The following is a guest post from Renee Whitley, volunteer advocate with RESOLVE: The National Infertility Organization.
My first experience with infertility advocacy came out of a sense of sheer frustration. I was sad that my body could not do what it was supposed to do naturally. The bills for our infertility treatment were piling up. We certainly could not afford what we were spending on medication and treatment. To add insult to injury, our insurance covered none of this. Then I read that our Georgia governor at the time, Sonny Purdue, had compared infertility treatment to plastic surgery. I got angry. And I was on lupron. Bad combination.
I sat down and wrote a letter to my state representative and my state senator asking if they would sponsor infertility insurance coverage legislation in Georgia. I read it, checked for errors and hit send.
The next day, I got a phone call from my representative. He and his wife had suffered from infertility and surprisingly enough, had used my same doctor many years earlier. That was the day that Georgia House Bill 1012 was born. It died in committee later that year but it existed and people learned from it. I always like to show people the letter in one hand and the bill in the other just to make the point that one voice can make a difference.
Several years later, in 2009 under that very same Gold Dome of the Georgia Capitol, I learned that more than 100,000 united voices can stop a movement.
That was the year we saw one of the first of the “personhood” bills get a lot of traction. The original version of Georgia SB169 was presented to the public as sponsor Senator Ralph Hudgeon’s solution to California ‘s “Octomom” situation and was artfully surrounded in language about the health and well-being of Georgia’s women and children. Hudgeon’s “solution” was to (a) limit the number of eggs that could be fertilized; (b) limit the number of embryos a doctor could “implant” in a woman’s uterus; and (c) ban all embryo freezing. In other words, it would have set fertility treatment back about 30 years. These limits not only violate nationwide medical practice standards, but also go far, far beyond anything warranted to prevent octuplets. Indeed, they would restrict IVF out of existence.
What would the effects of these limits be? We don’t know which eggs will fertilize after insemination and which will become viable embryos. So, the Senator’s proposal would increase the number of cycles a woman would have to go through to achieve a pregnancy, seriously upping the cost to patients. Infertility doctors would be forced back to a 1970s-era standard of care to treat their patients. It is hard to believe they would choose to stay in Georgia if this law passed.
Studies have shown that couples with insurance coverage for IVF routinely transfer fewer embryos than those without insurance coverage. This leads to fewer higher order multiple births and makes the new ASRM standard of a single embryo transfer much more financially feasible for couples facing infertility. So, if you really want to reduce the rate of high-order multiple births, you provide insurance coverage for the diagnosis and treatment of infertility. Why wasn’t he doing that?
This was never his intention at all. Buried in the first version of the bill was its true intention and purpose: a provision known as “personhood.” At the time, this movement had been quietly advancing for at least eight years and had gained legislative traction in states throughout the country since 2005. “Personhood” would endow an embryo or pre-embryo, at any stage after sperm meets egg, with the full legal standing of a living, breathing person. Essentially the personhood movement was seeking to legislate when life begins in an attempt to undermine the original Roe v. Wade argument. There would be no “woman’s right to choose” because there is no woman in the argument. The embryo is equal or even more valuable in its own legal standing.
The year Georgia SB 169 was introduced, it gained a great deal of attention with the hoopla surrounding the Octomom scandal. Additionally, the world’s largest biotech convention was headed for Atlanta later that year, so the time was right for certain groups to try to make a big political statement. SB169 was that statement and the majority of the Georgia Senate was determined to make that happen.
What they did not count on was the massive, collective roar from a group that had been fairly silent until 2009. Current and former infertility patients.
I had been a long-time advocacy volunteer with RESOLVE: the National Infertility Association. We posted frequent updates on RESOLVE’s website, with letters of opposition to send to the Senators. Our three wonderful Atlanta clinics sent emails to their patients, past and present, urging them to take action and linking them to the RESOLVE website for instructions. Nationally, the media was paying attention but many reporters missed the forest for the trees. Instead of recognizing the legislation’s true purpose, they focused on the embryo transfer limits – not the embryo creation limits and certainly not the ramifications of not being able to freeze any remaining embryos. So there were hurdles.
But women and men showed up at the Capitol in masses, ready to testify if needed. Some brought their children, some brought pictures of children, some brought pictures of embryos from prior cycles. Some, sadly, had no pictures at all. But they all had stories to tell. And they talked.
What still inspires me was the amount of privacy people gave up in order to fight this legislation. One RESOLVE volunteer, who has a very southern family that does not discuss topics like infertility, came to the Capitol to tell her story in front of a Senate Committee. I told her that if she felt she was giving up too much privacy, then she did not need to testify. She looked at me, squared her shoulders and said that she was doing this for her daughter, born through IVF.
Another woman made cards to give to all legislators. On the front was her daughter; a curly-headed sprite of a girl in front of the Statue of Liberty. Just like Lady Liberty, she had her arm raised in triumph. On the front was her birthdate. Inside it said, “Three IVF cycles, 32 eggs retrieved, 17 eggs fertilized, seven embryos transferred. One little girl. Lucy.” She wanted the legislators to understand that, out of 17 fertilized eggs, only one became her little girl.
One moment I will remember always came during testimony from Dr. Andy Toledo, at the first of three committee hearings. Having just listened to testimony from a pro-life doctor about the great benefits of similar embryo restrictions in Europe, particularly in the U.K. Dr. Toledo made short work of his argument. He pointed out that in the U.K., most couples have coverage for their cycles: IVF is covered under the national health care. And there are no bans on the number of eggs fertilized or freezing embryos. People in the room erupted into cheers and applause! I have never seen that kind of response at any committee hearing! Outwardly, I managed to keep a serious face but inside my heart soared! As he deftly refuted the previous testimony, the standing-room only crowd, complete with strollers, broke into cheers two more times. The committee chair actually had to threaten to hear only closed testimony!
Throughout the week-long time frame leading up to the Senate floor vote, RESOLVE constituents sent more than 100,000 emails and faxes to Georgia’s Senators. Fax machines throughout the Capitol were out of paper and supplies of toner were running low! It was estimated that at least 50,000 more letter against the bill were received as well.
These voices and the people at the Capitol-they made the difference. The Senators were forced to rewrite SB 169 several times, each time backpedaling to remove provisions we objected to. One senator referred to us as …”that hornet’s nest of infertility patients…”
The day of the floor vote, patients, moms with strollers and even some grandparents were packed outside the Senate chambers, watching the floor debate. Doctors, patients and advocates throughout the country were were watching via live feed. Our champion in the senate, Senator David Adelman made an eloquent plea to table the issue. Others preferred to lob derogatory rhetoric like hand grenades on a battleground. Senator Preston Smith compared a couple who have battled the disease of infertility, who have embryos in cryopreservation; he compared them to slave owners. He linked embryonic stem cell research, the same research that is going on at some of our best universities in the U.S. and Georgia; Harvard, Stanford, Georgia Tech and University of Georgia, to the hideous experimentation suffered by Jewish victims of the Holocaust at the hands of Joseph Mengele.
After the fact, a friend who is a long-time lobbyist at the Georgia Capitol told me that the “stroller brigade”—the dozens of moms with their infertility-treatment babies in their strollers, had actually won this battle. And the strollers and babies did make an impact! But I also remember the guy who would come every day on his lunch hour, clutching a picture of the two embryos he and his wife had recently transferred on a failed IVF cycle. They were saving money to try again. And the wonderful woman who testified about her son born through IVF, and then commented on-camera to a reporter that “I guess my mom and dad know we used IVF now…”
The final version of SB 169 that passed the Senate that day was a very different piece of legislation than the one that we had battled. Anything related to personhood had been removed. It was sent to Georgia House and was never heard in committee. Another lobbyist called it “a political a**-kicking.”
Without the response from the people that took the time to come to the Capitol, send emails and faxes and make phone calls, this legislation could have become law. A law that would let the state appoint a guardian for your cryopreserved embryos and tell you what you could or could not do with them. A law that would gut the sanctity of the doctor/patient relationship. A law that would dictate the terms of treatment between a patient and her physician.
William Saleton of “Slate” called what we witnessed in Georgia that session, “the birth of a movement.” For the very first time, we saw infertility patients, both pro-choice and pro-life raise their voices as one and shout a resounding “NO” against personhood. No, you will not use my disease, my medical treatment and my family as pawns in a political game. No, this legislation, this strategy is a tactic that will take away my chance, my hope of having a baby. No, the government has no business dictating the terms of my infertility treatment.
I want to thank “Parents Against MS26” for giving both current and former infertility patients in Mississippi a forum for their voices to be heard. You may not think that one voice or one story about infertility can make a difference but I can tell you from experience that it does.
I think every southerner knows just what happens when you poke at a hornet’s nest.
