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

There’s a piece in the NY Times this weekend 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, Clinic Raffles Could Make You a Winner, and Maybe a Mother: 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 gentle prompting from a colleague this morning, I realized why I’m even more vehemently opposed to IVF raffles now.

1. IVF raffles contribute to the commodification of “designer babies.”

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.

2. Some (not all) IVF raffles pit members of this community against each other.

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.

3. We shouldn’t need IVF raffles in the first place. What we need is financial relief.

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.

4. Instead of gambling with hope, advocate for it instead.

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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Comments

  1. April says

    IVF raffles are just a pipe dream for where I live. I’m in a state where only testing is covered. I know I’m lucky for even getting that much, but it does mean that we will have to pay for IVF out of pocket IF we decide to do it. I can’t see myself entering one either. It’s too much to pin hopes on winning a cycle. It just isn’t for me.

    As for the Family Act, I’ve called, written AND got to speak with my Congressman in person by chance at a church festival where he had gone to drum up votes. I’m not sure if it did any good, but I have made attempts.

  2. Kymberli aka JW Moxie says

    In your last post about this topic, I can remember being on the fence about it. Like you said, some are done randomly and with a bit more compassion. Those don’t raise my hackles nearly as much as the “spill your guts to us” types of giveaways.

    However after reading your clarified thoughts here, it’s also crystallized for me why even in the most compassionate scenarios, I was never 100% full on-board with IVF contests. It mostly taps into #1. I don’t think I stepped back far enough from the issue to consider these contests from the POV of the “infertility-ignorant.” The words “contest,” “raffle,” and “giveaway” connote something fun and enjoyable. Which, as we here in the community know, IVF (or any degree of assisted reproduction) is anything BUT fun.

    Another excellent post, Keiko. Truly.

  3. m. says

    Word.

    I wish I could be more eloquent than that, but Keiko, you nailed it. Coverage for reproductive issues should be the rule, not the exception. And no one should should have to enter the Hunger Games of the Pain Olympics to qualify. Fantastic post.

  4. Ashley says

    How about organs? Can we have a raffle for that too? “Tell us why you deserve a heart more than the next guy and have your name moved to the top of the transplant list!”

    Yeah, ew.

  5. Rachel Gurevich says

    “”Hunger Games of the Pain Olympics”…. Exactly. It’s sick, really. I sometimes wonder when they come up with these “marketing” ideas if people who really understand infertility at all come up with it. I imagine these sleek marking experts, who know nothing about the pain of infertility, throwing around ideas in a posh conference room. “Oh, I know! Whoever cries the hardest in a video wins! Great idea!”

    One would hope those who come up with heartbreak-contests are simply ignorant and not heartless.

    • Terri Davidson says

      When I saw this article, I thought about two things: the famous Ronald Reagan quip: “Here we go again” (didn’t we just go through a discussion about the SIRM raffle?) and the theory of relativity.

      I’ve been marketing infertility services for 16, almost 17 years. I have never been a fan of raffles, whether they strike a “discreet, respectful tone” as the article suggested or the ones that have morphed into contests via social media. But lately I have found myself defending, in a sense, the clinics that have used them. I am not defending their tactics but rather their intentions and who they are as professionals. I know some of the folks at Long Island IVF and they are good, decent people — not “sleek marketing experts sitting around in posh conference rooms” with no exposure to infertility, either personally or professionally. That is a mischaracterization of who they are.. Of course they wanted publicity for their practice. Many clinics have been hit very hard by the recession. I’m not a mind reader, but I am also sure they wanted to give patients an opportunity to tell their story and a chance to win a cycle. It is easy as a sound bite to criticize what they have done, but that does not move the conversation forward. And if I were a patient, I would also know that my odds increased exponentially if I took the time to write an essay or produce a video versus just submitting my name for a random drawing.

      But here is where the theory of relatively comes into play. The very first time I heard about a clinic using a raffle to promote a seminar, I and many others were SHOCKED. I thought about the commodification and trivialization of infertility services and all the other reasons that people have mentioned in their comments. At the time, the very idea of a raffle, in whatever form, seemed horrifying. But fast forward 12 years and now these type of raffles are considered “discreet and respectful.” But to me what is really shocking, as Keiko more eloquently said, is that the public is complacent about infertility treatment not being covered by insurance. And honestly, except for advocates like Keiko and organizations like RESOLVE, Fertility Within Reach, The AFA and others, I think as a community we have accepted our lot in life — that infertility treatment will not be covered by insurance or by the government. But let’s get real — it is not the few dozen clinics who hold these raffles that trivialize infertility. The marketing power of the insurance companies and of the politicians who rail against IVF is much more potent than the clinics’ marketing power ever will be. Raffles are a symptom of the cancer, but they are not the cancer.

      But what really irked me about this article is this ridiculous quote from the ethicist:
      “We’re used to paying for medical services, so while we’re not thrilled that you would have to pay to create a life, it’s not so bizarre for us anymore,” she said. “But raffles are the most commercialized notion of it. Something about this is supposed to be sacred.”

      To me, this quote is so disingenuous. Unless you don’t have any insurance, we as a society are not USED to paying for medical services. We expect insurance to pay for chemo, heart treatment or maternity care, but we don’t expect it to pay for infertility treatment. If it is so sacred, as Ms. Berg says, then why doesn’t insurance pay for infertility treatment? That’s the question we need to keep asking repeatedly until someone listens.

      • Rachel says

        Terri,

        I hope I didn’t offend you by what I wrote. I was really upset by the article and video, and I know there are plenty of caring, wonderful marketing people out there, you being one of them. I still hold that the entire raffle idea is beyond understanding. I would also like to say I would never write the “sleek…” comment on my blog, but wrote it here, as a comment to Keiko. I was angry about the entire thing and I still am, and I thought in a comment section on a blog I could express that anger. Maybe I was wrong about that.

        As for the sacred remark, I didn’t even know what to think about that line when I read it. One thought that did occur to me was if it is so scared, why is having a baby is considered “elective” and therefore not covered. That is hard to reconcile in my mind.

        • Terri Davidson says

          Rachel, I actually meant to add a comment to the general discussion rather than reply specifically to you.. As I said, I don’t like raffles and would rather focus on other marketing tactics to gain publicity for clients. So I have found myself in the unusual position of defending the intentions of my marketing colleagues, rather than defending the specific tactics that they used. However, I know one of the marketing people at Long Island IVF and she is a wonderful woman. I felt I had to set the record straight about who she is as a professional person. I also know you to be a clear, level-headed person who presents both sides of an argument in a rational way. As I said, I think raffles are a symptom of the cancer, but they are not the cancer. I’m also not saying that fertility clinics always use the best marketing techniques, that all techniques are equal in effectiveness or propriety or that clinics can’t or shouldn’t be criticized when they go over the top. But looking at the big picture is important.

          • Rachel says

            “As I said, I don’t like raffles and would rather focus on other marketing tactics to gain publicity for clients. ”

            Yes, me too. That’s what I wrote in my blog. I think there are better ways to market the clinics AND offer clients what they so desperately need. It’s not as sensational, but I think it can be done. I’m glad there are people like you out there in the marketing arena saying these things, as I think hearing it from “the insiders” makes a difference.

      • Rachel says

        Terri,

        You know, I can’t stop thinking about this.

        You wrote: “Many clinics have been hit very hard by the recession. I’m not a mind reader, but I am also sure they wanted to give patients an opportunity to tell their story and a chance to win a cycle. It is easy as a sound bite to criticize what they have done, but that does not move the conversation forward. And if I were a patient, I would also know that my odds increased exponentially if I took the time to write an essay or produce a video versus just submitting my name for a random drawing.”

        I’m sorry that there are clinics suffering from the recession, but I don’t think that makes it ok to use unethical marketing techniques to bring people in. I’m not sure why I should feel any better about the clinics running heartbreak-raffles just because they are not getting as many clients. I also think saying the conversation shouldn’t be about this, but about insurance, isn’t true either. Insurance is *important*, very important… but so is this raffle issue. Two wrongs (insurance not covering infertility, clinics raffling cycles off) don’t make a right.

        But what you wrote here, “And if I were a patient, I would also know that my odds increased exponentially if I took the time to write an essay or produce a video versus just submitting my name for a random drawing.” See, that’s what so gets to me. Here I am, this couple wanting a baby so badly, I pour my heart out into an essay or video, and then… I don’t win. The let down for that will be SO MUCH harder than if I just put my name into a random raffle. In one case, I bought a lottery ticket by scribbling down my name. In the other, I bared my soul for a lottery ticket, I cried, I ached to just get a CHANCE at the lottery, and now… nothing. That’s terrible.

        And not just that, but the lottery ticket isn’t even a guarantee. It’s one messily cycle, which may or may not work, which may put me in a position where I feel pushed to pay out of pocket for another cycle, a cycle may not really be able to afford.

        I know you feel compelled to defend your colleagues, and I understand I used really harsh words for some of them (and that may have been wrong), but sitting on this side of the fence, I still don’t think raffles that exploit people’s stories are excusable. I just don’t.

        Rachel

      • Keiko says

        And honestly, except for advocates like Keiko and organizations like RESOLVE, Fertility Within Reach, The AFA and others, I think as a community we have accepted our lot in life — that infertility treatment will not be covered by insurance or by the government. But let’s get real — it is not the few dozen clinics who hold these raffles that trivialize infertility. The marketing power of the insurance companies and of the politicians who rail against IVF is much more potent than the clinics’ marketing power ever will be. Raffles are a symptom of the cancer, but they are not the cancer.

        YES YES YES. Thank you, Terri. One of the biggest challenges we face as a community – of patients AND doctors – is the lobbying power of insurance providers. FFS, aren’t insurance carriers there to, yanno, help offset the cost of care to its subscribers? You would think, but it has morphed into one ugly, expensive, expAnsive beast in this country. It is absolutely maddening to me not only what is and is not covered by insurance (not just fertility treatments) but that politicians (!) are trying to dictate those same standards when, last I checked, that is a standard of care discussed b/t patient and doctor.

        And your right: IVF raffles have come about BECAUSE of the lack of funding that many couples face when it comes to fertility treatments.

  6. Rebecca says

    I really don’t like the idea of IVF raffles. For too many of us it gives a false sense of hope that if only we could win this contest we will have a baby in just 9 months. i’ve had two IVFs and no “take home” baby. IVF is just a diagnostic tool for me. I have endometriosis. The likelihood of me ever carrying a baby past implantation is almost null.

  7. Sara says

    Fantastic post Keiko. You really nailed this one. I have mixed feelings about IVF raffles, because I LOVE the idea of anybody getting a free round of IVF so much that I’m willing to put up with a certain amount of crap to get there. However, the truth is that free (or at least affordable to financially challenged people) IVF should be the norm, not the exception.

    I did four rounds of self-pay IVF in Seoul, South Korea. The average cost of the cycles was about $2500, including meds. The cost of living S.Korea is similar to or more expensive than the USA, so WHY does it have to be so much more expensive here? It’s marketed as a luxury good, that’s why.

  8. Dawn Alamia says

    “….For paraplegics who required prostheses?”
    Actually insurance companies can and do deny people prosthetics. I know this because my uncle helped pass law requiring insurance companies to cover the cost for prosthetics ( at least as much as medicare would cover).. Unfortunately, this is only a state law that involves insurance companies based in NJ.
    I do believe IVF should be covered by insurance, however your arguement that infertility should be treated like any other disability/illness doesn’t work because healthcare in the United States SUCKS. If insurance companies can figure out a way to not cover something, they will not cover it whether it is infertility, birth control, elective surgery or even cancer treatments (cancer treatments are probably harder for them to deny but that doesn’t mean that they won’t try).
    I do agree with the other three points you make against these contests, however with the financial aspect i do not believe that they are not a symptom of the problem of financing IVF; the denying coverage of fertility treatments is in fact a symptom. The raffles are a symptom of a symptom (symptom-ception?) of a much larger problem: corporate greed (especially when it comes to “women’s” issues) and its influence in health care in the United States.

    • Keiko says

      Dawn! Hello! Thanks for commenting and sidebar: HOW THE HELL ARE YOU?! You have no idea how happy I am to see your post here :) Miss you!

      I do believe IVF should be covered by insurance, however your arguement that infertility should be treated like any other disability/illness doesn’t work because healthcare in the United States SUCKS.

      I actually think the bigger issue is the fact the that both the CDC and the NIH have not officially defined infertility as a disease…. even though the World Health Organization classified infertility as a disease in 2009. Until we have a standardized definition of the disease – recognized by our top two health agencies in the nation – until then, insurance companies will continue to play the “sorry, we won’t cover that” card.

      And thank you for the info re: prostheses. Color me SHOCKED that some insurance co’s would deny these to paraplegics. #sarcasm

  9. magpiemusing says

    for me, it’s about #3. if people had decent insurance coverage for infertility (and everything else, says the woman with a $10K deductible), we wouldn’t need the damned raffles. (using the comment luv widgit, i picked a recent post of mine about health costs, btw)

  10. SDear says

    “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.”

    The annoying thing is – a ‘normal healthy couple’ is supposedly able to conceive within 12 months of having unprotected sex. Making a couple who CANNOT do this NOT ‘normal’ and therefore making i/f a HEALTH CONDITION, not a ‘selfish’ want. It drives me nuts what people will say. Thanks for speaking up for i/f.

  11. Corey Whelan says

    Thank you so much Keiko for your clean and honest accounting of this story. I think Rebecca Flick hit the nail on the head as well. In the past, I felt (personal Corey opinion only) that the raffles gave patients an opportunity to conceive, that might not otherwise exist, for them, however the contest “rip your heart out and let it bleed” aspect of this particular raffle took my breath away and was distressing beyond measure. I am weary of these news stories that deflect attention from the true emotional and financial plight, as well as the solutions, for infertility patients. Today in particular, when we should be shouting ASRM’s change in guidelines about egg freezing to the world, instead we are grappling with yet another slap in the face to our field from the press. I am not saying the story should not be presented to the public. I am however saying, that the public reads these stores and feels as if our professionals are self-serving and uncaring, which of course they are not. There is work to be done. People need to be able to pay for their treatment, without having to roll the dice.

  12. Kimberly says

    Bravo Keiko!

    Wonderfully said. And while you write from the American medical/insurance perspective (because its what you know) many of those things carry over to Canada and our medical system as well (as well as other locations, no doubt) It’s so frustrating to be in a country that has universal health care but that same universal health care will not cover things like fertility treatments because it’s considered elective. When they will turn around and cover the costs of a sex change operation. While I don’t pass judgement on men and women who need a sex change operation, I question the reasonings behind one being accepted by the government as valid cost and the other not. It baffles my mind and leaves me speechless. Yet we wonder why clinics hold raffles for free cycles or radio station holds a contest to “win a baby” (which caused a big stir and actually happened in Ottawa).

  13. Kevin @ Growing Family Benefits says

    We already have IVF raffles all over the country. You mentioned the fifteen states with laws full of loopholes: some couples get lucky and have coverage, while most don’t. For many it is luck of the draw.

    ObamaCare may close some of the loopholes for states with mandates if the mandates extend to the essential health benefits definitions. Individual plans would then be included, rather than just group plans.

    Also keep in mind the flip side of employers being headquartered in non-mandate states. The fifteen states export their mandate to remote out of state employees.