My First Advocacy Day

Every year Resolve – the national infertility association, organises an advocacy day at Capitol Hill.  What does that really mean?  It means that we get the chance to tell our senators and representatives what we really need to help build our families- IN PERSON!!! We get to advocate on behalf of the 1 in 8 couples diagnosed with the disease that is infertility and for our future generations on issues that help Americans to build their families.

I’ve always wanted to go to advocacy day, but have failed miserably because of work travels, this year I was able to get away from work for a few days to make it to Washington DC.  Unfortunately Chris couldn’t make it with me so I went alone and met up with some of my local infertility support group members there.  But I wasn’t really alone, I met some incredibly inspirational people who have been advocating and volunteering for YEARS!!!  And an added bonus I also met up with Heather from Meet the Hopefuls blog!!!!! Heather was the state Captain for California ☺️

So what did I do??

Firstly I attended a welcome reception on Tuesday evening prior to the big day.  Here we got a chance to meet our state captain and others from our state, figure out who had done this before, and who were our mentors.  Virginia was 40 something people strong! We were amongst over 200 people who had traveled from across the country to advocate.  WOW!

It’s quite nerve wracking – I mean, I am British, I only really know a little about how the US legislation system works (mostly from TV dramas ;-p), so there was a lot for me to learn in addition to what the legislation being advocated for was and it’s history.  Having experienced people and mentors available helped take away those nerves.  Us first timers weren’t alone.  We also had some online training a few weeks before to introduce the bills we would be asking representatives to co-sponsor and vote for.

Part of the welcome reception included a few speeches, one of which brought me to tears.  A veteran who had been injured in Afghanistan had been advocating with his wife for years to make infertility covered by the VA. Their infertility was directly caused by the injuries he suffered and his country wouldn’t help him build his family.  What an insult to his service and the life he gave to his country.  But in 2016 congress authorised funding to provide adoption assistance and IVF to those veterans who had a service connected injury or illness that caused infertility.  As a result of the funding this veteran has been able to have a child.  And they brought their 15mth old with them.  It was so moving to hear what a difference advocating can make.

Yeh, I cried, both tears of happiness and sadness.  Sad because the funding for the veterans was going to expire in 2019 so we needed our congress to support a new bill that would make infertility coverage permanent and overturn the ban of IVF in the VA.  My head actually hurts thinking that their country was not supporting their injured veterans.  I just can’t understand why anybody would be against it.  The only reason is money.  That is it.  So far just over 200 veterans have sought care under the funding that expires in 2019.  But as we all know, the process of infertility treatment and adoption can take years.  So some of those 200 veterans might not be able to continue their treatment if nothing is changed.  And then there are those veterns who don’t know they want to build a family yet, and in 5 or 10 years when they come to have children realise they need help, when it’s not there. It just makes no sense Congress!!! Support your veterans in building their families – it’s a no brainer!

I went back to my hotel excited for what the next day would bring.  I set my alarm for 5.30 AM so I could make it into the city to start our training at 7.30AM.  I actually found it hard to sleep thinking about it all.

The next morning, I made my way into the city on the metro as I decided to stay on the outskirts of the city to save a bit of $$$.  DC hotels aren’t cheap.  I had missed out on the block booking that Resolve had organised.  I spent a lot of my journey on the metro researching the Senators and my house representative.  What were their thoughts on family, veterans, adoption, healthcare and finance issues.  Did they sponsor or co-sponsor any of the bills we were advocating for already?  Did they have family, do they have any links with the infertility community already?  None of the senators, Mark Warner and Tim Kaine, or my representative, Donald McEachin, had co-sponsored yet, so I knew we had some work to do.

When I checked in I was given my schedule for my appointments and received all the supporting materials I needed, including a cheat sheet with information and facts that I would unlikely be able to remember off by heart!  My schedule was actually really good.  I had appointments at 11AM, 1230PM and 2.30PM.  I thought that was plenty of time between appointments, but in reality it was go, go, go all day.  After I checked in and got a hearty breakfast, we sat down in our states and was given more information about the day.  We were told a little bit more about the legislative agenda Resolve was advocating for…

S700 and HR1681 – Women Veterans and Families Health Services Act.  basically giving veterans permanent access to infertility treatment and support through adoption for injured veterans.

S937 and HR2476 – The adoption tax credit refundability Act.  The adoption tax credit is good, but doesn’t support low to middle income families, this legislation will make the tax credit refundable which will help these families who are more likely to foster to adopt, helping to take children out of foster care saving money in the long run.  It’s fiscally responsible, helps children out of the foster care system and helps building families.

Resolution 864 – PCOS awareness month.  This will designate September 2018 as PCOS awareness month.  It has already been passed in Senate.

Medical Research Funding for FY 2019 Appropriations.  Requesting funding of $1.531 billion for FY19 for research related to reproductive disorders such as infertility, PCOS and Endometriosis.

Finally….the most exciting and hot of the press news was announced.  A bill was being dropped on Advocacy day that will have a huge impact, the Access to Infertility Treatment and Care Act.

Wait, what???? YES! what an amazing piece of legislation.  We need to fight for this.  We fight this everyday in our own lives dealing with infertility.  This shouldn’t be a fight we have to have, but we do.  I know the benefits of great infertility coverage, I have 6 IVF cycles in a lifetime covered in my plan.  Infertility is stressful enough without dealing with financial crap.  This bill will require that health plans offer treatment for federal employees (including TriCare) diagnosed with infertility as well as cover fertility preservation for who undergo a medically necessary procedure that may cause infertility, such as chemotherapy.  The bill is being sponsored by Congresswoman Rosa DeLauro (CT-03) and Senator Cory Booker (NJ), they made videos telling us about the Bill and thanking us for advocating.  It was so moving.  I cried. Again.  (yes, there were lots of tears from me, I planned for it and didn’t wear mascara…more to come….!!!)

After being given all the knowledge we needed, we broke out into our states to figure out who was going to say what, to who and when.  With 40 virginians we were given 2 appointments focusing on different issues with each senator, so that meant there were about 20 people meeting with the Senator’s aides (or staffers).  I quickly discovered that I was the only one in my meeting with my representative Donald McEachin.  This meant I would be doing most of the talking and asking!  I had a mentor assigned with me – Chris, who was a guest on my blog during NIAW with his wife Candace.  Chris was fantastic, he was the state Captain and really was font of all knowledge and experience so I felt less nervous about and was more excited.  In addition to figuring out who was going to say what, we also had letters from other states and areas that were not represented by someone in person, this meant we had to visit the offices of these representatives and ask for an impromptu meeting with someone to talk through the issues.  We figured out who was going to deliver what and where.  At the time I had no idea how much work this was actually going to be!!

Once we had a game plan for the day, we headed off to Capitol Hill, clutching our bright orange folders, sporting our orange infertility awareness Ribbons.  This proved to be very helpful during the day to spot others as we wondered the halls of Capitol Hill.  I hadn’t realised how easy it is to knock on the door of your Senator or representative (If you can find their office that is!!)

Our first appointment was at 1130AM with Senator Tim Kaine (Democrat) and we met with his aides for tax issues.  The only place that could fit all 20 or so of us was in the hallway, so there we were talking about our issues, asking for the Senator to cosponsor the bills.  Someone from our group gave their personal stories of struggles.  I cried. And at the end, I handed over all the letters from other constituents asking for what we had just asked for, as well as some more supporting information for the Senator to consider.  It was pretty easy, yet empowering.  This was our opportunity to create awareness and make change happen.  Right there, right then.  15 minutes.  That is all the time we had.

We had some time to deliver some letters to a few other Senators, so we broke up into smaller groups to achieve our mission.  I went with a lady who had been to advocacy day several times before and another who was a newbie like me!  Before we went into the office we did a quick bit of research on the Senator to see what their position might be in anticipation of getting a meeting with one of their staffers.  The first Senator who’s state will remain nameless, there was very little we thought they would be supportive of.  So what did we have in common?  When it comes down to it, a family.  He has children, so there was something at least! After all we are advocating Pro-family!  Unfortunately no one was able to meet with us.  But we dropped off the letters from his constituents, material about the bills we were advocating for and collected a business card of the relevant aide to contact later on.  We did the same with two other Senators before we ran out of time and needed to get to our next appointment.

My second appointment was at 1230 with Senator Mark Warner (Democrat) and we met with his aide for veteran’s health.  This time we had different people speak, and I cried again when someone gave their personal story of infertility struggles, and a lady who worked as an adoption social worker told her perspective.  The other group managed to meet with the Senator and snag a photo with him!

Time for some lunch!  All our other meetings were the other side of the Hill, so we managed to get a ride on the underground trolley that connects with the Capitol building.  I didn’t get a picture, but I felt like I was in a James Bond movie!  very cool.  We found somewhere to eat eventually and collected ourselves in preparation for my meeting.

My third appointment was with Congressman Donald McEachin at 3PM.  This was a far more intimate meeting with one of his aides, we sat in the Congressman’s office, which was the Pi Office – 314!!!!! We talked about the issues on the table and it seemed like Donald McEachin would be very supportive of what we were asking for.  I am hoping to see his name as co-sponsor!!  Just as we were finished he came into his office, so we introduced ourselves and why were there today, and we were able to get a photo with him!

We had some time to do more letter and material drop offs with other Reps and emptied our bags of letters.  We delivered them all!  Unfortunately there was a health committee meeting going on so many of the relevant people were not in office available for any impromptu meetings.  We managed to find somewhere to get coffee – there was a dunkin donuts in one of the house of representative’s building’s basement.  I made the joke that America literally does run on Dunkin.  True fact.

The final meeting of the day was by far the best.  I joined Chris, Candace and Allison from my local support group on their meeting with their representative, Bobby Scott.  I live on the corner of three congressional districts so I actually work in his district and was excited to be able to talk with him too.  His aide listened with intent and understanding, she asked some awesome questions.  Including what we were doing to support women and families of colour.  A great question because it is so important.  It seems that the congressman too would be supportive of all our issues.  Half way through our meeting he came in to meet us and took a picture with us!!! He had just come from a foster child shadow day and had the most amazing tie on.  So appropriate and so timely for what we were advocating for.  His staff were so warm and friendly it was the perfect end to the day.

To round off the day we all met up for refreshments and a taco bar, swap our experiences and sit our weary feet down.  I think I spent the first 6 hours of the day on my feet!  Luckily I was well prepared and wore flat shoes.  An absolute must to survive the day.  I left the day feeling excited that I had the opportunity to make important people in the legislative work understand how they can help build families in America.  For my American friends, my virtual friends and for my daughter, an American citizen.

I’ll be going again next year for sure.  Next year this new bill will be coming of age, and may be even issues relating to Personhood bills may be on the agenda.  What I do know is that there is still a lot of work to do.  So who’s joining me???!!!

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Natural Conception after Adoption and Assisted Reproduction Treatment

Today at work I was putting together a presentation on “What is correlation?” (I know, my work is full of excitement and such geekery 😎 ), and I came across an interesting example of ‘illusory correlation’ from the infertility world that I thought I would share with you all.  I was about using it as an example in my presentation.

Have you ever heard someone say

“Adoption increases the chance of an infertile couple getting pregnant naturally?”

Many people have heard or say this, and many can tell you a story of someone they know/know of that this happened to.  The rationale behind this can be hypothesised as:

Once the pressure is off and the couple is less anxious, it will happen naturally.

But how true is that?

Apparently it turns out there is NO empirical evidence to support such a hypothesis.  Research (from Resolve) has shown that the percentage of women who become pregnant without adopting is no different to the percentage of women who become pregnant without adopting.  What this means is that, while a small percentage of people who were having difficulty getting pregnant do not get pregnant after adopting a child, these are likely the same people who would have gotten pregnant after having difficulty, even without the adoption.  It has nothing to do with the adoption.

So why do so many people believe this myth?  Because many people can tell you of a story of someone they know that this happened to.  But the thing is, most people can only tell you ONE story.  And they don’t tell you all the stories they know about the infertile couples that adopted a child and didn’t get pregnant naturally afterward.  The examples of where it did happen are salient to them, perhaps because they remember thinking to themselves “This couple is going to have two babies within a few months of age of each other!”  What happens when something is salient – or when it produces a vivid memory – is that people tend to overemphasize the likelihood of its occurrence.  And they give it a lot of attention.

This is known as vividness bias.

The vividness bias is supported by what’s often referred to as an illusory correlation – the impression that two variables are related when in fact they are not.  In this example, because of one or two very salient or vivid examples, many people believe that there is a relationship between adoption and getting pregnant, when in reality, there is not.

(Extracted from: Intentional Interruption: Breaking Down Learning Barriers to Transform By Steven Katz and Lisa Ain Dack)

Similar to the case made for getting pregnant naturally after adoption, you may have heard a similar argument for couples who stop assisted reproduction and get pregnant naturally afterwards.  There is research that was published in 2012 that found that 17% of women who became pregnant, and gave birth, from IVF treatment, became pregnant again naturally (NB….within 6 years!).  For those women who were unsuccessful with IVF, 24% became pregnant naturally after stopping infertility treatment.

Other recent research has found that 16% of infertile women conceive naturally after stopping treatment (within 13 years!).  And by the way, let us not forget that a fertile couple’s chance of conception is 20-24% for every menstrual cycle!  So that 16% statistic still SUCKS.  In addition, the original cause of a woman’s infertility made a difference as to the chance of achieving a successful natural pregnancy after IVF – if the infertility was due to uterine, cervical or ovarian problems, endometriosis or infertility in their male partners, the women had a significantly greater chance of achieving a successful natural pregnancy after stopping IVF.  However in comparison, if the couple’s infertility was ‘unexplained’ or the problem was with tubal pathology, her chances of a natural pregnancy decreased 😦

So there are many illusory correlations out there in the infertility world.  And now you know how to respond to people that say to you:

“ohhh you will get pregnant naturally after adopting/stopping treatment, that happened to my friend/friend of friend”

you can reply

“……the evidence is contrary, my dear, and you are suffering from vividness bias”

It’s a whole lot politer, and factual, than – “F*#$ you”.

Our options widen…but not on the kids’ parties front

I had a great email today from our legal department.  They told us that the US government forsees no legal impediment based on our visa status for adopting in the US, either domestically or internationally. They are also aware of two other families from my organisation who have previously adopted successfully, however one family had a few complications over the legal issues.  However, it sounds like if you have money to burn, the legal issues will disappear.  I don’t mean in a corrupt way, but rather the more you pay the more you get in terms of service.

We asked our legal team to help us look into our visa status so we would know if it was actually possible for us as ‘legal aliens’ to adopt if we decide to stay in the US.  It took about three weeks for everything to be double checked, but it was worth the wait and now we know….we can adopt!

I also had a phone call from our IVF nurse co-ordinator today.  We have an appointment next week with her to go through the whole process in more depth than the doctor did – apparently it will take about 1.5hrs!!  She sounded very friendly and helpful (I guess you have to be do that job!)  She also informed me something the doctor forgot to tell us last week.

The Embryology lab is going through a refurbishment in late June/early July!

Fortunately it sounds like it won’t affect us as we would expect an egg retrieval in mid July.  I hope they don’t over run their re-furb or delay it because that would suck going through all that just to have our cycle cancelled because of some lazy painters!!! But I’m sure they wouldn’t let something like that happen.

I’m currently on Cycle Day 19 and I’m feeling great.  I have had the odd pain, but nothing like the sharp pains from the last two IUI cycles.  Fingers crossed they don’t come back that it was just a side effect of the progesterone and nothing else nasty causing them.  Our break from trying to conceive has been quite fun; next weekend we are planning a trip to our local beer festival and Bush Gardens to try out their new roller coaster ‘Tempesto’!

Physically the break is doing me good.  Mentally, I’ve still had a few odd moments.  This last weekend we didn’t go to our friend’s daughter’s 3rd birthday party at the petting zoo.  Now, I love animals. Love love love them, and who doesn’t love to pet animals!  But I freaked out at the last minute about going someplace where everyone else will have a kid with them and we would be the odd ones out.  I mean, why would anyone go to a petting zoo without a kid in tow?  If it had been a party at their house or somewhere more neutral in that sense I wouldn’t have had a problem. It was just the idea of feeling like we didn’t belong, with the potential for random strangers asking ‘oh which one is your kid’? Or, like the time a random granny noticed us at a Christmas tree lighting ceremony, told us ‘It’s OK that you don’t have a kid’. Yeah, I’ve been there before….and right now it is not for me.  I felt bad that I couldn’t pull myself together to go, I hope they can understand.  I’m sure they do.  I just wish I didn’t feel like this.

So to end this post on a positive note…here is a picture of a cheeky goat that we know.

Who wouldn't want to pet this cheeky goat? Oh that would be me, big chicken pants.

Who wouldn’t want to pet this cheeky goat? Oh that would be me, the big chicken pants.

The big question – What if we can’t have children?

As we were about to head to bed for the evening, Chris quietly asked “What if we can’t have children?”.  This is a question we have discussed before – several years ago in fact.  It’s the kind of question you ask just after your boyfriend/fiancee asks you to marry him.  It’s one of those BIG questions.  And we had much time to talk about it back then.  Chris proposed to me just 1/2 hr into our 4 day hike in the remote Italian mountains, the Dolomites.  Of course I said yes when he asked me to marry him (If I had said no it would have been a rather awkward four days in the mountains 😉 ), but this left four days of ‘just us’ to talk about ‘the big things in life’, to double check that we were in fact right for each other.  Well probably more of me doing the double checking, after all, he had been planning to propose to me for months, he had all that time to think about it.  We concluded that love conquers all, you couldn’t really argue with that logic.  Oh so naive?

This time around, Chris asked the question with a genuine sadness in his eye.  With a little bit of wine in me, my eyes welled up instantly and hit some kind of nerve.  Because yes, love does conquer all, but it hurts to think that this could be a reality in the not so distant future.  I have thought about it a bit, but I haven’t really looked into it in depth.  We discussed potential future options of donor eggs. donor sperm, gestational surrogacy, adoption and being ‘child free’.  These discussions were brief and emotionally fuelled, with neither of us having much understanding about any of them.  We concluded that we do not both agree on each of these options, we have our differences of opinions, however we recognised that these feelings are likely to change dependent on our situation and once we have done more research together.  We did agree on one thing – that we would use all of our savings if we had to, but we would not get into debt.

The discussion was brief, we were tired and emotional, it was not the best time to ask this BIG question.  But it is a question we need to be prepared to think about more if round 3 of IUI does not work.  This doesn’t mean we are not hopeful about round 3, far from it, it’s just something we might want to start smarting up about.  Education certainly never hurt anyone.