Why we didn't do IVF in 2012


I called my insurance company the morning of October 4th, 2011 to see if they cover acupuncture because I'd been running into all kinds of information about its possible benefits for fertility. Anyway, they told me they don't cover it but with my health insurance plan I there was a discount program that helps with non-covered things like that.  I went to check out the site to see what acupuncture discounts they have, and they have a section on infertility there!!!!

There were a few clinics in IL that offer a 20-30% discount with this program that would make IVF affordable in the next year ($5600-$8600 instead of the $12000 my clinic in WI charges for one fresh cycle of IVF!).


I found out this out the same day that B and I did our first IUI.  When I went in a couple hours after B gave his sample, the doctor told me that B's count post-washing was a little low.  It needs to be 5 million or higher and his was 4.3.  We had a different doctor that day (Dr. S), with a fresh set of eyes who noticed that his motility has consistently been a little low, so now we were back to thinking it could be male factor infertility again.  In which case, if a couple of rounds of IUI don't work, they were thinking IVF. 

Two weeks later AF arrived and I talked to B's urologist again to see what we should do next.  The urologist recommended doing another IUI to see if we get the same results with B's post-wash counts.  If so, he suggested varicocele surgery for B as an option.  I was devastated because we had emptied out our savings account to spend $1300 on the  first IUI, and now the doctor wanted us to do another just to see if B's numbers are too low to make it worth doing again or not.  Oh, and that $1300?  Yeah, that was my 30th birthday present.  Instead of taking a trip to celebrate, or doing something fantastic together, we chose to spend it on ART.  And of course, it didn't event work.

I contacted the discount program through our health insurance to find out more about how the discount program worked for IVF, as we were starting to think that skipping ahead to something with better success rates would be a smarter move for us, especially given our precious and scarce financial resources.

It turns out, the health insurance discount program (United Health Allies)had a price discrepancy on their website. They advertised the price as $5600 (without meds), but when you actually register and log in with their partner Parent Steps, the price was $8600!

I wrote to United Health Allies on 10/19/2011 to ask why there was such a big difference, and responded the next day, telling me they were surprised to hear about it!  I sent them screen shots and they  investigating the matter at the headquarters-level.... and looked into seeing if they can honor the $5600 rate for us! 

We decided that if they get back to us saying they can give us that rate, we were going to put $5000 into B's flex spending account at work, and then go through with the procedure as soon after January 1, 2012 as possible!

In the mean time, a close friend's sister, who has been through IVF and has two beautiful twin boys to show for it, contacted me telling me she had gathered some of the more expensive fertility drugs commonly used for IVF for me!  She belongs to a mothers of multiples group and so knows lots of people who have and are struggling with infertility.  These meds all came from women who'd had successful cycles and didn't need their left over medications.  She also happens to be a doctor so I trusted the sources of these meds, since she was vouching for them.

My friend's sister secured for me 2 Gonal-F pens, 1 Follistim Pen, and 5 viles of menapur.  This was huge.  She estimated I'd only need to spend less than $500 more on extra meds like progesterone.  Everything seemed to be falling into place, like it was meant to be that we were supposed to do IVF and have our miracle baby in 2012!

Then the roller coaster began.

We had missed my companies deadline to put money in a Flex Spending Account (FSA) for 2012, so if we were going to use that to pay for IVF we needed to put money in the FSA at B's job by December 1, 2011.  I still hadn't heard back from United Health Allies, so I emailed them and called, asking to speak to supervisors.  I made it clear how thankful I was that they were looking into the possibility of honoring the advertised (wrong) rate, but pressured them into giving me an answer because if I was going to do this, we needed to know by December 1st in order to put money in the FSA and afford it.

On 11/30/2011 they wrote back stating that they would honor the lower rate!  I was ecstatic!  There was only one problem, they said we'd have 30 days from the time the incorrect rate was posted on their website to have the procedure done.  30 days from November 30th would not get us to our January 1st date of being able to access the FSA money.  We checked the website daily to ensure it was still posted as the lower rate until we would be in the clear of that 30 day window.

Meanwhile, I scheduled an appointment with the Reproductive Endocrinologist (RE) at the clinic down in IL and spend several phone conversations with my two clinics in WI to have all my medical records faxed down to the new clinic.  I was so nervous that the new RE would make me do all the testing over again, and we wouldn't be able to move forward with the IVF within my 30 day window.

A few days later I spoke on the phone with a higher up supervisor at United Health Allies.  She told me not to worry about the  30 day window.  That is their policy in such cases with discrepancies with dentists offices and such, but not with something as huge as infertility treatments.  I asked her to send that in writing...and she sort of did.  

She also explained that we'd have to pay the entire $8600, submit a form, and then they would reimburse us the $3000 difference.  Okay, except that we had never planned to do IVF in the first place this year, and now were being forced to come up with $8600 within the next 30 days in order to take advantage of this incredible opportunity to save thousands of dollars and undergo a treatment that we couldn't have dreamed of doing for several years otherwise.  So we decided to put the extra $3000 on our credit card (remember, our savings had been wiped out by the IUI in October), and as soon as we got reimbursed we would pay off the credit card.

My appointment on December 12th with the new RE went well, except we discovered that my Follistim pen was expired, so that would cost about another $900 to replace.  Also, given our condition, the RE wanted to do ICSI and assisted hatching as part of our IVF cycle.  There was another $2200!  So about $3000 that we would need to come up with to do the IVF, on top of the $8600 we had to come up with (although$3000 of that would be reimbursed to us).  I was all set to start my IVF cycle in mid January, if I could pay for it all in advance since my health insurance doesn't cover infertility treatments.

So, after a few days of contemplating our options, I contacted United Health Care again on December 19th to see if their offer would still be good if we  waited a few months to save up for ICSI, assisted hatching, and to replace the Follistim Pen.  We thought we could come up with another $3000 by summer 2012.  This is when they dropped another bomb on us.

The woman in charge of the reimbursement department said that the other supervisor had been incorrect, and that I'd only have 30 days from that day to pay for the procedure so I could submit the form and get reimbursed.  I tried to explain to her that it was too late, a woman's cycle doesn't work that way, and I'd missed my window to start taking the birth control pills you have to take for a month before starting the injectable stimulation drugs in order to do the egg retrieval, ICSI, and transfer.  The woman, Angie, was very unsympathetic and suggested I try to pay Parent Steps the basic $8600 in advance, get reimbursed by United Health Allies, and then when we can afford the rest, do the actual procedure.

So that was the plan...

On January 3, 2012, the first business day of the new year, I called Parent Steps to pay the $8600 we needed to pay in order to get reimbursed.  First I gave them the FSA debit card number, for the $5000.  We would then put the $3000 that would get reimbursed temporarily on a  credit card, and I'd be paying the balance of $600 from our checking account.  Yeah.  Of course the FSA card didn't work!

I had trouble calling the FSA representatives because it was a new card through B's employer and I didn't have any information about it.  After a bit of researching, I got a hold of customer service and they told me two things: 1) I couldn't use the debit card for this because Parent Steps shows up to the creditors as an insurance company, and you can't use FSA cards to pay insurance companies; and 2) you can't use FSA money to pay for medical procedures in advance.  We'd have to have the procedure and submit the bill reflecting when the procedure occurred in order for them to send us the money.

Complete. Devastation. 

As I said above, we needed to pay for the procedure in advance to get reimbursed for the $3000.  Now, the FSA was telling me that we couldn't access our $5000 until after we had the procedure done.

I called my grandmother to see if she could loan us the money (B & I both have divorced parents.  I am estranged from my father, his is unemployed, and neither of us have mothers in a position to help us financially).  My grandmother thought she could afford to help us with half of the $5000 we needed, temporarily, until the FSA paid us back.  B called his Dad, who as we guessed, didn't have the money.  We also learned that B's grandparents have deep moral issues with ART and we should never tell them what we were pursuing.  There went any thoughts of asking them for help with the other half.

We decided to see if we could get credit cards from our new credit union that we had just joined.  If we could, we would use that to pay for the other half, and borrow from my grandmother to make up the difference.  We'd get the IVF done asap in order to get reimbursed from the FSA sooner, so we could repay my grandmother sooner.

We had also contemplated not doing the ICSI and assisted hatching, but our new RE advised that it was not worth doing IVF at all then, given our situation.  I had discovered that my RE didn't realize I had the two Gonal-F pens in the fridge at home though, which was enough for me so we didn't need to replace the expensive Follistem pen afterall!  So, in addition to the money my grandmother was willing to lend to us, we'd need room on one or more credit cards for another $4700 in order to move forward with IVF.

Our banker thought we'd be approved for credit cards, but didn't know if we'd have the applications processed and have access to use them by our deadline of January 19th.  He thought a better solution for us would be a personal loan.  We didn't even know you could do something like that.  But he said people do things like that all the time, so we applied and were approved for $7500.  We wouldn't even need to borrow from my grandma after all!

I called my RE and told her I was ready to do IVF asap afterall!

On January 6th, the RE's nurse called to give me a list  of medications that I would need in addition to my two Gonal F pens and 5 viles of menapur.  She also gave me a list of pharmacies to call to compare prices, since most normal pharmacies don't even carry this kind of stuff!  Now I know why.

The additional medications were going to cost ANOTHER $3000!  Insurance covered nothing but the steroid and antibiotics.  Turns out my RE's plan for me was very different than the one my sister's friend had been on, and so her estimates of what we should budget for were inaccurate.  

I spent hours that night researching drug discount programs, grant programs, community sharing forums, and even prices from foreign countries.  In the end, I thought I could get the price down to at least $1500, but still.  What had started as what we thought was a $5600 price for an expensive procedure that we wouldn't have otherwise thought about doing this soon but could pretty much cover with an FSA account, had ballooned into at least an $12000 project (that we supposedly would be reimbursed $8000 for).  

The way things had been going we weren't 100% sure that things would even work out the way everyone had promised and that we'd be reimbursed that $8000.  And we'd be doing it all out of borrowed money.  All except that $600 we'd be using from our checking account.  All with $0.38 in our savings account, and about $2000 of other credit card debt leftover from when B was unemployed last summer.

For the first time during this whirlwind we stopped to reflect on what we were doing.  Things had happened so fast over the past two months, that we had been operating in survival mode.  We never had time to think about how things were changing and assessing whether this was still something we would choose to do, we were just figuring out if and how we could do it.

We spent the entire weekend discussing our options, but in the end, B told me how uncomfortable he had become with the process and that while he would still go through with it for me (mostly because he couldn't live with the consequences of my emotional distress the next few years while we saved up to do IVF later), he was actually scared out of his mind.  He told me that he didn't know what he would do if things didn't work out with the reimbursement of the FSA or from United Health Care.  He said if anything went wrong with the cycle, like we needed to up the medication dosages and buy more meds, or if the meds just didn't work and we'd have to start over the next month, that we'd be done.  There would be no more money to buy more meds.  And he was terrified of what I'd be like if after all this, I didn't get pregnant.  

On that last item, I told him that I'd like to be able to say that I could handle the IVF not working because at least I'd feel like we'd done everything we could.  But the truth is I don't know how I would react.

After he told me how he really felt after everything had changed so much, I decided then and there that there was no decision left  to be made.  We were not going to do IVF in 2012.  Forget this discounted opportunity.  I can't go through all of this alone.  It was driving us apart, and what is the point of bringing a child into this marriage if we were falling apart?

So there it is.  We are not doing IFV this year.  Even as I write it here, it feels so weird to say.  Everything changed so fast that it's inconceivable of how we got to where we are today.  The weirdest thing of all?  Now B is totally on board with all the other baby making efforts!  He is more interested in my cycle and the charting and timing of everything.  Taking this huge pressure off of him has brought us closer as a couple.  We are facing infertility as a team now, and we feel closer than we have in months.

As it turned out, we weren't locked into the $5000 in the FSA until Jan. 10th, so we decided to only put in $1300.  We are going to do another IUI in early February 2012, just like our doctor originally wanted us too.  If B's counts come out of the post-wash the same as they did before, he will go through with the varicocele surgery as soon as possible.  It will take 3-6 months after that to see an improvements, so we'll just try naturally for the rest of the year after the surgery.

In 2013, if nothing changes this year, we'll look into putting more money into an FSA and doing more IUI's or start saving for IVF if need be.

But for now, we're just taking things as they come, nice and slowly, at a pace we are comfortable with.  And we are doing it all together & enjoying each other's company along the way.  I can't even express how different it feels now to have the tension gone, to have support, and to not feel pressured or rushed.  We are in control of our infertility action plan now, and that truly makes a difference.

2 comments:

  1. I followed your post from BBC. All my love to you. When and if you are ready ask for meds. I'm combing for local posts as I have tons of meds left. I am blessed with great insurance and want to make sure I can pass on my good fortune. There will be others like me when you are ready. Also, a local jaycees group may be willing to do an anonymous fund raiser for you to help pay for some of the bills. Good luck and god bless!

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  2. Hi BethMarie! Thanks so much for posting on my blog. Thank you so much for what your are doing to help those less fortunate than you. Isn't it funny that some insurance can bless people so much, while other companies do nothing?

    I'll be sure to look for someone like you when we are financially prepared to tackle this again.

    What is a jaycee's group by the way? Thanks so much for sharing your resources and information!

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