC.

The coverage for genetic counseling is spotty. Very often, the cost of the prenatal test and the doctor’s visit will be covered, but not the follow-on referral for genetic counseling–even though ACOG, ACMG, and NSGC all recognize the need for post-test counseling. There is some payment by some policies or state programs in certain instances for genetic counseling. But, none of these private insurance policies or state-run programs also contribute to the other recommended information expectant mothers are to receive.

The professional societies’ statements do not just recognize the information to be provided by the prenatal test. They go on to recognize what other information should be provided to patients: accurate, balanced information about Down syndrome and support through their local parent support organization. It is not only the professional societies that recognize these other sources of information as valid for expectant mothers.

In 2008, the Prenatally and Postnatally Diagnosed Conditions Awareness Act was passed unanimously by both Houses of Congress and signed into law. It, too, recognizes the need for parents to receive accurate information about the nature of the testing, the tested-for condition, and referral to parent support organizations. But, the Act has yet to receive a single appropriation from Congress.

So, with Down syndrome, what are we choosing to invest in? Right now, and pretty much ever since there has been prenatal testing, money flows to just one side of the information scale: the testing itself.