Reflections on Infertility Advocacy Day: It's NOT for the Faint of Heart... It's for the FULL OF HEART!

Have you ever participated in an event and then revel in the aftermath? Your mind keeps taking you back to the places and people you have met, the conversations you've had, and the connections you've made. Your body may be sore, your feet blistered and aching and you're tired. But your mind is whirling with thoughts, emotions and feelings. That's the way I feel after Infertility Advocacy Day. 

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There is a lot to orchestrate in order to make such an amazing event happen. I'm sure I cannot do justice to the RESOLVE Advocacy committee, headed by our own tireless coordinator, Simmy Bookal. I can imagine what goes on behind the scenes in order to coordinate Advocacy Day: volumes of emails, video training, guest speakers, lodging, State Captains, mentors, registrations, and receptions. RESOLVE works with our legislators and prepares all the materials and constituent letters that we advocates drop off with our Congressmen. I am sure I am barely touching the tip of the iceberg as I share some of what it takes to pull it all together. I think to myself, Advocacy Day is NOT for the faint of heart. 

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RESOLVE partners with ASRM, The American Society of Reproductive Medicine. Together they offer an afternoon training session on the day before before Advocacy Day. This training is invaluable to me because it helps me better understand the issues that we will be lobbying in Congress. Doctors, medical professionals, pharmaceutical representatives and lawmakers come together to provide a four-and-a-half hour academy in order to prepare us for our day on Capitol Hill. They are critical advocates since they work directly with the patients going through infertility. I look around the room and see people who have completed years and years of schooling and training and have worked extraordinarily hard to start their careers. Advocacy Day is NOT for the faint of heart

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My husband and I are one of the few regular advocates who attended the ASRM Academy because most are still traveling. My husband saves vacation days and we arrive two days in advance so we don't miss one moment of this incredible training. I gain invaluable insights, such as what special kind of language to use (and what not to use). For example, I learned that pitching for the preservation of fertility is a better ask than discussing "personhood," which can be a hot topic for some Congressmen. One of my other take aways from ASRM is how important it is for advocates to build a relationship with our individual state representatives. After Memorial Day, I will be calling my local representative to set up an appointment with him. I want to be his "go-to-gal" if he has any questions about how infertility affects one in eight couples. To me, Advocacy Day isn't just one day. It is a constant, burning mission of mine each and every day of my life.  It's NOT for the faint of heart! 

 Photo of my Representative from Brighton, MI, Mike Bishop. 

Photo of my Representative from Brighton, MI, Mike Bishop. 

On the morning of May 23rd, the Advocacy Day team rises before the crack of dawn and is at a dead run all day. Even though RESOLVE is headquartered in McLean, Virginia, just a few miles from our nation's capitol, the RESOLVE staff members stay at a hotel in Washington D.C. They have to make sure that everything is ready to go for the BIG day and can't risk being late. They arrive by 7:00 AM to prepare for the 200 advocates from across the nation who will attend the morning training. They are set up, ready to go, and coordinate a smooth check in process and the distribution of Advocacy Day materials. They have previously marked tables to ensure that each delegate finds their respective state delegation. They keep a list of cell phone numbers for everyone in case of emergency throughout the day. They are so thoroughly prepared that they make Advocacy Day a breeze... for even first time advocates.

 Fellow advocates attend a morning training before their day on Capitol Hill.

Fellow advocates attend a morning training before their day on Capitol Hill.

In addition, every powerpoint is delivered without a hitch. Laughter, excitement and a buzz fills the room as advocates enjoy a hearty breakfast before we set for the day on Capitol Hill. The enthusiasm in the training session reaches its peak when Barb Collura, president and CEO of RESOLVE says she has an important and special SURPRISE announcement. I see excitement spreading all over Barb's face as she starts a pre-recorded video of the dynamic 75-year old Congresswoman, Rosa DeLauro, whose spunk is streaked by the purple highlights in her hair! Spontaneously, the room erupts with applause and everyone stands for an ovation after hearing DeLauro announce the new Access to Infertility Treatment and Care bill, which is so new it hasn't even received a number yet! This long overdue bill proposes IVF coverage for all those affected by infertility! In keeping with the unbelievable attention to detail, yellow fliers are immediately distributed to everyone in the room so we can have the information we need to share with our Senators and Representatives. This absolutely has to be the best legislation for infertility patients EVER! I marvel at the idea of infertility funding for all those affected by this devastating disease and dream of the day when we can make this bill become the law!  I plan to come back each and every year until it has been passed! Advocacy Day is not for the faint of heart! 

 Congresswoman Rosa DeLauro from Connecticut announces the Access to Infertility and Care Act.

Congresswoman Rosa DeLauro from Connecticut announces the Access to Infertility and Care Act.

So much has happened in the last 36 hours. But the time has come for us to go our separate ways and make our voices heard to our Senators and Representatives. We have been trained and know what we must do to discuss our legislative agenda. 

 This is MY copy of the Legislative Agenda. You can see my notes at the bottom when we learned about the brand new  Access to Infertility Treatment and Care Act.

This is MY copy of the Legislative Agenda. You can see my notes at the bottom when we learned about the brand new Access to Infertility Treatment and Care Act.

  •  Women Veterans and Families Health Services Act
  • The Adoption Tax Credit Refundability Act  
  • PCOS Awareness Month
  • Medial Research Funding 
  • And just today the new Access for Infertility Treatment and Care Act.

As I was walking out of the conference room, a flood of thoughts overcame me. What did it take for all the amazing advocates in the room to be able to come to Advocacy Day? It's enough to make your head spin. Hundreds of people came from all over the United States to arrive in Washington D.C. in time to be a part of this movement. Everyone has lives and they have a lot to juggle: jobs, responsibilities, treatment schedules, baby sitters, dog sitters, home duties, and travel. Some drive, others fly and last year a woman even rode her bike all the way from Chicago to participate in Advocacy Day.

This year, torrential rains made it nearly impossible for us to get to the welcome reception in time. Since my husband and I drove to Advocacy Day, after ASRM we found ourselves smack in the middle of rush hour. Construction, one way streets, unfamiliarity with local drivers, miscalculated GPS directions, getting lost, and getting stuck in the presidential motorcade added to the chaos of the evening. Once we were within a few blocks of the reception, I got out of the car and walked the rest of the way in the pouring rain, leaving my husband to find a parking spot.

 Dripping wet, late and exhausted... but smiling nevertheless because it's such a privilege to be an advocate. 

Dripping wet, late and exhausted... but smiling nevertheless because it's such a privilege to be an advocate. 

On the morning of Advocacy Day, we were up before the crack of dawn and left my friends house in Fairfax, VA by 6:15 AM. (I used to teach elementary school in Virginia and still stay in touch with my friend from my teaching days, so my husband and I stayed with her on the outskirts of the city.) The morning rush hour was CRAZY!!! It took us nearly 2 hours to drive to the training. We were late AGAIN and my "fun meter" was pegged. Have I told you how much I HATE being late? Next year, I'm going to stay in the hotel for sure, I thought to myself. Yes, Advocacy Day is NOT for the faint of heart. 

 The view from our car in the middle of morning rush hour on our way to Infertility Advocacy Day.

The view from our car in the middle of morning rush hour on our way to Infertility Advocacy Day.

No matter how stressful it is for those who advocate and those who organize Advocacy Day, it is all so worth it! Everyone of us who attends has his or her own personal reason for wanting to make a difference. You may be wondering why I want to advocate? When I was in the thick of my battle with infertility, I was too emotionally broken to be a voice. Infertility was overwhelming; I wasn't emotionally strong enough at the time to travel to D. C. and talk about infertility. RESOLVE and my fellow infertility warriors were my lifeline at the time, and now I want to give back to the infertility community. Currently, I am a RESOLVE support group leader. I advocate for the men and women who are in the thick of their battle today. Some of them may not have the means, the vacation time or the ability to travel to D.C. as an advocate. It is my honor and privilege to hand-deliver their constituent letters to our Congressmen. 

 I delivered dozens of letters from people in the state of Michigan, but this one from Marissa Holmes, one of the women I lead in my RESOLVE support group, touched me to the core of my being. 

I delivered dozens of letters from people in the state of Michigan, but this one from Marissa Holmes, one of the women I lead in my RESOLVE support group, touched me to the core of my being. 

Most of the advocates in attendance have struggled with infertility. None of us got our first choice when it came to building our families. Some of us have resolved our infertility and others are still in the ongoing battle of fighting for parenthood. Each and every advocate has a story to tell. My husband and I struggled with "unexplained infertility" for a decade of my life. I had 40 embryos transferred and endured seven IVF's in order to conceive our one and only "miracle son."  My husband served in the US Navy for twenty six years. His service to our country made our attempts at IVF incredibly difficult, because he was frequently deployed for six months at a time. He attends Advocacy Day to share the man's perspective and to advocate for the wounded vets who have selflessly served and have suffered catastrophic injuries that have left them infertile. If you take the time to talk to any of any of the advocates, you will be moved to tears.

 My husband and I eagerly awaiting our meeting in front of Senator Gary Peter's office.

My husband and I eagerly awaiting our meeting in front of Senator Gary Peter's office.

It is amazing to see the resilience, perseverance and passion of fellow advocates. We all want to be a part of this movement to shine a light on the path of family building and make it easier for those coming behind us. We don't want to see anyone else have to deal with the struggles that we have had. Not only did we fight for our own resolutions, but we fight for those who are trying to reach theirs. We realize... more than most... the miracle of life. And we want to alter our relationship with the dreaded disease. There is something so empowering about turning adversity into action. Advocacy Day is all about passion, commitment and coming together to make change. It's about blazing the trail for others who don't yet even know that they will struggle to build their families. It's about putting our heads together and coming up with a plan to share our stories with our lawmakers so that the collective voices of the infertility community can be heard. It's about making a difference! We are people who see the value in pro-family and want others to have a fair chance at loving a child of their very own. We are people on a mission to help make their dreams become a reality. That is what I call LOVE!  And although Advocacy Day has its fair share of hard work, challenges and obstacles to overcome, we advocates put our heart and soul into it and wouldn't have it any other way. Advocacy Day: It's not for the faint of heart... it's for the FULL of HEART! And this tired... yet completely inspired advocate... never wants to miss another one! 

(NOTE: Please click on the images above to see the entire gallery.)

In-Fertility & Friendship, 

Sue 

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