This interview, conducted by by Nat Thomson, Simmons MSW Candidate, runs abridged in the November 2024 issue of the Simmon's MPH Monthly. Valerie Leiter, PhD is Chair of the Simmons Public Health Department and Director of the Bachelor's Program in Public Health. We thank Val very much for taking time to talk with us this month!
As I was prepping for our interview, I noticed you had used the term “medical sociology,” which I thought was interesting- maybe we could start by talking about what this term or idea tends to encompass?
Sure! Sociologists are interested in the social world. I see sociology as being a combination of social structures and culture. I think this construct applies to health very directly and very nicely. [In my career] I've done a range of work; I've looked at youth with disabilities and their experiences transitioning to adulthood, I've looked at direct-to-consumer advertising for pharmaceuticals, I've looked at the FDA's regulation of women's health medical devices. I'm currently doing a book project, interviewing people about what it's like to live with permanently implanted medical devices in their bodies which are there for health reasons. For all of these subjects, policies are social structures. It's like a lever that we can pull to change people's lives, to change their opportunities, to change their access to things. And then, I'm really interested micro/macro connections. Okay, we have our policies, how does that trickle down to the lived experiences of people at the individual level? And what meaning do people attach to those experiences? So that's what I really focus on.
You’d mentioned researching pharmaceuticals; our last interview was with Alan Rossi Silva, PhD, where we discussed the territory of intellectual property and patents in the medical realm. I'd be curious to hear what you found, or what was sociologically interesting about it to you in that area.
One of the papers I wrote is about a drug called thalidomide, which in the fifties was associated with really horrible birth defects. It was prescribed to women for nausea early on in pregnancy, however that's the developmental period when limb formation is happening. And so babies that were exposed to Thalidomide in utero were born with flippers instead of arms. It was really awful. The U.S. never approved the drug, due to the activities of a couple of women who did the research, and someone who worked in the FDA who kept delaying the drug’s approval. It was however used in other countries. But then what happened was in the nineties,they were trying again to get approval for thalidomide in the US, because it turns out it's really helpful for a particular form of leprosy and for AIDS wasting syndrome. It can really help people with those conditions. You can see how those are pretty important things to treat. The FDA had to decide, “well, if we were going to approve this, how are we going to make sure that no babies are exposed to thalidomide?” So I co-wrote a paper with a medical sociology faculty member at Brandeis about the topic. I also have another paper about direct consumer pharmaceutical advertising which I co-wrote with a different faculty member at Brandeis, where we really look at how drug companies have these campaigns where they're essentially selling sickness. The advertisers convince people they have a condition, and then they have to go ask their doctor for the drug to treat it. Those are the 2 pieces about pharmaceuticals that I've done.
Even as someone who came to social work after being in advertising for a long time, it’s really shocking the degree to which pharmaceutical advertising has come to dominate the ads people see and hear.
It used to be that drug companies were not allowed to market to consumers. And any ethical drug company wasn't doing that. But then The Food and Drug Administration changed its regulations with The Food and Drug Administration Amendments Act of 2007 and that’s when you really started to see it take off.
Your research has also focused on the concept of medicalization. Something we talk about a little bit in the social work courses here at Simmons as well. I'd be interested to hear your stance on the matter or maybe what the research has borne out from where you’re sitting.
Sure. I've written 2 papers about the topic. One of them was the direct consumer advertising paper, because, you know, that's medicalization. When you convince people they have a condition that they should take a drug to treat it, that would be medicalizing something. And then we have another paper called Medicalization, Markets and Consumers. It really looked at how medicalization plays out and what some of the constraints are. For example, we can medicalize infertility, but insurance companies don't pay for infertility except under very specific circumstances. which are generally anatomical in nature. But all of those papers I’ve mentioned are in the realm of medicalization, really.
Thanks for sharing these. I understand that maybe these are older pieces of research on your part, so I also wanted to make sure we hear about your more recent work as well!
I’ve got quite a few papers at this point which focus on reproductive medical devices. These are devices that get implanted largely inside women's bodies for different purposes. I co-authored a couple papers with Shelley White who was here at Simmons for a period of time. One was looking at vaginal mesh, which is a kind of mesh that is implanted in women's bodies for female urinary incontinence. We published another paper about vaginal mesh and a book chapter in a volume on women’s health, and we also published another paper with a couple of students, an MPH student and an undergraduate student, that looked at FDA hearings on medical devices more generally. That one looked at who gets to have their voice heard. Not surprisingly, patients' voices were heard much less than industry voices and researcher voices. Even the voices of physicians who actually treat patients tended to be under-represented, even though they bring a broader clinical knowledge of the issues. I also have a paper about Essure, which is a female sterilization device. It looks at how women who have had that device implanted into their Fallopian tubes for sterilization experienced a lot of problems and had a hard time getting people to take their concerns seriously. I co-wrote another paper with a student that's out for review right now about IUDs, and why people discontinue use of IUDs due to dissatisfaction. I'm working on another paper with an alumna, which is looking at the biomedicalization of human reproduction, looking at all of the medical devices that are used, from contraception and conception through to labor delivery, every single device the FDA allowed on the market from 1976 to 2023 for those purposes.
Is it your sense perhaps that there are and have been too many not-so-great medical devices on the market? Or is it more just like kind of looking one by one to see how they all tended to play out?
I don't think it's so much a matter of there being too many. I think it's more that sometimes the devices had problems and the FDA was slow to respond to the patient problems. For example, the vaginal mesh I mentioned before, eventually they issued guidance saying that it shouldn't be used when someone was experiencing what's called “pelvic organ prolapse,” when organs are actually falling into a person's vagina. The guidance was finally issued, but it took years for them to do so. Actually, the manufacturer, Bayer, eventually just took it off the market. They said it was for “business reasons.”
I liked your previous point about which voices get heard, could you talk a bit more about that?
We were focused on FDA expert hearings, which are a part of the advisory committee processes they have in order to make sure there are open hearings where people talk. Anyone can sign up and speak, so we did an analysis, looking at people's “airtime.” How many words they got to utter, how many questions they got from the committee. They weren't in front of legislators. They were in front of experts, people who had been chosen by the FDA as experts on that particular type of device.
I would assume that business friendly or business oriented voices tend to predominate, is that something that you feel needs to be addressed as a public health consideration?
Yes, because they are really given a lot of time without constraints. And so they have guaranteed voice in these hearings. The FDA ultimately is trying to balance the industry interests and the public health interests as a regulatory agency. Ultimately, they only have the regulatory authority that Congress gives them. Congress is being swayed by lobbyists, for sure. The lobbyists aren't coming right into the FDA.
You also do some mentoring of students on research projects, could you speak a bit about this because we have some student readers of course.
All the things I've been publishing recently, I have students on. I try to hire them. There's a fellowship program that students and faculty can apply to. So I try to have students participating through that faculty student fellowship program.
So if anyone reading wants to get involved they can take a look at the fellowship opportunities?
Yes! And then I also help students with their own research, for undergraduates who want to write a senior thesis, or we have a summer undergraduate research program called SURPASs and I mentor students through that program where they get to do their own research. They choose the topic, I mentor them through that process.
Shifting gears a bit, what drew you to sociology initially, If I might ask?
I was a sociology major in college and I took a class on social problems in my first semester where we read a book about working poor families. I myself grew up working poor, and I found myself thinking “Oh, these are the people who actually care about people like me and my family, what is this?” So I just took more and more classes and then ended up getting a bachelor's and then a master's degree in sociology, and then went for a joint Phd. In sociology and social policy. So I've been a sociologist for a really long time at this point.
In your youth, let’s say, were you interested in the way people interacted with one another to some degree? Has this always been an orientation of yours?
Yes. I grew up poor but we often lived in more affluent areas. So I was more aware of social stratification [on account of that]. In high school we were living in a trailer park and all the other students in my honors program tended to live on the nice side of town. We had a motel in front of the trailer park we lived in, and the motel was where a lot of sex workers worked, and I remember seeing clients coming in and out while I was waiting for the school bus and coming back home. That had a way of making me more aware of society as a 15 year old. So sociology to me became the place where people actually pay very close attention to how people’s life opportunities are shaped.
I wanted to ask you about the Society for the Study of Social Problems.
I've been a member of what we call “Triple S, P” for 25 years now. I gave my first presentation on my dissertation in 1999. I then became a co-chair of the Health Division. I’ve been VP of the society, I’ve been on the Board of Directors, spent some time involved in the Accessibility Committee, the Bylaws Committee and am currently the chair of The Committee on Committees. So I’ve basically served in almost every elected position they have.
For MPH, students who are looking to get more involved, what would joining the Society for Study of Social Problems start to look like?
Students can definitely join, specifically for MPH, the Health Division, and then they could come to meetings and present their work. It would be a great, great opportunity for networking; everyone involved is passionate about social justice. It’s a very progressive bunch of people who are all looking to advance social justice,egardless of areas of focus or specialized degree.
So it's a range of subjects, and then a range of different types of expertise as well? That might be a good way for an MPH student to get more exposure to social work, ideas, or vice versa.
Yes there are a lot of social workers who come to the meetings. There is some concentration of social workers in the group that deals with poverty but you can get involved in what you’re interested and focused on. It really helps to give you professional experience. In a group like the APHA, it takes a very long time before you’re able to get into a leadership position there. It’s just so big. But SSSP offers a real chance for people to have early career leadership opportunities.
We thank Val so much for her time in speaking with us!