Diagnosis, Treatment, Mental and Sexual Health, and Resources Are Worse Than Among Heterosexuals

The Global Healthy Living Foundation (GHLF) has released the results of a landmark survey highlighting the unique challenges faced by LGBTQ+ individuals living with inflammatory bowel disease (IBD). The survey, which gathered responses from 245 participants who identify as members of the LGBTQ+ community and have been diagnosed with a form of IBD, uncovers critical insights into the health disparities and treatment gaps affecting this population.

Respondents were incredibly gender diverse, with over 43 percent identifying their gender as non-cisgender, highlighting a significant gender diversity within the LGBTQ+ IBD community.

The survey findings uncovered important statistics underscoring the need for tailored health care resources and greater inclusivity in medical settings:

• Diagnosis Awareness: 35 percent of respondents were unsure of their specific IBD diagnosis, with those on government insurance other than Medicare or Medicaid (e.g. Tricare of CHAMPVA) being 6.4 times more likely to be unaware of their IBD type compared to those with private insurance.
• Treatment Gaps: Compared with those LGBTQ+ IBD patients seeing a gastroenterologist for their treatment, participants seeing a primary care provider were 10.4 times more likely not to be on medication, and those seeing another type of doctor were 31.6 times more likely to not be on medication compared with those currently seeing a gastroenterologist.
• Mental Health: High levels of anxiety (75 percent) and depression (65 percent) were reported, underscoring the mental health burden on LGBTQ+ individuals with IBD.
• Sexual Health: Sexual relationships were among the top three most affected areas of life for LGBTQ+ people with IBD, with many participants expressing a lack of support from healthcare professionals in this aspect.
• Resource Accessibility: A significant 67 percent of participants stated there are either not enough or any resources specifically tailored for LGBTQ+ individuals living with IBD, emphasizing the need for more targeted support and information.

“The results of this survey work within the LGBTQ+ community to support unmet needs and to address work that still needs to be done to better represent patients,” says Frank Sperber, Global People and Business Resource Group Lead, PRIDE Alliance, at Bristol Myers Squibb. “BMS is proud to continue to be a part of this conversation in support of the LGBTQ+ community to make strides in the IBD space.”

“Our goal is to bridge these gaps by providing much-needed resources and fostering more inclusive health care environments,” said Louis Tharp, a gay man and Executive Director/Co-Founder at GHLF.

The survey also revealed that a significant portion of respondents felt their health care providers were not inclusive or aware of their sexual orientation and gender identity, which negatively impacted their care. For example, only 50.7 percent of participants felt their doctor’s office was somewhat or very inclusive, and only 24.7 percent said their health care provider was aware of their sexuality and/or gender identity.

In response to these findings, GHLF is committed to developing new resources aimed at improving the health care experiences of LGBTQ+ IBD patients. This includes educational materials for health care providers on the importance of inclusivity and the unique challenges faced by LGBTQ+ individuals with IBD.

“We believe that every patient deserves personalized and inclusive care,” added Tharp. “With the insights gained from this survey, we are taking steps to ensure that LGBTQ+ IBD patients receive the support and treatment they need to lead healthy, fulfilling lives.”

For more information about the survey and GHLF’s ongoing efforts to support LGBTQ+ individuals with IBD, please visit https://ghlf.org/lgbtq-ibd-survey/.

About the Global Healthy Living Foundation:

The Global Healthy Living Foundation is a U.S. based, 501(c)(3) nonprofit, international organization whose mission is to improve the quality of life for people with chronic illnesses by advocating for improved access to health care through education, patient-centered clinical research, support, advocacy, and economic and policy research. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international, digital community for millions of people living with arthritis and their supporters worldwide who seek education, support, activism, and patient-centered research in English, Spanish, and French. In addition to arthritis and autoimmune disorders, GHLF supports dermatology, gastroenterology, neurology, cardiology, oncology, infectious disease, rare disease, and pulmonary patients through a host of different programs and activities which draw more than 700,000 patients a month to GHLF websites and create more than 10 million impressions a month on seven social media platforms. In 2023, GHLF had more than 1 million views and listens with its patient-centered audio-visual content found on YouTube and podcast platforms. PatientSpot™, a patient registry with more than 45,000 registered chronically ill people has been responsible for research producing more than 60 presentations, peer-reviewed publications, and posters at global medical conferences. GHLF never asks the public for donations. Visit ghlf.org for more information.

About Louis Tharp: https://ghlf.org/about-us/team/team-lou-bio/

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