The Personhood Bill

First of all, I have to hand it to politicians for coming up with the common name of some of the bills they put through Congress – names which instantly strike an emotional chord and make you feel guilty if you were against it.  The Personhood Bill, aka the Sanctity of Human Life Act of 2009, aka H.R. 227 and H.R. 212, is a great example of one such bill.  Introduced into the House in 2009 by 61 representatives – 59 of which were men, 1 of whom is Paul Ryan, current GOP VP candidate – and later died, only to be taken up by individual state congresses.  The goal of the bill, and its subsequent spawns, are to declare as law “that human life shall be deemed to begin with fertilization.”  Meaning that the minute a woman’s egg is fertilized that little zygote is a human, a person, a US citizen with all the rights and protections of any other citizen in the country.  Meaning that any means to destroy that cell – the Plan B bill, early-term abortions, or discarding of embryos (relative to practices in IVF) – is tantamount to murder and punishable by law.

Sidenote – You can see why Representative Todd Akin might be a little hesitant to back down from his position that abortion shouldn’t be legal even in cases of rape since he co-sponsored this bill.

While this bill doesn’t have a chance of becoming national law – at least not yet, it has been brought up  in several states.  The implications for infertilites are pretty stark, especially for those for whom IVF is their only option for achieving pregnancy.  (This might mean you, fellow unicornuate or Mullerian anomaly sisters).  During IVF, several embryos are typically created for selection for the IVF process.  Depending on the doctor and the circumstances, the doctor might choose to transfer several embryos into a woman at a time with the odds that one of them will stick.  Some doctors, depending on the situation, would only transfer one embryo though several might have been created.  The remaining embryos are then frozen for another cycle or research, or they are discarded.  With Personhood legislation, each one of those embryos would be considered a person even at that early stage, with full rights and protections, meaning to discard of them would constitute murder.  This means that states with this legislation would see the number of IVF specialists dramatically decreasing as they move to neighboring states without such restrictions.  IVF practices under Personhood would also decrease that clinic’s success rate, especially if they choose to create and then transfer only one embryo at a time – creating an expensive cycle of trial-and-error for patients as they would see greater numbers of visits and transfer attempts.

As I mentioned, several states have brought Personhood bills forward for public voting or referendums, including Virginia, Oklahoma, Georgia, South Carolina, Colorado, Mississippi, and Arizona – all of which had their own takes on what “personhood” entails.  To my knowledge, none of them have passed – but it’s been close, especially in Oklahoma.

My advice to you: Next time you vote – tomorrow! – make sure you know what kind of laws might be up for public voting in your district, and just what you’re voting for or against!

PS: Mitt Romney was the only GOP candidate during the debates earlier this year to not sign the “Personhood Pledge” to support Personhood.  As governor of Massachusetts in 2002 he firmly attested to a woman’s right to choose; as a presidential candidate ten years later he hypothetically supports pro-life legislation, though we don’t know if that’s his true stand or if he’s just trying to woo moderates / independents any way he can.

 

Obamacare and infertility

So us women were lured into supporting Obamacare (aka the 2010 Affordable Health Care Act) for the promise of increased coverage of women’s health issues.  We get free birth control now, as well as well-woman visits and increased funding for mammograms and a host of other preventative health care measures.  Yay!  That means more money in our pockets and an affirmation that since we do go through a little bit more on the health side (especially related to fertility) than the opposite sex, and that we’re also responsible for the continuation of the species, that we deserve to at least not have to spend our $.72 cash earned on the man’s $1 on making sure we can do that in a healthy manner.

So great, now we get more recognition for being valued by society as productive individuals with a voice and a contribution to make.  We put off building a family for becoming better educated, earning more, starting a career, etc., with the help of all this birth control.  Then we try to start a family – once we’re financially secure – and find out that we can’t.  Where do we turn to for health?  Surely Obamacare has thought of this caveat of women’s independence.

Well… no.  Sorry ladies, there’s no provision in the President’s health care package that specifically covers any kind of assisted reproductive technologies or treatments.  There’s also no provision that outlaws it, either – so I guess no news is better than bad news.

In the meantime, here’s the good news:

  • There are currently 15 states which mandate that insurance companies provide some kind of coverage for infertility treatments: California, New York, Texas, Massachusetts, Illinois, Ohio, Connecticut, Georgia, Hawaii, Arkansas, Maryland, Montana, New Mexico, West Virginia and Rhode Island
  • For the other 35 states, there may still be coverage provided depending on the individual insurance company – so ladies look into your insurance’s policies next time open enrollment comes around.
  • A bill has been proposed in the US Senate to create a tax credit for out-of-pocket expenses related to infertility treatments: the Family Act of 2011.  Although this doesn’t decrease the immediate burden of ART’s expensive price tag, it might provide the wiggle room for some couples to pursue avenues previously too prohibitive.

Of course, all of this good news has the potential to be wiped out with the passing of the Sanctity of Human Life Act, otherwise known as the “Personhood Bill.”  More next post.

My sources consulted:

Choosing a fertility clinic/doctor

I am fortunate enough to live in a metropolitan area where I actually had a choice in reproductive endocrinologist offices.  I realize not everyone has that kind of choice and that I am very lucky to have had the opportunity to seek assistance from both for different reasons.  But when it came down to choosing which one to stick with for my treatment, after some investigations it became pretty clear.

There are two clinics each within 25-30 minutes of my home, and the only ones available for a 50 mile radius.  Fertility Clinic A has been in the area for 25 years, has one doctor and two physician assistants.  Fertility Clinic B has been in the area for maybe 15 years and is one of three locations in the state.  Clinic B also has a spa associated with it that includes services such as acupuncture, yoga and other exercise programs, massage, nail care, waxing – basically the works.  My friend B. actually used Clinic B because of their suite of services and their locations, which allowed her to travel to her home and still receive the same level of care with familiar faces.  Clinic B was my first introduction to fertility clinics by way of B., who wanted to sign up for yoga classes together.

Now, if you are lucky enough to have a choice in clinics or doctors, you can always start the decision making process by looking up the statistics on the Society for Artificial Reproductive Technology’s website, which publishes IVF success rates for every clinic in the country.  But numbers don’t always tell the whole story.  Some clinics might turn you away if they deem you too high risk, which might offset their numbers.  And personally I like percentages rather than wholesale figures.  For instance, Clinic B’s SART report shows over 1500 attempted IVF cycles in 2010 while Clinic A had about 200 IVF cycles reported in that same timeframe.  No doubt a lot of this is attributed to the largess of Clinic B, with three locations and at least one or two doctors at each.  Maybe the smaller number of Clinic A would make people feel nervous – do they have enough experience to really help me (even though they’ve been around for 25 years)?  So consider the percentages: of Clinic A’s 75 IVF cycles in women less than 35 years of age, 53% resulted in a pregnancy.  Clinic B had a whopping 652 IVF cycles for women younger than 35, but only a 36% pregnancy success rate.  There’s much more detailed information on the SART website about these numbers, so be sure to check it out.  Unfortunately, the numbers only detail IVF procedure success, not other therapies such as IUI or medicinal treatments.  It still left me with a little bit of uncertainty as to who to pick.

I decided to try some of the alternative medicine and spa services available through Clinic B, which by the way is a spa open to the public.  I signed up for a month of yoga for fertility classes last summer, took a free fertility nutrition workshop, and enrolled in a “ladies’ night” event where you could sample 4 different mini-spa services in one night.  The yoga was probably what you’d expect a yoga for fertility class to be – easy, relaxing, not very strenuous at all and probably couldn’t count as bona fide exercise.  The nutrition workshop was kind of interesting but a little too on the hippy-side for my taste (the instructor brought hemp pesto to try with almond flour crackers as an example of one of her recipes), and she kind of started by saying that while we could base our nutrition on the Chinese medicinal tables and our own idea of our symptoms, the better way is to meet with an acupuncturist to get an accurate idea of issues with your chi.  I get it, it was a free class, you’d probably expect them to sell you on something.  But it was the ladies’ night’s atmosphere that led me to really shy away from the place.  I paid $60 for what I thought was going to be 2 hours of services, and because of the disorganization turned into 3 hours.  The first part was meditation, where about 20 of us (there were about 60 women total) sat with a therapist who led us through guided meditation.  But then she asked us to share “Who came to meet you in the garden?”  I felt extremely uncomfortable sharing my personal experiences.  Next up was a chair massage, which I would do again with the same masseuse in a heartbeat, and was the most genuine part of the whole experience.  Then it was time for acupuncture – that was really the reason why I went, to see what it was all about.  The acupuncturist asked, “Any pain? What are you working on today?”  “Well, I’ve been trying to get pregnant…”  And after telling him an abbreviated story, he essentially said, “Clomid doesn’t work, acupuncture does, I’ll get you some handouts and my card.”  Having just started the clomid that left me with little hope and wasn’t the reaction I expected from someone who presumably gets his business from the clinic downstairs.  The night ended with a mini-facial (“I would recommend you make an appointment for the cranberry scrub”), a paraffin hand wax and “makeover” which was really just getting matched with a Jane Iredale (all natural) foundation and lipstick.

If you ever have the opportunity to sample services, even peripheral services like these that might be offered by your clinic, or a support group – go ahead and give them a shot before making your final decision.

While Clinic A has none of these fancy offerings, I was afraid of going to Clinic B and having them sell me on the services as part of my treatment plan.  The spa at Clinic B was already trying to sell me tons of products (they really looked at me funny when I didn’t buy anything in the gift shop); what would their medical staff be like?  I know B. saw an acupuncturist regularly, and at $60 a rip I felt like it would be a financial drain (“the more often you go, the better it works”).

It turns out there were a few more philosophical and humbling differences between the two clinics as well.  Clinic B’s entire building smells good.  It smells like the spa, like sugar and flowers and fruit and all kinds of other yumminess.  The clinic’s waiting room has 12 inch travertine floor tiles (money!), a fireplace, leather couches and recliners, dim lighting, bookshelves and DVD racks (all available for purchase), and a K-cup machine for you to make a nice beverage.  Clinic A has tile floors and carpeting, two separate waiting areas (one for the lab and one for your appointments), innocuous magazines to read and tvs tuned to news stations, bright and sunny lighting, and a single-serve coffee maker (not a K-cup) available to use.  One significant difference – Clinic A has a fragrance-free philosophy.  As fragrances are the #1 cause of VOCs (volatile organic compounds – not good for anyone, especially infertilites and fetuses), no one in their office wears perfume or lotions with fragrance and they ask their patients to do the same.  There are no scented candles or air fresheners or nice smelling scrubs in the bathrooms, as there are in Clinic B.  For me that was a signal that this place was about business more than appearances, and helped make me feel confident in making that choice.

Sure, there’s lots to be said for patient-doctor relationships too – you just have to feel that it’s right for you, that you’re in good hands.  But I also urge you, if you have the capability to choose, to consider reading between the lines of the entire business model before committing yourself, your partner, and your future family to a clinic.

If Mr. Hyde was an infertility patient

My husband has really been a trooper about all of the testing and doctor’s appointments. He’s even subjected himself to two separate sperm analyses at two separate labs – first at the bright and shiny new fertility clinic last summer, then again a few weeks ago at our current fertility clinic (the one that’s been open essentially since IVF has been around, 30 years).  Our current clinic wanted to do another test because “We have a little higher standards and look for different things than the other clinic does.”  Oh, okay. A mild embarrassment for him yet a relatively painless procedure, and compared to what I’ve been put through he didn’t complain.

He received his results on a Saturday, sent right to his online patient website.  One of the findings of this test was a term unfamiliar to both of us – “macrospermia.”  It isn’t exactly an easy term to find even on the internet, and it was often paired with or used as a synonym for “necrospermia.” And I’m pretty sure I can figure that one out without a dictionary.

Essentially, his sample was full of dead or really disfigured sperm.  Or, as he calls them, “Monster High sperm.”

Sidebar: Monster High is some kind of tv show that our niece is obsessed with; I think you could probably guess the concept from the title and the picture above.  Our niece has more MB dolls than Barbies and loves them, even if their hands and arms do tend to break off the doll at an alarming rate.  Or maybe it’s more true to character, if they’re all dead anyway?  That’s Clawdeen pictured above, just so you know.

And of course, you get this news and once again the tunnel-vision settles in: We could be dealing with a double whammy.

Given that his first test was “normal” at the other clinic, and this one was a huge fat zero, the doctor recommended that he repeat the test in a few more weeks.  This time at the clinic, rather than collecting the sample at home and bringing it in.

He’s a little excited about that idea just as much as he is skeeved out by it.  He’s had a peek at the collection room – comfortable lounge chairs, a television, a collection of magazines and movies.  You would think that a sperm bank would have the most efficient material available, and I think that’s what he finds interesting.  It’s more of an anthropological dig in his mind than it is a serious medical facility. I can’t wait for a full report – to find out if 50 Shades of Grey is included among the material for all the press it’s gotten in the last month.  I’d probably even read the book, just to join in the water cooler discussion, except I read a review that said it was Twilight fan fiction but with enough details to not get the author’s ass sued.

I’ll pass – I already have enough monsters in my life…

“Everything feels normal” and other lies

OK, I’ll give you that the first stage of grief is denial.  It would not be an unusual reaction to any negative news, therefore, to immediately think, “That can’t be right.”  But when I was blindsided by my UU diagnosis back in September I actually began to have serious doubts about all the other health care practitioners I had ever come into contact with.

Having moved several times, I have been to about 4 or 5 different OB/GYNs or primary care practitioners until that point.  And each one of them during my annual examination would say, “Everything seems normal.”  I distinctly remember one doctor pushing on my pelvis very hard with the butt of her hand, saying, “There’s an ovary…  and there’s an ovary.”  How could so many doctors have gotten it “wrong?”  How could they tell me everything was normal and later discover everything wasn’t?

Of course they were right about my having two ovaries; it still seems doubtful that’s something they can feel from the outside of the body.  I’m sure there really is no practical way to identify if there were two “horns” during a physical examination.  So they weren’t wrong, not at least about that.  But that example just exemplifies the lack of information, awareness, and proactive treatment of infertility in the medical profession.  Infertility is a problem that you don’t look for until there is a problem.  But with a statistic like 1 in 6 couples of reproductive age experiencing infertility, shouldn’t we be advocating for a little more proactive and aggressive diagnoses?  Maybe if I had known at 26 when I got married that I was a UU I might not have waited to try knowing what I know now about my chances of getting pregnant naturally.

I don’t think it’s fair to say that the doctors didn’t know what they were doing when they were giving me their clean bill of health, so to speak.  The x-ray was only first discovered in the late 1800s, and so in the last hundred years how much further have we really come in finding ways to unintrusively examine the body?  Ultrasounds (now in 3D and 4D) and sonography, CT scans, and MRIs – and that’s it.  Genetic research has been around since the 1960s but only in the last twenty years have we “unlocked” the human genome.  Modern medical research is stymied by political agendas, big pharmaceutical company lock-outs, and expensive rigorous testing for approval, a process that could take several years.  I am nearly as old as the first “test-tube baby,” born in 1978.  Reproductive endocrinology is still a fairly young science, and with all the information doctors need to keep track of nowadays it’s no wonder that screening for congenital anomalies and other causes of infertility aren’t exactly on the top list of priorities for doctors.

Even still, it’s hard to have faith in going to anyone but a specialist – if only to save yourself the time of having to run through the details of your own diagnosis and its implications for your treatment.  There’s no denying that.

This Bud’s for you, kidney

Since I was first diagnosed with UU and it was even suggested that I might have one kidney, I’ve been trying to make the most of the situation using some self-depricating humor, mostly with my husband but occassionally with a friend aware of my situation. While I’ve been trying to conceive for 18 months I’ve stayed relatively far away from the alcohol, or only imbibed when I knew I was in the clear for that cycle. My family makes it difficult because they really like to drink, and suddenly refusing to have alcohol in their company would probably raise a few eyebrows and give me looks of disapproval, much less start the gossip mill. And the last thing I need is my grandmother on the phone asking “Any news?” more than she already does every week.

Anyway, it’s pretty rare that I have a drink and I’ve become a cheap date because of it. And instead of cheering, “Down the hatch!” I would say something like, “Get to work, one good kidney!” I know for some people that may not be funny, but for me in order to get through this you have to have a sense of humor about it all. 

When I found out the results of my MRI, that indeed I have a left-side unicornuate uterus, 2 ovaries, and 2 kidneys, I had two glasses of wine that night – one for each kidney to work on. Keep up the good work, guys!

Sharing with strangers: “That’s fun!”

On today’s episode of Sharing My Infertility Story with Absolute Strangers: the bloodwork laboratory technician!

Meet your bloodwork laboratory technician who’s going to perform your fertility workup today. She’s got a bucket – yes, a bucket – full of empty vials, and every single one of them is going to be filled today. She’ll ask you to spell your name and identifying information, just to make sure you haven’t sent in a patsy to take your place. Then she’ll look pointedly at your right arm, tie the tournaquet, poke at the inside of your elbow and frown. This is where you say, “The left arm is usually better.” Without an argument, she accepts your offer of the alternative arm and agrees with your vein-viability assessment. The only unfortunate part is that the blood-drawing leather loveseat you’re in (I told you this hospital was secretly a spa) doesn’t have an arm table on the left side, so you’re stuck sitting in the chair sideways with your left arm stretched across your body.

I have had horrendous experiences giving blood both for blood donations and for simple blood tests.  People either hit the vein or they don’t. If they’re not experienced enough, they don’t even think a vein is there. Twice I’ve had to have the pediatric butterfly needle used on me. I’ve had multiple pokes, I’ve had digs (which are the absolute worst), and I’ve had collapsed veins.

On today’s episode of SMISWAS, the tech hits the good vein the first time and despite drawing a bucket full of blood, your vein doesn’t collapse or give her a hard time.  BUT just because there wasn’t any vein drama doesn’t mean there won’t be plenty of awkwardness!

*Thup* The first vial is attached and starts filling with blood. “So will this be your first child?” What a way to start a conversation. “Yes.”
“How long have you been trying?”  *Thup* Next vial.
“A year and a half.”
“Have you done IVF yet?” Woah, a little personal!
“No.”
“My husband and I have been trying for two. I have hyperthyroidism.” *Thup* “I had my thyroid removed in December.”
I note the pink scar on her neck. “That must have been very difficult for you.” I had switched into counselor mode and had wanted to tell her I was sorry to hear that, but in some other meaningful way – because when you’re struggling with infertility the last thing you want someone to say is, “I’m sorry.”
*Thup* “Yeah, it was.” The conversation seemed to stop. So I thought I’d volunteer my story, since it seemed we were sharing…
“I have a unicornuate uterus.”
I never expect to hear this answer from a medical professional but unfortunately I hear it all the time: “What’s that?”
“Basically I have half a uterus.” *Thup*
“That’s fun!” She means that statement. It’s not sarcastic at all. “I mean, not fun for you, but fun.”
I wasn’t sure what she meant. “It showed up as a deflated balloon on the HSG.”
This is where the other technican jumps in – either to save her colleague from continuing down the insensitive, flippant path or just out of curiosity – “Are you draining your patient?” she said, laughing at the sound of yet another vial being tossed into the bucket.
“Yep, draining her. And as a matter of fact – ” she pulls out the needle and wraps up the wound – “I need you to sit here for a few minutes because I took so much blood from you.” I watched as she wrapped individual labels on each of the vials, presumably with my information and the test intended for the vial. She asked me how I was then dismissed me. I mustered up a “Thank you, have a nice day,” although part of me really wanted to wish her luck.

Part of me wanted to acknowledge the pain and disappointment that I know she’s experiencing; but then part of me was angry at her comments and wanted to punish her for not being more sensitive to a fellow grieving infertilite. I felt her comment “That’s fun!” came out of some place of anger, like anger that her thyroid was removed and mine wasn’t. But I’m not angry at her for having a (presumably) normal uterus; I feel sorry for her that she might feel anger or jealousy towards me even though we’re in the same boat.

So writing this post now I think I should have been a better person and wished her good luck. After all, when there’s that much negativity, depression, sorrow, hurt, and guilt already surrounding you from these endless trials, there is more of a need for hope and love than there is for spite.