IVF: The Raw Truth – Episode I

I don’t have all the answers. Every fertility journey is different so I don’t claim to know exactly what you might be going through, but I know there is someone out there who has no idea what to expect, or someone who just needs to know s/he is not alone. We had NO IDEA what to expect, and our first doctor wasn’t very good at filling us in. Surely I am not the only one, so I thought chronicling our journey might help someone else. Maybe it will help me, too…

After we found a new doctor and decided to move forward with IVF, we were told to get our finances in order and start taking prenatal vitamins. It felt kind of… un-exciting. It does not happen very quickly like you think maybe it should. You try getting pregnant for YEARS before you resort to IVF so a few weeks/months of waiting for IVF to start really shouldn’t seem that long, but it does. It took a few weeks to get our money together (we had already been saving) and then we called to see how soon we could start. They got us in two months after our initial consultation. (Note: Every clinic is different.)
MONEY DOES MATTER-

After we chose our protocol, I was told the clinic financial coordinator would get with us on how much our prescribed protocol would cost. WAIT! Let me say something here. First– Since our state mandates insurance pay for SOME fertility treatments we had to guess at what all we would pay out of pocket. They had us sign a payment agreement. Second– there is NO WAY the biller at your clinic can tell you exactly how much their services will cost you out of pocket until your insurance is actually billed. Your insurance really decides how much you pay. Also, you have to account for travel, labs or other third party services, and MEDS! The meds are not cheap and most insurances will likely refuse to cover at least one (or all) of your medications. So, what the biller at your clinic tells you is definitely NOT all you will pay. It’s just the tip of the iceberg! Even paying out of pocket there are extra little costs that pop up. Just prepare for it.

Our clinic offers some services for which they don’t even bother billing insurance, like the anesthesia used during egg retrieval, for example. It’s $500. They use a special scope to monitor the embryos for five days following fertilization. It’s called an embryoscope (trademark: Dr. Peter Ahlering/MCRM Fertility). It’s not even been around long enough to be billable to insurance. That’s $800. You can see how the costs add up pretty quickly. Most clinics also require a deposit. At least one small portion of that deposit will most certainly be kept by the clinic. We were lucky. Our insurance out-of-pocket (OOP) was only a few hundred dollars from being met so the clinic waived our deposit, as long as we agreed to pay for all of our clinical services up front, and another $500 to the anesthesiologist a couple of days before retrieval. Most couples with insurance would have to pay twice what we did. Have I mentioned how awesome our clinic is? Well, they’re fabulous!!! (Note: All clinics are different. See a common theme here?)
MEDS, MEDS, & more MEDS –

The cost of meds has really been the biggest shock for me. One cycle for us is about $850 in copays for medications. If we have to do more than one cycle it will be a little less next cycle, as long as we get it in before my deductible and out of pocket reset in January. Note: If you can somehow meet your insurance OOP before starting fertility treatments (particularly IVF) you need to try to do that!! When my OOP is met my med bill will be next to nothing compared to what we paid this cycle! As soon as you know what meds your doctor wants to use, call the insurance or pharmacy (if you’re self-pay) and make SURE how much it will cost you. (Tip: Be sure to ask the doctor or nurse if you will need multiple scripts for the same medication. — I needed 3 scripts for Follistim for one cycle.)
Curious as to some of the meds your doctor MIGHT prescribe? Here is a list of the ones I know about. There are lots of other ones, but this could give you an idea. Keep in mind each of these probably goes by half a dozen different brand names…
*Gonal F or Follistim

*Chlomid

*Letrozol

*Lupron or Luprolide

*Cetrotide or Cetrorelix

*Menopur

*Progesterone capsules, suppositories, or injections (Progesterone in Oil/PIO).

*HCG/Novarel

*Antibiotics (mine is Z-pak / Zithromax, AzaSite, and Zmax)

*Birth Control (maybe)

*Progestin

*Endometrin
We’re well into week one of our first IVF cycle. I feel like it’s kind of the downhill slope and I can finally breathe a little. We’ve had SO MUCH trouble getting my meds from Prime Specialty Pharmacy!!! It took us a month to navigate that shit storm! Now that we have the meds and the only thing we really have to pay for is the anesthesia at retrieval I feel a bit of relief. I’m cautious but more relaxed.

 

I don’t know anyone who has considered or tried IVF who truly knew what they were getting into in the beginning. You read everything you can get your hands on and ask all the questions and you still find yourself completely overwhelmed at some point in the journey – maybe multiple points in your journey. It’s almost like I don’t even know what questions to ask, much less the answers, and quite frankly most medical professionals aren’t very good at making sure their patients are informed enough TO know what questions to ask. In my opinion these OB’s, RE’s, and embryologists should be educating their patients so much they are leaving very few questions in the first place. (Just my two cents.) Given the lack of education, the cost, and the emotional havoc infertility inflicts on everyone, at least one emotional breakdown is inevitable, usually more than one – many in fact. Just trust me! Lucky for us our new doctor and MCRM are amazing and we feel much more secure than we did prior to April 26th this year.
Birth Control Pills (BCP’s) —

My baseline ultrasound and labs were done last Thursday, 7/13/17. That’s considered “Day 1” by my doctor. I was on birth control (BCP) for a few weeks prior so as to get me on the cycle days he wanted. They select about 15-20 couples each month for IVF and every woman in each cycle will be on their period at the same time. I’ve said this before, but I think he must be NUTS to want 15 women on the rag all at once! I feel sorry for the nurses/clinical coordinators. I know mine has spoken to me every single weekday since I started the BCP’s. This journey is HARD and Aunt Flo is a bitch in my experience. Add the insane stress that comes along with all things IVF and it’s a recipe for a nuclear meltdown! Oh! If you go on birth control don’t think it will mean you get a break from Aunt Flo! I have been off the pill for 11 years. I went on the BCP’s on Day 3 of my period in June and was on them for about 5 weeks. I spotted the ENTIRE TIME! 😡 Talk about pissed! I thought we could have a sexual free-for-all. I was bloated and oozing. Who would want to have sex with THAT???
INJECTIONS–


I’ve heard all different stories about the Follistim. One consistent report is they burn. They don’t just sting. They burn like you splashed boiling water on your skin, and for me the burning spreads all throughout my abdomen. I’ve done 5 shots so far. BUT, you do get used to it. Honestly, they’re tolerable for me. I just did one about an hour ago and I don’t feel terrible, just a little uncomfortable. It’s like a dull burn.
We go tomorrow for our first ultrasound and labs since we started the injections. I’m nervous, but I’m just holding onto hope. It’s all I can do. What choice do I have? Like I said, I don’t have all the answers, but here is some info that might help you out…
This is what I’ve learned so far (Tips and Tricks for staying – somewhat – sane):

* Ask your doctor or nurse for a list of every single medication you could possibly need for your treatment!!! — When we started this I was told to call my insurance to see about how much it would cost for medication. I was told to ask about progesterone, Follistim/Gonal F, HCG/Novarel, and Cetrotide. It turned out I also needed Lupron, Menopur, and a Z-pak. Also, I needed 3 separate scripts for the Follistim (so 3 separate copays). None of this was explained to me until after I got the call from Prime Pharmacy to setup delivery and they told me I owed them $900 in copays – which was wrong, by the way, because Prime is stupid and doesn’t understand what a “met” Out is Pocket is! This brings me to my next point…

* Dealing with the insurance will most likely be one of the most frustrating parts of this entire journey! — Seriously folks, if I was rich I would pay for this out-of-pocket just to avoid dealing with my insurance! Every person I speak to tells me something different, and the pharmacy apparently does not know the phone number to my insurance company because they have failed many times to call them when they should have. Thank God for my clinical coordinator at the doctor’s office because she is a saint! I don’t know any other nurse on this planet who has spent the number of hours on the phone with an insurance company that my nurse has. If you are lucky, you will have help from your clinic like we have had. If not, prepare to spend a lot of time on the phone with your insurance. And you should expect a lot of stress… and cussing. I hope not, but you should be prepared.

* Don’t do anything you don’t want to, but don’t make medical decisions based on money. You can make more money. You can’t make more eggs, and you can’t avoid regret if you don’t follow your gut. DON’T ignore your gut!
This post is crazy long, but it should get you started. Feel free to reach out. This stuff is NOT easy!!!! Until next time…

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4 thoughts on “IVF: The Raw Truth – Episode I

  1. Please know that most insurance plans actually do *not* cover IVF, so advice about dealing with insurance is unfortunately for a select few. The rest of us – like my husband and I – have been paying out of pocket, and therefore can only go as far as our savings accounts and credit cards allow us. We’re out $60K+ after multiple cycles and failed adoption, and insurance only covered the birth control pills, which were free.

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    1. Yes, of course. That is the case for many people, but either way I am helping someone if they do have insurance to know what to expect. I am in no way ungrateful for my insurance, believe me! I hope o don’t sound like I am complaining. It’s just that I had this fairytale idea that having insurance would make not only the financial side easier but would also make the overall experience easier. Unfortunately, because the pharmacy my insurance forces me to work with is absolutely terrible, A LOT of stress has been imposed on us.
      Obviously, I can only speak for my own experience, but most of my cycle-mates at my current clinic report they have also been able to bill many of the services involved with their treatments (mostly IVF, some IUI) to their insurance plans. For those who do have insurance, I hope my advice does help because the insurance company has caused a good amount of the stress we have faced in all this. It depends on your insurance plan, whether your provider is contracted with them, and how your provider bills as to whether your plan will pay any of the costs. Like I said, many of our services are not even billed to insurance at all. More and more insurance policies are covering some fertility services/treatments. It has been my experience at both of the clinics we have been to that a good number of my fellow patients are able to bill some or most of it to their insurance policies. I am sorry that is not the case for you and your husband.
      Infertility is a sensitive subject. I often find myself most emotional when it comes to the financial side of it. We ARE very lucky that my policy does cover much of it, but we also make less than the “average” national income, so what might not seem like much money to a lot of folks is quite a bit to us. $60k is more than we make in a year. I could not imagine!!! I’m sorry you’ve had to go through all of that. One of the men in our cycle class at the clinic made a remark that anyone who doesn’t go ahead and pay the $3250 for the genetic testing must be stupid. It’s a service that our clinic will NOT bill to insurance so everyone who chooses to do genetic testing pays that amount. I was pretty upset that he was so flippant about it. I was particularly upset because we had just openly discussed with the entire class that we were bypassing the testing and going for a fresh transfer instead of frozen, so he was aware we were skipping the testing and then called those who don’t do it stupid. It’s so hard not to get upset when I see couples who can afford the “platinum level” services when we are more along the lines of “silver level”. Before we were able to afford IVF I used to get upset about people who could afford it when we couldn’t. I just have to remember to focus on us, what we ARE able to do, and doing what we think is best for US. Knowing what others have done is helpful but I should never judge my own journey against someone else’s. I would never want anyone to judge their decisions and experiences against mine. My objective is to help by sharing what I know, and to put my thoughts out there so they don’t build up in my own head and make me crazy. I understand the frustration that others don’t see things from my perspective and have had an “easier” experience than I am having. I wouldn’t want to “rub it in” or seem ungrateful because I know some people might believe we have it easier than they do. But if we are honest this is hard on EVERYONE who goes through it, no matter what graces or struggles may come their way. I wouldn’t wish this on anyone and hope only the best for anyone who is facing it.

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      1. Only 20% of health plans have IVF coverage, and only five states mandate coverage for it in the US. Not having insurance coverage means people who are forced to pay out-of-pocket usually only end up getting to try one or two times. For us we had to use a donor as well so our first cycle was $17,000. We have Blue Cross and none of our medications be on birth control were covered by their formulary. None of what I said was knocking you, just trying to educate that 80% of us are paying out-of-pocket or not doing it at all because of the lack of coverage out there. When you come out of six rounds of donor egg IVF and miscarriage, and have paid for it out of pocket and therefore don’t have any savings, it is different than having tried it and still having your retirement. Not saying that in a “pain olympics” way, just recognizing that there are different levels in this process and there is less stress if you don’t have to give up your retirement savings to try to have a kid (just like how pregnancy loss is difficult for everyone, miscarriage is different than stillbirth). We only wish our doctor had offered us genetic testing as we went through 9 embryos unsuccessfully.

        But never accused you of trying to rub it in… Just trying to show a broader perspective.

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      2. Perhaps I am making a poor assumption here, but I think most people understand that some insurance’s won’t pay for fertility, and if they don’t understand their OWN insurance coverage they are already a step behind. I think they also clearly understand that I’m just telling MY story and every story is different. Also, even people with insurance are spending their entire life savings on fertility treatments (IVF or not). Please don’t assume that I am not aware of the broad picture. I know lots of people aren’t covered for this. Our state happens to mandate that insurance cover some fertility treatments, including some (not all) that are used during IVF. Also, don’t assume that my retirement is intact. It’s not. I have ZERO savings and he used all but 10% of his savings so we could get our foot in the door at this clinic and try ONE cycle. We are screwed if anything goes wrong between now and September. We are robbing Peter to pay Paul. We had to ask for an extension from our landlord last month and used the “grace period” for the first time on my car payment. We are praying this ONE cycle works and we are told we have about a 50% chance. We did a fundraiser and accepted help from family, too. I have three college degrees but make less than $25K/year, and he makes less than $30K. If you read some of my other posts you will see that some of the methods used at our clinic are far more advanced than what is offered at many clinics (& aren’t billed to insurance because they’re new) and that this is our first IVF cycle. We tried for a year using medication with timed intercourse using a different clinic that did not offer any of the advanced options that are available to us now. We spent about $1200 doing that, plus travel costs because there aren’t any clinics doing fertility treatments anywhere less than an hour from where we live. We now drive 200 miles round trip for every ultrasound, lab draw, office visit, and procedure. We will still pay a portion of retrieval, transfer, and remaining labs, even after what we have paid so far. I am truly sorry for all you have been through and that your doctors didn’t offer or have some of these options available to you. Those who do have insurance and/or do have similar experiences to mine might be thankful for my post(s). I know I am always thankful for every bit of info I can get my hands on!! The more I can learn the better chances we have to avoid another tragedy. At least that’s the way I look at it. Seven years ago I had my first MC. A year later I lost twins at 13 weeks. Eight months later we had another MC, and then again last April. My best friend since kindergarten had a stillbirth on my birthday three years ago, just as she was getting into the third trimester. Another of my friends was burned over 60% of her body as a child and had to give up hope for ever having kids because of her other health problems. She’s an attorney and makes in a couple of months what I make in a year, but she can’t get approved for adoption because she is divorced and works too much, and she’s too “unhealthy”. I have 5 adopted cousins and my dad and stepdad are both adopted. My story is far more complex than what I am able to put in a blog, but it helps me to blog, and I’ve had several people tell me reading my posts has helped them. When it comes down to it, it’s all about getting through the day and deciding for myself what move to make next -whatever works for me.

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