Even though the vast majority of people with multiple sclerosis are female, women are far less likely than men with this condition to receive medications that can relieve symptoms or slow disease progression, a new study suggests.
Researchers examined more than a decade of data on nearly 23,000 people with MS who were between 18 and 40 years old. Participants were 29 years old on average at diagnosis, and roughly 3 in 4 were women.
“This is extremely alarming,” says Ann Marie Murray, MD, a professor and the chief of comprehensive movement disorders at the Rockefeller Neuroscience Institute at West Virginia University in Morgantown.
The study wasn’t designed to determine why women are less likely to get these MS medications than men, says Dr. Murray, who wasn’t involved in the research. But she says a variety of factors may play a role, including provider bias, patients’ preferences about medication use, and issues of access and affordability.
“Those factors should be investigated and efforts made to improve treatment,” Murray says, “given the long-term impact that lack of treatment has on disability in the setting of MS.”
Pregnancy Can Complicate Multiple Sclerosis Treatment
One big factor weighing on patients and their doctors — the safety of using MS medications while pregnant, breastfeeding, or trying to conceive — is also one of the hardest to overcome, because rigorous clinical trials haven’t tested the drugs in these scenarios, Murray notes.
“Uncertainty about the risks of maintaining disease-modifying therapies during pregnancy and breastfeeding, for pregnancy outcomes and for the babies, leads to necessary cautious use,” says the senior study author, Sandra Vukusic, MD, PhD, a neurology professor at Lyon University Hospital in France.
But women may pause or delay treatment longer than needed, especially if they want to stay off MS drugs while trying to conceive, Dr. Vukusic says.
The issue is that the best outcomes for MS happen when people start treatment as soon as possible and stick with it, she explains.
“There is strong evidence that treating MS early and effectively can delay disability occurrence and progression in the future, so the patients can gain years of life without disability,” Vukusic says.
The Study Has Some Limitations
The new study wasn’t designed to prove whether or how any specific factors might directly lead women to miss out on MS medications. It was also conducted in France, and it’s unclear if results from this country would apply to women in the United States, who may have different circumstances that affect their access and ability to afford care, Vukusic says.
In the absence of rigorous scientific data on the safety and effectiveness of MS drugs during pregnancy, women and their doctors need to have nuanced discussions about how stopping or delaying MS treatment might accelerate symptoms down the line, and about the lack of clarity around the potential risks these drugs may pose during pregnancy, Murray says.
Keep Asking Questions
The best thing women can do is ask a lot of questions, and be as clear as possible with doctors about how much risk or uncertainty they’re willing to tolerate when it comes to taking MS drugs while pregnant or breastfeeding, Murray says.
“The advice I give my patients, friends, family, and loved ones, is that if you are not getting answers, if you don’t trust your team, if you don’t feel like someone is helping you, then please see someone else,” she says.