Let’s Remember Advocacy Day Is Just the Beginning

Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

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Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

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Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

 

 

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Reflections from Advocate Katie Lelito on Managing your Infertility Identity

By Danielle Bucco

DSC_9969Those who are dealing with infertility understand how difficult it can be to decide who they are going to tell. Many want to maintain a level of privacy and only let certain friends and family members in on the news. Others, however, are more vocal about who they tell and explain it to coworkers, distant relatives, or neighbors. It is up to the individuals and couples themselves about what feels right for them and what would be the best decision for their family. Some also choose a third option like Katie Lelito. Katie is able to maintain two different identities, an online identity and a professional identity.

Katie is someone who is really passionate about advocating for infertility and did some great work at the University of Michigan (U-M) when she was a student there. She is very vocal online and in support groups about her story with infertility, however, none of her coworkers knew anything about her struggle to conceive at the time. She specifically wanted to maintain these two different identities because she found it can be much easier to be open online with a stranger as opposed to face to face. Katie only recently decided to break her anonymity by using her name for a few advocacy projects that she has been working on.

One of the ways Katie is active on the issue of infertility is to try and get employers to cover fertility treatments. She petitioned the University of Michigan to change their coverage policies and she was successful. University of Michigan gave all staff and students with grad care $20,000 max lifetime coverage for in vitro fertilization plus $10,000 drug coverage. This was an extremely important step in getting more employers to cover fertility treatments. She was also fortunate enough to bring this issue up with her own employer and was again, rewarded for her effort and passion with another success.

EHW_4856            Katie’s success at U-M was a big turning point for this issue. Many people in the university setting are passionate about many issues, one of them being infertility and how it is viewed in the workplace. Universities are also important because it is a good way to start change. Many people look to them to take the first steps towards certain issues and fertility coverage is no different.

Moving forward, Katie hopes to continue to be an advocate for infertility. She encourages people who want to ask their employers for coverage to talk to her or to read a list of 13 ways to help approach the topic with employers. Approaching an employer about such an important and personal topic can be terrifying but if employers start to accept these coverage ideas, it could help change people’s lives forever. This is only one of the areas that Katie is interested in but she has helped to make a difference in workplaces and is an inspiration to others looking to do the same. You can also learn more from an interview Katie did with Beat Infertility by listening to it here.

Myth – One round of IVF is all it takes to “beat” infertility. 

I was very reluctant to try IVF. Three and a half years into trying to conceive I had endured 5 rounds of Clomid and timed intercourse, 4 IUI hybrid cycles, a diagnostic laparoscopy, and six months of weekly therapy appointments to sort out how I felt about the prospect of using IVF to try to build my family. I had spent months doing research about the procedure, along with even more extensive research about adoption. After much consideration, my husband and I figured that IVF would be the cheapest, fastest, easiest path to parenthood, even though it isn’t any of those things. Assuming it worked.

One in eight couples in America have received a diagnosis of the disease of infertility. Like most Americans needing IVF, our health insurance wouldn’t cover the treatment. We’d have to pay out of pocket. Not only that, the emotional investment can be extremely expensive. We decided that, for us, the best plan would be to try one round of IVF, transfer any resulting embryos, and move on to other options.

I remember when I told my mother-in-law we had decided to give it a try. I was in the dollar aisle of a grocery store talking to her on my cell phone. “That’s good,” she replied. “We know IVF works.” However, while I appreciated her confidence and hoped that it WOULD work for us, I’d done the research and had insight that she didn’t have. Although IVF would give us the best odds we’d ever had of achieving a pregnancy, they were still against us. IVF working was definitely not a sure thing.

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Crib with Medication Boxes by Elizabeth Walker. Mixed media with custom crib by Morgan Shores Woodworking.

As described in this December article from The New York Times, a study out of the University of Bristol and the University of Glasgow in the United Kingdom found that “nearly two-thirds of women undergoing I.V.F. will have a child by the sixth attempt, suggesting that persistence can pay off.”  The out of pocket costs for those cycles? As explained in this article about the same study, published by the Los Angeles Times, “a rough calculation (assuming two attempts at embryo transfer per cycle) would cost up to $132,000”.

These are the remnants of approximately $10,000 worth of medications, needles and syringes I used while undergoing one IVF and two subsequent Frozen Embryo Transfers. What could have resulted in my child, or children, instead resulted in a pile of boxes, bottles and sharps containers that I find hard to discard because they help represent my treatment journey.

These are the remnants of approximately $10,000 worth of medications, needles and syringes I used while undergoing one IVF and two subsequent Frozen Embryo Transfers. What could have resulted in my child, or children, instead resulted in a pile of boxes, bottles and sharps containers that I find hard to discard because they help represent my treatment journey.

THIS is why it’s so important that we advocate for legislation that will help those with infertility build their families. Maria and I will be at Advocacy Day in Washington, D.C. on May 11th, fighting for this cause and we invite you to join us! It’s an amazing, empowering experience, and a place where incredible friendships are made. In fact, Maria and I met at Advocacy Day in 2014.

If you want to learn more, check out this link from RESOLVE: The National Infertility Association. Or feel free to contact us to chat about it at info@artofinfertility.org. If you can’t make the trip, check out this link to learn more about the federal legislation and for easy ways to contact your Senators and Members of Congress to show your support. Another easy way to make a difference is sharing messages about Advocacy Day on social media. You could share this video, for example. Together, we can raise awareness, busting the myth that one IVF treatment is all it takes, and working to improve the treatment coverage that will help those with infertility build their families.

Elizabeth

#IFadvocacy