I am six months pregnant with my first child, a baby whose very existence feels miraculous because of what it took to get to this point.
Five years ago when I was diagnosed with breast cancer at 31 years old, I learned I had a 50/50 chance of losing my fertility. I preserved my fertility by freezing 14 embryos with a sperm donor. After four miscarriages from natural procreation, I finally transferred two embryos in January of this year and am pregnant with a baby boy.
I am so grateful for the medical advancements made in reproductive medicine over the last 30 years. Given what I endured and the financial investment I made to get to this point in the pregnancy, I can’t imagine learning my miracle baby had a devastating illness. Yet, one in 2,500 learns their child has mitochondrial disease.
Mitochondrial disease leaves no system in the body untouched. Mitochondria are responsible for 90 percent of the body’s cellular energy needed to sustain life. According to the United Mitochondrial Disease Foundation (UMDF), “The disease primarily affects children and appears to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.”
UMDF also says the disease is approaching the frequency of childhood cancers, with many children not living beyond their teen years. University of California San Diego cites 1 in 4,000 children will develop mitochondrial disease by age 10.
Like all new moms, I envision my child’s first day of school, Little League games, his first date, pimples, homework and college. None of us imagine a life of suffering for our kids, brushes with death over every cold or flu bug, or death far too young.
Yet, once a disease is diagnosed, your life becomes a battle between hope and reality.
Researchers from The New York Stem Cell Foundation Laboratory and Columbia University Medical Center discovered a breakthrough in preventing mitochondrial disease in its inheritable form. Most breakthroughs are reported in the media with little emphasis on how the research was made possible.
In this case, human eggs donated by women who were compensated for devoting 56 hours of their life to undergo multiple blood draws, ultrasounds, hormone injections and a minor surgical procedure to have their eggs removed made it possible to eventually prevent other families from passing on the mitochondria genetic link to their offspring.
Fifty-six hours of their life, and they made a contribution to society that could never be measured in dollars and cents. These women may have saved the life of the future President of the United States, or a Noble Peace Prize Winner or a doctor, teacher or firefighter. They may have saved the life of their neighbor’s child.
Of significant note, one of the researchers on the team left Harvard after spending considerable time and money to recruit egg donors, but had only one woman participate because Massachusetts, like California and South Dakota bans egg donor compensation for research purposes. All other 47 states allow egg donor compensation for research. A post study survey revealed more than half of potential participants opted out because they couldn’t be compensated for their participation. Since New York does allow compensation, he moved and along with the rest of his team, recruited about one egg donor per month for an 18 month study.
Can you imagine what else we can solve or advance with other donated eggs available? California has amazing researchers who need access to donated eggs to conduct research. I am particularly interested in advancing reproductive medicine and would love to collaborate on a study that definitely shows the true quality impact different types of chemotherapy has on a woman’s eggs. Without access to eggs, we can only counsel women on the quantity impact.
The California Cryobank, Reprogenetics, American Congress of Obstetricians and Gynecologists District IX (ACOG), American Association of University Women (AAUW), Fertile Action, California National Organization for Women, Equality California, Planned Parenthood and others support AB 926, a bill authored by
Assemblywoman Susan Bonilla (D-Concord) and sponsored by the American Society of Reproductive Medicine (ASRM) which ensures California researchers have access to donated eggs by reversing this ban on donor compensation.
All 50 states allow sperm donors to be compensated for donating to research. Forty-seven states allow egg donor compensation as well. It’s shocking that a progressive, forward thinking state like California would enforce this ban and prevent ground breaking research from taking place. With a state struggling to keep California companies from fleeing to tax sheltered states, one would think the government would welcome National Institutes of Health funding and other private research funding to add to job growth and keep California as an attractive state for scientists to conduct their research. Every researcher knows if a funder doesn’t believe you can recruit participants, they will deny you a grant.
No compensation clearly produces too few participants; and no medical breakthroughs occur without participants.
Supporters like California Cryobank cite a basic lack of equity in its support of egg donor compensation by stating, “To single egg donors out from compensation is inherently discriminatory and unfair given the medical risks and time required.” California NOW agrees and expands the argument, “It is not only a fallacy to claim that “freely” donated eggs avoids oppression, but such arguments fully incorporate kyriarchial gender roles. What these arguments do in reality is assure access to women and their labor for free or next to nothing.”
The reality in medical research is that much of what needs to be studied bears risk to the subject. That’s why animal rights activists are against using animals who cannot provide informed consent to procedures that can cause them harm. Humans, on the other hand, in particular women, have ample protections from the
Federal and California State Government to ensure they are adequately informed of their risks in their native language, both orally and written, before consenting to any procedure.
As an example, a research subject undergoing an endoscopy receives general anesthesia and bears the risk of intestinal bleeding or even death. That person receives compensation of $3,000 in this particular California study. It is considered both ethical and just to compensate research subjects commensurate with their time, effort and level of risk for making a greater contribution to society than to themselves.
This system existed in the days of finding a Polio vaccine, discovering better ways to freeze eggs for cancer patients, and now in finding ways to prevent mitochondrial disease.
After all, aren’t we past the days when we treat women like they are less capable than men of making sound decisions for their own well-being? It’s my body and my choice if I want to donate a dozen of my eggs to science – who knows maybe it’s my egg that will be used to find a cure for cancer. Now wouldn’t that be an incredible way to make a difference in the world.