LGBTQIA+ and Cancer Care: How to Navigate Barriers to Health Care

SBM: lgbtqia-and-cancer-care-how-to-navigate-barriers-to-health-care

Kara A. Nishimuta, PhD (She/They), Assistant Professor in Psychiatry and Behavioral Sciences, University of Kansas Medical Center; Alaina L. Carr, PhD (She/Her), T32 Postdoctoral Fellow, Georgetown Lombardi Comprehensive Cancer Center; and Claire Conley, PhD (She/Her), Assistant Professor, Georgetown Lombardi Comprehensive Cancer Center

Lesbian, Gay, Bisexual, Transgender, Queer/Questioning, Intersex, Asexual (LGBTQIA+) individuals with cancer face many barriers to effective health care. These barriers can include reduced access to employer health insurance and social stigma. Also, few health care providers are experienced in working with LGBTQIA+ individuals. 

Due to concerns about discrimination and/or expected lack of understanding from providers, LGBTQIA+ individuals may not discuss their sexual orientation and gender identity information with their health care provider even if this information is relevant to their care. Health care providers may also feel unprepared to discuss sexual orientation and gender identity with their LGBTQIA+ patients. This can lead to cancer care that doesn’t address a patient’s unique needs, contributing to disparities in outcomes between LGBTQIA+ patients and heterosexual, cisgender patients. 

Health care providers need to take positive steps toward promoting the health of LGBTQIA+ patients to reduce these barriers to health care and improve outcomes. However, it is also important for LGBTQIA+ individuals to advocate for themselves and their care in these settings. 

This responsibility should not fall solely on patients, especially those who hold marginalized identities. Unfortunately, given the state of the U.S. health care system, self-advocacy is often essential. This article serves to help guide LGBTQIA+ patients in avoiding barriers to cancer care.

How do I find a health care provider I can trust with LGBTQIA+ cancer care needs?

  • The Health Equality Index (HEI) is an LGBTQIA+ benchmarking tool used to evaluate health care facilities practices towards LGBTQIA+ patient-centered care. LGBTQ+ patients and their families can use this tool to find inclusive health care facilities/providers.
  • The World Professional Association for Transgender Health (WPATH) also has a search function that you can use to find therapists and medical providers with various specialties that have been registered with WPATH.
  • Local LGBTQIA+ centers or organizations often have resources to help you find providers. Many of them may partner with local providers and/or keep a list of providers they know to be experienced with caring for LGBTQIA+ patients.
  • If there are multiple hospitals or clinics accessible to you, it can be helpful to look up mission statements or discrimination policies for each; these policies should explicitly state that their organization does not discriminate based on gender and/or sexuality. The language used in these policies may clue you into how LGBTQIA+ friendly a clinic may be. If you are not able to find this online, you can likely call the clinic and ask for a copy ahead of making an appointment.
  • Additionally, the language used on a clinic’s website may be helpful in determining if they are LGBTQIA+ friendly. For example, using gender-neutral language to refer to patients with a certain condition may be a clue (e.g., “people with prostate cancer” instead of “men with prostate cancer”). 
  • When you make an appointment, ask if any providers are specifically LGBTQIA+ friendly or experienced in caring for LGBTQIA+ patients and/or folks with your specific identity(ies). 
  • Look up your provider(s)! Sometimes their credentials, such as LGBTQIA+ specific trainings, affiliations, or publications, are available to the public. Additionally, provider profiles on a clinic’s website may include information about providers’ specialties.

How do I make sure my other medical needs are met while receiving care for my cancer?

  • Ask your providers to communicate! This is especially easy if your providers work in the same clinic or system, but you can ask them to send records to each other with any important information about your care if they do not. This can be especially helpful if you are taking hormone replacement therapy (HRT)3 – it is important that the provider that prescribes your hormones is aware of the treatment you are getting for cancer and vice versa!
  • Write your questions down between appointments and bring them with you to see your provider(s). This can help ensure that you get the information you need if you are only able to see your provider(s) for a short amount of time. It may be important to ask about fertility, hormones, any upcoming scheduled surgeries, sexual health, and mental health, among other topics, when discussing your care. 
  • If you are partnered, make sure you are familiar with laws in your state regarding how your partner(s) can be involved in your care, whether you’re legally married or not.  

What do I do if a provider is dismissive of or discriminatory about my name, pronouns, or identity(ies):

  • It’s okay to ask for a second opinion or to ask to switch to a different provider within the same clinic. Finding an LGBTQIA+ affirming provider that provides space for you to cope with your cancer diagnosis and treatment. If you do not have access to a different provider, it may be helpful to ask another provider who knows you well to help you communicate with your cancer provider(s).
  • Utilize patient advocates. Most healthcare centers will have patient advocates whose job is to help patients communicate with their healthcare providers so they can get the information they need. Patient advocates can also help you find financial, legal, and social support.
  • You may be able to file a discrimination or general complaint with the hospital or clinic if that feels like the right course of action for you.

Additional resources:

Support Groups for Cancer Survivors

Transgender Access to Care and Cancer Disparity Fact Sheet

Healthcare Equality Index

LGBTQIA+ Equality by State

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