For LGBTQI+ individuals, finding quality, culturally-competent, judgement-free healthcare can feel challenging. And if you have also received a cancer diagnosis, finding additional providers that meet all of your needs is even more critical. At Penn Medicine, we believe that high-quality, patient-centered and unbiased healthcare and support resources should be available to everyone, inclusive of all gender identities and sexual orientations.

Recently, we sat down with Pegah Maleki, MSW, LSW, MPH, an inpatient oncology social worker at Penn and spoke with her about barriers to care that LGBTQI+ individuals may experience, how they can find resources for support as well as ways for loved ones and providers to support an LGBTQI+ person during their cancer journey.

Tell us about yourself and your work with the LGBTQI+ community, particularly cancer patients, survivors and caregivers.

I'm an inpatient oncology social worker, and I've been working at the Hospital of the University of Pennsylvania since September 2021. I've worked with LGBTQI+ clients/patients in a myriad of ways prior to coming to Penn, including in my case management and crisis response work with survivors of sexual violence, domestic violence, trafficking and torture in previous roles. I currently also co-facilitate a biweekly, virtual oncology support group for LGBTQI+ patients alongside a colleague and outpatient social worker, Kayla Hilliard.

What are some barriers to cancer care that LGBTQI+ patients may experience and how do they affect their outcomes?

Largely, barriers that LGBTQI+ patients face within healthcare are related to external factors and systemic barriers; including things like discrimination and bias, mis-gendering or imposing heteronormative expectations on the patient (for example, assuming a patient's spouse is the opposite gender), harmful policies and legislature aimed at restricting LGBTQI+ presentation and safety, and physical or structural barriers within systems (like gendered bathroom spaces or gendered waiting rooms for cancer treatment.) These barriers can perpetuate fear, avoidance, and mistrust that could delay or even impede a patient's ability to pursue life-saving treatment.

What are some resources that LGBTQI+ individuals can use to find the right oncology provider; and what questions should they ask a provider to ensure they're a good fit?

Here at Penn Medicine, we have an LGBTQ Health Program that allows patients to download a patient services handbook describing a growing list of providers across Penn Medicine specialties providing competent care, community resources for behavioral health and case management, and additional information on LGBTQI+ health. Another way patients can navigate finding a provider is via the provider directory, looking specifically at those within the LGBTQ Health program.

Patients should feel empowered to ask questions that are unique to the care they're looking for, including provider's expertise in their specific cancer, experience working with lesbian, gay, bisexual and/or trans or gender-nonconforming patients, and ways their current medications or possible hormone regimens could interact with cancer medications and treatments.

Are there support groups for LGBTQI+ people with cancer? How can they help improve outcomes?

Like I mentioned earlier, I co-facilitate an outpatient oncology support group for patients who identify as LGBTQI+ or other sexual and gender minorities that don't fall underneath the LGBTQI+ umbrella. This group is open to not just Penn Medicine patients but all cancer patients regardless of where care is received. We've run the group now for several months, and our hope was to create a space for patients with like identities to freely share about their cancer journeys, struggles and celebrations, questions or concerns and find support amongst community.

In addition, Penn Medicine's Abramson Cancer Center has other support groups for newly diagnosed patients, patients with specific cancers, etc., but our group is open to patients with any cancer, whether they are currently receiving treatment or in remission. Being a cancer patient can feel isolating and unpredictable, so I really do believe groups can not only allow patients to share about their experiences and resources, but create support networks they can return to at a consistent day and time.

Any tips for how an LGBTQI+ person can advocate for their own healthcare and support?

I believe first and foremost, patients should feel safe, listened to, and supported when being seen by any provider, within the hospital and as well when following up outpatient. Often, the burden of advocacy does fall upon patients from marginalized backgrounds, particularly when they feel an aspect of their care is going poorly, differently or they're missing pieces of information. My tips would be to seek allies in care at any location who can double as advocates for the patient, whether that is a social worker, a nurse practitioner or physician themselves.

Secondly, it's integral that patients know their rights, and know who they can speak with if they feel they are not receiving optimal sexuality and gender-affirming care. Patients can reach out to Penn's Trans Patient Advocate program or the LGBT health program to be connected with providers in the LGBTQ health program or learn how they may be able to advocate for you.

What can a family member or friend of an LGBTQI+ person with a cancer diagnosis or undergoing cancer treatment do to help support them on their journey?

I am not a cancer patient and don't think I'm able to say the exact aspects of support that can feel helpful or necessary, but within our support group, we definitely have heard themes of patients appreciating friends and family who offer consistent, supportive check-ins or are willing to be part of their loved one's appointments if they request.

We also hear themes of patients appreciating "space" and feelings of normalcy. Things like being invited to hang out, go to brunch, or go the beach in ways that accommodate for someone's potentially new physical and medical needs, rather than making cancer the focal point and largest part of that person's identity all the time.

How do you feel healthcare professionals can best treat, support and advocate for LGBTQI+ cancer patients?

I think we as healthcare professionals should take the majority of the burden off of patients and caregivers to identify ourselves as LGBTQI+-affirming providers, such as through pronoun badges on our IDs, rainbow pins or ribbons, or sharing our pronouns when entering a room before asking a patient's. Though emblems or gestures may seem small, the idea is to indicate to all patients that they can feel safe sharing their identity with that provider.

It is also within our role as providers to continue to educate ourselves on ever-evolving topics around LGBTQI+ health and best practices on serving patients, as well as owning up to when we may misspeak or misgender a patient. Apologies should be sincere and short, and can confirm that we are willing to learn from and for patients to best serve them.