ABOUT THIS EPISODE
Join Dr. Bermeo in a conversation with Dr. Page Pennell and Dr. Alison Pack as they discuss the article, "Dobbs Versus Jackson: Epilepsy, Reproductive Health, and Abortion".
Click here to read the article.
This podcast was sponsored by the American Epilepsy Society.
We'd also like to acknowledge contributing editor Dr. Rohit Marawar, and the team at Sage Publishing.
Summary: In this episode of the Epilepsy Currents podcast, Dr. Adriana Bermeo discusses the Supreme Court's decision on Dobbs v Jackson and its implications for people living with epilepsy. She is joined by Dr. Allison Pack, a professor of neurology at Columbia University, and Dr. Page Pennell, the chair of the Department of Neurology at the University of Pittsburgh School of Medicine. They discuss the key points and historical significance of the Roe v. Wade and Dobbs v Jackson rulings, the current state-by-state variation of abortion access in the United States, and the impact on women and people of childbearing age living with epilepsy. They also address the importance of contraception, the risks of anti-seizure medications during pregnancy, and the need for evidence-based care and advocacy for patients. Resources such as the Guttmacher Institute and the National Abortion Federation Hotline are mentioned for further information and support.
5 Key Takeaways:
1. The Supreme Court's decision on Dobbs v Jackson has significant consequences for persons living with epilepsy and their access to abortion.
2. The current state-by-state variation of abortion access in the United States is complex and can range from very restrictive to most protective.
3. Planned pregnancies are crucial for individuals with epilepsy to optimize outcomes for both the individual and the developing fetus.
4. Effective contraception is important for individuals with epilepsy, and options such as long-acting reversible contraception (IUDs) and birth control pills should be considered.
5. Neurologists and epilepsy specialists should advocate for their patients' rights and women's rights, ensuring that medical decisions are made by qualified practitioners based on evidence and with respect for the individual patient. Resources such as the Guttmacher Institute and the National Abortion Federation Hotline can provide information and support.
Transcript
Dr. Adriana Bermeo (00:05):
Hello and welcome to episode four of Epilepsy Currents podcast. I am your host, Adriana Bermeo. I am the senior podcast editor for Epilepsy Currents, the official journal of the American Epilepsy Society. It is my pleasure to welcome today's guest to talk about the Supreme Court's decision on Dobbs v Jackson and its consequences for persons living with epilepsy. We have two very special guests to help us understand the implications of this ruling on reproductive health and access to abortion for people living with epilepsy of childbearing potential. First, I want to welcome Dr. Pack, senior author of a commentary titled Dobbs versus Jackson Epilepsy Reproductive Health and Abortion, published online first in the May, 2023 issue of Epilepsy Currents. Dr. Pack is a professor of neurology at Columbia University. She's the Chief division of Epilepsy and sleep at New York Presbyterian, Columbia University Medical Center. I also want to especially welcome Dr. Page Pennell, who's the Henry B. Hickman Professor of Neurology and chair of the Department of Neurology at the University of Pittsburgh School of Medicine. Dr. Pennell is a global expert on the management of pregnancy-related issues in epilepsy, and she's also a past president of the American Epilepsy Society. Dr. Pack, let me start with you. Most of our listeners are familiar with Roe versus Wade and Dobbs versus Jackson Supreme Court rulings, but could you give us a quick refresher on the key points and historical significance of these two landmark cases?
Dr. Allison Pack (01:43):
Thank you very much, Adriana, and it's a pleasure to be here today and I want to thank the American Epilepsy Society for supporting this discussion as we go through our discussion today. Today we will be referring to persons with epilepsy of childbearing potential. Please recognize that we are aware that not all individuals who seek pregnancy or become pregnant identify as a woman. So I'm going to go through right now the court rulings ruling Roe v. Wade was enacted in 1973. In this ruling, the court ruled that the Constitution of the United States generally protected a right to abortion. This ruling was reaffirmed in 1992 in the ruling Planned Parenthood of Southeastern Pennsylvania versus Casey. Dobbs v Jackson was enacted on June 24th, 2022. With this ruling, the Constitution does not confer a right to abortion. Essentially, Roe v. Wade and Planned Parenthood of Southeastern Pennsylvania versus Casey were overturned. The authority to regulate abortion went back to the state and the constitutional right to abortion was eliminated.
Dr. Adriana Bermeo (03:08):
Thanks, Dr. Pack, you were mentioning how things went back to the state, and as we know, the legal landscape of these rulings then are evolving. Acknowledging this is a moving target, could you please help us understand the current state-by-state variation of abortion access in the United States, and what does this mean for the physicians practicing in the different states?
Dr. Allison Pack (03:37):
Well, I have to say understanding the state-by-state variations is quite complex. I would draw all of your attention to the Guttmacher Institute, and there's a very good website whereby you can see the map of the United States and the outline of the various regulations or the various degrees of restriction. And these vary from most restrictive occurring in over 15 states whereby abortion is banned at 12 weeks and later. There are very restrictive, which bans abortion at 12 weeks and later. Some restrictions starting at the third trimester. Protective, it's banned at fetal viability between 24 and 26 weeks, and very protective whereby it's banned at fetal viability. And then there's some other regulations that give more protections than those states that are protective and then most protective whereby there is no restriction based on gestational age. As I mentioned earlier, the most restrictive; this includes, for example, Kentucky, Texas, very restrictive, North Carolina, Georgia, some restrictions, Virginia protective, Illinois, very protective New York, and then most protective, there's only one, and that is the state of Oregon. So it is important to understand that there are varying degrees of restrictions across the United States in these different categories. And as I mentioned earlier, I would draw your attention to the website from the Guttmacher Institute, which really is very helpful for you to understand what the restrictions are or not in the state that you live.
Dr. Adriana Bermeo (05:29):
Thank you very much, Dr. Pennell. Can I turn it to you? Can you please help us understand how these rulings affect particularly women and person of childbearing age or childbearing potential living with epilepsy?
Dr. Page Pennel (05:42):
Yes. Thank you also for inviting me for this very important podcast and to sit alongside Dr. Pack who is such an expert in this area. So unplanned pregnancies in the general population are known to have a higher complication rate, but especially in persons with epilepsy, it's incredibly important to have a Planned Pregnancy and for the woman to have the best seizure control possible for her with the medication regimen and vitamin regimen that will provide the opportunity for the safety of the developing fetus. Pregnancy also carries a risk to women directly and with persons with epilepsy there are reports of elevated maternal mortality. Studies in the UK have actually shown that the elevated rates of death in persons with epilepsy are due to SUDEP or sudden unexpected death in epilepsy. So if a woman with epilepsy goes into a pregnancy unplanned and also with a high seizure burden, the chances that pregnancy will be unsafe for her and her developing fetus are much higher. And if she doesn't have the opportunity to make a decision with her clinician about what to do after that time, it can be particularly devastating.
Dr. Adriana Bermeo (07:05):
Dr. Pack, your commentary in Epilepsy Currents really makes the point that neurologists ,epileptologists and the organizations who represent their interests should care and take action in protecting patients' rights and women's rights. Can you please expand on this idea? Why should neurologists and epilepsy specialists care?
Dr. Allison Pack (07:29):
Well as individuals or practitioners who take care of persons with epilepsy of childbearing potential, we want to provide the optimal environment both for seizure control and pregnancy outcomes for the individual as well as the developing fetus. It is as the American Epilepsy Society has stated, critically important that medical decisions are made by qualified practitioners and that this be done based on evidence with respect for the individual patient. Therefore, the decisions made for the outcome or the health of the individual should be up to the practitioner and patient themselves or the person with epilepsy. Many of our anti-seizure medications may increase the risk of unplanned pregnancy. This is important. It's important that the individual has an unplanned pregnancy and are in a state whereby there are extreme restrictions. Again, as I mentioned, the decision should be left up to the provider and the person with epilepsy. As well, many anti-seizure medications, notably valproic acid, can increase the risk of adverse or negative pregnancy outcomes. As practitioners, we need to be aware of and advocate for the patients that should this occur to these individuals, that they do have options available to them to optimize their health as well as the outcome of the developing fetus.
Dr. Adriana Bermeo (09:10):
Thank you so much for that. That definitely brings the point that we're all part of the caregiving team of our patient and their family. Dr. Pennell, these rulings also bring up attention to contraception. Could you please tell us about the most contraceptive options available for persons with epilepsy of childbearing potential and how widespread the use of these methods are and how effective they are and how are they different in people with epilepsy than in other individuals?
Dr. Page Pennel (09:44):
Yeah, certainly, as Dr. Pack pointed out it is very important that we discuss actually as the person caring for our patients with epilepsy, that we have these discussions with them about how important planned pregnancies are, which begins with effective contraception. Some studies found that up to 65% of women with epilepsy had reported at least one unplanned pregnancy. So this is certainly a very important and prevalent consideration. The most effective contraception we like to encourage is under the band of long-acting reversible contraception, which are the various IUDs. This could be a copper IUD or it could be an IUD that has progestin as part of its mechanism of action. But the progestin just works in the endometrial cavity and does not depend upon blood levels for its effectiveness. So therefore, even if a woman is on an enzyme-inducing anti-seizure medication, the IUD still has a very high effectiveness rate of over 99%.
(10:50):
However, thanks to the collaborations we've had over the years with our wonderful colleagues and contraceptive gynecology made me very much aware that there are so many factors that go into decision-making. And many women in the US in particular are not open to the idea of an IUD. So our message should not be that you need to use an IUD or else nothing that's definitely should not be our message. Combined oral contraceptive pills, birth control pills are still the most commonly used form of contraception and will be very commonly used in our patients as well. So we do need to know about the interactions, but if they're on an enzyme-inducing, anti-seizure medication, we need to make them aware of that, encourage backup barrier methods, et cetera. And when we think about the enzyme-inducing medications, we also need to be aware it's not just an old-generation versus new-generation story.
(11:48):
A lot of our newer medications also can lower the hormone levels from these hormonal contraceptives. Some of those medications, some people may be surprised to know include for instance, cenobamate, rufinamide, clobazam. So we need to have the discussion if they are going to use a hormonal form of contraception such as birth control pills or the vaginal ring to just let them know that they should also consider a backup barrier method, but also give them information about the more effective types of contraception. We also like to encourage, there's a progestin implant, the brand named Nexplanon, which has a very high effectiveness rate for contraception, but again, that can be affected if they're on a strong enzyme inducer. So again, we need to consider the medications they're on in their contraceptive choices.
Dr. Adriana Bermeo (12:46):
Great. Dr. Pennell, I'm going to stay with you because following the conversation on contraceptions, we also know a lot from collaborative groups and teams that you've been part of that anti-seizure medications can pose some risks for pregnancy of children of adults living with epilepsy. Can you briefly remind us of the potential risk of congenital malformations and neurodevelopmental issues related to exposure to medications and how these risks are related to our conversation of access to abortion?
Dr. Page Pennel (13:20):
Yeah, certainly. Thank you. I do like to remind us, we can get discouraged about all the things we don't know in this field, but how far we have come because the conversation used to be that all anti-seizure medications are very teratogenic and have a high risk to the developing fetus. But now we do have a lot of information to provide evidence-based counseling and care that we do have some medications that have very low rates of major congenital malformation, also known as birth defects. And these rates are really similar to the general population. The medications that really stand out with the most abundant information supporting this are lamotrigine, levetiracetam and oxcarbazepine. But we also know other medications have very, very high rates of these major congenital malformations. And the one that has the greatest risk is valproic acid. We also now have information on some medications about the neurodevelopmental outcomes, and so that some medications have very low neurodevelopmental risk.
(14:26):
And with that we have lamotrigine and levetiracetam in that safe category. But then again, we have higher risk medications such as valproate. We now have increasing information about the concern on fetal neurodevelopment for topiramate. We also know that topiramate can lower the fetal growth and result in small-for-gestational age and also has a sort of medium rate of the malformations. So topiramate is becoming another medication that is starting to have greater restriction on it just placed in Europe and maybe coming out in the United States as well for use and persons of even reproductive potential. So it's so important to be able to get on the best medication regimen for that person and also at the right dose that will help to control their seizures the best possible. It's also important that they're taking folic acid well prior to conception. If all of those things aren't lined up, we know that the risk for the developing fetus as well as the mother is higher. And that's where if they're not in an ideal situation and not having access to making decisions about continuing the pregnancy is more devastating. Out of all the malformations, the one that certainly has such a high morbidity is neural tube defects. And so that is one in particular of the malformations that often will garner a conversation about the possibility of termination if the person is in a state, that is an option.
Dr. Adriana Bermeo (16:12):
Thank you for that answer as well. Dr. Pack, can you help us understand other specific issues or risks for people with epilepsy that neurologists and epileptologists should be mindful of when giving perinatal counseling, particularly when we consider genetic causes of epilepsy? Is there anything that you discuss with your patients, especially considering these new abortion rulings?
Dr. Allison Pack (16:39):
I think there's several issues here, and one of the things that's very important is something that Dr. Pennell touched upon earlier is that planned pregnancies are associated with better outcomes, and for individuals with epilepsy, planned pregnancies are important to optimize outcomes not only for the individual but for the developing fetus. As such, just to highlight a point that Dr. Pennell made earlier, it's important in that setting for the individual to be using effective contraception and recognize a nationwide healthcare claims database, finding that 63% of individuals with epilepsy either use no contraception or used ineffective contraception. So part of your perinatal counseling should be on the importance of planned pregnancies. There are certainly some genetic epilepsies and individuals who may have children at risk for this. That would be important within genetic counseling to have that genetic counseling done prior to pregnancy. So important points here: planned pregnancy, genetic counseling, keep in mind that that does pertain to a few individuals, not the vast majority of individuals with epilepsy.
(18:02):
And then the other piece that's important is that some of the malformations that Dr. Pennell spoke about earlier may not become evident until much later in the pregnancy. So for example, we routinely counsel that individuals get an anatomic ultrasound, which typically occurs between 16 and 20 weeks. If the individual who were pregnant with epilepsy were pregnant, were to find out that there was a malformation, the very restricted states ban abortion at 12 weeks or later. So for many of these individuals, this would be, if there a malformation was found at that anatomic ultrasound screening, this would be too late in those states. So just to summarize and go over again, it's important to emphasize that planned pregnancies will optimize the outcome both for the individual with epilepsy as well as for the developing fetus. Effective contraception is an important component of this. There are some genetic conditions whereby it would be important to have that information or have that genetic counseling prior to getting pregnant and recognize some malformations may not become evident until later in the pregnancy where in many states, abortion is not an option. Importantly, though, please understand as we go through this topic, that with planned pregnancies, with focusing on choosing optimal anti-seizure medications, as discussed by Dr. Pennell, most individuals do have normal healthy pregnancies.
Dr. Adriana Bermeo (19:47):
Dr. Pennell, are there any specific concerns related to minorities or people of color in regards to access to care, pregnancy planning, and access to abortion?
Dr. Page Pennel (20:03):
Thank you for that very important question. We know that a lot of things we're talking about when it comes to any medical care, we have to consider also how it affects our underrepresented minorities because there are differences as access to care and higher complication rates, and many of these situations just such as this one. So when you look at just access to abortion services alone, that a much higher percentage of minorities do receive abortions than are in the general population. There's a lot of reasons that come into this, whether it's economic status and ability to provide for that child after birth or whether it's that they didn't have access to good contraception and good medical counseling before. So we know that this is going to affect this population even more to not have the access to termination of pregnancy. And then when you look at the flip side, continuing the pregnancy, just again in general that the pregnancy-related death rates are over three times higher in women of color than non-Hispanic Caucasian women. So their risk during pregnancy, regardless of all the other things we've talked about today, are higher just going into a pregnancy planned, and then as we know, unplanned are probably even greater.
Dr. Adriana Bermeo (21:31):
Dr. Pack, the last question for you. How can we as neurologists effectively champion evidence-based care and protect their professional judgment in the realm of reproductive decisions for their patients? And do you know of any resources we could share with our listeners if they want to further get informed or advocate for and with their patients?
Dr. Allison Pack (21:57):
Well, I think one of the key points of all of this is that access to care, access to different therapeutic options should be, I just want to emphasize this again, up to the clinician and the individual person with epilepsy not up to the state or national rulings. Therefore, it's important for all of us to advocate for the individuals that we treat. It's important for all of us to work together so that the individuals we treat have access to optimal healthcare so that we can increase the potential for planned pregnancies as well as allow that individual access to therapeutic options to optimize their health as well as the health of the developing fetus. As such, we should all be working with the various organizations that we're involved with, including the American Epilepsy Society, the American Academy of Neurology, to really advocate that the healthcare decisions are left up to the provider and the patient themselves. If an individual were to get pregnant and have a negative outcome or potential negative outcome and is considering an abortion but lives in a restricted state, there are resources for that individual. The National Abortion Federation Hotline is available and will help that individual. It's important for us to be informed about the legislation and rulings in our individual states, and as I mentioned several times before, I would draw your attention to the Guttmacher Institute, which will guide you very clearly what the potential restrictions are in the state that you live.
Dr. Adriana Bermeo (23:56):
Wonderful. This was a very informative overview of the current landscape of reproductive health and their impact on our patients, and also neurologists and epileptologists all around the country and in the very different scenarios that each of us is navigating. I want to thank you very much. Thanks a lot to our guests and our listeners, I want to specially thank the American Epilepsy Society, who's the sponsor for episode four of Epilepsy Currents, Dr. Rohit Marawar and the SAGE Podcast production team. We look forward to having you all join our next episode, and as always, I want to remind you to subscribe to Epilepsy Currents podcast wherever you get your podcast, and send us your feedback, suggestions, or questions through our website, epilepsy currents.org, and follow us on X formerly Twitter @aescurrents. Until next time.
