Jennifer Cohen
Welcome to the Voices in Vioethics Podcast. I’m Jennifer Cohen, and it’s my great pleasure to interview Dr Mimi Lee, a genetic researcher and graduate of the Bioethics Master’s program here at Columbia University. Mimi, welcome to the podcast!
Dr. Mimi Lee
Thanks, Jennifer, thanks so much for having me. And I just want to correct I’m midway through my Master’s at the moment, just given a lot of other priorities and things going on, I’ve had to slow down a bit.
Jennifer Cohen
Got it. You have a very compelling story to tell about your experiences with a cutting edge ethics issue in the field of assisted reproductive technology, the decision making options around the disposition of human embryos, and who gets to make those decisions when there’s a disagreement between partners. Before we get into that discussion, I’m hoping you can give us a little bit of your very impressive background in medicine and genetic research, specifically in the rare disease space. Can you tell us about your education and career?
Dr. Mimi Lee
Sure, I am a I’m trained as a physician scientist. I have an MD PhD. I did a PhD in neurophysiology. I was very curious to know how the brain worked and really what how that connected to the mind and what made each of us human beings so unique and different, although we’re all part of the same species. So I studied non human primates in grad school. I loved that so much, I decided to train clinically as a neurosurgeon. So I did that for three years in a very, very top notch competitive institution at Wash U in St Louis. It was fantastic. I loved it. I really wanted to continue my non-human primate research on the brain and how it worked, but then I realized that that would require a lot of sacrifices, including to my personal life. My mentors, all of whom were men, since I was the first woman they had, were on their third and fourth marriages and other kids didn’t recognize them when they came home late at night, on weeknights and weekends too, and I just couldn’t envision that for myself. And I’m saying all of this because I think even back then, I thought, hmm, maybe one day I might want to have a family that’s not my third or fourth family, but one that I could possibly have and be like a normal person. I decided to quit, and I went to I moved to San Francisco and trained at UCSF, and anesthesia became boarded, stayed on the academic faculty there, which I loved. It was super fun. And then I ended up going into private practice, which I did for a few years in the Bay Area. And I ended up being diagnosed with cancer shortly after I became a partner, and that was a really good thing for me. It forced me to stop and think about what I actually wanted to be when I grow up. And after I went through the cancer bit on the professional side, I think we’re going to dive more deeply on the personal side, I came out of that and decided I would do more advising and consulting to all of the entrepreneurial efforts here in the Bay Area that were being supported by lots of venture capital in healthcare and tech. I wound up working for a few startups, and then eventually I got recruited into a company called BioMarin that focused on finding therapies for children, mostly with rare genetic diseases, and I was put on their first inaugural gene therapy program for hemophilia back in 2016 and that really opened my eyes into the power of science and technology and helping people in a much different way than I did as a clinician, where, you know, we took care of patients one at a time and and now I find myself in a role I’ve since moved on from BioMarin, and I’m now at Novartis, helping teams develop gene therapies for people with rare neurological conditions, and I find myself just thrilled that I can apply all of the scientific and medical experience and knowledge and skills I gained over the years to help populations of people with conditions, and it’s been an experience I’ve just been very, very grateful for, and I never could have imagined 25 years ago when I got started.
Jennifer Cohen
Incredible. Oh, fascinating. Okay, could you tell us about the circumstances that led you to seek out assisted reproductive technology?
Dr. Mimi Lee
Sure, so I alluded to it in my previous response. I was diagnosed with breast cancer, and, you know, I really it was at the peak of the health of my life. I just it was not even a consideration in my brain that that could possibly be something. It was my ex-husband who found it, found a very, very deep lump in one of my breasts, and was very adamant about me following that up and getting it checked out. I’m grateful to him that I did, and I was diagnosed. I got the phone call on a Wednesday afternoon, which was just 10 days before our already planned wedding. We ended up, well, I ended up scheduling a lumpectomy on Friday morning. And I, you know, I just kind of looking back, I think I just panicked and freaked out, and I wanted to get this thing out of me as soon as possible. And I had the advantage of knowing a lot of the physician surgeons and people here to arrange that. And so I did have a lumpectomy on that Friday morning, the week before our wedding. In the week between that, I ended up seeing a lot of different medical oncologists and radiation oncologists, and again, my surgical oncologist, and somebody mentioned that if we wanted to have children have a family, we needed to preserve our fertility. And it was only at that time, and I can’t recall who it was that brought that up, but it was only at that time that fertility preservation came up into my mind. And so we did consult my parents, had a family friend who was one of the founders, really, of ART in the US, a guy who was down at UC Irvine, and sort of one of the fathers of it, who recommended that I see someone here in San Francisco, at UCSF, who I happen to also know when we were both in training at the same time, and unbeknownst to me, all that time, he was training to be an onco-fertility specialist, which just means somebody who specializes in fertility treatments for women who have cancer.
Jennifer Cohen
Okay, so this was all, as you say, taking place in California, which is one of the few states that has a law regarding the disposition of embryos, section 125315, of California’s Health and Safety Code, which I believe took effect in 2004, requires a physician delivering fertility treatment to provide the patient with timely, relevant and appropriate information to allow the individual to make an informed and voluntary choice regarding the disposition of human embryos following fertility treatment. And the law contemplates various scenarios. There’s what happens if there’s the death of one partner, the death of both partners, and one scenario contemplated is divorce. And the law reads, in the event of separation or divorce of the partners, the embryo shall be disposed of by one of the following actions, and it’s made available to the female partner, made available to the male partner, donation for research purposes, thawed with no further action taken, donation to another couple or individual. And then there’s another category, so this is informed consent, which is one of the pillars of ethical medicine. Can you discuss the circumstances surrounding the way this information was conveyed to you?
Dr. Mimi Lee
Yeah, you know. Thank you for sharing that law. I was unaware exactly what the law was called, and just hearing you read that one scenario out, and the options, I have to say, triggered a little bit of PTSD because I was not aware that those were all of the options to choose from. That’s so fascinating. And again, I think that just speaks to how naive I was about I know you are trained as a lawyer, and this probably seems like very natural speak. So the conditions were, we did get married. The week after my lumpectomy, we had a beautiful wedding, the best wedding I’ve ever been to, and we went away on our honeymoon as planned. I was post operative, and so I had open you know, I was a healing patient, but it was fine. I just wasn’t able to get wet or do any of the water activities that we had planned, and it was a beautiful way to recover. When I got back, the first appointment we had, actually, was with the fertility clinic. I wanted to get that done right away. I had found out while I was gone that my lumpectomy was incomplete and that I had positive margins on some of the tissue that they had removed, and so I was going to need more surgery. In parallel to arranging to see physicians down at MD Anderson, I also started the fertility treatments with my former colleague. We, I think, believe, we came back on a Sunday, we went in on a Monday, and I started treatments on a Tuesday. When we went in for our appointment, we filled out all the forms, all the billing forms, and the this and that and whatever. Oh, by the way, I was very thrilled to get a 50% discount off of the cost of this, because it’s extraordinarily expensive, but because I was a cancer patient, I had a 50% discount, which was pretty cool, but no, I mean, we just rapidly filled in a lot of paperwork,
we had to order the drugs. These were specialty pharmacies that ordered all the drugs form, and there were bunch of forms for that. And then there was a consent form. It was a 10 page, single spaced, typed consent form that was labeled consent and agreement. And I didn’t know at that time that agreement was synonymous with binding contract. And so we were left in an office after spending a lot of time with the nurse to go through the injections and the pharmacy stuff and the billing stuff and the schedule, and she gave us this form. She left us in there for about, I don’t know, five or 10 minutes. I was literally sitting on my ex-husband’s lap, as we were kind of like giddily going through this consent form that had things like, you might die during anesthesia, what’s the name of an address and contact info of your next of kin just in case we need to start collecting, there’s an annual storage fee for the embryos. There was wording about this may not be a successful procedure in terms of being able to have a healthy baby. You know, it’s all the stuff you would see in a consent form, which I’m used to seeing as a physician. And then there were these advanced directives, the scenarios that you referred to. I also didn’t realize that was the case of being the law for so long in California. But, you know, it was like, Oh, if you were going to get divorce, if one of you dies, this and that, and we laughed through these scenarios. We had just been married. I had cancer. For us this was like, this was a beacon of hope during a really challenging time when I was, someone tells you cancer, and you think immediately, you know, your brain, your mind, we’re all culturally, or at least I was, you know, having given that diagnosis of many people thinking about my own mortality. And so this all seems sort of like a fantasy to begin with, to think that we would have children one day, but we certainly were not thinking realistically about, oh, what if we get a divorce, or what if you die, or what if I die, or, you know, and so we just quickly picked scenarios. I don’t know why we didn’t talk through any of these scenarios. There was nobody else in the room to counsel us through and take it seriously. We quickly went through the whole thing, and then we just kind of waited around for the nurse to get back to us. We were done with the assignment, and she get back, and she just took the thing, she didn’t review any of it, and that was it. We were on our way. We had drugs for that first night to start, and then the next drugs were going to come the next day, something like that. And then we could start really thinking about how we were going to treat my unsuccessful lumpectomy.
Jennifer Cohen
Okay? That was incredibly vivid description of your state of mind at the time you signed it. So in your mind, as you say, this was akin to an Advanced Directive, something that was not irrevocable.
Dr. Mimi Lee
Yeah, that’s right. As physicians, we constantly and as certainly as a neurosurgeon and even as an anesthesiologist, where we’re constantly looking at charts and checking in, is this patient do not resuscitate, do not intubate, what are the advanced directives of the day? And I was very familiar with scenarios where in the morning the patient was DNR, and then by the afternoon, the patient or the family decided against that, and they were not DNR. And you, you know, you were constantly going back and forth. And it was only afterwards, during the trial, that my lawyer had gone through the thing with a fine tooth comb, and it stated in there, I don’t know, eight or 10 times in different places that any of this information, any of the information we provided, any of the options could be changed at any time. And that’s why I think we were so frivolous about I knew Advanced Directives. We’re very frivolous about those things in the clinic, in a real case situation. So for me, this was nothing to be that overly concerned about. In fact, I kept meticulous notes about, for every visit I went to and had copies of all of my records for the breast cancer. It wasn’t until my ex filed for divorce that I then had to call the clinic for a copy of this form, because I didn’t keep a copy of it and it was so low on my priority of things to keep track of.
Jennifer Cohen
Incredible. So let’s turn now to the lawsuit and the divorce. So as you’ve alluded, you and your husband decided to get a divorce, and this dispute over the embryos ended up in court. What were the issues the court was deciding regarding these embryos.
Dr. Mimi Lee
Yeah, so it’s interesting. I certainly didn’t know it then, and I’ve had a lot of time to think about it. So there was a contractual component and a Constitutional component. The Constitutional component was really the right to procreate, or as was used by my ex’s counsel the right not to procreate, which is another topic to discuss. So there was that Constitutional bit, and then there was the contractual bit. So again, the form that I alluded to with the Advanced Directives was labeled consent and agreement, and I didn’t realize then that agreement in law, legalese, is synonymous with contract. And what was interesting to me, and our side tried to argue, was that this was not a contract between my husband and me. This was an advanced directive for the clinic to know what to do with us to as one party and the clinic as another party. So that was my understanding. It was really a balance of the Constitutional versus contract elements of the case.
Jennifer Cohen
And if it’s not too personal, Mimi, was there an attempt to work out some of these issues prior to going to court?
Dr. Mimi Lee
Absolutely when my husband asked for divorce, or said that he wanted a divorce, he told me very clearly, I desperately want to have children. Part of what triggered the divorce was that we had already engaged with a surrogate agency since I was not able to carry children because of the high estrogen state of pregnancy. We were at the phase of trying to choose a surrogate. And I really thought, Okay, I’m not going to die. It looks like from my cancer, I want to live and I want to move forward and have children. And he said, I want to have children, just not with you. He could never commit, so the divorce should have been very simple. We were married just under three years, and I was financially secure on my own. I’d been a physician for many, many years before we married. And, you know, in California, there’s basically a calculator, and it’s a simple math problem. The first thing my counsel did was to bifurcate the case, and I pleaded with my ex to grant me the embryos. I knew he had no interest in having children with me. And of course, I said, I don’t need any participation. I didn’t need, you know, we could treat him like a sperm donor. Have no financial, parental, any obligations for raising the children, and he just could not get comfortable with the idea of even having been a sperm donor.
Jennifer Cohen
So there was a, as you describe it, a contractual aspect to the relief the court was going to review, and a Constitutional aspect as well. Was the court deciding if embryos were persons or had legal rights?
Dr. Mimi Lee
Yeah, that’s a great question. I don’t think the court was trying to decide that, I think they, at some point, acknowledge that these are really not persons, and they’re also not property. They lie somewhere in the gray space in between, and it was very difficult to hear that. I know we discussed this before, but to me, these were my babies the whole time, I just felt the call of my babies, and I felt an incredible, a desperate need to have to protect my babies. I mean, you hear about parents all the time, and they would do anything for their children’s, mama bears and and, you know, these supernatural powers come through, and I absolutely felt that maternal pang, and so when they were referred to as more like property, it was very difficult to, I still can’t quite embrace that.
Jennifer Cohen
Thank you for sharing. That’s very poignant. So as you say, the courts can proceed in a number of different directions. They can treat this as a contractual matter, pure and simple, if you sign the contracts, it’s enforceable as signed. On the other hand, the court can look beyond the terms of a contract and weigh competing interests, the right to reproduce, the right the ability of a person to reproduce, the right, as you say, not to procreate, the right to procreate. How did the court proceed in your case?
Dr. Mimi Lee
So unfortunately, the court decided that, and I think the damning line was, I was too smart, and I should have known what I was doing when I signed that consent and agreement and that that would be binding, and the court decided against me and ordered the embryos to be destroyed, thawed and discarded.
Jennifer Cohen
That must have been a devastating result. My understanding is that there are many cases that have a fairly similar fact pattern to your own. And in general, the courts are siding with the party who does not want to procreate. They’re giving that interest the right not to procreate, more weight than other interests. Do you feel that that is the right way that courts should be balancing these different claims, or do you think other factors beyond just the right to procreate should be more heavily factored in?
Dr. Mimi Lee
Yeah, I think that it’s so complex. I don’t agree with that unidimensional approach, and it evokes a lot of other things in my mind, which is the right to not procreate is really something that comes out of women’s choice. And mostly I understand that Sofia Vergara and Nick Loeb, high profile case that went on at the same time in mine. I don’t think that one’s been resolved yet. I think that, you know, in that case, she doesn’t want children out of the frozen embryos. I think that the right to not procreate has to be trumped by the right to procreate, especially in the situation where, like mine, it’s the individual’s last chance at having biological children. The intention that you have to go in to, preserving fertility in this way, is extraordinarily high, and does not compare with the accidental pregnancy. I’m extremely pro-choice, and without pro-choice options, I don’t think women would have made it as far as we have so far. We’re still not on par, and things are not equitable with men, but I think that that was a convenient way for men to have it both ways, and it’s a convenient way for, and this is a broad generalization, again, Sofia Vergara, in that case, is the one that doesn’t want to have the children. But, you know, those are different circumstances. She already has children. And there were cases historically, at least, when mine went on in 2015, in the cases prior to mine, where there was a woman’s last chance to have kids, she was awarded the embryos.
Jennifer Cohen
Okay, so you’re raising a fascinating distinction here. As you say, I agree with you that the right not to procreate is usually discussed in the context of an unwanted pregnancy. Can you talk a little bit more about the intentions behind IVF that may differentiate the right not to procreate from the pro-choice context.
Dr. Mimi Lee
Yeah, as I mentioned earlier in the podcast, we went through a lot it. This is a extremely intentional process. It’s expensive, it’s not equitable. You have to have access to either great insurance through your employer, or pay for that really good insurance, or it’s an out of pocket expense, and it’s on the order of tens of thousands of dollars. I was lucky to get a cancer discount. So there’s that financial investment and choice that you have to make. There’s the time investment. It takes 10 to 14, if not, a few extra days to go through the stimulation, and then you go under anesthesia for the harvest of the eggs. And there are risks involved. There’s risks involved with the stimulation. There’s side effects, there are conditions you can get from that that are difficult for your body. And there’s a lot of, besides the physical, a lot of emotional, mental, pre-thought that has to go into this with your partner. There’s a lot of, I mean, we really, or at least I really, thought in advance about I’m creating my children, and how unfortunate it is that I can’t just, you know, have a one nighter, or, like, you know, have a lustful evening and do this on my own for free, but that I have to go through this rigorous process in the face of my estrogen positive cancer. This is the contraindicated procedure, but the choice was clear, and the intention for both of us to end up with a healthy baby or two was undoubted. It’s very different from having an amorous moment and ending up with a child. Doesn’t even compare.
Jennifer Cohen
Yeah. So the flip side of this right not to procreate is an argument that gets made in these cases about the court compelling parenthood. Is that what you thought you were asking for? And can you discuss a little bit your offer to your ex-husband to separate off biological parenthood from the legal responsibilities?
Dr. Mimi Lee
Yeah, that’s a good question. So I was prepared to be a single mom. I was prepared. I wanted to save and have and raise my babies. I offered him complete. We offered him complete legal, you know, separation from any financial or parental responsibilities. The court responded by stating that that’s not our decision, but that that child would have rights protected to seek out parenthood or financial input from either parent until the child was 18, which seemed a little crazy to me, because sperm donors certainly are not bound to that kind of liability. So that’s definitely something that I think the law has an opportunity to explore and redefine.
Jennifer Cohen
In other interviews that you’ve given, and we’ll talk about the media attention your case garnered, but I’ve heard you discuss the inhumanity of the legal proceeding to rule on these issues and to weigh all these different factors. I’m wondering if you can flesh that out a bit more, as bioethicists, so many turning points and principles arise out of court cases, and having been now a part of a court case that generated a bioethics decision, can you talk about the personal toll and the appropriateness of the legal system to rule on these types of issues.
Dr. Mimi Lee
Wow. Jen, that is the $50 billion question. I don’t have an answer. So let’s start with that. of how these things should be resolved. I learned how inhumane the legal process is, and this was, this was my last chance at biological motherhood, and I had gone through so much to get there, and I just, there was nothing in that entire process. In fact, it was so inhumane. And part of that was, you know, this was in the context of a divorce, which should have been very simple, but very cleverly and strategically, my ex’s strategy was to just basically put me in a vice grip on the divorce and make it as difficult as possible. I had to agree to all kinds of carnival hoops and maneuvers to, as my lawyer put it, to keep the judge happy and not look like I was being non-compliant. And, you know, the process was inhumane. I was literally envisioning my babies in my arms during the case in the court. And for the years prior to that, when we were going through all of what I realized is just like a paper dialog and debate back and forth and having to jump through these hoops to get to that point where I could be the mother to my kids, and none of that was a consideration. It was more about, you know, this document that I never even took seriously, and I think we have a long ways to go before identifying what is the right way to resolve these issues and what are the laws that we can put into place so that it doesn’t come down to a situation like mine.
Jennifer Cohen
That’s such an important point, absolutely critical. Okay, let’s turn to some of the recent legislative action and other court cases in this space. Medicine, as you know, is a highly regulated area of human life, with an exception: assisted reproduction technology of which IVF is a part, is an area of medicine that is highly unregulated and ART and IVF clinics are acting based on their own sets of ethics and according to laws that are passed in individual state legislatures, if there are any laws. So Arizona recently passed a statute after a highly publicized divorce case with a similar fact pattern to your own case. In that case, the Arizona legislature passed a law that says the state must award embryos to the spouse who plans to use them to quote, develop to birth, regardless of whatever was signed in the contract. What is your reaction to that law? Do you think that it is coming down on the side of favoring the right to procreate over the right not to procreate. Do you think that that statute was properly enacted?
Dr. Mimi Lee
So I remember when this came out, a lot of friends who knew my story forwarded that to me, and I, you know, on the face of it, it would seem like, Oh, I wish I had lived in Arizona at the time, because then I would have my babies. But it’s a very sneaky law, and it is a way to basically eradicate choice for women who are accidentally pregnant or pregnant and have made the decision that they can’t have this child. It’s helping them make that argument against choice for women, and I think it’s very, very dangerous precedent to set, and I am absolutely horrified for women in Arizona who have unwanted pregnancies, because this is going to be used against them.
Jennifer Cohen
Okay. Colorado case went through the courts and had a number of criteria that it recommended courts use when deciding the disposition of embryos, that the courts should take into account the emotional, financial hardships for the person seeking to avoid becoming a genetic parent. The court should take into account any demonstrated bad faith or attempt to use the embryos as leverage in a divorce process. The court also said that the courts should not base the ruling on whether or not the party seeking to become a parent could afford the child, whether that party could adopt a child, the amount of existing children the party already had. Do those types of criteria make sense to you?
Dr. Mimi Lee
It’s very complex. I think that it’s right not to judge the person who wants to become the parent. I think it’s a good rule not to judge whether or not they can afford the child or things like that. I think that, I mean, those are definitely concerns, but that shouldn’t be what the decision is based on. To leverage them in a divorce, that’s exactly why my counsel bifurcated the issue from the divorce, so the divorce could be treated separately. Although, you know, my ex leveraged the divorce to make it very difficult for me during the course of the embryo case. I think that it should be, you know, divorce should be settled separately, like I said in California it’s very easy, it’s a calculation you plug in some numbers and it comes out. And we weren’t married very long. The issue of the embryos should be a very separate issue. I was quoted in one of the media articles as offering prices for the embryos and it was interesting to read that. The pricelessness of what these are I think is, you know, you cannot leverage things like this. At the same, my husband was a multimillionaire, really, and he was also the most frugal person I knew. I mean he owned two suits and he owned two ties that he had owned for like 15 years and it was in the heat of the moment where I asked him what are these worth to you because he couldn’t connect to them on an empathic human level. He was I think on the autistic spectrum looking back at it and he just couldn’t embrace, he never could embrace them as souls and our future children and our babies but he can embrace every penny that I spent, that we spent, every single penny was accounted for I mean this is a guy who was a multimillionaire who had never owned a home or a car so it’s such an emotional personal intimate issue. It’s difficult to craft rules around it, I give credit to Colorado for trying to but I’m not sure that those are the correct set of rules.
Jennifer Cohen
Okay and bringing up money, the IVF clinics are extremely lucrative. Their clientele are usually upper middle class or wealthy people highly educated. How do you think that has impacted, if you think it has, the way information is conveyed to people, the way these services are offered to people, is there more of an assumption in a sense that people understand all of the ramifications in an area of medicine that where that might not be the assumption?
Dr. Mimi Lee
Yeah, that’s an interesting question. It definitely caters to more well, like you mentioned, well to do, highly educated, highly successful women, mostly, and you know there’s a huge range of how clinics market to and recruit their patients and I know quite a few fertility docs and you know as individuals they’re wonderful. They’re physicians first and they’re fertility docs second and they are trying to help women achieve their reproductive goals but like you say, this is pretty unregulated territory at the moment. There is the American Society of Reproductive Medicine and they do have bioethicists and they do work with the Society to try to put some guardrails on what they do but at the same time there’s the competing issue and we know this, that this is the case for any commercial for-profit enterprise, the multibillion dollar industry of assisted reproductive technology is incentivized to make money and this is very different from, well, in this day and age I should be careful. Medicine in general you generally think of it as it’s not you know if you wanted to make millions of dollars you don’t go into medicine go into something else but within medicine this is now a field where you can be extremely profitable. Hedge funds and equity funds are buying out and creating chains of fertility clinics because it is unprofitable. So I think that there may be a level of assumption that women know, and I know, I’ve worked in fertility clinics for many years before my case and for years after my case and I meet these incredibly powerful highly successful amazing women here in the Bay Area and, you know, most of them are working for big name tech companies and they’re CEO’s and they have no idea. They have no idea of what the risks are and part of what my working there was not just for me to heal but also to share my story and to hear their stories and to their credit the main fertility clinic I work with they were great and based on my story they, you know, I worked as their anesthesiologist, they counseled their patients to seek legal counsel to review these agreements and to review what could possibly happen and play those scenarios out in an unemotional legal fashion so that they can prepare themselves. That being said, they didn’t force that and women are already putting a lot of money out there to do the procedure, to pay another whatever legal fee to have them review that and go through that that’s time and money but hopefully more couples will do that and I I can’t tell you and this is a podcast for another time but there are many many other devastating stories of how this can go badly for individuals, that most of the women who come through have no idea and it’s only after they suffered them that they are able to then tell their stories and collectively, hopefully, we can better prepare younger women behind us.
Jennifer Cohen
Let’s talk about that and that’s wonderful that your story has already had such a powerful impact on clinics that you’re affiliated with. Your case did have quite a bit of media exposure. Did you feel that the media exposure accurately portrayed your case and did you approach journalists or were you approached by them?
Dr. Mimi Lee
So that’s interesting. The David Boies Schiller Flexner law firm represented me as a pro bono case they saw apparently the partners were very eager to take the case on because of its potential to set precedent. They were very pro trying the case in the public court and they asked my permission to have media coverage and that, really, I had no idea what that would mean. I had to not read the stories because, it’s interesting, some of the stories they were very fact based and they got things right on and some of the stories were clearly to sell the stories and I see the value of both in our society today but it was really difficult to read stuff that was contextualized differently from the facts and then it was also a learning experience to see how biased stories can be and it really, you know, I was disillusioned in so many ways from this experience and I just learned so much about how supportive and incredible people and humanity can be and how terrible people can be to other human beings.
Jennifer Cohen
So there are many physicians who have written about becoming a patient and how that has completely altered their approach to medicine. You are a researcher in the field of genetics and, as you described at the beginning of our interview, specifically in the field of rare diseases, pediatric rare diseases, how did your case affect your views on embryos and genetics and embryonic stem cells and all of the issues that we bioethicists are struggling to work out and provide advice on?
Dr. Mimi Lee
Well, Jennifer, you really have great questions. You know, I’ve read a lot about people in medicine, doctors, specifically, who become patients, and it never really resonated with me. Becoming a cancer patient was one of the best things that ever happened to me. It really woke me up from I was always in control of my life and being able to set goals and achieve them and and nothing was unsurmountable. It took a cancer diagnosis to teach me that that’s actually not the case and humble me and make me more receptive to the universe. I now listen to patients, you know, in rare diseases and in gene therapy, especially, which has its whole difficult past, historically in the last 40-50 years that gene therapies have been developed, it’s been a rough ride scientifically with bad outcomes but now we’re finally in the renaissance of the technology being understood and honed and actually delivered to humans. The first two COVID vaccines that have emergency use approval these are mRNA genetic material being delivered to people. You know what I do now in developing gene therapies for patients, it’s a few things. It’s helping individual families with children or loved ones who have genetic conditions that they did absolutely nothing to deserve but they got them and I could help them and I know what that feels like to want to help save your baby and I think that helps me find such grave purpose and have gratitude to be part of people’s lives like this in a way that’s even more than I felt before I became a patient and I’m very grateful for that, for the skills and the gifts that I have and to be able to apply that to help other people. I couldn’t ask for anything more.
Jennifer Cohen
That’s wonderful! I’ll turn to my last two questions and you’ve alluded to the new vaccines and I want to ask you about your life during the pandemic. First, I think you can confirm the wonderful news that your health is good today?
Dr. Mimi Lee
Yes it is! I’m very healthy! Thanks so much. I’m 10 years out, I’m celebrating 10 years out.
Jennifer Cohen
Congratulations! That is absolutely the best news. Now in addition to all of your accomplishments in medicine, you’re a gifted professional pianist, a graduate of Juilliard, and you just participated in a wonderful live stream that Carnegie Hall did called Music as Medicine, where other physicians and healthcare workers who are, many of whom are, gifted musicians played for us and I thoroughly enjoyed it. I hope people check out the live stream. It was wonderful. Can you talk about the role of music in your life and how it’s helped you stay sane amid all the pressures and sadness that physicians are facing during the pandemic.
Dr. Mimi Lee
Yeah, it’s a great question. Music has been and is definitely medicine for my soul and I think for many others souls as well. Whether it’s classical or whatever type of music it is. Music is able to, music saved me. Thank goodness I had music throughout my cancer and the divorce and the whole last entire decade, has been hopefully the worst decade of my life. Without music and my little Maltese dog, I don’t think I would have made it. I love that music, through music, you can connect to the very human emotions that all of us experience in life, extreme joy, extreme heart shattering, heartbreak and devastation. I think I was in that mode for many many years and everything in between and you don’t need to find the words. Somehow I was very devoted to Beethoven during those years. Beethoven and Schubert really brought me through. They are just, Schubert has a melancholy undertone to all of his lyrical works and lyrical meaning even the piano works and the piano trios that I did with my trio. Beethoven as well can go from a moment of extreme rage to just in an intimately personal moment of inwardness and those abilities to connect to those emotions that I was experiencing then, through music, it was the antidote to everything that was happening to me and so I’m grateful again for another gift that I was given and to be able to give that back to audiences as we suffer through this unprecedented time in our lifetimes and we try to find that hope for what it will be like when we get out or that we will get out I find music is extremely comforting and nurturing.
Jennifer Cohen
Thank you Dr. Mimi Lee for sharing your story and your insights and your gifts with our audience and the larger world.
Dr. Mimi Lee
Thank you so much, Jennifer. Thank you for the opportunity.