Becky Schwarz, a person living with lupus, posted a tweet on July 4th about her condition, and the challenges she now faces as her “access to healthcare has changed” in light of the Supreme Court of the United States (SCOTUS) ruling on Roe v Wade. Her medication, methotrexate, was denied because it is considered an abortifacient. Methotrexate is used to treat certain types of cancer, or manage severe psoriasis or rheumatoid arthritis that has not responded to other treatments.
Her post, which has been liked more than 41,000 times, said: “I’ve never had an abortion but my access to healthcare has changed because Roe was overturned.” Thank you to Becky, who has generously allowed me to include her photo and tweet in this article.
Many of us are aware that the history of stigma in the epilepsy community has deep and nasty roots. In fact, we were the original test subjects in the early stages of the eugenics movement. But let’s not set off panic alarms just yet. For now, let’s just focus on epilepsy medications.
We have known for a while that some anticonvulsant medications or epilepsy medications are “contraindicated” during pregnancy. That means they could potentially harm the fetus. Many epilepsy medications are considered to be “teratogenic.” A teratogenic drug is an agent that can disturb the development of the embryo or fetus. Teratogens halt the pregnancy or produce a congenital malformation (a birth defect). We have known for some time that there are anticonvulsants that are known to or suspected to cause neural tube defects. In fact, I have personal experience with this myself.
As such, at least one neurologist has expressed concern via a paper in JAMA Neurology that it will become increasingly difficult for people with epilepsy to get our medications. New research out of UCSF finds that the decision by the Supreme Court to overturn Roe v. Wade could cut off the ability of women with neurological conditions, like epilepsy, to receive access to treatments. In an interview on KCBS Radio news anchor Melissa Culross spoke to Dr. Sara LaHue, Assistant Professor of Neurology at UCSF on this topic specifically. You can read her paper in JAMA Neurology here.
Pregnancy with epilepsy
Further to that point, it has taken decades to remove laws from the books here in the United States that prevented women with epilepsy from marrying and having children. Now I have to wonder if the US is heading back in that direction. It would certainly align with the rhetoric we are hearing in politics.
For more articles on pregnancy and epilepsy: VISIT PREGNANCY AND EPILEPSY
In case you are happy Roe was overturned
I wanted to provide something for those who may be happy that Roe v Wade was overturned. Here is some information on the Turnaway Study, Ten Years, A Thousand Women, and the Consequences of Having – or Being Denied – an Abortion. This study, was done at the University of California, and led by Diana Greene Foster PhD. I have linked through to the study website. On the site Dr. Foster and team note, the main finding of this 10 year study of a thousand women is that receiving an abortion does not harm the health and wellbeing of women, but in fact, being denied an abortion results in worse financial, health and family outcomes.
What to do
If this article leaves you feeling like you need to do something, there are some steps that we can take. I’ve listed a few organizations working to make change:
- Emily’s List: https://www.emilyslist.org/
- Human Rights Campaign https://www.hrc.org/
- Planned Parenthood https://www.plannedparenthood.org/
- Americans with Disabilities National Office https://adata.org/
- Committee to Protect Healthcare https://committeetoprotect.org/
If you wondered why I was quiet on this issue, I apologize. I wanted to put out a thoughtful response. And if this article frustrates or angers you, I apologize. As always, I need to be true to this community and my values.
I look forward to, and welcome, your comments and feedback.
Founder and CEO
Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.