the campaign for #infertility…

So yesterday you may have noticed my blog about my Twitter campaign. I’ve met an AMAZING group of women and men through Twitter that are suffering or have dealt with infertility. Many of them have blogs, but not all do. It’s a great place to go for instant advice or support in this IF world. The friends I’ve meet through my blogging and twitter worlds are beyond wonderful. They have been there for me during my 2 miscarriages, through 3 of my 4 IUI’s (during my 1st one I had not yet begun to blog), during my worries of finances to pay for it all, new diagnosis’ and my continuing journey to find my way down this Long and Winding Road.

Well, I signed on to Twitter today at work like I do. I normally just check it when I have some spare time and see what people are up to. Offer support to those in a difficult place in their journey and rejoice with those who receive good news. I don’t know when or why the idea popped into my head, but I decided that #infertility needed to be a trending topic on Twitter. If you’re not familiar with how Twitter works, I’ll try to give a brief description. You get 140 words to say something to those that “follow” you – anyone who has signed up to can see what you say, and you see what others say, based on who you follow. They also have this trending topics thing, where if you put a # in front of a word, Twitter tracks it. The more people who say that word in a tweet, the more popular the topic becomes. On the side bar of your Twitter page there is a “top 10” of sorts of the words that are “trending” the highest – those that are mentioned the most by everyone who has a Twitter account.

So, like I said, I decided to make #infertility one of the Top 10 on April 19th…So I said: “we should try to make #infertility a trending topic…who’s in??” Soon I had a few of my followers joining in on the idea! We were tweeting to each other about making people more aware of infertility or supporting each other through laughter (@fromiftowhen mentioned she’d like to get shirts made that say “I was out of the office b/c I was getting knocked up by my doc”). Soon there were a ton of tweets going back and forth in the IF twitter community mentioning #infertility and trying to get others to join the campaign! I shared some statistics on infertility “National Survey of Family Growth 1995: approx 6.1 mil women & partners in US are affected by #infertility that’s10% of reproductive-age pop” which were retweeted (repeated by someone else so all of their followers could see what I said) by @wombwarrior.

Soon I decided it was time to go on the offensive and attack the current trending topics, hoping that would help.
we can DEFINITELY beat the iPod on Trending Topics!! Join me… #infertility
iPhone and Bieber – you’re gonna go DOWN on trending topics! #infertility
Hekla, Justin Bieber & iPhone are trending…can #infertility own them all???

Soon mini topics were started by other Tweeters like @wombwarrior asking, “What is the tweet-size version of your #infertility story?”  To which I answered: “My #infertility story: 3yrs3mo TTC. PCOS & MTHFR mutation. 4 IUI’s (3 failed, one ended in m/c on 3/19/09) 2nd m/c on 1/25/10.”

Other topics were discussed: what has infertility taught you?  Who supports you in your IF journey?  I got to know so much about my IF Twitter community today, it was amazing!  I also “met” a ton of new IFers on Twitter and got a lot of new followers.

In the end however, we did not make it to the Top 10 Trending Topics today – but I’m not giving up!  National Infertility Awareness Week is April 24-May 1, 2010.  This week was created by Resolve, a great organization focused on bringing issues of infertility to light and making sure that we are spoken for in this world!  I’m going to re-launch my campaign on April 26th (that’s next Monday) to get #infertility to be a Trending Topic on Twitter!  I’m hoping with some planning ahead and getting the word out there we can do it this time!  I’m even going to try and get the word to Ellen DeGeneres via Twitter (thanks for the idea Twitter ladies!  I’m not sure who @ replied her first, if it was you, let me know so I can give you credit here) to have she and her fans help our #infertility trending campaign.

I know this may not seem like much of a goal to have set, but I really think it will be an amazing thing to do.  Too often for those of us faced with infertility there is shame and silence.  We feel shame that our bodies don’t work like other peoples, that we can’t procreate with out a lot of help from outside sources.  It’s a taboo topic and many IFers, men and women alike, stay “in the closet” for fear of what the outside world will think.  I know I bite my tongue often when it comes to issues of infertility, though I’m trying hard to not do it as often.  If we can claim this one small victory, just one day of awareness on a website that is frequented by millions of people around the world, think what that could do for infertility awareness!  I know and am prepared for the other side of this spectrum, for the awful comments we will also get, for the insensitive people who will make fun of us, or not understand us, but I think it’s a price I’m willing to pay, and I hope my Twitter friends are too!  This is a victory I want to claim, some small thing that I can do to help the infertility world…

I can’t do this with out you, my fellow Tweeters!  Spread the word!  Blog about the campaign!  Tell all of your friends, IRL (in real life) and online!!  Please help me to achieve this goal – together I KNOW that we can do it!  We will begin on April 26th, whatever time zone you’re in when that day roles around, begin to add #infertility to all of your tweets, even if they’re not about infertility!  Every tweet counts!!

Thank you, thank you so much to everyone who participated on April 19th – even though we didn’t make it, I think it was an excellent trial run for the big day, April 26th!!  I want to thank you all, but I know I won’t get everyone who helped.  I’m going to try and list you all and if you see I’ve missed someone, leave me a comment or Tweet me and I’ll add them to the list (same goes if you’d like to be taken off the list)…here goes (I’ll be using Twitter names and linking to their blog if they have one):

notpregnantjust, HopefulMamaHack, My_Baby_Love, BustedKate, OpMommyhood, AzoosBeyotch, fertilityauthor, Thegirlwithpcos, WannaBeMom, sonjathegreat, BundledJoy, WaitingLisa, _Nikke, fertilitywire, PCOSChick, yourgreatlife, IVFoldbird, Born2bamummy, OklaLN86, chasingamiracle, Candidly_Andrea, StolenEggs, autoimmunelife, FutureMrsVic, braving_ivf, misdconception, Caretta74, fromiftowhen, wombwarrior, InfertileNaomi, tillien, fertilitychick, fertilityguy

Thank you, thank you everyone – hope to see you again on April 26th!

politics…

Back in June RESOLVE had their Advocacy Day.  I did what I could to participate here in Chicago.  I blogged about it, I used Twitter and Facebook to bring awareness, and I also wrote to my Congressmen and Representatives.  Mostly I just got automated responses back from them, but at least I felt like I’d done something.

Well, to my surprise, I opened up my email today and had a response from Sen. Dick Durbin!  Here’s what he said:

September 24, 2009

Dear Ms. Thornburgh:

Thank you for contacting me regarding insurance coverage of infertility treatment. I appreciate hearing from you.

Senator Kirsten Gillibrand (D-NY) introduced the Family Building Act of 2009. This bill would require a group health plan that provides coverage for obstetrical services to include coverage for non-experimental treatment of infertility. This bill also would provide coverage through the Federal Employees Health Benefit program as well as the Department of Defense.

The Family Building Act was referred to the Senate Health, Education, Labor and Pensions (HELP) Committee. I will be sure to keep your concerns in mind in case this legislation comes to the Senate floor for a vote.

Thank you again for contacting me. Please feel free to keep in touch.

Sincerely,

Richard J. Durbin

United States Senator

Yay!  Not only did he respond, but he let me know about what is happening in Washington that could help us all!  I urge you all to email/call/write your Congresspersons to tell them what you think about this possible legislation!  Hopefully someday soon none of us will have to battle insurance companies and our own pocketbooks to have the families we are dreaming of.

  • Contact your Representative and ask them to co-sponsor HR 697, the Family Building Act of 2009.
  • Contact your Senators and ask them to co-sponsor S 1258, the Family Building Act of 2009.

Information on the HR 697 Family Building Act of 2009 found from this site:

Family Building Act of 2009 – Amends the Public Health Service Act and the Employee Retirement Income Security Act (ERISA) to require a group health plan that provides coverage for obstetrical services to include coverage for non-experimental treatment of infertility that is deemed appropriate by a participant or beneficiary and the treating physician. Requires coverage for assisted reproductive technology only if certain conditions are met. Prohibits a group health plan from taking specified actions to avoid the requirements of this Act. Applies such requirements to health insurance coverage offered in the individual market and coverage offered through Federal Employees Health Benefit (FEHB) plans.

Um, wow…

Some of you may remember that June 25th was RESOLVE‘s Advocacy Day in Washington DC.  I couldn’t be there myself, but I did all I could here.  I posted a blog, I put up twitter posts all day about it, and “donated” my facebook status.  I even wrote to all the senators and representatives that speak for me in DC as an Illinois resident.  I only heard back from 2 of them, but I felt good that I had done something here.

Well, I was looking at my blog stats today and it shows you where people who have read your blog come from and there was a weird link that I didn’t recognize so I click on it and it took me here.

I don’t really know much about “Blog Her” but I’ve been meaning to find out more about it, and now I’m in one of the articles!  If you scroll down to the bottom of the article this blog is mentioned and is quoted!!!  I can’t believe it…it’s pretty crazy that something I said would be quoted by anyone!  Let alone the Stirrup Queen herself!

I hope that what I said and what RESOLVE was able to do in DC will help us all to reach our goals with less stress and less worry about money.  It’s hard enough to go through all we do with infertility without the added stress and pain of having to pay for it all without the help of insurance.

RESOLVE’s Advocacy Day, June 25

resolveLogo

advocacyDay

Hey all…I just found out about this today, RESOLVE’s Advocacy Day.  A group is going to Washington to fight for infertility coverage!  Click here to go to the main page for Advocacy Day.  Below I’ve cut and pasted a ton of stuff from their website.  You can go and read it there, but I thought I’d highlight some of it so you know what this is, and what you can do!

RESOLVE Advocacy Day: Why Me? Why Now?

Today we are in a unique moment in US history where the future of healthcare reform is being discussed in the halls of Congress. Together we need to make sure that the leaders of this discussion hear firsthand what those touched by infertility need in our healthcare system. There’s never been a time in RESOLVE’s 35 year history where we need you more than we do today. Grab your spouse, partner, best-friend or mom and join us June 25 in Washington D.C. 

On June 25, RESOLVE’s family building advocates will be in Washington DC in an effort to make family building more affordable.

There are ways you can help, today.

1. FORWARD THIS MESSAGE TO A FRIEND
Share this email with family and friends asking them to sign up to become an advocate and stay informed.

2. FACEBOOK
Change your status to: “Today I’m donating my status to RESOLVE’s Advocacy Day–leading the charge for greater access to affordable care for infertility patients.” (Don’t forget to become a Fan of RESOLVE)

3. BLOG
Let your readers know what is going on in Washington DC this week. More information here.

4. TWITTER
Tweet to all your followers: “June 25 is RESOLVE’s Advocacy Day, visit resolve.org for ways to get involved.”

5. DONATE
Make a generous tax-deductible online donation today to help support our ongoing initiatives to increase access to affordable care.

The infertility community needs to be on the minds of our elected officials this summer as the healthcare reform discussions continue. We can’t do it without you..take action, be generous… and stand up and be heard!

Here is a way you can do something in your area!!!

Federal Legislation

  • Contact your Representative and ask them to co-sponsor HR 697, the Family Building Act of 2009.
  • Contact your Senators and urge them to sponsor infertility coverage legislation in the Senate.

Info provided by RESOLVE on Insurance coverage…click the link! Some info about Insurance coverage from RESOLVE

There is also a form where you can submit YOUR story for the RESOLVE group to take to Washington with them!  Below I’ve posted what I wrote for them to take.  I feel like by doing this I can help make changes.  I hope you will all do the same!

“My husband and I have been trying to have a child for 2 years. After a year of trying with no success I was referred to an infertility clinic. Shortly after my first appointment we learned that my insurance does not cover infertility treatment, only diagnostic tests. After about 6 months I was diagnosed with PCOS. From that point on, it has been a struggle and everything I can do to keep going in our journey for a child. In January 2009 we finally conceived a child through IUI. It had taken us almost $5000 in drug costs (which were not covered) weekly blood tests and ultrasounds (also not covered) and the actual IUI procedure (not covered by insurance). We were so happy. It had been a long road and we were pretty much broke, but we were going to have our child. In March of 2009 I lost my child. My insurance did cover my emergency room costs, hospital stay and surgery (d&c). However, now we are trying again. We’ve put another $3000 into treatments and medications. This is our last hope. If we are not pregnant (we will find out on June 29th, though I am not hopeful that it worked) that is the end of our trying. We are out of money now. We’ve spent every penny of our savings on this cycle. My husband is starting school in the fall to become a pastor, and we will have no extra income. If this does not work, we may not get another chance for more than 3 years. We want a baby so badly. My baby will be wonderful, beautiful and an amazing child. I can almost see him, I just can not get to him. It is so frustrating that the only thing stopping my husband and I from achieving our dreams of being parents is money. Money should not be a factor in creating life. People are every day making babies without a second though, though for all of us who are infertile, we want nothing more than our babies. It consumes our every thought, our every dream, our every day. The fact that we are not allowed to be parents just because the cost of our treatments are so high is unconscionable. Please help us to reach our goals. Please help us to be able to meet our babies.”