Fertility Blog by Illume Fertility

Raising Our Voices for Infertility Awareness | Advocacy Day 2021

Written by Lisa Rosenthal | July 14, 2021

Every person deserves to have the opportunity to build a family. Infertility is a reproductive disease, and like any other disease, it should be covered by insurance. While there are an increasing number of grants out there, providing funds for the people in 31 states that have no state-mandated coverage (19 states do have limited mandated coverage, including Connecticut), would we expect someone with cardiac or pulmonary disease to apply and hope for a grant for medical treatment? Or would we expect that the medical coverage that we pay for would instead provide coverage for our medical problem? 

With 1 in 8 people affected by fertility issues (similar numbers to those who are challenged by breast cancer), we do not have to face these discriminatory exclusions by ourselves. When asked, many legislators will tell you that their families are among the most important aspects of their lives. We stand together, to tell our legislators that our families are as important to us as theirs are to them.

What is Advocacy Day?

Each year, RESOLVE: The National Infertility Association in partnership with the American Society for Reproductive Medicine (ASRM) coordinates every aspect of Advocacy Day, which is a nationwide event. Advocates, members of the medical community, families affected by infertility, and others come together to raise their voices in support of infertility awareness and to push for legislative change. 

The great news? You don't have to be a seasoned advocate to participate in Advocacy Day - RESOLVE provides extensive training, comprehensive materials, and ample opportunities to have your questions answered about how to speak to legislators, and of course, what to say. This year, over 520 volunteer advocates spoke to legislators' offices in every single state in the United States! 

RMA of Connecticut staff participates in previous Advocacy Day initiatives (2016-2019)

Who participated this year?

Our 2021 volunteer advocates included patients, who spoke passionately about the frustrations of their journey to conceive; Katie Doyle, from ConceiveAbilities, Nathalie Carpenter, founder of Fertilust, Dr. Spencer Richlin, board-certified Reproductive Endocrinologist from Reproductive Medicine Associates of Connecticut, Andrologist Anastasia Kamais (also from RMA of CT), Evelyn Neuber, PhD, HCLD, Clinical Research Coordinator at the Center for Advanced Reproductive Services (CARS), Brian Miller, PhD from TMRW and long time advocate, Jennifer Sunderman, long time RESOLVE volunteer and State Captain in 2020, and Taylor Van Antwerp, two time RESOLVE Advocacy Day volunteer.

Lisa Rosenthal and fellow infertility advocates attend Advocacy Day initiatives (2016-2019)

A Note from Dr. Spencer Richlin on Advocacy Day

Dr. Richlin gets involved in advocacy efforts because he sees how these barriers to care affect patients every single day. Here's more on why he's passionate about advocacy:

"It’s for the patients - the patients that I know that I can help, but who don’t have a way to afford treatment because their insurance company specifically rules out fertility treatment and they don’t qualify for the state mandate. That’s heartbreaking to me.

RMA of Connecticut has unambiguously supported advocacy efforts for over a decade, including having a specific member of our team, Lisa Rosenthal, as our Patient Advocate.  

In addition, becoming more familiar with the political landscape, learning about the bills and issues that are needed for our patients and (our program) to help fulfill family-building dreams informs me of the bigger picture of reproductive health.

And speaking to the legislators and their staff gives me an opportunity to share (from a fertility doctor's point of view) what problems their constituents are facing and what they can do about it."

How can I afford fertility treatment without insurance?

Hear From Our 2021 Advocacy Day Volunteers

Curious how participating in advocacy efforts affects you as a volunteer? Check out some of our amazing volunteers' experiences during 2021 Advocacy Day below:

“Representing the state of Connecticut during RESOLVE's Advocacy Day is both a privilege and honor. I feel it is my responsibility to advocate for access to fertility treatment and family-building rights, as my children were born from donor egg IVF cycles. I am proud of what we accomplished with our legislators this year and excited to continue our efforts going forward.” - Jennifer Sunderman

“This was my first Advocacy Day and I was so proud to be part of something that is so important. This is legislation that has the potential to change so many lives.” - Anastasia Kamais, RMA of Connecticut

“It’s exhilarating to know that our discussions during Resolve’s Advocacy Day create the foundation for meaningful change, particularly in highlighting the need for access to quality care and funds in supporting a path to parenthood for families.” - Nathalie Carpenter, @fertilust 

“Participating in Advocacy Day has empowered me to share my story and raise awareness about infertility. It has also helped me come to terms with the fact that I am not alone in my struggles to grow my family. I am fortunate to live in a state where our representatives understand and sympathize with the devastating journey many of us have to endure as we strive to complete our families.” - Amy Divaraniya, OOVA Life

“Advocacy Day was an amazing opportunity for people with personal and professional experience with infertility to fight for all those who need help building a family. I fall into both categories - I wouldn't be a mom today without access to care, and my career's purpose is to help others fulfill their family-building dreams. Connecticut residents are lucky to have had such fierce advocates speaking on their behalf, and I am blessed to have been one of them." - Katie Doyle, ConceiveAbilities

Which bills are we asking our legislators to pass? 

Each of these bills supports pro-family legislation - recognizing that there are many ways to build a family and equally as many ways to support those efforts. Our government represents us, and we elect our officials - so when we tell them, with our letters, phone calls, and meetings, that these bills are important to us, they listen. As constituents, all of our voices are important. On Advocacy Day, we explain to our legislators why these family-building issues should be at the top of their list to co-sponsor.

RMA of Connecticut staff participates in previous Advocacy Day initiatives (2016-2019)

We spoke to the legislators and their staff, encouraging them to co-sponsor four bills, but there were actually nine items on the list of pro-family-building legislation. Below, each bill is listed. (If you're curious: an “S” in front of the bill number means it’s a Senate bill, while an “H.R.” means that it’s a bill number for the House of Representatives.)

  1. The Adoption Tax Credit (ATC) Refundability Act of 2021 (S 1156 and H.R. 3031)
  2. Veterans Families Health Services Act of 2021 (S.1280 and H.R.2734)
  3. Access to Infertility Treatment and Care Act
  4. Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021 (H.R. 2007)
  5. Polycystic Ovary Syndrome (PCOS) Awareness Month Resolution
  6. Infertility Awareness Resolution (H.Res.338)
  7. Every Child Deserves a Family Act
  8. Veterans Infertility Treatment Act (H.R. 1957)
  9. Increased Medical Research Funding, FY 2022 Appropriations

To learn more about each of the above proposed pieces of legislation, visit RESOLVE

Everyone Deserves Access to Fertility Care & Treatment

We Nutmeggers are proud that it is Connecticut Congresswoman Rosa DeLauro of the 3rd District who is the House of Representatives sponsor of the “Access to Infertility Treatment and Care Act," (along with New Jersey Senator Cory Booker for the Senate).

Whatever state you live in, please encourage your Congressperson to follow her lead in recognizing the importance of a federal law mandating coverage for infertility treatment. This would reduce the need for a battle on a state-by-state basis and ensure that regardless of what state you live in or move to, that you will be able to access appropriate fertility treatment services. 

For those of us who live in Connecticut, there is a more than reasonable expectation that the other four Congresspeople - Congressman Jim Himes, Congressman John B. Larson, Congressman Joe Courtney, and Congresswoman Jahana Hayes - would join their fellow Congresswoman DeLauro and sign on as co-sponsors.

Our Senators, Richard Blumenthal and Chris Murphy are also very friendly to the family-building cause and need to know that this request for co-sponsors is important to you, their constituents.  

Letters in support of Advocacy Day initiatives & Crystal & Tyler Wilson of IVF 4 Vets (2016-2019)

How can I get involved in infertility advocacy?

If you are passionate about pro-family legislation, reproductive autonomy and family building and want to help impact change, it's easier than you might think! It only takes a few minutes to send a letter to your Congressperson, encouraging them to sign on as co-sponsors of these important bills.

Don’t know who your Congressperson or Senator is? A lot of us don’t, so don't worry! RESOLVE makes it easy. 

Click below to send a pre-filled letter to your representative:

You can also call your legislators (Congresspeople and Senators) and tell their staff what bills you’d like them to support and why. 

Interested in doing more? In Connecticut, we’re excited to announce that we have a core group of people that will be working year-round on advocacy. This will still be a nominal amount of time needed (approximately 1-3 hours per month). Please get in touch with me directly, I’m happy to discuss the different roles that you could take on.

What are some other ways to help make a change?

The Affordable Families Coalition is a new and dedicated group started over a year ago, committed to taking incremental steps towards comprehensive fertility coverage for all people. The Affordable Families Coalition is led by a passionate team of experts and advocates in the fertility field: founder Mario Leigh, Davina Fankhauser of Fertility Within Reach, RMA of Connecticut's Dr. Mark Leondires (serving as our medical expert), and myself.

This year, we’ve worked on a bill that redefines infertility, to include all those who need reproductive medical services, particularly single people and the LGBTQIA+ community.

This coalition is gearing up to present the bill for the 2022 session. Interested in helping pass this life-changing family-building legislation? Join us and get involved!

PCOS Awareness Month

September is coming up fast, so let's talk about the PCOS Awareness Month resolution. This is a resolution that many of our legislators have co-sponsored in the past and which we’d like to see passed in 2021. We're also asking Governor Lamont to turn the Capitol teal this year in honor of the many people challenged by Polycystic Ovary Syndrome (PCOS).

Senator Corey Booker, Dr. Shaun Williams, and other advocates at previous Advocacy Day (2016-2019).

Wouldn’t it feel amazing to see the Connecticut State Capitol teal for a day? 

All you have to do is ask your Congressperson to sign this bill: H.Res.471 — 117th Congress (2021-2022). 

Thanks to PCOS Challenge, (Sasha Ottey and William Patterson) for designating September 1 as PCOS Awareness Day. And thank you to Congressman John B. Larson and Congresswoman Jahana Hayes for signing this resolution! 

Celebrating Advocacy Wins

Connecticut has had very good reason to celebrate this year.

We passed the Connecticut Parentage Act! Because of the tireless efforts of CT State Representative Jeff Currey, Resolve New England, Patience Crozier of GLAD - Legal Advocates and Defenders, Doug NeJame and the Yale Law School, along with patient advocate Stephanie Ocasio-Gonzalez (and her wife, Denise), and many others, on May 25, 2021, Governor Ned Lamont signed the Connecticut Parentage Act into law.

What is the Connecticut Parentage Act? "This legislation ensures that all children have equal access to the security of a legal parent-child relationship, regardless of their parents’ sexual orientation or gender. In addition, the act recognizes that all children are deserving of the same protection that legal parentage provides by making it easier to establish parentage at birth, regardless of whether the child is born to married parents. It also provides important protections for intended parents of children who are born through assisted reproduction.”

If you’re interested in watching and hearing the full testimony, here it is in its entirety

Why does advocacy matter so much to me?

Ever since experiencing the pain, challenges and triumphs of my own fertility journey, advocating for others has become my life's work and passion. I want to thank Dr. Spencer Richlin and RMA of Connecticut - this is a team effort. Without the support of everyone at RMA of CT, I could not do this work. (Special shout out to our CEO, Robin Mangieri!)

Finally, know you are not alone. I know it may feel that way, but we are here for you. And we are happy to raise our voices when you feel you can’t. Maybe someday you will join us. But until then, know that we are out here, working hard to make sure that your family-building journey can be as problem-free as possible and that you have access to the healthcare that you deserve.

I welcome you to reach out to me directly if you are looking for ways to get involved in this advocacy work or have additional questions. I'd love to hear from you!