Tuesday, March 6, 2012

Follow the Money

This is the second in a series of posts discussing the new tests to detect Down syndrome in the first trimester of pregnancy. It is our hope to bring awareness to concerns regarding this test, as well as bring a call to action. As always, thoughtful and respectful discussion is encouraged in the comment section.

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 happening, and each prospective parent has the right to make their own choice. But do not for one second be foolish enough to think that a decision like whether or not to abort one’s baby is made in a vacuum. Those of us who represent the “evidence-based information concerning the range of outcomes for individuals living with Down syndrome” will forever be at odds with those who make huge profits in the court of negative opinion.

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.



Anonymous said...

Wow, thanks for this insight! Didn't even think of this when reading these articles...but, totally makes sense! We've come so far, and yet, I feel like the rug is about to be pulled out from under us. :-( Praying for some sanity in this arena!

Race Bannon said...

Or...take ALL those laws off the books, the federal government needs to get out of the healthcare business. Regulation and oversight is one thing, picking winners and losers is another.

Keep it simple...decide when life begins, and make murder illegal.

Mrs. K said...

What next? Limiting the number of children a couple can have i.e. in China????

Life begins at conception. PERIOD!!

Love each and every one of those sweet pictures. THANK YOU!!!

nicole said...

Such beautiful faces! And great information.

Sarah said...

I think this is a really interesting issue. I am pro-life but I understand that those on the other side can agree to disagree about this issue. Without offending, I'd like to offer some advice about how to get better information out there. As much as I love seeing these children, I think it would help your cause to get more on in the blog world about ADULTS living good lives with DS. Please don't start attacking me...I know they are out there, but we aren't seeing it. I think big fears exist because of WRONG perceptions about all stages of life and what to expect. This article is so thought-provoking-- disgusting but thought provoking.

crystalkupper said...

Love all the photos, and going to that link right now!

Patti said...

Sarah- stay tuned ;)

Lisa said...

Excellent points, excellent article. These are the issues from behind the scenes that people need to be aware of.

Shannon said...

Now, I have to say both aides (positive and negative) of raising a child with ds were presented to me. But there was a substantial amount more emphasis placed on how hard, ugly, and even tragic my life and my babys life will be if I allowed her to live. I hear over and over the pressure doctors put on getting testing done to women who have clearly stated that termination is not an option for them under any circumstance. It is always about money. And it makes me sick that we have no problem throwing.g our resources on luxury cars, high end fashion, marble toilets, jewlery, and any other selfish unneeded extra by we cringe to throw resources into saving and bettering peoples lives. Not that its wrong to work hard for your money and enjoy it, but at some point it is wrong when you would rather hoard possesions then help others, then save a life.

Natalie Nelson said...

Such good information about this new testing. I'm wanting to see what future posts bring. Love the pictures.

lovemy3 said...

Patti, as always...thank you for what you do!

Brett said...

Thanks so much for your efforts. Very well written and thoughtful discussion.

Lest anyone think prenatal blood tests will stop with disability selective abortion and gender selective abortion (already occurring in the U.S.), due to biomedical companies' efforts arising from the Human Genome Project, the not-to-distant future may hold:

*physicality selective abortion - eye color, hair color, height, weight, etc.
*epidemiological selective abortion - prone to diabetes, heart disease, cancer, etc.
*sexuality selective abortion (possibly?) - gay, lesbian, other
*intelligence selective abortion - IQ floor and ceiling, etc.

Eugenics is not coming, it is already here, hiding behind a curtain called "choice." The right to be born is the first and ultimate Human Right. Who will continue to speak for these, the least amongst us? Fetuses who make it 10 weeks testing mark are wanted babies, and the purpose and idea of life is not make your own as easy and painless as possible.

Patti said...

Good comment, Brett.

Anonymous said...

Dear Patti,
I have been following your blog, and of course your lovely Lily, for a while now. I found you through a friend. I just want to thank you and all the other mothers and contributors for putting your experiences out there and advocating for what you believe.
You and I in some ways are very different. I'm pro-choice, and I don't yet have children of my own.
I am, however, the daughter of a disabled mother, who has spent her life advocating for those with disabilities. I'm currently in medical school, studying to be a doctor. Learning from people like you and the patients I meet in the hospital is why I do what I do.
Sometimes in medicine, it is hard to present the good aspects of diagnoses because the good is often unknown and very much steeped in an individual's experiences and value system. You have to wait to see how the diagnosis plays out for that particular patient. The thing is that, often, the bad is unknown too. That certainly is the case for people with Down Syndrome. We cannot tell in utero exactly what challenges or what joys that person will experience.
So thank you for these posts and for sharing your family. Thank you for hopefully making me a better future doctor. Thanks for letting me know that there is a great network out there to direct patients to.
For what it's worth, I'm not sure if this test is a good thing or a bad thing. I think that information can be helpful, and I do support a woman's right to choose. That said, labeling this test as preventative care is disgusting. Preventative care is early action taken to prevent a bad outcome -- not a child.
I apologize for the long comment, but I've meant to comment for a while. You are such a huge inspiration, and Miss Lily is just sweet as pie.

She’s Our Butterfly said...

Thank you Patti for being such a wonderful advocate for our children!

Emma said...

I think (hope) things might be different if America turned to socialized medical care as it is here in Australia, or Canada, or the UK. Private businesses with profit as their goal shouldn't be dominating the discussion on medical issues like this.

Chandres said...

I'm curious, how far away are we from this scenario...

Doctor tells mom she can have this test at no cost, mom gets test.

Test results come back positive for Ds, but mom chooses to continue pregnancy.

Mom has baby, big bucks are due to the hospital.

Insurance says "Pre-existing Condition" and doesn't cover child.

Anonymous said...

Emma and Sarah took the words off my fingertips. If healthcare were not a for profit industry, then human life would not be subject to profit-loss comparisons. Canada and the UK give new mothers a whole year of paid maternity leave on top of their healthcare. Imagine having a whole year to bond and establish breastfeeding!

I had the quad screen with my second child. I was 39. My results came back 1:53 risk for trisomy 21. The doctor advised me not to have an amnio unless I was planning to terminate. He did not pressure me or give me any opinions. My baby had a normal heart on the ultrasound, and that was my big worry. DS I could deal with, but I was hoping for no heart defect. I elected not to do the amnio. My dr had no reaction. I'm sure some doctors pressure or scare women, but mine didn't.

Finally, even more cost effective for insurance companies is to cover birth control. That is way cheaper than pregnancy and birth. And I mean contraception, not abortion. Although I think that should be covered too because I'm prochoice.

Politicians always say they are against abortion except in cases of rape or incest. If it's murder, then it's murder and there should be NO exceptions. I happen to believe there should be no restrictions. People wrongly believe women want to have abortions and have them eagerly and casually and frequently. I do not believe this.

Congratulations on your little traveler, Patti.

Patti said...

Becca- thank you so much for your kind and thoughtful comment. It meant so much to me.

Chandres- I had that EXACT conversation with my 20 year old daughter today. I am very curious to know how insurance companies are going to handle those cases. It seems that there would be a precedent set with amnio's already being almost 100% accurate and women choosing to continue their pregnancies, but I've never thought about that until today. I'm going to have to research this!

The Spicer Family said...

Having given birth to my only bio child with Down syndrome while living in Canada (Emma, the last picture above), I must disagree with the comments about socialized care being the answer. Because the government is having to pay for the medical costs of any disabled children who are born into their care, and because they are already having problems paying for the care, not to mention finding and retaining physicians, what is their incentive to promote the continuation of the pregnancy of a disabled child? A single-payer health care system is simply an insurance company, with all the attendant failings but even less accountability (they need not worry about losing customers), writ large.

Anonymous said...

Because of the Patient Protection and Affordable Care Act (PPACA) insurance plans cannot limit or deny benefits or deny coverage for a child younger than age 19 because the child has a pre-existing condition. So as it stands now, having a prenatal diagnosis of DS would not exclude a baby from health coverage.

Anonymous said...

I agree with what The Spicer Family said about government run health care. Remember Sara Palin’s “Death Panel” comment about HR 3200 (she even used her child with DS as example of someone who might be targeted.) That statement was mocked at the time but some might argue that is exactly the type of thing that happens in countries with nationalized health care.


Anonymous said...

To echo anonymous--starting in 2014 "Obamacare" will also require insurance companies to cover all people with pre-existing conditions who apply (not just kids 19 or younger). It has also already removed life time limits, which were a huge burden for families of medically fragile children.

Additionally, while I agree with some that a single payer system doesn't ensure great care, I don't see how an entirely free market system (which would be SOLELY profit driven), would be better for kids with Ds. The free market developed the test, after all.