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IVF Raffles and the Disparity of Care: What Needs to Be Said

Posted Oct 21 2012 9:59am

There’s a about the latest infertility clinic to sponsor a raffle of an IVF cycle. And, like so many pieces on this controversial subject, it gets at the ethical dilemma of such raffles:

“It is against the law to raffle off a puppy, but we’re allowed to raffle off the opportunity to have a baby?” said Pamela Madsen, a founder and former executive director of the American Fertility Association, a nonprofit organization based in New York City. “What if they were raffling off chemotherapy? Would we be O.K. with that?”

(Source: Douglas Quenqua, : New York Times, October 20, 2012)

Pam’s right: no, we wouldn’t be okay with that.

I’ve written about how I feel about IVF raffles before and I still come to the same conclusion I did four months ago: personally, IVF raffles and contests aren’t for me. But taking a step back, and with some this morning, I realized why I’m even more vehemently opposed to IVF raffles now.

As a community, we have to fight such an uphill battle to prove our desire for children worthy. We are constantly told that we are selfish for wanting to have our own children, for seeking out treatment. We are blamed when we decided to wait to start a family. Our diagnoses and experiences are invalidated when we are told to “just relax.” And with the advent of new and necessary technologies like ICSI and pre-implantation genetic diagnostics (PGD), we are accused of creating “designer babies” for our “selfish whims” of parenthood.

And if you don’t believe me, just look at state laws. Only 15 states in this country mandate some kind of coverage for fertility treatments. Even most insurance carriers see our paths to treatment as elective procedures. (I’ll expand more on this point in a few.)

But when you start running a contest that promises you get to “win a baby!” you just add more fuel to the commodification fire.

Children are not a commodity. The desire to parent is a biological instinct.

And let’s not forget: just because you might win an IVF cycle doesn’t mean you get to take home a baby. Let’s get real, here.

While I am not a fan of IVF raffles, I must give credit to those clinics that randomize their winners. The clinic mentioned in the NYT piece, however, is not one of those clinics:

Contestants were asked to submit “the most emotional or entertaining essays and homemade amateur videos” explaining why they wanted a free round of I.V.F. “Make us laugh with you or cry with you,” the announcement said. “Tell your story straight from the heart.”

Look, I don’t need to make a video to get you to laugh or cry about my story. I’ve been laughing and crying for three and a half years (and, with the bevy of early pregnancy hormones, is something I’m getting used to doing every hour, on the hour). What makes one person’s laughter or tears more worthy than the other?

Let me put it bluntly: we all have our infertility sob story, okay? No one – let me repeat that – NO ONE has an easy infertility journey. Infertility sucks no matter who you are, where you live, or how much money you have or don’t have to build your family.

When IVF raffles demand we tell a more compelling sob story than our fellow infertiles-in-arms, it may as well be the Hunger Games of the Pain Olympics.

No person’s pain and suffering should be deemed more “worthy” than another’s. If you’re going to do an IVF raffle, don’t make people compete for who has the more compelling emotional narrative. Either give a cycle away to a random winner or, I don’t know – charge less for your cycles overall maybe? Let’s bring the affordability factor into a decent range for most middle class families instead of testing the upper limits of the infertility community’s Pain Olympics.

I get it: IVF isn’t exactly a dollar store medical procedure. You’re talking about the creation of human blastocysts, cryopreservation, and the transfer of those cells from petri dish to storage to a woman’s uterus. Doing this cheaply probably isn’t the best idea.

That said, the base cost for a single cycle of IVF: as much as $25-30,000 with medications – is not exactly a chunk of change that most regular Americans have lying around their bank accounts. Believe me: I know we didn’t and we spent a little less than half of that out-of-pocket – and that basically wiped out our savings.

This is the bigger point that I wanted to make in my response to this NYT piece: we shouldn’t have to gamble away IVF cycles and chances for babies in the first place because family building costs should be made more manageable for infertility patients.

Only 15 states provide some form of mandated coverage of infertility treatments, right? So what about the other 35 states? Well, to be honest: sucks to be infertile and live in one of these 35 unmandated states. Or, sucks to live in one of those 15 states but have your company’s healthcare carrier based in one of those 35 states. Fact is, infertility treatment is routinely denied in this country.

Could you imagine if we did this for cancer patients who needed chemo? For paraplegics who required prostheses? I like to use both the cancer patient and paraplegic examples because I think it explains the disparity of insurance coverage for infertility patients so acutely.

You would never tell a cancer patient to “just relax” and her cancer would go away. So why do we say this to infertility patients? You would never tell a vet who’s just come home from Afghanistan and lost both his legs to “take a vacation and you’ll walk again.” So why would we make that same recommendation to a couple experiencing infertility?

You would be outraged if an insurance company denied a claim for covering your best friend’s chemotherapy. You would be outraged if that same insurance company told your friend, the veteran, that they won’t cover the cost of his rehabilitative physical therapy, prosthetic leg, or even just his wheelchair. You’d be outraged because these are basic treatments and standards of care.

So where’s the outrage from the general public when insurance companies deny coverage for fertility treatments, a basic treatment and standard of care for our disease?

It’s not there because the general public still sees fertility treatments as elective and our desire to parent a selfish need. And IVF raffles feed into that dismissive sentiment.

Which, quite frankly, is bullshit.

With the Affordable Care Act, that landscape of coverage may change in this country. It all depends on whether or not each state sets a benchmark that includes infertility coverage. That’s a pretty tough battle to fight in all 50 states, but it’s a necessary battle all the same.

But Keiko, you say to share our infertility stories because they raise awareness. Isn’t that what these clinics are doing, highlighting and sharing our stories?

On a fundamental level, yes: they are. But they exploit your stories for self-serving purposes. You can’t deny the marketability of an IVF raffle.

I counter with this: why can’t clinics just share patient stories for the sake of raising awareness, no strings attached? Why do they have to dangle this free cycle carrot to the most worthy story?

It’s kind of like those awful Facebook breast cancer awareness memes : they don’t really teach us very much about how to make an active difference in raising awareness. It’s cute. It’s trendy. It’s slacktivism at its finest.

We have a unique chance to make a real difference with The Family Act. I won’t rehash the details here but I’ll direct you instead to RESOLVE’s comprehensive website about this very important piece of legislation.

Folks, I cannot tell you enough: it is do or die time for The Family Act. If it doesn’t pass this legislative session, you can kiss an infertility tax credit goodbye for a very, very long time.

Also? The Adoption Tax Credit needs your help .

We need letters, emails, phone calls and in-person visits. Legislators need to hear from you, me – and the clinics, the doctors and the organizations fighting for this community. We need to share our stories for something other than self-serving marketing and promotion campaigns.

This is my own controversial message right back to the clinics: instead of trying to bring in more patients through the door with a gamble on hope why not bring them in by leading through empowered advocacy, as champions of family building and not industry shills for the IVF commodities market?

We need to share our stories so that every American can build their family without bankrupting themselves in the process instead of trying to sell a chance at a family.

What do you think: are IVF raffles no big deal? Are they just another form of slacktivism couched as progressive awareness raising? And have you written to or called your legislators about The Family Act? Sound off below.

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