IVF advocacy: A Q&A with the National Society of Genetic Counselors

On my path to finding an IVF clinic I felt comfortable with, I met a genetic counselor who worked with an embryo testing lab that many IVF clinics use. Rawan Awwad was kind, empathetic, and indulged my rant about the terror that is not having IVF coverage. We ended the call with her saying that when she had an opportunity for me to share my story, she would present me with it. A year later, she did just that by inviting me to be a guest speaker on the National Society of Genetic Counselors’ podcast, in an episode titled, “Infertility from the Inside: Journeys of Loss & Hope.”

Below, I’ve taken some of my favorite soundbites on IVF advocacy and finding community and edited them a bit for clarity. The full episode includes hosts and genetic counselors Naomi Wagner, Rawan Awwad and Mary Pat Bland, and features interviews with me, Katie Hornberger and Melissa Strassberg. I’ve embedded the full podcast below. If you prefer to hear me in audio form, my portion is from 20:59 – 49:38. Otherwise, read more below.

How did it feel to receive the news that you have a chromosome inversion?

I felt a number of conflicting emotions when I received the diagnosis. On the one hand, I felt a sense of relief because with a diagnosis there is a potential solution. So, that felt hopeful. And I think too for women who experience miscarriages or recurrent miscarriages, there’s always this fear in the back of your mind that there’s something you did that might have caused the miscarriage. So, knowing it was out of my control was comforting.

Then there’s the other side of the equation, which is that with a diagnosis of this kind, it’s not an easy solution. And that’s the challenge with genetics. It’s not like I can just take a pill or make a lifestyle change and solve the problem.

I use the analogy of the Greek tragic figure Sisyphus a lot to explain how it feels. I feel like Sisyphus whose hell is essentially having to push this boulder up a hill and it’s strenuous and it’s just this horrible process and he finally gets to the top and he’s like, ‘oh gosh, this is finally going to be over’ and then the boulder comes crashing down over him. When is that going to end?

I hope there is an end for me. But it has felt often like that type of hell. Of having to continually go through something without a clear-cut end and without knowing for sure whether there will be a positive outcome.

How do you feel your experience with having this inversion is different or similar to others facing infertility?

The most common way infertility is defined is “inability to conceive.”

For women like me, our problem is not inability to conceive; our problem is difficulty conceiving a genetically typical pregnancy. And again, it varies so much person to person. Some women do get lucky and are able to have a healthy baby on their first try or maybe after a miscarriage or two. Then there’s others for whom it really is like Sisyphus and they’re going through a continual nightmare of miscarriages.

In that sense, I think women like me really complicate what we think of infertility because the stakes are different. And that’s important because the way we think about infertility and define infertility affects how medical practitioners [and insurers] define and treat infertility and it affects how we advocate for infertility coverage.

I think in some ways it’s easy to be dismissed when people think of infertility as inability to conceive. I think there’s a sense that there’s no physical harm done if they do not cover IVF or if there is not a treatment for women with infertility. But for women like me, we will have to undergo physical harm without IVF. So, my hope is that by bringing more women like me into conversations around infertility, we can galvanize and challenge the stakes and really light a fire to include us in conversations and [advocate] to have states mandate IVF coverage.

Does your employer have criteria for whom is considered ‘experiencing infertility,’ and do they determine coverage based on those criteria?

The definition of infertility doesn’t matter so much in the case of my employer because my employer doesn’t offer any IVF coverage.  They offer the bare minimum of what is required by California state law, which is some infertility coverage—so, IUIs and diagnostic testing are covered—but IVF is not.

However, my husband’s employer – let’s say it’s a Sweden-headquartered DIY furniture store that everyone shops at – they do offer a lifetime max of $15,000 IVF coverage, which is great. I do sometimes wonder when that max was set. European companies tend to be a bit more progressive in IVF coverage, so I wonder if that number should be adjusted for inflation. Because in Southern California, $15,000 isn’t even enough to cover one round.

I did notice in reading the paperwork of my husband’s policy that infertility is defined as inability to conceive. Thankfully, they did not ask whether or not I was able to conceive, because I was able to use the $15,000 toward one of my cycles. But that question – how do we define infertility – helps reinforce why these definitions are so important because they really can become a barrier to some people. And, really, when we’re considering definitions around healthcare, we should strive to be as inclusive as possible. Because that’s the point of healthcare, right? We want to positively impact and make accessible the care that people need. So, I think its problematic that the definition can be quite limiting right now.

I know that you have become an activist in this area—hoping that new legislation is introduced to help this cause. Tell us more.

First, I would say, I consider myself activated rather than an activist because I’m still very new to do this and I’m a reluctant activist. I wish that I didn’t have to advocate for my own healthcare; I wish that I could instead use that energy to navigate my health issue which is substantial and has been traumatic enough to deal with.

Nonetheless, I’m learning a lot about how to advocate and what does and what doesn’t work by taking one step after the other. When I found out that IVF was the medically sound next choice for me and saw that there was no coverage for it from my employer, I did some research on how people can advocate for IVF coverage.

I looked into different case studies that could provide a framework for how to advocate with your employer for IVF coverage. I saw that a number of graduate students [at Michigan University] had successfully advocated with their union to get $15,000 lifetime coverage for IVF. And they had so wonderfully created this website that had all of the letters they used, and they had started an online fundraising campaign. I took notes as to the verbiage they used, and I modeled my letter off of theirs and also updated it with research.

I know as a storyteller in my professional life that when trying to advocate and be persuasive, you have to use both facts and stories. So, I put in some of the story and emotion as well as a lot of facts and scientific research, and unfortunately, it didn’t go anywhere. One of the challenges of working for such a large system is that it is very bureaucratic, and bureaucracies tend to serve themselves rather than the employees.

I didn’t get a response for two weeks. And then I was passed around to different groups.

I wasn’t so naive as to expect that I would write this powerful letter and all of a sudden they would say ‘my gosh, we’re going to change our policies and just implement this change right away.’ But I was hoping, bare minimum, that I would get a response that acknowledged my situation and was compassionate to my situation and maybe would have been provided with a platform to share my story.

But I wasn’t. And I am a very principled person. So, when I feel that something is wrong, I just have this inextinguishable fire that’s lit in me. And so that fire is now burning right now and has remained burning.

I’ve learned from the fact that I did not get an adequate response, that the best way to advocate is not at the employer level, it’s at the state level, because employers tend to take their cue from the state [Editor’s note: Employers of 50 or more employees would be mandated to offer whatever coverage their state has set into law. Without IVF coverage laws in a state, each employer can decide whether or not to offer any coverage. Most don’t because they don’t have to. We mostly see multinational, private companies offer IVF coverage because if they didn’t, they’d have to make the coverage different in each state.]

I have gotten involved with Resolve, which is the U.S.-wide national infertility association and they have a number of resources for people who want to advocate for IVF coverage as well as for people who really want to be activated in terms of the legislation.  

Out of everything you’ve navigated – and for anyone out there with a structural chromosome rearrangement – other than Resolve, what resources were helpful to you?

The most important resource I found was a Facebook support group for people who have balanced translocations. I don’t have a balanced translocation, but my inversion falls under the same umbrella, which is a structural chromosome rearrangement. That group has truly been a life-source for me. Being able to connect with women and men around the world who are trying to have children and navigating these challenges, it makes you feel like you’re not alone and that’s so important because I started to feel that somehow, I was chosen to suffer. To be diagnosed with something so rare, it’s hard to not feel like somehow it’s personal. And yet being in this group, I now have close friendships with about 10 other women and we have weekly Zoom conversations. I look into their faces – there’s a lawyer and a teacher and a nurse – these are strong women who are just so deserving of all of the goodness you could wish on anyone and they are also facing this horrible challenge.

With any challenge you face, you have to see what you lose and what you gain. I’ve gained so much by connecting with these women.

Anything else you’d like to share that I didn’t ask you about?

Sometimes I like to think about what IVF would be like if men had to do it. I think there would be an IVF clinic embedded in Seven-11s across the world. Also, the needles would obviously be painless. And there would be confetti and alcoholic beverages.

I think about when one of the nurses at my IVF clinic was teaching me how to administer the Menopur and she says to me, “These needles are known for being dull so you really have to jab them in.” And I’m thinking to myself, “why hasn’t anyone said, ‘fix the needles?!’ If they’re known to be dull, why are you continuing to give us these dull needs, why hasn’t this been fixed?!” Women’s pain is more expected, and we’re not advocated on behalf of as strongly as we would be if infertility was seen as both a women’s and men’s issue.

Fix the needles. Make IVF coverage more widely accessible. And really challenge that this is a women’s issue. This is an everyone issue.