PUBLIC DISCOURSE: What We Don’t Know Just Might Kill You
By Jennifer Lahl
January 30, 2015
Recently, I wrote about Brittany Maynard joining the ranks of countless “nameless, faceless egg donors,” as we say in our film Eggsploitation.Those who recognize Brittany’s name will know her as the young woman who received a horrific diagnosis, in the prime of her young life—glioblastoma. Just typing the word makes me shudder. As a nurse, I’ve taken care of patients with this diagnosis. I’ve lost friends and loved ones to this brain tumor. It’s a diagnosis for which there is no cure. All today’s medicine can offer patients with this diagnosis are treatments that may buy time, with a potential tradeoff between quantity and quality of life.
When I wrote about Brittany, I didn’t write about the fact that she left California to move to Oregon in order to be in a state where physician-assisted suicide is legal. I didn’t even write about the way in which the physician-assisted suicide debate seems to be creeping—actually, barreling—back into my state of California, with Brittany as the hero for the cause.
Instead, I wrote to talk about a tragic case of a young woman who was given a death-sentence diagnosis of glioblastoma, who happened to have in her medical history the fact that she was an egg donor. This information came to me from a source who wished to remain anonymous, and who, because she was very close to Brittany, knew that Brittany had been an egg donor. My source reached out to me because she was aware of my work exposing the risks, known and unknown, to young women who make the decision to donate—or considerably more often, sell—their eggs, which is what Brittany did. I was contacted because this person was worried that this decision might have played a role in Brittany’s developing a glioblastoma.
This contact came to me over a year ago, and for a year I searched, inquired, and sought the counsel of many. Finally, I decided to speak out about this. I decided to speak out mainly because, as our film Eggsploitation states over and over, there are way too many dirty little secrets in the infertility industry. These dirty little secrets exist in large part because we simply do not track, monitor, or follow up with the young women who “donate” their eggs. As one expert says in our film, “once they [the clinicians] are done with her [the egg donor], she’s gone.”
The Secrets of the Fertility Industry
What are these dirty little secrets?
First, egg donors aren’t tracked over their lifetimes. There is no registry of egg donors, so we have no idea what the long-term effects on young women’s health are. What studies we do have are on infertile women, a patient population with an underlying pathology. In Eggsploitation, we interviewed Dr. Suzanne Parisian, the former medical director for the FDA. She stated:
The girls who donate eggs, after they’re done with her, there’s no numbers, there is nobody saying how many of those girls go on and have complications or problems . . . she doesn’t appear anywhere in the medical literature. She doesn’t appear in any kind of tracking or government oversight. She is gone.
Lest you think a registry of egg donors is an unattainable ideal in today’s medical climate, please note that we do have cancer registries and organ donor registries.
Second, there are no major peer-reviewed studies on the long-term effects of super-ovulation on the otherwise healthy population of egg donors. Dr. Parisian emphasizes the risks and complications that egg donors can experience:
The list of dangers for egg retrieval in women would include: the ovarian hyperstimulation syndrome (OHSS), which would, in and of itself, put a woman at risk for pulmonary complications, fluid imbalances, stroke, death . . . you can have all the complications of a surgical procedure, because you have a laparoscopic procedure; you can also have, in the future you can have adhesions, so you can have problems getting pregnant or difficulties in the future.
This lack of studies provides problems for proper informed consent. Parisian goes on to say:
I think there is not an adequate informed consent [procedure]. I’ve seen some informed consents when they will say, “Well, there may be a risk of cancer.” Well, you need to say, “The studies have never been done to see whether there is a risk of cancer.” And that’s a different statement than saying, “well, we just don’t know.” It’s one thing to say they don’t know the risk; it’s another to know that nobody’s going to look either.
Financial need and monetary compensation can also compromise egg donors’ decision-making, making it unlikely that they are truly informed of the risks they are agreeing to undergo. One woman in Eggsploitation, who was in medical school when she sold her eggs, told us: “we are taught in medical school that any time you have financial compensation it creates inequities in care and in the decisions that people make, so if someone is more in need of money, they are more willing to take risks and to ignore the risks and side effects.”
Studies done on infertile women show that some of the drugs used with egg donors carry risks of cancers. Some drugs, like Lupron, which is used to cause a medical menopause in young women, have never been safety approved by the FDA for this use.
Finally, the children born via egg donation often aren’t told of their conception story, and they often don’t have access to important information about their genetic mother.
What Do We Know So Far?
What does the research tells us about hormone manipulation in women like Brittany, and its possible connection to brain tumors and other cancers?
Here’s what we know so far:
We know there are genetic causes of cancer and our genes can be influenced by our environment (e.g., drugs, toxins, radiation, chemicals, etc.). From one Danish study titled “Hormonal contraceptive use and risk of glioma among younger women: a nationwide case-control study,” we also know the following:
Studies of glioma risk associated with hormonal contraceptives are limited by their focus on postmenopausal women and, typically, self-reported drug information. Prospectively collected data on the association between hormonal contraceptive use and glioma risk among younger women are scarce.
This same study finds that women who have ever used hormonal contraceptives have a “moderately increased risk of glioma,” and women who have been “long-term users of hormonal contraceptives” have “a nearly two-fold increase risk of glioma.”
This means older women who take hormone replacement therapy and younger women who take oral contraceptives to prevent pregnancy may be at a higher risk of glioma. But this is not the egg donor profile. She is a woman who takes very high doses of these hormones for a short period of time in order to “donate” her eggs. She may or may not then go on to take oral contraception. Other studies haven’t shown the association with hormonal use and glioma, which means we need more studies.
Several studies show that glioblastoma risk is at least partially heritable. While the risk to the biological children of egg donors may be small, it is real. And if an egg donor does go on to develop gliobastoma, that would be important information for the children of egg donors, who have the right to a thorough medical history.
The current data we have on estrogen and gliomas is very mixed. So, what we know is that there’s a lot we don’t know.
What We Don’t Know
We don’t know if Brittany’s decision to sell her eggs caused her cancer. We don’t know if Brittany’s eggs were used to produce children—children who should definitely have access to this medical history from their genetic mother.
We don’t know what the real risks are to the young women we ask to “be angels” and to “make dreams come true” so that someone else can have a child. We have studied older women on hormone replacement therapies and younger women on long-term oral contraception, but we know nothing about the long-term outlook for women who are egg donors. It’s not that we have data that are confusing; we just aren’t even collecting the data on these women at all.
The day after my earlier article on Brittany went live, I received the following email:
Hi. I am looking to reach Jennifer Lahl, the author of the article asking if Brittany Maynard’s husband is fighting the wrong battle.
I just read it on your website after a friend sent it to me. I had been an egg donor about 10 times through my twenties with the same doctor. I signed up once, and after that, they kept calling me because I responded so well to the hormones and they always got lots of eggs from me each cycle.
I now am fighting stage 4 invasive ductal carcinoma, a breast cancer that has already spread to bones and my liver. I know in my heart that it had to come from the hormones I was exposed to during donation.
I was never notified of any risks from any medications I was given. I want to expose what is going on so that no women have to go through what I have gone through if there is a cause/effect connection here. I have no other risk factors for my cancer other than being female. My cancer is 100% estrogen positive. I have no family history of any cancer, I have no genetic cancer link, and I have never even smoked one puff of one cigarette in my life. I eat mostly organic and whole foods, mostly vegetarian, and I exercise. I share this information with you because I want you to know that I am a healthy and smart woman that cares about my body and what I put in to it.
I feel like by not disclosing to me the danger of the birth control and the hormones being used in the donation process, the doctor put me at unknowing risk. I would never have donated had I been presented that information. It was not worth my life and my future just to help someone else become a parent. I am in my early 30s. I had to have a full hysterectomy this past summer. The irony here is that I have lost my chance at having kids (save adoption) after helping others to do so. I now face an uncertain future.
There is no current cure for stage 4 breast cancer. I’m not married. I think about what it will be like to have to share my diagnosis with any future prospective partner. I imagine saying, hey, I have incurable cancer and can’t have kids and I have all these scars from multiple surgeries. Plus, treatment is expensive and I live in a community property state, so we can’t get married or you’ll be on the hook for all my medical bills. I already had to file bankruptcy. I know life is never fair, but I feel a bit like for the doctor I worked with, somewhere along the way he made a decision to sacrifice my health for whatever money he was going to make off of me. Maybe this isn’t the case and there is no connection between the two, but after reading your article, I would really like to talk with you. If there is a connection, I want to do everything I can to be a part of any studies and to make women aware of what they are really doing when they donate.
Read the rest here