To round out CF Awareness and Mental Health Awareness month, we’re sharing an interview with Dr. Heather Bruschwein, a researcher and clinician with expertise in cystic fibrosis and mental health. Dr. Bruschwein is clinical health psychologist and an Associate professor of Psychiatry & Neurobehavioral Sciences at UVA Health. She is also a team member of the ACT with CF study, which BEF supports. Kashvi Kapoor, a student at the University of Massachusetts, Amherst, and BEF Policy and Advocacy Fellow, conducted this interview as her Fellowship capstone project. This wide-ranging interview covers mental health in the modulator era, the role of financial stress on mental health, how lack of access to modulators contributes to mental health, and more.
This interview has been edited for length and clarity.
Kashvi Kapoor: Many people in the CF community have experienced physical health improvements over the past few years due to the introduction of modulator therapies. What changes have you observed in the mental health of people who benefit from modulators?
Dr. Heather Bruschwein: That’s a really good question and one that has come up a lot since the introduction of the therapies. To organize my answer, I’ll break it into two categories: one is the changes that seem to be a direct link with the medication itself and the second category is changes in mental health after people have had these physical changes.
For the first category, there is a lot of growing research in this area which we were not necessarily expecting, because when they were testing the new modulators, there were not any significant mental health side effects reported during the clinical trials. Providers were not looking for mental health side effects or not necessarily expecting that, but then people started to report changes like trouble sleeping and worsening depression. Some people said they were feeling more irritable or more angry and emotional, and they had no idea why. Other centers had some of these same experiences.
People have also wondered if part of it is, if you’re already on an antidepressant, is the way that your body absorbs the antidepressant impacted by Trikafta? There’s a lot more that we need to learn and understand so that we can help people be better prepared, to know what to look for, and to understand what might be happening.
The other category that we’ve seen have been after people have had major physical changes and then having changes in mental health. Some people have felt improvements in depression, anxiety, and day-to-day stress if they were worried about managing a lot of health issues and some of those issues have decreased.
We’ve also noticed that they haven’t all been positive changes. For some people, with the changes in their physical health, they suddenly realized that they have other things to worry about now that they didn’t before. People who hadn’t saved for retirement, hadn’t gone to college, or had intentionally chosen not to have children because they weren’t sure about the course of their disease, these people all of a sudden realized that they maybe need to make changes in these big areas, which can cause a lot of stress and uncertainty. The area of aging with cystic fibrosis is a newer area that people are now looking into more.
KK: I can relate to that. I mean, I’m so grateful that I started modulator therapy at 18, but I never really know what’s ahead of me, so I would try to make the most out of everything. Now that I’m feeling and doing much better, I can look further ahead and focus on my long-term goals, which I’m also glad about. It does stress me out sometimes because I didn’t really plan it when I was in high school, but I feel it’s still not that late. I can do it now, so I’m just grateful for that.
HB: You know exactly what I’m talking about, then. In our adult clinic, we had people who were 30 or 40, and they had some of the same realizations as you. They asked, “How do I now change my view or change my goals for the future?” These views and goals might be very different now.
KK: I understand. What are the hidden psychological burdens of managing CF and are often overlooked by health care providers?
HB: This is a really good question, especially for healthcare providers who don’t have a lot of experience with cystic fibrosis. It would be pretty easy to overlook how much work there is day-to-day in maintaining CF. It might seem like, “Just take some medication,” but that can come with a lot of questions: “When do you take it? Do you take it with food? What food do you take it with?” There are also a lot of burdens that can come with dealing with insurance. Patients often share the amount of time that they have to spend on the phone, calling insurances and calling for appointments. We just see you show up for clinic and often don’t realize all of the steps, how much it takes to get there, and everything that happens afterwards.
Other potential burdens that can be overlooked by healthcare providers are how people choose to disclose if they have cystic fibrosis and when people feel a pressure to educate people on CF. Our patients will often say, “When I come to clinic, everyone in the CF clinic knows to put on the gown and gloves and wear a mask. Other doctors don’t always know that and I have to constantly ask other providers, ‘Hey, I need people to wear a gown and gloves and mask around me.’” They feel like it’s on them to do that when, really, it should be the healthcare providers. We need to do better about that.
KK: Navigating that in public spaces, it’s hard. I always ensure that I am wearing a mask and taking all precautions. In college, especially if I’m in a dining hall or places where I cannot always wear a mask, it’s really hard for me to manage and I can’t tell people to do that. I also try to stay in my dorm or in libraries or somewhere where I’m always protected and don’t catch any infection. It was worse for me in high school because I was really sick back then. There were weeks where I would stay at home and couldn’t walk to my balcony because I didn’t have the modulator therapy then. The self-isolation part and the social stigma is really true with cystic fibrosis.
HB: Exactly, people feel like they have to be isolated to keep themselves safe from infections, but that’s hard because you’re really isolated.
KK: I do have a few friends with cystic fibrosis who I met online. I’ve never met them in person and I cannot ever meet them in person. We do talk about that, how we can’t meet and how they struggle with cystic fibrosis. The experiences are pretty similar in terms of that and how they also have managed to make friends. I do have friends, but I can’t always go everywhere they go and do things they do, so it’s hard to maintain long-term friendships. I’m just grateful for my family and my sister. They are my closest friends. It’s easy to balance it with them because they actually understand. I get that nobody else really understands that.
HB: I’m glad that you have your family and people that understand and support you. It can be difficult for some of our patients who don’t have a lot of supportive family or family that doesn’t understand. Some of our patients experienced a lot of isolation and stigma, especially during COVID, when their family didn’t agree with wearing a mask all the time and the extra precautions that people were being asked to take. It’s really difficult to navigate when your friends in the CF community, who understand how you feel, can’t even spend time with you.
Another example that I can think of is that some people didn’t feel comfortable or didn’t know how or when they should share with people if they had cystic fibrosis. If they were going to a summer camp or physical school activity, or if they had a port and they didn’t want people to see it, they felt like they had to either tell people before they felt ready to or not participate in that activity. It seems like everybody now navigates it in different ways based on how much they feel comfortable sharing and who they feel comfortable sharing with. Then, if they have supportive friends who understand, their friends help them in those situations.
KK: Does the financial burden of CF treatments impact mental health? Are there any helpful coping strategies to manage the stress that you know of or that your patients have shared with you?
HB: I’m glad you included that because I think this is one of the top stressful issues that people share in clinic. Right now, in the United States, there’s a lot of uncertainty about assistance programs. We don’t know for how long or what kinds of resources will be available, so that’s extremely stressful for people trying to figure out how they can get everything that they need at a reasonable cost or have some help with covering it. It very, very much impacts mental health, often in a negative way, if people feel like they don’t have a lot of options.
In terms of helpful coping strategies, a lot of them come from patients sharing with us programs that they found that cover things or ways that they applied for assistance. We really encourage our patients to share if they have any financial issues with us because there might be something that we can do to help. If we don’t know certain issues that they have, then it’s harder for us to help them. We might be able to connect them with the CF Foundation, which has some different programs. Even our institution has a financial aid program that people can apply for. Our social worker does a great job of connecting people with that.
In terms of day-to-day coping if people are feeling overwhelmed, trying as much as possible to be organized with different finances can help, even though that can be extremely difficult with insurance. When you’re applying for programs that ask for certain information and documentation, if you already have that organized, that can be very helpful.
KK: What are the mental implications of being ineligible for Trikafta and how do these patients cope with this reality?
HB: That is something that can be very difficult for people. I’ve had patients share with me that they feel very disappointed. Some of them feel stuck because they are very happy for people who are eligible and they want everybody to benefit as much as possible, but at the same time, it’s pretty hard for them not to be a part of that. Some people coped with it by trying to focus on the positive as much as they could, that a lot of people are benefiting, and trying to focus on what they can do day-to-day. They can take medications that they are on every day, they can exercise, and try to keep it more action-oriented so they feel like they’re doing something. They can continue to advocate for increased research and funding so that, ideally, one day everybody will have some kind of modulator. I know that there’s been advances in this area, but continuing to push for that. Foundations like BEF are really helpful in this area because they really help with a lot of awareness. Even this fellowship that you’re doing is amazing and can hopefully benefit a lot of people.
KK: I also think that if there is a resource which is available and we don’t qualify for it or we aren’t able to get it, it can really affect our mental health. Because when I was in India, we didn’t have Trikafta there, but I knew about it. I was never diagnosed with any mental health illness, but I was a bit concerned for myself because there weren’t many resources or awareness about Trikafta or other general things about cystic fibrosis. After coming here, when I got access to some resources, I was glad. I didn’t have any mental health issues earlier, but I could tell that I feel happier and better about myself. I do understand and I do feel sad for those who don’t have access to Trikafta or other resources for CF.
HB: Absolutely, I’m glad you mentioned that because I do think that some people may not necessarily have depression or anxiety about it, but it still impacts them.
KK: What role does self identity and self-perception play in how CF patients engage with their treatment regimens?
HB: It can play a pretty large role in it, and it seems from what patients have shared with me, the ones who feel empowered or like they have a lot of agency and control in their life, they engage with their treatment regimen in a way of, “How does this treatment regimen fit with my life? This is for me, how do I engage with it in a way that benefits me?”
Some people have shared that they’ve struggled with trying not to let themselves have a negative perception about it, like their regimen controls them and their life. It absolutely does impact people’s lives a lot, but it seems like people who focus on it in that way would probably have a more difficult time engaging with their treatment regimen because they feel like it’s put on them. It is, but people who find ways to look at it in a more positive way, like, “This is my life and I’m living it, and these treatments are things that are going to help me live my life and pursue my goals,” they could have a very, very different impact on how they engage with it.
KK: Do CF patients feel that current psychological support in CF clinics is sufficient? What improvements would they like to see? What changes would you, as a clinician and researcher, like to see for mental health support in the CF community?
HB: I can’t speak for patients, but from my perspective and from speaking with mental health providers in other clinics, there’s absolutely a need for more services. It’s great that all teams have a mental health coordinator position and we have the annual screenings for anxiety and depression, but there is a need for so much more support. I’m a psychologist, so I work with my team and I’m able to see some people for therapy. I don’t have enough time to see all of the patients who might like to do therapy, so then we have to find outside therapists. If people are from a more rural area, they might not have a lot of options.
We can offer therapy by video, so that has helped, but there’s still a need for so much more access and availability of mental health providers, especially ones with experience with cystic fibrosis. People are saying, “Okay, I finally found a therapist in my town, but I feel like they don’t understand what my day-to-day life is like and so I don’t feel like this is a good fit.” It can also be very difficult to find psychiatrists to prescribe psychiatric medication, especially psychiatrists who have experience with cystic fibrosis.
KK: I think that accessibility and awareness within the psychologist and psychiatrist community does still remain an issue. I’m in a small college town, so there’s not much around here. For my appointment, I have to travel two hours. It’s not that regular, but for therapy-based issues, I feel like people, especially college students, might have to struggle for that. Access to resources is the main thing which I would also like targeted.
HB: I absolutely agree with you. There’s been work to expand access because having to drive hours, even one hour, would be too much if you’re a college student or if you’re working. There’s a type of cognitive behavioral therapy for people with cystic fibrosis that I know some centers have been working on. Dr. Virginia O’Hayer’s Acceptance and Commitment Therapy for people with CF had done their study all by video, so people could be in other locations and still benefit. We’re trying to expand the availability of that and train more people who already work in cystic fibrosis in those types of therapies so they could offer it by video to people, so they don’t have to come all the way to the CF center every time they need a therapy appointment or some kind of mental health support. Dr. O’Hayer is also working on some way of making the Acceptance and Commitment Therapy for CF into a toolkit that could be available online so that people could still access these different resources. Hopefully, that will increase access, even if we continue to have a shortage of therapists and psychiatrists in CF.