Create Change!

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

In just one month, 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.

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.

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 training content in the form of blogs, podcast episodes, and at least one slide show.

“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!

Check out our Create Change posts from 2018 below.

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.

 

What We've Learned About Advocacy - 2018

To begin, here’s a little about how we got involved in Advocacy Day and what we’ve learned about the advocacy process.

 

 Annie Kuo

In 2015, I was following RESOLVE on Facebook, while undergoing repeated, and ultimately unsuccessful, treatment for fertility preservation. When an Advocacy Day video popped up, I was inspired and instantly curious. How many people from Washington State were advocating for the infertility community? I picked up the phone and called RESOLVE, then committed on the spot to attend. “Lobbying Congress” had always been on my bucket list, but I just needed the cause to be passionate about. I was frustrated by the roadblocks I kept facing in treatment and needed to channel my energy and frustration into something productive.

What better avenue than getting involved in legislative advocacy (and soon after, support groups)? Advocacy Day is one big day out of the year where influencers, activists, and passionate everyday citizens came together to make an impact. If I wanted to be part of creating change, Washington, DC on Advocacy Day was one of the best places to be. I am always touched by my fellow advocates’ courage and spirit of action on Advocacy Day. When we show up on the Hill, we are the voice of everyone in our state and city with infertility. It is humbling and empowering, one I regard with great responsibility and honor. Here’s a personal video greeting I made last year about why I continue to advocate for RESOLVE.

May 23, 2018, will be my fourth Advocacy Day… I am proud to say that Washington State’s fertility score — as assigned by RESOLVE — has improved from a D to a B in the past three years, and am looking forward now to working toward an A — the biggest leap, for sure, which will take a village.

Kelly Garrity

Like many in Washington, DC, my day job involves advocacy and fundraising – while my many side interests include working with RESOLVE, teaching figure skating, running, and enjoying a feisty 3-year-old daughter.

My infertility journey began in early 2012 when I experienced the first of three successive miscarriages. Getting pregnant was never our issue, but staying pregnant was and in 2013 we started the IVF process and were blessed to become pregnant with our daughter in 2014. We pursued another round of IVF in 2017 and were lucky enough to get pregnant with our little boy, Connor James, who was sadly born sleeping at 35 weeks in 2018.

I attended my first Advocacy Day in 2013 and have never looked back. The Metro ride to that first breakfast was one filled with butterflies of nervousness, tears of worry, and a giddiness about meeting so many others who had walked the infertility journey. I was amazed by the people I met, their ability to talk and share so openly about what we have all gone through, and the change that we were able to make that year. It has driven me to come back every year since and get more involved with RESOLVE.

Thank you all for advocating with us!

Check out our Create Change posts from Advocacy Day 2017.

-Annie & Kelly

Your Story Helps Legislation Get Passed - 2018

YOU are key to putting a face on the issues. It’s often the stories — not the policy briefings — which inspire lawmakers to act. Lawmakers want to

hear from constituents 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.

Through the years, participants at Advocacy Day have helped to shape legislation, sway opinions, and create meaningful change.

  • In 2017, RESOLVE advocates were able to save the Adoption Tax Credit from elimination or modification during the tax reform legislative process.
  • In 2017, RESOLVE advocates helped vocalize that personhood legislation would have the unintended effect of limiting access to family-building options. We educated lawmakers that if they passed bills on personhood, it would prevent doctors from practicing IVF in accord with the best standards of medical care. To date, personhood legislation has not passed.
  • In 2016, RESOLVE advocates helped secure passage of an amendment allowing the Veterans Administration to offer IVF and/or adoption assistance to veterans with a service-related injury causing infertility.

Advocacy is not just about Americans gaining new access and coverage to treatments. It’s also about protecting legislation that may have unintended consequences on our ability to seek treatment. It also supports, protects, and encourages other ways Americans can build families, such as adoption. We can’t wait for you to join us this year and flip the script to ensure they get it right.

-Annie & Kelly

Local Matters! - 2018

 

Advocacy Day is focused on federal advocacy efforts, but it’s important that we monitor family-building legislation on the state level as well.

Every state and local government has its own unique set of circumstances that affect policy proposals. As the constituent who can best articulate your local situation, YOU are the key to enacting change. It doesn’t stop with Advocacy Day. Advocacy can continue any day, in fact, many days of the year.

On the state level, family-building advocates have been very successful in increasing access to family-building options and fighting against legislation with unintended consequences for the infertility community.

  • Washington State became the first state to enact UPA 2017, the updated Uniform Parentage Act for use by other U.S. states as uniform legislation for parentage laws. The law, signed by Governor Inslee in March, is now current with social, legal, and medical advances, and ends the state’s ban on compensated surrogacy.
  • In the last 5 years, several states have passed legislation increasing health coverage for infertility.
    • New Jersey expanded coverage to include single women and women in same-sex relationships while reducing waiting periods.
    • Connecticut, Rhode Island, and New York have all passed bills covering fertility preservation caused by medical treatment, such as chemotherapy.
  • Over the last few years, our community has protected access to family-building options by ensuring that bills including “personhood” have not passed. Such legislation could prevent doctors from practicing IVF in accord with the best standards of medical care. For background on personhood legislation, click here.

For more about state advocacy wins, click here.

Flipping the script can happen all year long, including at your local level where change is felt much more intimately. You can apply many of the same tools we use for federal advocacy when you address your local lawmakers.

-Annie & Kelly

Google to the Rescue - 2018


Google is your best friend!

Here are some things that you could consider finding out about your representatives.

  • Current hometown
  • Political party
  • Awards/honors
  • Military background, if any
  • Spouse occupation
  • Religion
  • House of worship
  • University/college
  • Career field
  • Top campaign donor
  • How long have they been in office?
  • Did they serve in state/local office first?
  • What are their top 3 issues and why?
  • What organizations are prominent in their community?
  • Do you know large employers in their area? Are you friends with any employees of them?
  • What figures in their community might be influential to them?

-Annie & Kelly

Make it Personal - 2018

In 2016 and 2017, our Advocacy Day community was addressed by two Members of Congress (MOCs) with empathy and understanding for Americans struggling to build families. Senator Tammy Duckworth (D-Ill) — who recently became the first sitting US Senator to give birth — and former House Rep. Timothy Walz (D-Minn) are members of the infertility community.

House Rep. Timothy Walz (D-Minn)
Senator Tammy Duckworth (D-Ill)

As they shared their personal stories and encouragement, two things became clear — stories matter and we should remember that both advocates and legislators are human.  Legislators are not just Members of Congress — they are parents, siblings, friends, volunteers, etc.

We can have a successful fly-in by incorporating a personal approach with preparation and practice.

Generate goodwill

A simple tweet that says “ Looking forward to seeing you on May 23 when I fly in for Infertility Advocacy Day” can go a long way in showing respect for your Members of Congress and their time.

Who are you meeting with?

If you are unsure who your exact representatives are you can find them by clicking here and entering your zip code. The results will list your House Representative and State Senators.

Find out more.

Once you know who represents you, it’s time to dig deeper. Using this website, you can search the name of each lawmaker and find more details about them: what committees they are on, areas they are likely to sponsor, and their voting record. Also, it’s good to know what your lawmaker looks like in case they pass you in the hallway!

Using Google or your favorite search engine to get to know your elected official. You can reference this sheet for ideas.

Keep track of the information.

Lee Rubin, RESOLVE board member and mentor to our advocate community, created a great tracking sheet just for this purpose. The 4-point worksheet has lines to keep track of some of these details as well as other information to look up.

Optimize the best stories

You will have the chance to pool stories with your state delegation as part of the morning training. If you have the chance to do so, you may even share stories in closed social media groups/webinars throughout the year in preparation for fly-ins. Consider which stories will have the most impact in the rare time you have with legislators.

Have fun getting ready!

– Annie & Kelly

Legislative Lingo You Might Hear - 2018

We know how overwhelming this process can be. There is a lot to take in prior to meeting your lawmakers and tracking our advocacy’s effects on legislation. Here is some background on legislative terms you might hear in the context of your meetings.

What is the difference between the House and the Senate?

House of Representatives and Senate are the two legislative bodies that write, debate, and pass federal laws. Every citizen has one House Representative and two U.S. Senators. On Advocacy Day, we will be talking to our House Representative and our two Senators about federal bills and policies that affect the infertility community.

What are the differences between a House bill and a Senate bill?

Bills are laws that are proposed by a member of Congress and are either “introduced” or “filed” either in the House of Representatives or in the Senate.

  • House bills are designated “H.R.”
  • Senate bills are designated “S.”

What is a CBO Score and what does the score of a bill mean?

In your meetings, you may be asked the score or CBO score of the particular bill. Bills in most Congressional committees are assigned estimates (“scores”) of what they will cost the federal government by the Congressional Budget Office, or CBO.

Currently, none of our bills have been scored. However, this opens the door to say we can follow up once it has. Finally, they can absolutely co-sponsor and even vote on bills that have not been scored, so don’t take that as a final answer.  Remember, we are talking about BUILDING FAMILIES — everyone should be for that!

What is a sponsor or co-sponsor?

A sponsor in the United States Congress is the first member of the House or Senate who introduces a bill for consideration.

A “co-sponsor” adds his or her name as a supporter to the sponsor’s bill. This is why our work on Advocacy Day is so important— if there are many co-sponsors, this indicates a bill with a lot of support.

If your member has not signed on to legislation that we support, you can encourage them to reach out to the bill’s sponsor.  If you use the 4-point “Spy” worksheet, you can fill in the blanks on our bills and write down if your legislators are co-sponsors or not. If they are a co-sponsor already, THANK THEM! These offices never hear thanks, so please do that!

Why are Committees important to our bills?

This is the next big step. A group of members of Congress will be the ones who make the initial decisions about a bill. Once a bill is introduced, it is assigned to the appropriate committee for consideration. There will usually be a House Committee for House bills and a Senate Committee for Senate bills.

This year, the Women Veterans and Families Health Services Act is in the Senate and House Committees on Veterans Affairs.

This year, the Adoption Tax Credit Refundability Act is in the Senate Finance and the House Ways and Means Committees.

This year, the NIH’s National Institute of Child Health and Human Development (NICHD Appropriations is in the House and Senate Appropriations Committees.

The PCOS resolution passed the Senate in December 2017.  The same Resolution has been introduced in the House of Representatives by Rep. David Scott (GA).

This is why that “Spy Sheet” is super important. You can sleuth to find out if you have a rep that is on a committee of one of the bills we are advocating for.

-Annie & Kelly

The Ask - 2018

If you aren’t able to join the live webinar sessions, make sure that you register or listen to the recordings.  We know there is a lot of information to digest and hope multiple formats help make it easy to understand.

On May 23, each meeting with your Member of Congress (MOC) and/or their staffer(s) will be about 15 minutes long. We want to make sure to thank EVERY office for two direct wins and one related win: 

1) Congress saved the Adoption Tax Credit (ATC),  2) Congress appropriated money for veterans to receive IVF coverage, and 3) Congress increased appropriations for the National Institutes of Health (NIH).

Although we are grateful for the wins, there is still work to do on these and two brand new issues this year:

  • Further improve the ATC by offering refundability to lower-income families who adopt, typically out of the foster system. We hope that lower-income families can benefit from the credit and be able to afford adopting a child in need.
  • Ensure continued, hopefully permanent, appropriation for IVF for veterans. The current appropriation funding only lasts through September 2019.
  • Increase funding for NIH research, specifically $1.5B to the National Institute of Child Health and Human Development (NICHD). The funding would support research related to reproductive health disorders such as infertility, PCOS, and endometriosis.
  • Ask our House representatives to federally recognize Polycystic Ovarian Syndrome (PCOS) Awareness Month. This resolution to designate September as PCOS Awareness Month has already passed in the US Senate, so we will be asking for co-sponsors from the House. This is not a bill, but a way to highlight issues we care about and raise awareness in our communities.

Make sure to preview the Day of Advocacy Day Materials. You can now read the issues in a Nutshell document for both the Senate and the House.

Our next blog post will address what to expect in your meeting. Thanks for reading along!

-Annie & Kelly

Practice Makes Perfect - Role Play Meeting Webinar & Videos - 2018


We’ve created this 5-minute webinar with a quick training review and up-to-date information about Advocacy Day. Please take time to check it out before you arrive on the Hill.

Due to a new legislative item for which we will receive a morning briefing, training time will be limited at the podium. We realize that role-play is important, so we encourage you to check out these role-play videos of a Congressional appointment.

  1. RESOLVE role-play video #1
  2. RESOLVE role-play video #2

Thanks so much for your hard work preparing for this important day.

Safe travels, everyone!

– Annie & Kelly 

The Follow Up - 2018


What an amazing Advocacy Day!  It was wonderful to be in the room with you all when the Access to Infertility Treatment and Care Act was announced and to be part of history introducing the bill to our members of Congress.

We hope the experience of advocating in DC for the infertility community has inspired you to keep taking action!  Follow-up is an important strategy for getting and keeping traction on issues.

If you have not already sent a thank you email, RESOLVE has a template letter you may use or make 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.  

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.

For Advocacy Day 2018, these were:

Access to Infertility Treatment and Care Act
Senate: S 2960, House: H.R. 5965

Women Veterans and Families Health Services:
Senate: S 700, House: H.R. 1681

Adoption Tax Credit Refundability Act:
Senate: S 937, House: H.R. 2476

House Resolution, PCOS Awareness Month:
House Res.: 864

Medical Research Funding, FY 2019 Appropriations

  1. 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.
  2. Invite your lawmaker and their staff to any infertility community events such as walk of hope for their education and exposure to our issues.
  3. 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.
  4. 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 ideas will keep you busy and engaged on the issues between now and the next Advocacy Day. Together, we are creating the change we want to see in the world.

All the best,

Annie & Kelly