Tuesday, May 3, 2011

advocacy day, part 1

Thursday is Advocacy Day, and I am sad I can't be there. There's nothing that would make me happier than to march up the steps of Capitol Hill with thousands of other men and women and bitch about ovaries, uteruses, and testes for an entire day.

All joking aside, Advocacy Day is a big deal, and I've always wanted to attend. It's a day that allows us to send a message to those on the outside that says: "We are important, and we have a voice."

I've been working on a letter to send along with an awesome friend who is attending, and I'm having trouble writing it. (Yes, I'm actually having issues writing down my opinion. Who ever thought that might happen?) So, I thought I might get some inspiration from all of you, and - in a sense - create an open letter on this blog about what YOU want said on Advocacy Day. I will include the link to this post in my letter, because I think it's crucial that EVERYONE has a voice and that there is no finality to what we bring to Capitol Hill on Thursday. We need to provide lawmakers with a living, breathing, every-changing testimony of our experiences. I'll also post the letter here when I've completed it.

That said,

What is the one thing you would say to your lawmaker about infertility? What do we want them to know not only about the disease, but also about our personal journeys?

13 comments:

Ryan and LeDawn said...

I am not good with words, but while going thru IF there were certain things that made me angry. for example - there is always an ongoing battle about abortion. If abortion is (or ever will be) covered by insurance than what about the right to create life? It's frustrating how much money we have to dish out to do IVF, IUI's and so on. But to destroy life has a small cost. I also wish that adoption wasn't so expensive. When we were looking into that option I was hopeless. We were poor, just out of college, kids who wanted nothing more than to have a family. We had spent any extra money we had on treatments and most definitly didn't have the thousands it takes to adopt let alone the nice house, cars... etc that most agencies make you list so some 14 year old girl will hopefully choose you. I guess what I am saying is I wish it all were more affordable to become parents however that may be. That insurances covered more and giving children proper homes was easier on everyone. Hope that makes sense. Like I said, I am terrible with words. I wish I was good at writing like you. Thank you again for your honestly and all you do with this blog!

S said...

Maybe because we are getting close to doing our DE IVF cycle and this question is weighing on my mind at the moment. . . . I would address how lack of insurance coverage for IVF leads to more couples transferring two embryos at a time and risking twins. (Our clinic has a 40% rate of twins for DE IVF cycles.)

Really, even if lawmakers don't care about the human costs of infertility or high risk pregnancy--and let's face it, I'll bet many of them don't--it would be cheaper overall to fund IVF than to pay for the complications which are more likely to arise with a twin pregnancy than with a singleton.

If, G-d forbid, I conceive twins and they are born premature and require time in the NICU, that will cost my insurance company tens of thousands of dollars. The likelihood of that could be greatly decreased by doing eSET, but we refuse to risk a BFN when we are spending $30K out of pocket for DE IVF.

Kechara said...

I would add that I would like to see a law that required insurance companies to pay for a procedure or test that they would pay for if the reason listed was something other than infertility. Almost half of the $1400 we paid out of pocket in the last year for non-covered tests ($635) was for testing to rule out STDs. If I had gone in a month later for my yearly exam and asked to be tested for STDs just to be safe, that $635 would have been covered by insurance. Either way, it's vital information about my health, but the fact that it was during an infertility visit instead of a yearly visit cost me a large part of our personal savings.

Rebecca said...

I agree with what was said above. It infuriates me that my insurance would cover me if I got drunk, climbed a tree and fell and broke my arm but won't cover even tests to determine why it is that my body can't perform a normal human function through no fault of my own.

I wish I could go to DC, but I'm with all of our advocates in spirit!

Kakunaa said...

Wow...wish I could go. I would have to think about your question...too much to say...

AL said...

I wish I could go too.

It's awesome you're sending a letter along w Mic.

As others have said, getting IF testing and treatment covered is the biggest thing that I'd love to see changed.

Hannah said...

I can speak from both sides of this issues...as someone who dealt with IF for 5 years before becoming pregnant with my twins on our 9th IUI.

What I want law makers to understand is that denighing issuance coverage for medical conditions is not aloud with other diseases and should not be aloud with IF. Being born with low sperm counts, PCOS, endometrosis, or unexplained IF is no different then being born with a cleft pallet, diabetes, heart disease, or any other birth defect. Insurance companies cover issues like all the time and should not be able to exclude ovaries, uterus's and testicles just because they say that it is a "choice" to have a baby. It was not a "choice" to have parts that require medical intervention. It is not a "choice" for a woman seeking treatment. She NEEDS the treatment, just like someone with heart disease needs treatment for their organs that are not working correctly.

I can happy report that I did get pregnant with my twins after 9 IUI attempts and 5 years of heartbreak. We spent about 90,000 total on our IF journey. My insurance covered none of it.

I went into pre-term labor with my twins at 29 weeks, they were born at 32 weeks, both fighting to survive, one with life threatening breathing issues the other with a life treating staph blood infection. We watched our twins code for 4 hours before they could be made stable. We were so close to losing them. My twins were in a level 4 NICU at a premier hospital for 32 days and it cost over $1 million dollars. My insurance covered all of it, plus my labor and delivery (60,000), my 3 weeks in the hospital (40,000) along with all my prenatal care (including the once weekly u/s)
Grand total: over 1 million 1 hundred thousand dollars.

It is outrages that the insurance company would not want to just cover the IF treatment to begin with allowing us to move on to IVF with one embro eliminating the risk of multiples and the high price tag that comes with them.

Law makers need to be made aware that this is a disease and that its not a "choice". No one made the choice to become infernal, just like no one chooses cancer.

amiracle4us said...

I would like them to realize that if they see IF as a disease (with associated ICD-9 codes) and all other diseases are treated under insurance, then why is IF not? If one suspects cancer, insurance not only pays for the testing up to diagnosis, but the treatment of it from there on out. Same with MS. diabetes, depression, hypothyroidism, hypertension (should I continue?). I don't agree that some states have manditory coverage, while others have nothing. I don't agree that NY covers the costs of IUI for woman on welfare (true story), but NC won't cover IUI for me; a hard working, healthy, law abiding, responsible woman desperately wanting a child. They will pay for anti-anxiety drugs or anti-depression drugs that are needed by thousands of infertiles, bc they are infertile, but not help pay for the treatment that will take those symptoms away.
I want them to know that we aren't aching for breast implants to help increase our confidence, we are asking for a child. A life. We are asking for help to be able to conceive and birth life; something so many take for granted.
Along with that, we need more adoption help. International and domestic for those that chose that route due to IF or not. They need more social workers to be able to process applications and match families more quickly and with less mountains to climb.
I want them to know they could help us; if they chose too.

PCOSChick said...

I wish they could live a week in our shoes. I wish they could know what it was like at 19 to be told you will not have children & have surgeries; more than any person should have in a 10 year period-just trying to feel better..not even to have a child.

They need to feel the pain; both physical & mental when you loose your ovary & tubes at 28.

Sadly, they will never be able to fully understand..I can only ask that lawmakers find it in their hearts to try to understand....to listen!

Keiko said...

I plan on saying this to as many people as I can tomorrow in DC:

What if this were you? What if you found out the way you thought you would build a family was suddenly taken away from you without your choice? Would YOU want coverage and support from your insurance companies, your lawmakers?

Thank you so much for writing a letter and having it sent down there for you. Great stuff. Off to go read your letter now.

Keiko said...

Katie, your letter is just beautiful, painful, and so well written. I wish I could meet you tomorrow. *hug* Really, REALLY well-written.

Kim said...

Thank you for writing these letters katie (I can't seem to comment on your most recent post) But I want you to know that I admire what your doing. You are representing a whole group of us who mever make any progress if people like you didnt speak up and do what you do. I love your passsion and I completely understand being tired of fighting two batteles. You are my hero. :)

Michaela said...

I would want lawmakers to know that this isn't something that "Wasn't meant to be". It is a vital system in my body (like your nervous system or digestive system) that isn't functioning properly and NEEDS medical attention.

No one would say to someone whose digestive system wasn't working "Well I guess you're not MEANT to eat" they would fix it and cover it by insurance!