Most of us take non-profits and their causes at face value and assume the people leading the charge are straight arrows with nary a conflict of interest. This is not always the case. The most recent example of things not quite being what they seem came from the recent CBS News investigation into the Wounded Warrior Project.
Non-profits formed around diseases are also ending up in the hot seat. A few years back Susan G. Komen (formerly known as Susan G. Komen for the Cure and originally as The Susan G. Komen Breast Cancer Foundation) got called out for its strange bedfellows. An op ed in The Washington Post made clear the organization was deep into conflict of interest problems partnering with companies with links to carcinogen production — from an oilfield services company that uses “a process for extracting oil and gas using a mixture of water and chemicals, including known or possible carcinogens” to KFC after being sued for suspected carcinogens in its food.
From Praiseworthy Grassroots to BigPharma Bedfellows
Now there’s reason to wonder about troubling a conflict of interest with RESOLVE, a non-profit organization that bills itself as The National Infertility Association here in the United States.
For weeks RESOLVE has called on its volunteer community — particularly bloggers and social media participants – entreating them this week to lead a charge to #StartAsking for more awareness and access to treatment as part of its designated National Infertility Awareness Week (NIAW) campaign. What troubled me though was the cast of characters that RESOLVE was “partnering” with in this endeavor. 
Originally a grassroots, patient-led group RESOLVE was formed 40 years ago to offer peer-to-peer support. Many of the 400 volunteers RESOLVE listed on its 2014 tax filing continue to work at the local level. These volunteers remain committed to helping individuals cope with the body blow that an infertility diagnosis delivers. Their grassroots work is praiseworthy. Go volunteers!
Conflict of Interest, Maybe?
Something, however, kept making me uncomfortable about RESOLVE’s partners and why they are so gung-ho about National Infertility Awareness Week. Ferring Pharmaceuticals even issued its own companion press release.
Here’s the thing. I know firsthand from my work in the business world, “partners” have clear motives and incentives for growing their bottom lines. What I learned digging into RESOLVE’s “partners” made me a bit nauseous — flashbacks to my fertility drug injection days.
Let’s take EMD Serono, a RESOLVE Impact Partner. They provided between $150,000 and $250,000 to make that category of partner. They are also the maker of Gonal-f, an expensive drug — check out this a link to women discussing the cost of it on The Bump. The Gonal-f shot provides the hormone (FSH) that helps cause ovaries to produce eggs.
So this begs the question: If EMD Serono is forking over nearly a quarter million dollars, does RESOLVE prioritize serving infertility patients or does it serve deep-pocketed “partners?”
Should Non-Profits Spend on Vanity Projects?
I had to know more about how RESOLVE was deploying its financial assets. Among the things I discovered: RESOLVE recently engaged an outside firm to burnish its brand and, according to this client testimonial posted on the MCI website, achieve a goal to “control the conversation around infertility awareness.”
Now I don’t know about you, but I don’t think it’s a good
thing when any organization, institution or entity controls the conversation. Aren’t we supposed to live in a free-wheeling democracy where different points of view are not only welcomed but encouraged??
By the way, MCI makes no bones about its business objective “to strategically engage and activate their target audiences, building the dedicated online and offline communities they need to strengthen their brands and boost their performance.” (Incidentally RESOLVE’s President is also a member of the MCI leadership team)
So let’s get back to consumers and their needs. Don’t they want responsible, medically-indicated procedures to combat infertility?
How does that jibe with RESOLVE’s corporate sponsors — a roster of reprotech service providers and companies largely in a position to profit from RESOLVE’s loud call to expand access to fertility medicine. Minus the documentary film producers behind the film, Have a Baby, the NIAW team (shown above) is a who’s who of reproductive medicine clinics and pharmaceutical vendors who reap huge proceeds from selling drugs, products and services.
Of course they want to drive more access and health coverage for fertility services.
Big Pharma Monetizes Fertility
I’m pretty sure the board members of Merck (market cap $153.B), Ferring Pharmaceuticals and IntegraMed Fertility (purchased in 2012 for $169.5M) aren’t feeling the pain of a woman reeling from a diagnosis of PCOS or endometriosis or premature ovarian failure. What they’re saying is: ChaCHING! Let’s partner with RESOLVE to harness all these women– and those worried about one day — struggling with getting pregnant and put them to work demanding health insurance coverage. What can be more ‘feel good’ than getting behind motherhood?
Infertility is only a disease when there is a medically indicated diagnosis (e.g. azoospermia, PCOS, POF, endometriosis, etc.).
I hate to be a buzzkill, but aging has consequences. Unlike what the entrepreneurial members of the American Society of Reproductive Medicine (ASRM) would like us to think, an old uterus is not diseased–it’s old. If aging were a disease imagine how many people would be demanding their health insurance cover cosmetic surgery for their ‘diseased’ sagging skin or reimbursement to color their grey hair?
It’s important to remember that in vitro fertilization (IVF) was developed specifically to treat women with a clear diagnosis of blocked or damaged fallopian tubes. The over use of IVF has been studied and criticized by physicians and bioethicists alike. IVF failure rates are high and prevalent among predominantly healthy, older women who have played Russian Roulette with Mother Nature. Then there’s the issue about the lack of comprehensive, longitudinal studies tracking those exposed to high doses of hormones and any health risks that may arise over time.
#StartAsking
In light of the misplaced trust we sometimes place in biotech companies (Theranos, anyone?), healthcare providers and advocacy groups, perhaps we need to #StartAsking some questions. Let’s ask our government institutions and industry watchdogs to pay greater attention to how health advances are developed, delivered and marketed.
Perhaps it’s time we #StartAsking for a closer scrutiny of RESOLVE’s mission creep and those of their deep-pocketed and eager sponsors.
Fix the System for Whom Exactly?
We need to #StartAsking for the medical establishment’s ‘do no harm’ pledge not to take a backseat to profit-taking and market share expansion.
Let’s also #StartAsking for the responsible, ethical and evidence-based practice of infertility medicine. That’s not always what transpires with an entrepreneurial health industry. Health entrepreneurs here in the United States are free to pursue protocols that have not been peer-reviewed or medically indicated.
In more recent years, infertility clinics have turned their attention to otherwise healthy women. Using all forms of media, new ‘fertility’ providers are boldly advertising egg freezing services (financing plans available). The young woman seated next to me in the dentist office last week did a double take when one such “freeze your eggs, girlfriend” radio ad punctuated a Maroon 5 song. What I reminded her was that egg freezing, while available, doesn’t actually guarantee a pregnancy or live birth.
Loose regulation at both the federal and state level makes the U.S. an outlier compared to the rest of the developed world. Other Western nations — including Canada, the UK, Sweden, Germany, and Australia — heavily regulate many aspects of ‘fertility’ services.
Perhaps it’s time we #StartAsking for another look at that?
For more on why it’s time to reform and regulate the ‘fertility’ industry, listen this interview.
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Now, dear readers, I have an ask of you — please share this post with everyone you know who cares about free speech and responsible medicine.
Argh. Yes! I wrote a while ago about getting an email via Resolve from someone peddling ovulation tests/calculating tools. And looking more closely at their website now, they have a scrolling list of their sponsors, all corporates wanting to make money out of misery, as you say.
I’m beginning to regret my post on their theme.
Don’t be too hard on yourself for being swept up in the NIAW wave, Mali. The larger message in your blog post remains important. Furthermore, the campaign organizers (MCI, I suspect) did a fine job of appealing with its can-do spirit. Most people diagnosed with a condition contributing to infertility have been ignored for so long, it’s no surprise that we perk up when it looks like someone might actually be paying attention to the distress we’ve suffered. If RESOLVE’s partners in the Big Pharma and fertility megaclinic categories really cared I think their $$ would be better spent policing clinics with predatory practices (e.g. clinics that pay bonuses to doctors who sign up patients to IVF even when it is not medically indicated), deploying funds for longitudinal health studies and invest in on-site clinic counseling and palliative care components to address the very real trauma that comes with learning that a successful pregnancy and delivery will not be possible. Instead it seems they want insurance to pay for as many cycles as the clinics are willing to perform. (Remember this IVF addiction piece)?
I love your #StartAsking list and agree wholeheartedly with everything!
Before this year I had never really participated in NIAW (certainly not publicly), and I did so this year, even though I’ve long been uncomfortable with the “never give up” message that the organization seems to advocate for and lack of belonging/recognition/support for people like us. I love the idea of a week devoted to infertility awareness, but I refused to use their hashtag or acknowledge the organization in any way since there are so many concerns that I have. So I suppose that makes me a hypocrite, but I’m ok with that.
I hesitated to use the hashtag, Kinsey, but came down on the side of being in the flow of the conversation — and not allowing one group to “control” the infertility and women’s health story.
I have never been impressed with Resolve, full stop. I attended the Fertility Planet expo a couple of years back, merely as an observer, being ten years past my own experience.
I confronted their leadership in a public forum for failing to have up on their panel a woman who had wound up childless and moved on, who had actually resolved.
Instead she had a celebrity who claimed to have got her adoptive daughter in 24 hours.
I am circumstantially childless and have always rejected the Infertility label. Claiming that mantle is just playing into the hands of a system all too eager to hijack you for their cause.
If Resolve did what it was supposed to do there would be no need for this and the many other blogs and communities for women who are without children, for any reason.
Resolve has always sought to control the conversation, I had a long email debate with someone there at least ten years ago about my refusal to say, as per their guides, that I had chosen to be childless.
I did not choose to have a chronic illness which barred me from adoption, fostering, etc.
Resolve cannot get their facts straight. As a Wall Street veteran I understand the motivations of big business and was never anything but wary about the Fertility industry. Based on my previous experience with Resolve, I am not surprised to learn they are nothing but a nonprofit arm of Big Pharma.
Thanks for the added perspective, Christina. You’ve validated all my worst fears. Hopefully other women benefit from the findings.
I’ve been told by many people in the infertility community that I’ve choose to be childless and that I have option that I refuse to do and that I should accept that it is a choice. It’s downright insulting. For that to come from Resolve shows their lack of respect for us.
As I scrolled down and first saw the logos, I literally said out loud: “Whoa.” This is so frigging disturbing, but sadly, not surprising. Another avenue for profiting off women’s fears (which have been fueled by many of these same organizations’ ad campaigns). Time to stop.
Thank you for your detailed research and for revealing this.
My reaction exactly: WHOA!
This is a tough realization for me. On the one hand, seeing industry support is considered a good thing given my background. Financial support brings with it legitimization and a drive to find answers. I know many excellent scientists who work at companies like the ones above and their goals for the research they do are for finding the why while also making a positive impact on the world in general.
But, just as you wrote, it’s important to remember that companies always have a financial goal behind the work they support. And I wasn’t aware of the connection that you spoke of. My hope, given that RESOLVE is non-profit and has a long-standing tradition of being a source of support for those living with infertility and repeat pregnancy loss, it that this relationship is superficial and there isn’t transactions happening that would harm the ALI community.
I know, Cristy. It’s disillusioning. History shows that money talks and has influence. How can it not? With the significant dollars going into RESOLVE’s coffers it’s hard to imagine that its partners won’t impact focus. Wearing my business hat, if I were a BigPharma marketer or clinic operator, if I didn’t think my ‘partner’ funds were growing my bottom line I’d take my money and move it elsewhere. Another red flag? RESOLVE’s director was awarded a distinguished service award in 2014 by the fertility industry’s largest trade association, the American Society of Reproductive Medicine (ASRM). And where was the award conferred? Hawaii. Hmmmm. Glad to know that reprotech executives can afford to blow off some steam from their stressful jobs in a tropical paradise. The location of the ASRM annual meeting award ceremony was conveniently omitted from the RESOLVE press release.
Contrast that with FertilityIQ, which doesn’t take any industry funding as matter of principle.
Resolve’s lack of information on being Childfree/childless isn’t a coincidence when there really is no money that can be gained versus from the fertility and adoption industries. It’s politics and doing and aligning with anyone you can to advance your cause even if others causes end up hurting others.
But this isn’t just Resolve. There are so called “bioethic” groups who align themselves with anti gay groups to advance their causes even if it discriminates against certain groups. I’ve also seen anti adoption and adoption reform groups align themselves with groups that discriminate against those who are infertile.
Controlling conversation? It sounds scary (especially for someone who was born in communist parts of the world). I have also been very uncomfortable with the “never give up” message.
I was disappointed, but not surprised, that addressing the major gaps in reproductive medicine’s care was not part of Resolve’s National Infertility Awareness Week mission.
As a patient I encountered a blatant unwillingness to diagnose coupled with a frenetic push towards running treatments, a broad failure to acknowledge the psychological trauma involved in living with and treating infertility as well as a complete dismissal of those who don’t continue treatment.
I like some of what goes on during awareness week, but I’m not ok with was isn’t going on. That there’s not a call to fix the wayward system of reproductive medicine that does not serve the patient first and foremost is….peculiar. Until you see who Resolve’s sponsors are.
In my recent post on my own experiences as a patient, I #asked for a lot of things, including palliative care and
“I’m #startasking you, Reproductive Medicine, to prioritize diagnosing the cause of your patient’s issues whenever possible before you start putting patients through the fertility treatment wood chipper. In other words, I’m #startasking you to practice medicine.”
This is so interesting. There is no such thing as RESOLVE in France, and Bamp.fr just finished their second edition of infertility awareness week, that they organise with something like 5k US$ and a lot of volunteer work. I admire what they do and the fact that they promote discussion and try to brake some taboos. But there, even without big bucks involved #StartAsking is definitely something that should be done and that most likely has not been done.
Unfortunately, it seems like everything has corporate sponsorship these days. It’s disheartening and worrisome to me to see that list. One of the things that has sort of cooled me off towards RESOLVE in the last couple of years is the fact that they seem to be moving towards acting as a lobbying group. As far as I can tell, RESOLVE doesn’t fund research (if I’m wrong, please correct me). While I can somewhat see a slate of corporate support to generate research funds (which still raises questions, but is, for what it’s worth, often how research gets done these days), this bunch of corporations giving money to an organization that does advocacy makes me wonder exactly who is being advocated for. Like you say, corporations do not generally give out of the goodness of their hearts – there’s almost always an agenda. I back the idea of a group that helps pull together and disseminate expert/truthful information and provides support/support groups, but I really find it hard to get behind a group that has some idea about “controlling” the conversation around infertility. Infertility is as diverse a conversation as the people it touches. I hope local volunteers will keep facilitating that conversation – in all its many forms – but I would also like to see the higher-ups answer some of the very valid concerns/questions you raise.
I also agree with Sarah (PP) about involving palliative care in reproductive medicine – that would benefit many, I think.
After many expensive and heart-breaking attempts to get pregnant, I gave up and have chosen a child-free life instead. Although it was many years ago and I seemed to have blocked a lot of the painful memories of that time, I do know that I did not feel supported by the Doctors to spend any time with us to find out what the underlying cause of our infertility was. They just called it “unexplained infertility” while just quickly moving to the next and more costly step in the process. Almost like we were in a factory of couples struggling with infertility…and it was just a matter of time and luck when one of us got the Grand Prize. It’s sad that money controls this “giant”, but I also know that this is a bigger problem in the medical field as a whole! Very sad and scary at the same time. There would be cures for most diseases by now if the greed and power of the pharmaceutical companies didn’t control it. If there was a cure, their costly medicines would become obsolete. Think about it….
Thanks for the post Pamela, class research as ever.
Picking up two points you made:
“I also have a hunch that most humans take non-profits and their causes at face value & assume the people leading the charge are stand up guys and gals.”
– yep, probably a dangerous assumption. Over here in the UK I find it useful to ask myself if they are not for profit, what are they for? Quite often the Not for Profit sector is really “for” the inflated the salaries of the bureaucrats that run them.
“pretty much a softie when it comes to forking over cash or signing a Change.org petition to save the planet or the like. Who doesn’t want to be a part of something meaningful”
– so easy isn’t it… and cosseted in the instant feel-good of associating ourselves with something worthy we miss the hypocrisy going on all around it.
The only good thing about going through my late forties now, (don’t ask an infertile experiencer about menopause) I find my BS detectors are even more finely honed than ever.
But who wants to listen. It’s dangerous ground.
..Control the conversation…so wrong on so many levels.
As for RESOLVE’s President who is also a member of the MCI leadership team – that RESOLVE hired to burnish the brand – stinks of rotten corrupt self-interest.
Business and profit is not automatically bad (profit is what pays our salaries, so we can eat – or as folks here are tending to say \”so we can feed our kids\” in a kind of virtue signaling that makes me want to vomit over them. The post modern assumption that profit is intrinsically bad because it must be \”ill-gotten\” infuriates me. ( I work bloody hard running a business and employing folk with absolute integrity at its, and their, core).
Charities and Not for Profits are not automatically good.
Life -and humanity- just ain’t that black and white.
I’m a bit late to the party, but I have loved reading all the different takes that the childless/free segment of the infertility blogging community came up with for the NIAW #StartAsking project (including Sarah’s series, and Mali’s post). You have asked some excellent, hard questions here (and I’m curious whether anyone from Resolve ever contacted you after it was published). ARTs have certainly helped many couples — but what are the costs that we’re not hearing about? Thank you for all your efforts to shed some light on these unasked questions and demand some answers and solid information vs feel-good cheerleading.