Create Change Blog!

A blog about how you can best prepare for Advocacy Day and become a strong advocate all year round.

By: Annie Kuo and Kelly Garrity
2019 Advocacy Day Volunteer Training Coordinators

Welcome!

Annie And Kelly at Advocacy Day

Over 200 advocates representing the voices and stories of the U.S. infertility community will come to Washington D.C. Whether it is your first or eleventh year at Advocacy Day, congratulations on taking this mighty step! An in-person meeting is high-impact and high-touch. It ranks #1 on the spectrum of advocacy involvement and impact. That’s why attending Advocacy Day is so huge.

As a constituent with the power to vote, your story helps legislation get passed. The more involved we all get, the greater impact we have as a community. Showing up for our fellow constituents back home, we will raise lawmakers’ awareness about our need for financial relief and increased access to family-building options. Read the Create Change blog to learn how to make the most of this exciting day.

The first minute of this video explains how patient advocates matter! Your story helps lawmakers learn, understand, and care about the issues and how their policymaking affects your health, well-being, and quality of life. Your individual voice amplifies the legislative agenda established by RESOLVE, the American Society for Reproductive Medicine (ASRM), and our Congressional champions.

As you prepare to come deliver these messages, it is important to reflect on your story, research your lawmakers’ backgrounds, and get familiar with the issues on RESOLVE’s legislative agenda. Over the coming weeks, we will show you how on the Create Change Blog.

The Issues- 2020

These are “the asks” of our 2020 legislative agenda, which you can also view at resolve.org/infertilityissues. None of the issues have been scored or in hearings in this session of Congress. The ask for NIH medical research is through the standard Appropriations process, and while there is a bill number, it is not needed for reference as every office knows the NIH is funded through the Appropriation bill for the Department of Health and Human Services, or HHS.

Co-Sponsor Access to Infertility Treatment and Care Act, S 1461 and HR 2803

  • Will provide those who receive their healthcare through government-sponsored health plans, including TRICARE, the VA, the Federal Employee Health Benefits Program and others, to have coverage for infertility services.
  • Provides access to vital fertility preservation services for those, like cancer patients, who are at risk of infertility due to medical treatments such as chemotherapy and surgery.

Co-Sponsor Women Veterans and Families Health Services Act, S 319 and HR 955

  • Will permanently allow Veterans with a service-connected injury causing infertility to access IVF medical treatments, which the Department of Veterans Affairs is currently offering via a temporary appropriation.
  • The legislation will eliminate unfair restrictions on those eligible for the benefit at both the VA and under TRICARE.
  • Allows for cryopreservation of gametes pre-deployment and at time of injury.
  • Provides for adoption assistance.

Co-Sponsor Every Child Deserves a Family Act

  • Will increase the number of foster and adoptive homes by banning discrimination against foster and adoptive parents, families of origin, and foster youth based on sex, sexual orientation, gender identity, marital status, and religion. Will improve services to the 20% of foster youth who identify as LGBTQ.

Co-Sponsor PCOS Awareness Month Resolution, H Res 146

  • Designates September as PCOS Awareness Month and recognizes the need for more education and research on PCOS.
  • PCOS is a life-long health condition that impacts 5 to 10 million women and girls in the U.S. and is a leading cause of infertility.

Medical Research Funding, FY 2021 Appropriations

  • We support sustained support for the NIH, and specifically the National Institute of Child Health and Human Development (NICHD), where most research related to reproductive health and infertility is supported.
  • We request a funding level of $1.6 billion for FY 2021 for NICHD.

Co-Sponsor The Adoption Tax Credit Refundability Act, S.1652 AND H.R. 2965

  • The Adoption Tax Credit (ATC) advances the important public goal of encouraging adoptions, especially of children with special needs. That is why Congress has supported the bipartisan ATC since 1997.
  • The adoption tax credit needs to be made refundable so that low-to moderate-income families can afford to adopt a child.

New in 2019

Are you a first-time attendee or an advocate returning after years away? New this year, RESOLVE will hold an in-person training for first-time advocates. This session will be held the day before Advocacy Day and include plenty of time to answer any questions you may have.

For everyone else, and for first-timers who can’t make it in early, we are once again offering pre-Hill Day training so that you can get ready at home. We are excited to announce that this year, we are rolling out new forms of training content, and we’re joining RESOLVE in their training webinar. Make sure to prepare with these!

“We” are Training Co-Chairs Annie Kuo and Kelly Garrity and new committee member Joe Cody. We look forward to getting you ready and hope you will reach out anytime you have questions.

Back for the third year…

Annie KuoAnnie Kuo from Seattle, Washington: Annie is a RESOLVE Ambassador who has hosted a peer-led support group for 4 years. Her volunteerism and communications background led to her current role overseeing OBGYN public relations for UW Medicine. You can read more about Annie’s work in the Seattle infertility community here.

 

 

Kelly Garrity Headshot 200 X200Kelly Garrity from Arlington, Virginia: Kelly has been a RESOLVE advocate at several Hill days, serving as a state mentor multiple times. She is excited to meld her professional side, working in a health advocacy organization, with her personal infertility journey and equip fellow advocates with the tools to create change.

 

And introducing…

Joe CodyJoe Cody from Silver Spring, Maryland: Joe and his wife came to Infertility Advocacy Day in 2018 and this year, Joe is helping us with advocacy training. His experience includes creating an Introduction to Advocacy video for a medical specialty society. He currently helps draft materials and primers for attendees of his employer’s Advocacy Day. Joe really emphasizes storytelling as the main driver of advocacy. He says, “The facts are available to staff and Members of Congress, but stories from constituents and experts moves policy and drives support.”

Thanks for being a great advocate already by being here!

The Issues - 2019

These are “the asks” of our 2019 legislative agenda, which you can also view at resolve.org/infertilityissues. None of the issues have been scored or in hearings in this session of Congress. The ask for NIH medical research is through the standard Appropriations process, and while there is a bill number, it is not needed for reference as every office knows the NIH is funded through the Appropriation bill for the Department of Health and Human Services, or HHS.

Co-Sponsor Access to Infertility Treatment and Care Act, S 1461 and HR 2803

  • Will provide those who receive their healthcare through government-sponsored health plans, including TRICARE, the VA, the Federal Employee Health Benefits Program and others, to have coverage for infertility services.
  • Provides access to vital fertility preservation services for those, like cancer patients, who are at risk of infertility due to medical treatments such as chemotherapy and surgery.

To co-sponsor, contact Sen. Cory Booker: 202.224.3324 or Rep. Rosa DeLauro: Caitlin.Peruccio@mail.house.gov.

Co-Sponsor Women Veterans and Families Health Services Act, S 319 and HR 955

  • Will permanently allow Veterans with a service-connected injury causing infertility to access IVF medical treatments, which the Department of Veterans Affairs is currently offering via a temporary appropriation.
  • The legislation will eliminate unfair restrictions on those eligible for the benefit at both the VA and under TRICARE.
  • Allows for cryopreservation of gametes pre-deployment and at time of injury.
  • Provides for adoption assistance.

To co-sponsor contact Sen. Patty Murray: Ryan_Pettit@murray.senate.gov or Rep. Rick Larsen: Jonathan.Golden@mail.house.gov.

Co-Sponsor Every Child Deserves a Family Act

    • Will increase the number of foster and adoptive homes by banning discrimination against foster and adoptive parents, families of origin, and foster youth based on sex, sexual orientation, gender identity, marital status, and religion. Will improve services to the 20% of foster youth who identify as LGBTQ.

To co-sponsor, contact Sen. Kirsten Gillibrand: Alexandra_Lowe-Server@gillibrand.senate.gov or Rep. John Lewis: William.feeney@mail.house.gov.

Co-Sponsor PCOS Awareness Month Resolution, H Res 146

  • Designates September as PCOS Awareness Month and recognizes the need for more education and research on PCOS.
  • PCOS is a life-long health condition that impacts 5 to 10 million women and girls in the U.S. and is a leading cause of infertility.

To co-sponsor, contact Sen. David Perdue: Charlotte_Kaye@perdue.senate.gov or Rep. David Scott: ijeoma.egekeze@mail.house.gov.

Medical Research Funding, FY 2020 Appropriations

  • We support sustained support for the NIH, and specifically the National Institute of Child Health and Human Development (NICHD), where most research related to reproductive health and infertility is supported.
  • We request a funding level of $1.6 billion for FY 2020 for NICHD.

The power of your personal story - 2019

Your Story MattersThere isn’t a more powerful message than an advocate telling their personal story, sharing the obstacles you have faced and the continued strength you or loved ones have exhibited. Past RESOLVE advocates will tell you the most impactful experiences they have from Advocacy Day involve the power of a personal story.

When telling your story, it is important to remember several things:

  1. Be truthful. Your experiences are personal and powerful. There is no need to embellish in order to have an impact. An authentic story is more meaningful than anything else you could ever share.
  2. Be concise. Unfortunately, our time in these meetings is limited, and you will likely be one of several in your state/district delegation, so it is important to make your words count!
  3. Amplify the ask. During Advocacy Day, RESOLVE advocates are given talking points and specific requests for Congressional staff. Use your personal experiences to tie back to the overall message.
  4. Be specific. Everyone’s journey is different but it is important to emphasize the specific experiences you and your loved ones have had. Explain the costs of infertility treatment, financially and emotionally, because the Member of Congress or their staff may not understand their true impact.
  5. Have fun! Advocacy Day is a special time. Not only do you have the chance to have an impact on policies that can impact millions, you are creating community with other advocates there to make a difference. All of us will be delivering the message that all Americans who want to build their families, but are having challenges along the way, should be supported.

RESOLVE and ASRM’s message is made more powerful by you and your stories. Share your story with loved ones and ask them to join you on Advocacy Day, amplifying our strength as a community as we all work toward increasing access to family-building options.

Crafting Your Elevator Pitch - 2019

Each one of you has walked a different path on your way to becoming an advocate – the details make up YOUR STORY.

Sharing your personal story with lawmakers will be an option on Advocacy Day for one or two of you from each state and district. Imagine an elevator ride with your lawmaker in which you have no more than two minutes to share each selected story. Here is a worksheet to help you craft your elevator pitch.

It is a good idea to come prepared with your “elevator pitch” so that it can be easily decided which stories will be shared with your lawmaker. Also, this will make getting to know other advocates easy, speedy, and fun!

For “extra credit” on crafting your message, check out this video from Rare Disease Week.

Here are three example elevator pitches:

Annie:
I’m from Shoreline, Washington. I got a primary infertility diagnosis 9 years ago and have experienced both pregnancy loss and a lack of success with fertility treatment. After my only child was born, multiple attempts to preserve my fertility were not fruitful due to biological limits (in my case, a family history of early menopause). Since then I have explored other ways to build a family, but I’ve been stalled due to financial roadblocks.

For over four years, I have hosted monthly support groups in Seattle and gotten to know hundreds of fertility patients. To afford treatment or adoption, many of them take out second mortgages, bank loans, and borrow from friends and family, sometimes spending the amount of a college fund before a child is even born. Infertility doesn’t typically have a quick fix – IVF, for example, should be viewed as a course of treatment, with no guarantees of success.

Often, it must be repeated, accumulating a financial burden. Adoption is also expensive and there are no guarantees. Ideally, our government would fully support the 1 in 8 Americans suffering infertility by increasing access to care and offering financial relief for pro-family pursuits.

Kelly:
I’m from Arlington, Virginia and have been in the area more than a decade. I have been diagnosed with infertility for 6 years and in that time suffered 3 miscarriages and 1 stillbirth. With my history, I was advised to go directly to IVF with genetic testing.

One cycle with meds involves countless blood draws, stomach and muscular shots, and a cost upward of $8,000 – often not covered by insurance. At a minimum, infertility affects 1 in 8 people. Think about all of the people in your life – you know at least one person with infertility.

Joe:
I am from Silver Spring, Maryland and my wife and I have been trying to start our family for 3 years. After struggling to conceive naturally, we have undergone multiple rounds of IVF. While we are currently still on our journey and have been lucky enough to have the emotional and financial support from our family and friends, not every person has these resources available and are forced to make tough choices.

Access to affordable care or family building options is essential to anyone struggling with infertility. 1 in 8 people will struggle with infertility so while we may feel like we are alone throughout the process, RESOLVE is working to amplify our voices by advocating for expanded, affordable access to care.

Mock Meeting Audio Recording - 2019

We’ve recorded a condensed, 6-minute audio segment simulating the conversation you will have with your Members of Congress on Capitol Hill. We hope these words in your ears paint a helpful picture!

You will have more time in your congressional meeting, but it will still be a very compact timeframe– about 15-20 minutes total.

Notice that in the audio segment, there is a staffer representing the lawmaker, and two advocates in the delegation. You may be coming alone (though RESOLVE will send someone to accompany you) or you may have a much larger delegation. If your delegation has several members, you can use your elevator pitches with each other to decide — among those willing — who will share their stories at the appointments.

Each patient advocate ties their personal story to the legislative agenda. If your delegation includes a fertility professional, they can tie their experiences serving a volume of patients to a legislative ask about access to care or financial relief.

There are a few details the short demo does not include which we recommend for your in-person meetings:

Please note that additional asks regarding PCOS Awareness Month (for the House) and the Every Child Deserves a Family Act (for both the House and Senate) are not in the mock meeting audio, but they are part of the legislative agenda.

Day of Advocacy Day Materials - Audio Recording - 2019

If you’re crunched for time to read the Day of Advocacy Day Materials before you arrive on the Hill, let us read them to you! Feel free to listen to these as you travel, jog, pack, and get ready for work in the morning.

On these five brief audio recordings, Annie is joined by Michelle Li, a broadcast news anchor and reporter from the NBC affiliate KING5 News in Seattle. Some of you from Wisconsin, the Coastal Carolinas, and Southwest Missouri may recognize her because she was the primary evening news anchor there for many years. Michelle and her husband experienced unexplained infertility for 9 years before the arrival of their son via IVF. She has helped local RESOLVE raise awareness through TV on multiple occasions. Currently, Michelle serves as a host for Take 5, an innovative, interactive news show on weekday afternoons. Watch Michelle use her platform for advocacy here, here and here.

Thank you to ALL of our advocates!

Constituent Letters, Training Webinar and Homework - 2019

We are one week away from Advocacy Day! Are you getting excited? If you are nervous, you can settle some of the nerves by getting prepared and making more room for the excitement. 🙂

Today we want to talk about constituent letters, advocate training webinars, and homework to get you ready. If you need more direction, reference the blog posts, “Google to the Rescue” and “Make It Personal,” in the 2018 tabs.

The Significance Of Constituent Letters

TBD is the deadline for collecting constituent letters to our respective Members of Congress. These letters can be from you or anyone you know who supports family-building for the infertility community. They will be printed and hand delivered to every congressional office that is represented either through an advocate voice or signature. Each signature typically represents 20 constituents, so legislative offices truly log and pay attention to them.

Letters help us amplify our message. When we “paper Congress,” we are leaving a message that constituents back home want what we are asking for and support RESOLVE and ASRM’s legislative agenda.

Please continue to share the link! The fact that you are coming in-person to meet with your lawmakers is the most high-impact thing you could do. Letters are just the cherry on top.

E-mail and post the links below and watch our message go viral.
http://tinyurl.com/2019ADletter (case-sensitive)

You can also point people to the RESOLVE website and have them find the letter on the landing page for Advocacy Day.
http://www.resolve.org/advocacyday

Training

On May 16th, you will receive print copies of several day of training materials. However, you can review them now since they are already uploaded on the Advocacy Day website. You will be receiving a lot of paper that morning, so read what you can now!

Listen to a recording of the Training Webinars – —an excellent way to get prepared.

Homework

  1. Find your two U.S. Senators: www.senate.gov
  2. Find your U.S. Representative: www.house.gov
  3. Read their Bios & check out what they look like! Would you recognize your Members of Congress if they walked by or stood next to you in the elevator?
  4. Find out what Committees they are on.

Our Key Committees are:

House: Ways and Means, Veterans Affairs, Armed Services, Oversight, Appropriations, Energy & Commerce

Senate: Finance, Veterans Affairs, Armed Services, Appropriations, and the Health, Education, Labor & Pensions (HELP) Committee

Please keep checking back here on the blog all the way through Advocacy Day. We are recording some special content for you, coming soon!

Know Before You Go - Working as a State Delegation, Meeting with Your Lawmaker, and Legislative Lingo - 2019

Listen to presentations about working as a state legislation, meeting with your lawmaker and legislative lingo.

https://www.youtube.com/watch?v=xgtAQpFv9UI&t=53s 

After Advocacy Day: Ideas for Further Engagement - 2019

We hope Advocacy Day has inspired you to stay engaged in fighting for family-building legislation. Following up with your lawmaker is an important advocacy strategy for staying top of mind and keeping traction on issues.

*RESOLVE has a template letter you may use. You can also write your own. For the larger groups (5 or more advocates in a meeting), we highly recommend that one person is designated to send the thank you note on behalf of everyone and list the names of all the advocates and cities in your state delegation.

*Note: New Senate Bill number for co-sponsorship requests!

Here are more tips on how to stay on top of issues and your lawmakers:

  1. Connect to the Advocacy Day attendees group on Facebook. This page is a great way to tap into the spirit of our advocate community and stay updated on the latest news and legislative action steps.
  2. Look up Town Hall schedules and add them to personal calendars. Town Hall Project is a great site to bookmark and refer to throughout the year.
  3. Follow your lawmakers on social media channels if you haven’t yet. Places to check include Twitter, Facebook, Instagram, and Snapchat. Simply do a search by your lawmaker’s name.
  4. Follow proposed legislation on congress.gov. You can track co-sponsors by searching the bill or resolution number. The legislation we advocated for in 2019 is listed at the very bottom of this post.
  5. When your lawmakers take pertinent action like co-sponsoring a bill or signing on to legislation that RESOLVE supports, send a thank you via social media and/or e-mail.
  6. Invite your lawmaker and their staff to any infertility community events such as Walk of Hope for their education and exposure to our issues.
  7. Follow-up each quarter to your lawmaker’s DC office when there is something to talk about. Set up a calendar alert to remind you.
  8. Identify local legislative offices to connect to and request a quarterly meeting with lawmaker or staff on their visits home. You can also attend town halls. This step is for the go-getters!

We hope these activities will keep you busy and engaged on the issues between now and the next Advocacy Day. It has been a pleasure to serve you in Advocacy Day training.

Bill numbers (if available) for Advocacy Day 2019 legislation:

  • Access to Infertility Treatment and Care Act: S 1461, H.R. 2803
  • Women Veterans and Families Health Services Act: S 319, H.R. 955
  • Every Child Deserves a Family Act
  • House Resolution: PCOS Awareness Month: H.R. 146
  • Medical Research Funding, FY 2020 Appropriations