Hi Emily. I am currently trying to conceive and have multiple sclerosis. Generally, pregnancy is safe with MS and disease chills out for most people in pregnancy. I do have some hard decisions to make if I get pregnant: (1) Do I continue with my MS medication while pregnant? and (2) Do I breastfeed post-delivery while on my medication? My MS medication is Ocrevus (a type of monoclonal antibody treatment), an infusion I receive every six months. It’s positioned as a “miracle drug” that is highly effective at stopping the progression of my disease, which is very important to me. It’s a relatively new drug and there isn’t a ton of data around infusions in pregnancy and/or breastfeeding on the meds. My doctors have access to some early studies that suggest both may be okay, but I’m not sure what to trust. Any advice on how to tackle this decision? While MS is rare, I’m sure there are plenty of other birthing parents who need to make similar tradeoffs between their personal disease treatment, or preventing progression with newish meds, against pregnancy outcomes.—Hopefully an MS mama
Your last line here really resonates. It’s absolutely right that this particular circumstance is relatively rare, but it’s broadly reflective of an extremely common set of issues. There are a range of treatments for mental and physical health conditions where data on pregnancy is incomplete. The question becomes: how to make this choice?
I want to answer in three (brief) parts. First: your specific question on these MS treatments. Second: some thoughts on framing the choice. Third: the bigger picture.
First, on your particular treatment. Because this medication is relatively new, there are no large-scale trials in pregnant people. There is a study currently in the planning phases that aims to recruit women undergoing this treatment and follow them through pregnancy, but that data is not available yet. The best current data comes through post-approval monitoring by the drug companies (required by the FDA). This document reports on 1,223 pregnancies in women with MS treated with this medication. About 400 of those had known exposure during pregnancy. Reassuringly, the outcomes for infants (birth defects, prematurity, stillbirth) look similar in the exposed and unexposed groups.
This is probably the data your doctors are referring to when they say it seems okay. But it’s also true — as with many medications — that there isn’t an enormous and reassuring data set to hang your hat on. How to make the choice in that case?
There is no easy answer. This is an example of one of those places where I think we get stuck on secret option C. You can continue to be treated, and accept that it’s possible there is a risk that the data has not yet revealed. Or you can forgo treatment, and run the risk that there is disease progression. It is perhaps useful to remember that the latter choice also has implications for your child, potentially, so this isn’t as simple as a tradeoff between mom and baby.
The main advice I would give here is to weigh this decision on both sides. I think it is extremely common to frame decisions like this — including around mental health treatment in pregnancy — with the tone of Sure, you can take it if you really feel like you need it and the implication that if you choose this it’s because you are selfish. That’s unhelpful, and it doesn’t lead to good decisions. There is a tradeoff here; that’s just the reality. The decision-making should reflect that.
(It goes without saying but certainly this decision-making should be done in consult with both your OB and your neurologist, and any other providers who are working on treatment for your MS).
Final point: This is illustrative of a complicated question about drug approvals. For the most part, pregnant women are excluded from randomized trials of new drugs and vaccines. There are reasons for this (concerns about impacts on pregnancy), but there are also very large downsides to it. We saw this clearly in the case of COVID vaccines, where the exclusion of pregnant women from the vaccine trials led to complicated advice, and was especially problematic because this is a group that especially benefits from being vaccinated.
I am not suggesting that pregnant women be included in all randomized drug trials, but I do think from a policy standpoint it is worth considering whether there are cases in which the benefits outweigh the costs and it may, in fact, be unethical to exclude them.