|Payton and Nika|
Follow the Money
guest post by dsmama
Hiding under the cloak of, “We are simply offering women a safer prenatal test and what they do with the results is up to them,” is a potential $2 billion dollar a year profit that depends directly and solely on the decisions that women make. This means that, like it or not, those profits will play a role in the public narrative depicting what life with Down syndrome is like.
How it works is that prenatal testing biotech companies like Verinata, Sequenom, and Aria need to convince insurance companies that at about $1200 a pop, testing every pregnant woman to find those expensive little bundles of Down syndrome will pay off. The bet is that women will abort in record numbers, thereby saving insurance companies future medical expenses.
You don’t think those conversations were had between these companies and venture capitalists? You don’t think these conversations are happening right now between these companies and health insurance companies? You don’t believe me?
Somewhere there is an insurance company executive who is concerned about controlling costs and keeping the bottom line profitable (because insurance is a business not a charity.) Let’s say this insurance company provides coverage to approximately 1.5 million women of childbearing age, any or all of whom could show up pregnant at any time. If the company gives doctors a reimbursement code for a prenatal test costing around $1200, it could potentially cost that company more than a $1,000,000 dollars per year in prenatal testing reimbursement fees.
Tell me how that adds to the bottom line. Tell me, how is that profitable to the insurance company owners/stockholders?
”The company has people working on economic impact, which it hopes will persuade insurers to cover the cost of the test over time, Mason, CEO of Verinata, says.”
What? What’s that you say? Medically expensive babies with Trisomy 13, 18, and 21 would disappear? The insurance company would not be paying for those heart surgeries, atresias, leukemia cases, extra doctor visits, extra tests, extra medications, early intervention therapies, and and and...?
Mr. Executive flips through the data in the fancy folder Verinata gave him. He reads about Jane Doe born in June 2008 in New York. She has standard Down syndrome that would have been 100% detectable at ten weeks gestation. She was born with a life-threatening heart defect and spent 113 days in the hospital. His company was charged about $750K and they paid out a negotiated reimbursement of around $350K. Since that time Jane Doe has incurred the usual childhood medical expenses plus a bit more for the occasional extra doctor visit or test. It is predicted that she will incur expenses related to numerous other medical costs associated with her syndrome. Her life in terms of extra insurance reimbursement costs is listed as $2 million dollars, or equal to about 1600 prenatal tests, and a handful of abortions.
Not a hard financial case to make folks. No, not hard at all. In fact, our government has already figured out how cost-effective this test really is and listed it under “Preventive” care. There is already a mandate under Obamacare that states that this test will be provided at no cost to the patient.
So what. What does this have to do with women making choices?
Glad you asked.
While testing companies are busy making big bucks, and insurance companies and Medicaid are busy saving big bucks, women are left to make big decisions - life altering decisions, often with negative input from trusted doctors and with no idea what life with Down syndrome is really like.
This is such a recognized issue that in 2008 George Bush signed the S.1810 - Prenatally and Postnatally Diagnosed Conditions Awareness Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.
There is a law on our books that says that every woman who receives a prenatal diagnosis of Down syndrome shall have
(1) up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; and (2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs.
Four years later the bill is not fully funded and there is no evidence of any national-level success implementing any of the law which stated:
Not later than 2 years after the date of enactment of this section, the Government Accountability Office shall submit a report to Congress concerning the effectiveness of current healthcare and family support programs serving as resources for the families of children with disabilities.
I’d sure like to read that report.
Maybe they couldn’t fund the bill because, you know, they were too busy funding prenatal genetic testing...
But don’t worry, Verinata is graciously “hiring genetic counselors to help doctors with communicating results to patients.” Private biotech companies are telling doctors what to tell patients. Can you say conflict of interest?
Prenatal tests do not prevent babies with Down syndrome from
What Can You Do?
If this issue concerns you, go tell the House Budget Committee to fund the S1810: Prenatally and Postnatally Diagnosed Conditions Awareness Act.
What Can Our Government Do?
Fully fund S1810 and block Verinata, Sequenom, and Aria from breaking the law by providing any information to maternal fetal medicine specialists and OBGYNs that has not been approved by the Secretary. (S1810 Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.)
What Can Verinata, Sequenom, and Aria Do?
Conduct community impact studies to see how their product may directly or indirectly affect the existing and future community of people with Down syndrome. These companies should pledge funding for research that leads to better health for people with Ds. Just like companies that touch our environment in some way are required to do environmental impact studies and to promise funding to offset risks and damage to the environment, these companies should be expected to do the same or better for their targeted human environment, the Down syndrome community.