Thursday, December 13, 2012

In the News...

I wanted to bring to your attention a couple articles that caught my eye recently. I found them pertinent to our discussions here and I hope you take the time to read them.

The first one is "How Older Parenthood Will Upend American Society" by Judith Shulevitz, which appeared in The New Republic:

It's a sobering read about how the graying of American parents is affecting the makeup of many generations to come. This article covers many aspects on this topic. The main one that jumped at me was the paradigm shift that has come as a result of the correlation between significant rise of children born with mental and physical disabilities (genetic mutations, autism, schizophrenia, etc.) and the increased age of the respective fathers. It appears that the proverbial ticking clock may no longer be limited to women, but now men need to become much more aware of when they choose the finally have children.

The other highlight for me was the obvious, nonetheless painful reality of the brevity of human life -- "A woman who is 35 when her child is born is more likely than not to have died by the time that child is 46." Many couples that I know undergoing IF treatments are in their mid-thrities. Somehow it feels completely normal -- after all, many are educated, professional men/women, who wanted to accomplish certain things before being surrounded by diapers. I wonder how it will affect the sociological conversations for the next generation in terms of caring for older parents at a younger age and future healthcare entitlements for the rest of us "older parents" (with dwindling numbers of babies, who will care for us and how will our care be payed for?).

The article does raise the question of IF treatments and its effects on the wellbeing of the next generation and the lack of regulation of this industry.

Which leads me to this next article: "Are Infertility Doctors Turning into Predatory Bankers?" by Peter Ubel, which appeared in Forbes:

This brief article covers the murky waters of the for-profit IF treatments (the more patients an RE has the more money he/she makes, thus possibly offer more treatments than necessary) and the kickbacks REs receive from referring patients to loan companies that are supposed to help pay for the exorbitant IF treatments.

This reminded me of two important topics that I always bring up: 1) Sadly while we look to our REs as these heavenly beings who are going to make our dreams come true, in the end, it is a business transaction. So if you are not getting 100% of your RE/clinic, you can always take your hard earned money elsewhere. And 2) we MUST continue to advocate for our cause and press our lawmakers to get insurance companies to provide greater/full coverage.

Monday, August 20, 2012

Affording Infertility Treatments (Revisited)

I had previously covered various options you could explore in order to afford infertility treatments. I wanted to repost my entry and also direct you to this article from US News, which in part highlights similar options, along with a couple of additional ones.

What else would you add to the list?

"Dollars and Cents: Affording Infertility Treatments"

I was contacted by a reader desperate for some information on affording infertility treatments. Considering the cost of treatments and everything that precedes and follows an actual IUI or IVF, I hope this entry will be helpful to many of you (who reside in the US).

Insurance Coverage/Plans:

First I want you to read your insurance plan very carefully. Unlike the owner's manual to your television, when it comes to your insurance plan, the fine print could give you the most important information regarding infertility coverage.

Find out if you live in an infertility treatment mandated state. For instance, New York provides mandated coverage for IUIs and medications. While Massachusetts residents will be also covered for IVF. Don't limit yourself to your state of residence -- if your employer is in a mandated state, they must offer infertility coverage (let's say you live in NY but work in Connecticut). Some insurers will cover at various percentages while others will give you a "lifetime" maximum amount of dollars to go towards your infertility treatments.

If you are lucky enough to have coverage, make sure there aren't any provisions and pre-requesits to the coverage. In some fashion, they will ask that you prove your infertility. (No, they do not read your blog, but they should.) Also, when you're gearing up for a cycle, make sure you check with your insurer to obtain a cycle number and that you have a letter confirming your coverage for that pending cycle.

Even if infertility treatments aren't covered, some tests (blood or surgical) are often times part of your basic coverage. So for instance, if your RE recommend a hysteroscopy but your insurer won't pay for it if it's done by a specialist, don't be afraid to seek the help of your gynecologist to perform the recommended procedures or tests.

If you're required to pay out-of-pocket to then get reimbursed by your insurer, you have to stay on top of it like your life depends on it (in this case, your wallet). Many insurers will deny claims, to eventually approve them after you've spent hours fighting about it. If you know your coverage inside out, you will be surprised at how much more you know than the representative on the phone. I've said this on countless occasions: you must be your strongest advocate.

With the upcoming changes in the Health Care Bill taking effect in 2014, you will no longer be denied insurance for preexisting conditions. But keep in mind that if  infertility coverage is part of your current plan, it will most likely be dropped by 2014. Universal health care may be coming at the cost of your infertility coverage.

Lastly, if your employer has not signed up to cover infertility, then pick up the phone and call HR. Make your case. Sixty five percent of employers who cover IF said they do so because their employees asked for it. So, petition your employer for IF coverage. Here's a sample letter.


Some pro-bono agencies provide infertility coverage grants offered by Fertile DreamsINCIID and the Cade Foundation. They come with strings attached and are incredibly selective (at times discriminating). But it's certainly worth the shot. Before you commit to any program, be mindful of the restrictions that are involved with pro-bono grants. Here's a link to important questions to ask when reviewing your grant options.

Shared-Risk Programs:

When you take into account the exorbitant cost of multiple rounds of IVF, some clinics and third-party companies are offering what they call "shared-risk programs" or package-deals. These programs cover multiple cycles with a money-back-guarantee if none of the cycles end in a live-birth. Expect to pay a larger sum upfront but you will have peace of mind knowing that you have 4-6 cycles before it all runs out. Depending on the plan offered, after 2 cycles, the consecutive cycles come to a fraction of the cost of just one cycle. Keep in mind though that these programs, similarly to grants, are very selective (FSH, age, past history and reasons for the infertility will be closely scrutinized). Also, they will not cover preliminary tests, medications and certain aspects of the cycle (like the anesthesia).

On a personal note, after paying for 4 IUI and 4 IVF cycles mostly out-of-pocket, we opted for a shared-risk program. The program initially rejected us but we pleaded our case via our new RE. They accepted us, we payed $30K. The first cycle with the program worked.

Other Options:

Medications -- All clinics have donated or left-over medications (injectables or otherwise). This is the time to work your people skills with your nurses. Also, when your RE calls in for your drugs, they often don't qualify whether they approve generic or brand name. Generic drugs are just as effective as brand names and cheaper.

Flexible-Spending Accounts -- Employers offer flexible spending accounts. Use them! If you know you're going to do a cycle (or more), a flexible spending account will allow you to put some of your hard earned pre-taxed money towards your treatments.

401(k) -- Some 401(k) plans allow you to dip into your savings for medical purposes without any tax penalties. This should be a last resort option as you are taking a great risk by dipping into your future for treatments that cannot guarantee success.

Clinical Trials -- Fertility clinics have on going clinical trials. Ask your RE if they are working on any trials that you may qualify for. Make sure you understand what's involved, what's covered and how beneficial it will be to you.

Create an Infertility Fund -- How many of us have received useless gifts for holidays and birthdays. If you have come out to your loved ones about your struggles, I would encourage you to open up an infertility fund. This is also the time to reach out to your community. You may be surprised by the outpouring of support. In the same spirit, contribute to your own fund by doing some spring cleaning. You must have countless things that are buried in the depths of your closet (or house) that you have not touched in ages. Put them up on eBay or do a yard sale.

Lastly, keep records of all of your infertility related expenses and all other medical expenses. If they add up to more than 7.5% of your adjusted gross income, you will receive tax benefits.

Thursday, August 2, 2012

Well friends, someone has made your dreams come true. Someone just sent this to me and I knew I had to share it.

We've talked about how we dislike Facebook for all of its ridiculous comments and baby pictures (unless they're ours). This app. will refresh your feed to replace all baby pictures with cats and dogs.

Haven't tried it myself, but sounds promising.

Thursday, July 26, 2012

Male Factor Infertility (MFI) Follow-up

I've already shared with you the basics of male factor infertility (MFI) in an earlier entry (benchmarks, tests, general options), but a recent discovery is worth revising this topic.

According to this article in Scientific America, researches have managed to decode the human genome of a single sex cell. Unlike other cells, sperm and egg cells contain only a single set of chromosomes. This discovery will enable scientists to decode the genetic makeup of your partner's sperm. The hope is that it may finally give some answers to those suffering from "unexplained infertility" and will hopefully become part of the standard testing done during RE visits.

This sequencing of a full genome from a single sex cell, like the sperm (and maybe some day the egg), is expected to become available for infertility lab uses within the next five years. In the meantime, there a few options that are worth mentioning:

  • PICSI: While ICSI is commonly used in fertility clinics, surprisingly PICSI is not as prevalent. In essence, PICSI is a sperm selection method that allows embryologists to select sperm beyond just their appearance (remember morphology and motility of the sperm?) and then be ICSIed (yes, I used it as a verb!). This method entails placing the sperm in a dish that contains Hyaluronan. This is a substance found in the cells around human eggs -- and in other tissues. The theory is that mature and most importantly sperm with good DNA will bind to the Hyaluronan, hence be selected for ICSI. For what it's worth, we used this method at our last IVF cycle at CCRM. 

  • SCSA: This is another test available, perhaps closest to this new discovery, that allows us to find out more about the DNA of the sperm. SCSA (Sperm Chromatic Structure Assay) is a sperm DNA fragmentation test. In other words, it looks to find any "breaks" in the DNA of the sperm, which can be one of the reasons behind recurrent miscarriages -- sperm and egg meet, embryo is formed but quickly dies because of fragmented DNA. Now the question is, is it worth doing this test if ultimately even if the results came back positive for high fragmentation you (a) would continue to try using your partner's sperm, or (b) you would not consider using donor sperm? Those were the questions posed to us when we inquired about it with our RE. There may be value in testing if you are near the end of your rope and need to find closure.
With every discovery we seem to be coming closer to finding some answers for the millions of couples struggling with unexplained infertility and MFI. 

But like technological advances, scientific advances are very quickly replaced with other more promising discoveries. 

Would any of the above sperm selection options give you the closure you would need to stop pursuing infertility treatments if you found out that your partner's sperm just doesn't seem to make the cut?

Friday, July 20, 2012

I'm Still Here...

It's hard to believe that it's been nearly a year since I've blogged. Hard to believe in part because this blog and connecting with all of you has been such an integral part of my life.

We talk a lot of the silence of infertility and not being able to live openly with our truths. But it seems that over the course this past year, I have also failed to speak my truths. So, in order to find my way back into this loving community, I must confess that I went through an experience I never though I would ever go through: I became pregnant, just like that. I'd heard stories of couples trying for years, finally conceiving (or adopting) and then, puff! ... another baby. I'd always shrugged off those stories as fabrications to keep our hopes alive and was infuriated when others (meaning people who'd never experienced infertility) would tell me how so-and-so stopped trying and then they had a baby. Idiots!

Imagine my surprise February 2011 when I found out I was pregnant. The feelings I went through were certainly not what I would have ever expected. I was for the most part flabbergasted. I went about my days trying to analyze how this was making me feel. Happy? No. Over-joyed? No. I suppose I was so convinced that I would never conceive again (we weren't trying, I have one tube, PCOS and MFI) that finding out that there was another being growing inside of me left me dismayed.

I took the next few months (nearly 5!) trying to process that we were going to have another baby. I was thinking of how I would break the news to my circle of women who I'd brought together as part of my peer-led support group. How I would share the news with the rest of you -- readers, bloggers, commenters. After all, this blog is not about my personal journey, it was created to bring you information from the perspective of someone who's made it to the other side. And so, I remained silent {I did obviously come out to my support group}, not wanting to hurt anyone's feelings. Perhaps also fearing that you would not feel safe anymore to share your stories with me because now I had become the "other."

As my due date approached, I decided to finally embrace my baby and needed some time to disconnect from all that was infertility. And then, in early October, my surprise baby girl was born. I have spent the last few months, mostly in complete chaos, caring for my kids, helping my son adjust to his new life as a big brother and move into a new home. It has been hectic, to say the least and yet, it all seems so "normal." It's almost as though I am living someone else's life -- like the infertile-me is looking through the mother-of-two-me in complete awe of how things turned out. So that's how others were living their lives while I was going in for daily blood work and injecting myself with countless drugs just a few years back.

I have not stopped thinking of all of you and quietly checked in with your stories. I cried for those who lost their babies and lots their hope. And jumped for joy at your birth announcements.

I'm not sure if I have any readers left. I do know that my passion for this struggle has no waned in the slightest despite my great blessings. I will continue to write with the hopes that I can help, if only in a small way, those of you who turn to me for guidance and support.

With love,
The Infertility Doula (SM).

Monday, August 15, 2011

Limitless Possibilities: Twin Selective Reduction

Being an infertility vet, you get to hear a lot of harrowing stories and meet some incredible women who have had to make difficult choices along the way in their quest to build their family. One that has come up a few times is selective reduction -- a process that reduces the number of fetuses in a high-order gestation, usually triplet and up. It is rare, however, to pursue selective reduction when carrying twins, as twin gestations have become much more common these days. While there are still risks involved with twins, doctors are far more knowledgeable about the necessary precautions to be taken in order to facilitate a healthy pregnancy and delivery. 

The process of selective reduction involves injecting potassium chloride into the heart of the fetus(es), leading it to stop. It is probably one of the hardest decisions one can make: how do you choose which one of your babies should die? In some instances, the results from a prenatal screening makes the choice more obvious (albeit, still as painful), while others leave that decision to the random selection by one's doctor (position and access to the babies). 

I have had friends who were faced with this heart breaking decision; all of whom opted to reduce from triplets to twins. So when I came across this article in the New York Times Magazine by Ruth Padawer -- "The Two-Minus-One Pregnancy" -- I was amazed to read that twin reductions are also common. Similarly to the silence we experience when going through infertility, there seems to be an even greater taboo when it comes to opting to reduce a twin pregnancy to a singleton.

I leave it to you, dear followers, to draw your own conclusions, judgements  and questions when it comes to this specific type of selective reduction, but here were some of my thoughts that I'd like to put out there:

  • Not everyone who chooses to reduce a twin pregnancy to a singleton pursued infertility treatments, but for those who did, is the stigma attached to the twin to single fetus reduction not a reminder for the REs to transfer fewer embryos -- ideally a single embryo -- rather than transferring 2,3,4 or more in order to ensure implantation?
  • While the final decision of how many embryos to transfer is left to the patient and her doctor, many infertility patients who are receiving either limited or no insurance coverage (i.e., paying out-of-pocket for each treatment) request that at least two or more embryos be transferred to increase the odds of success and not having to undergo any further treatments. If insurance companies covered IF treatments, would fewer women find themselves in this difficult position of having to terminate one or more of her fetuses?
  • As infertility patients, do we take the risks of high-order multiples too lightly seeing so many twins and triplets strolling down our neighborhoods or on TV? While each failed cycle leads to the next, are we too quick to want to "complete" our family in one shot and not taking the time to evaluate our physical, financial and emotional limitations? (I am not referring here to women who transfer a single embryo that then splits up.)
  • A lot of the language used by the women interviewed for this story refers to their desire to be the "the best mom possible" for their children. Some of these women already had children while others were simply overwhelmed with the idea of parenting twins. Either way, they deemed that having a singleton would allow them to "perform" at the highest standards. I wonder how much of our societal pressures to be "super moms" affected the decisions to pursue selective reduction? Is being an "imperfect" parent truly that horrible? Aren't' all generations brought up by so-called imperfect parents and somehow turn out okay? 
I leave you with a quote about the duality of choices by bioethicist Josephine Johnston from this riveting article that continues to stir in my mind as I put it in various contexts:

 “In an environment where you can have so many choices, you own the outcome in a way that you wouldn’t have, had the choices not existed. If reduction didn’t exist, women wouldn’t worry that by not reducing, they’re at fault for making life more difficult for their existing kids. In an odd way, having more choices actually places a much greater burden on women, because we become the creators of our circumstance, whereas, before, we were the recipients of them. I’m not saying we should have less choices; I’m saying choices are not always as liberating and empowering as we hope they will be.”

I look forward to reading your comments. 

    Monday, June 6, 2011

    Feminist Views on ART, Surrogacy, Egg Donation and Adoption

    C. over at The Infertility Revolutionary brought this fascinating issue of The Scholar & Feminist online, a webjournal published by the Barnard Center for Research on Women, titled "Critical Conceptions: Technology, Justice and the Global Reproductive Market."

    The webjournal is comprised of lectures, documentary excerpts and papers presented during a series of conferences dedicated to discussing the new world of reproductive technology from a feminist point of view.

    I have had the opportunity to read through most of the material and have found them all fascinating. There are important questions that are being discussed here, some of which I found potentially controversial and others central to our personal debates on these relevant issues.

    The topics covered are the "baby making business," the legal aspects of infertility coverage, egg donation and surrogacy in India, the identity implications of donations for the offsprings, our societal portrayal of surrogates and the global "trade" of today's adoption process.

    I encourage you to read some it when you find a little time. I'd be happy to discuss any specific articles that you would like.