Wednesday, November 7, 2007

To Whom It May Concern

Mel is putting together stories on how having or not having insurance coverage for infertility influenced people's family building. If you'd like to contribute, please hop on the bandwagon-- this thing apparently stretches as needed-- write your post (try to keep it to four paragraphs), and send the link to Mel, preferably by tomorrow.

Dear Ms./Mr. Important,

Some days the knowledge that we live in a mandated coverage state is all that is keeping me sane. Please let me explain. I am a 33 year old woman, who was diagnosed, eight years ago, with PCOS-- Polycystic Ovarian Syndrome, a condition afflicting roughly one in ten women in the United States, and a leading cause of infertility. At the time of the diagnosis I could not become pregnant as I was not ovulating. I chose to attempt to treat my condition by modifying my food and lifestyle choices. After over a year of hard work I started to ovulate on my own. Some months later I finally got pregnant, only to miscarry. Two more months and I got pregnant again. I was lucky enough to be able to carry that pregnancy to term and to give birth to my beautiful daughter, who is now five and a half years old.

On January 30, 2007 my family was visited by tragedy-- our beloved son died in utero at 34.5 weeks gestation from what the medical examiner later ruled to be an accidental pulling shut of two true pre-existing knots on his umbilical cord with a group B strep infection as a contributory cause. To say that our lives have been changed would be an understatement. I miss my son every day. The room that was meant to be his is woefully underused, its freshly painted walls a cruel reminder of how fragile our realities are. Listening to other people talk excitedly about their pregnancies and their plans for "when the baby is here" is hard for both my husband and myself. Many, many things are hard. My daughter now has to explain to new friends that she is a big sister, it's just that her brother is dead. All three of us long to add to our family, not to replace the baby we lost, a futile and impossible task, but because none of us feel as if our family is complete.

Attempting pregnancy after a devastating loss, knowing for sure that it can be you, that babies die, even the most wanted and loved babies, is an act of defiance and hope. Unfortunately, for us trying again brought new heartache and new bad news. My PCOS has possibly progressed beyond the point where non-interventionist solutions are possible, and we have recently found out that my husband's sperm have a serious motility problem. Our best chances of having another baby likely lie in the procedure called ICSI-- intracytoplasmic sperm injection, which is used to overcome male fertility issues by introducing a sperm directly into an egg. In addition, because I have PCOS, I am at statistically higher odds of developing OHSS, ovarian hyperstimulation syndrome, while undergoing stimulation with assisted reproduction technologies.

None of these possibilities are particularly pleasant to contemplate-- all involve significant physical and psychological challenges and an uncertain outcome. What is making this ordeal bearable, however, is knowing that we live in a mandated coverage state. Mandated coverage means that decisions about our medical care can truly be medical. We won't have to weigh the danger of overstimulation against the cost of a canceled cycle, and wonder whether we will be able to afford to abandon the attempt already in progress. We won't have to weight the danger to my life and health and to the lives and health of our potential children of a possible multiples pregnancy against the cost of a failed cycle. Instead, we will be able to choose to transfer only one embryo per cycle, perhaps increasing slightly the number of treatment cycles we will have to undergo, but decreasing significantly the odds of pregnancy complications, the need for NICU care, and long-term issues associated with prematurity. See, mandated coverage is not only the right thing to do, it is also smart policy. It won't just give many more women a chance to feel a life grow inside of them, and many more families a chance at building the life they desire, it will also take the dollar signs out of medical decisions, and in the process, ironically, will likely save money.

I believe that in the grand scheme of things it is impossible to deserve to have a baby. The happiness a child brings to the family is beyond something one can deserve, ever. But I do believe that regardless of the accidents of our particular biologies we all deserve a chance to try. So please, Ms./Mr. Important, do the right thing, do the smart thing-- extend mandated coverage to the entire country. Because everyone deserves a chance to try.


Bereaved mother,


Lollipop Goldstein said...

I love love love this line: "But I do believe that regardless of the accidents of our particular biologies we all deserve a chance to try."

And the balance of taking the responsible path sometimes makes it the more expensive path. Coverage would encourage the best choices.

Beruriah said...

I'm applauding you virtually! Fabulous letter Julia. So many perfect points I can't choose just one to highlight.


niobe said...

Your letter is fantastic, although, just speaking for me personally, I have kind of mixed feelings about mandated coverage. Without it, it's extremely likely that I wouldn't have done IVF, wouldn't have conceived the twins, and, obviously, wouldn't have lost them.

So, just speaking for myself, the lower financial costs are more than offset by the higher emotional costs. For many people -- in fact for most people -- the balance would probably work out differently.

meg said...

Yeah, your letter is amazing. I wish we had this mandated coverage thing up north too.

Anonymous said...

Your letter is great, Julia.
Does mandated coverage mean that they actually pay all of your IVF cycles etc? I know that it is limited to 3 in Germany, and I haven't figured out the public coverage situation in Spain. Given that private insurances offer fertility treatment in special plans, though, I'm not expecting too much.

Julia said...

Thanks so much, everyone.

Amelie, the mandated coverage here is for 3 IVF cycles plus more if one of the first three gets to some point (I don't remember which). But you can also switch the insurance coverage to your spouse's if you end up exhausting all the coverage in yours. So it's at least 6 cycles. And normally, if there are no issues that dictate that IVF should be tried right away, you get some number of IUI cycles first, and you would generally have to fail 3 of those to start IVFs.

AmyinMotown said...

Never commented here before, but MY this is brilliant. I want to go back and rewrite mine now. Prayers for you as you work to build your family.

Anonymous said...

This is a beautiful letter, Julia.

I love "Because everyone deserves a chance to try."

Lori said...

This is a fantastic letter! I hope someone of "importance" gets the chance to read it.

IdleMindOfBeth said...


First, thank you for your comments on my blog. It's always nice to know that "someone out there" is reading what I write, and I LOVE finding a new blog to read!

More important, thank you so much for sharing your story. My heart aches for the hand you & your family have been dealt. My thoughts and prayers are with you as you continue your journey to complete your family.

littleangelkisses said...

Thank you for writing this. It shows how coverage would in fact foster responsible healthy choices.