Create Change!

A blog about how you can best prepare for RESOLVE's Advocacy Day. 

By Annie Kuo and Kelly Garrity, 2017 Advocacy Day Co-Chairs

Annie Kuo	Kelly Garrity

Create Change #5: What's Next?

Hi everyone,

It’s been 6 weeks since Advocacy Day and surely you are back into your routines. One thing is for certain, the experience of advocating in DC for the infertility community has no doubt changed you in some way, big or small. We’re here to share what happens next. As you may recall, follow-up is an important strategy for getting traction on issues versus being forgotten. 

Here are some tips on how to stay on top of issues and your lawmakers. We plan to check in again each quarter before the next Advocacy Day. 

1. Connect to the Advocacy Day attendees group on Facebook if you haven’t yet. 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. It's official group name is: Advocacy Day Attendees Group.

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.  For Advocacy Day 2017, these were: 

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

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

Personhood:
Senate: S 231
House: H.R. 681 
Additional House Bill: H.R. 586
 

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 for their education and exposure to our issues. These may include, for example, invitations to advocacy events in your state or the opening reception for an infertility art exhibit or other infertility awareness event.

7. Follow-up each quarter to your lawmaker’s DC office when there is something to talk about. Set a personal alert using your Google calendar, if you use that.

8. Identify local legislative offices to connect to and request a quarterly meeting with lawmaker or staff on their visits home. 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. We’ll check in again in 3 months! 

All the best, 

Annie & Kelly

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Create Change #4: Personhood

Dear Advocates,

The countdown is on!  By now some of you traveling to DC may be packing your bags. Speaking of packing, this post packs in a lot of information. It will cover a subject that requires some delicacy (personhood), lingo to know before you go, and what to expect in your meetings.  Let’s roll up our sleeves and get started.

Your Meeting at a Glance
Although the issues discussed will change from year to year, the delivery of our stories and how to talk to the staff/members doesn’t change. Here is a video example of the format for a legislative meeting: 

• Opening 
• Personal story or stories 
• Information on the bills 
• Closing 
• Follow-up

Talking About Personhood
Infertility does not discriminate. Whether a citizen is Republican, Democrat, religious, atheist… its physical and emotional toll is felt all the same. Assisted reproductive treatments have come a long way since they were pioneered 38 years ago – and many of us have reaped those rewards.

The movement over the last decade to define personhood has unintended consequences for the infertility community.

 What does personhood mean?   

Personhood is the legislative attempt to define human life as beginning at the moment an egg is fertilized and typically aims to give such embryos the full rights of a person.

Isn’t this just about abortion and stem cell research? Why would it affect IF treatment?

1.)   While personhood efforts began with those issues, when a bill concerns fertilized eggs or embryos, then fertility treatment is likely to be implicated.

2.)   Because a microscopic embryo would have the same rights as a person, any action that posed a risk to an embryo would be forbidden, even if the goal were to help someone have a baby.

3.)   If personhood becomes the law, it would turn back the clock on treatments like IVF and embryo cryopreservation (freezing), potentially making them illegal.

I get it, this is an issue. But how do I talk about it?

First, relate your infertility journey to the effect of this legislation. For example, Kelly has gone through several rounds of IVF with Frozen Embryo Transfer (the significance of which is outlined directly below). After that, focus on the unintended consequences of personhood to access family-building options. Some sample talking points are:

• Personhood bills pose a significant risk to patients who need IVF, as many of the medically necessary procedures that are done in a fertility clinic lab may be in violation of a personhood law.
• Some of these procedures include the freezing and thawing of embryos for use in additional family building cycles – a method that allows for a reduced medical and cost burden on the patient.  In that freezing and thawing process, embryos could be damaged. With personhood in place, an IVF patient might not be allowed to have embryos frozen for more attempts at pregnancy.
• Given the threat to patients’ access to much-needed family building options such as IVF (a legal procedure in this country for 38 years and legal in all other developed countries) – we want to express our concern about this legislation. It would prevent people from being able to have the families they dream of.
• We hope you will reach out to the infertility community and medical professionals to learn more about the harmful effects of personhood on the infertility community.
  

Assume that the legislator has no idea of the impact of personhood on IVF medical treatments. In all the years RESOLVE has been fighting Personhood, we have learned that education is the key – most legislators have no concept of what goes on in an IVF lab, what an embryologist does, and the implications for embryos created for IVF if personhood is in place.  Speak with compassion and be a resource for your legislator. They need your expertise to understand the implications.

Legislative lingo you might hear
There is a lot to learn in 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. We won’t be talking about state-level bills.

What are the differences between a House bill and a Senate bill?
Bills are laws that are proposed by a member of Congress. These bills 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. Follow up is key and this will be a great way to rekindle the conversation with your reps after Advocacy Day! For the bills before the Vets committees, those bills don’t typically get scored until they are scheduled for a committee vote.  However, we also know that staffers asking for the “score” and telling you they can’t co-sponsor until there is a score, is actually a stalling tactic.  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!

Do we have any Companion bills this year?
Yes! If the same bill has been introduced in both the House and in the Senate, they are called “companion bills.” This year all 3 are!

Women Veterans and Families Health Services:
Senate: S 700: Supporters
House: HR 1681: Supporters

Adoption Tax Credit:
Senate: S 937: Supporters
House: H.R ?? – this bill number is coming soon, as the House will introduce it on May 16

Personhood:
Senate: S 231: Supporters
House: H.R. 681: Supporters
Additional House Bill: H.R. 586: Supporters

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" is a senator or representative who adds his or her name as a supporter to the sponsor's bill either on the day it is introduced or in the days/weeks/months that follow. 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.

 
Each of the bills listed above are hyperlinked to a congress.gov page that lists their sponsor and any co-sponsors. 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 Personhood Bill is in the Senate and House Judiciary Committees.

This is why that "Spy" Sheet that Barb mentioned 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.

Whew!  Got all that?  Don’t worry — we will review this together in the morning training.

We can’t wait to meet you next week.

Safe travels,
Annie & Kelly

Create Change #3: It’s a date – Google to the rescue

Would you believe it’s less than two weeks until Advocacy Day? We look forward to meeting you soon. On the recent training webinar, you heard how important your story is to mobilizing lawmakers. Last week we covered how to craft your elevator pitch -- we hope those are going well.

This week we will cover helpful background for your big meetings. These are like first dates after all.

Think about the last time you went on a first date. Even before Google, Facebook, MySpace… you wanted to know about the other person beforehand. Preparing for your meetings on Advocacy Day is no different and we want to help.

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. For example, one of Kelly’s senators is Timothy Kaine. This website shows what committees he is on, areas he is likely to sponsor, and his voting record. His picture also appears. 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, you can get to know your elected official on the following points. Annie suggests spending about 10 minutes on researching these areas. How might you connect to your lawmaker? Who or what might influence them on particular issues?

• Current hometown

• Political party

• Awards/honors

• Military background, if any

• Spouse occupation

• Religion

• House of worship

• University/college

• Career field

• Top campaign donor

• What are their top 3 issues and why?

• What organizations are prominent in their community?

• What figures in their community might be influential to them?

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.

Enjoy getting ready,

Annie & Kelly

Create Change #2: Crafting Your Elevator Pitch

We cannot thank you enough for giving your time at Advocacy Day and want to make sure you feel as comfortable and prepared as possible. We know that each one of you has walked a different path on your way to becoming an advocate - the details make up YOUR STORY.

Sharing your story will be an option on Advocacy Day for one or two of you from each state and district. 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!

Infertility is such a silent disease that it can be hard to know where to start. So we’ll go back to basics - a play on the 5 W’s - to give the disease a voice.

Who:    Think about who your audience might be - are they younger, older, male, female - do they have kids, men or women in their lives? This impacts how to deliver your pitch. For example, many staff assistants are on the younger side and may not be thinking about starting their own families yet.

What:   Think about the impact of infertility on your life and how you would describe it to your best friend.

Where:  Let them know where you are from, not just your state but county or city/area in the county.

When:   How long have you been on your infertility journey?  If you have completed your journey, how long did it take and what is the effect that infertility continues to have?

Why:     Why are our infertility “asks” important?  Infertility affects 1 in 8 - with little access to coverage. Family-building is a noble thing to support for all Americans, who often need financial relief and increased access to family-building options.

Over the next few days and weeks, we encourage you to start jotting down how these 5 W’s above apply to you - these are the bones of your pitch. Once you have these bones, it becomes easier to flesh it out for speaking.

For example, Kelly’s pitch is:

I’m from Arlington, Virginia in the Shirlington area and have been in the area more than a decade. I have been diagnosed with infertility for 5 years and in that time suffered 3 miscarriages. 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.

Annie’s pitch is:

I’m from Shoreline, Washington in Richmond Beach. I got my infertility diagnosis 6 years ago before my only child was born. I later pursued fertility treatment multiple times, but had to stop due to the financial and emotional burden. My efforts 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 and become an infertility support group leader in Seattle. I get to know hundreds of patients. To afford treatment or adoption, many 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. There is often not a quick fix to infertility - IVF, for example, should be viewed as a course, with no guarantees of success. Often, it must be repeated, and the financial burden accumulates for Americans who simply want to have a family. The ideal situation is to support the many ways families can be built and provide full access to care.

These are actually shorter than two minutes, but they are a start. Sometimes a complete elevator pitch (like Annie’s) can even be told in less time. This video from Rare Disease Week also has great background on your two-minute story.

Your stories matter. They often are what inspire lawmakers to act. Go get’em.

Onward,

Annie & Kelly

Create Change #1: Why your story matters 

With a month to go before Advocacy Day, we are launching this special Friday e-mail series to highlight some helpful tips for our big day on the Hill. Today we discuss why your story matters. The following weeks will cover:

• Crafting your elevator pitch
• Legislative lingo
• Why personhood matters
• It’s a first date (what a legislative meeting looks like)

This series is the brainchild of the Training Committee co-chairs:

Annie Kuo from Seattle, Washington: Annie is a RESOLVE ambassador and peer-led support group host with a background in public affairs and marketing. Last year she was the state captain for Oregon and Washington at Advocacy Day. You can read more about Annie’s personal infertility story in this article and her work in the Seattle infertility community here.

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

Welcome!  We are thrilled that you are coming to Infertility Advocacy Day.

We have all walked a different road to get where we are on our infertility journey. By showing up and attending these in-person meetings, YOU are key to putting a face on the issues. It’s often the stories — not the policy briefings — which inspire lawmakers to act.

As explained in the first minute of this video, patient advocates matter! Your story helps lawmakers learn, understand, and care about the issues and how their policy making affects your health, well-being, and quality of life.

As a constituent with the power to vote, they do want to hear from you. Your story helps legislation get passed. The more involved we all get, the greater impact we have as a community.

An in-person meeting is high-impact and high-touch. On the spectrum of advocacy involvement and impact, it's #1. That’s why attending Advocacy Day is huge! We are coming together to represent the infertility community and to give a voice to the issues that matter most.

In each meeting, one or two of you will share a brief overview of your infertility story. Next week, we will show you how.

Onward,

Annie & Kelly