An estimated 20 million Americans identify as LGBTQ, according to the Human Rights Campaign Foundation. In recent years, national debates have erupted surrounding LGBTQ health issues such as gender-affirming care and inclusive sexual health education in schools.
But another issue at stake is getting less attention, even though it involves immediate health dangers to millions of people. LGBTQ Americans have long experienced discrimination, stigmas, and exclusion in the health care system. In a survey last year, nearly a quarter (24 percent) said that during a doctor's appointment, they were blamed for their own health problems, compared to only 9 percent of non-LGBTQ respondents. And 16 percent said they were denied medical services; less than half as many non-LGBTQ respondents said the same.
These negative experiences in the health care system have a dramatic impact on their overall health. LGBTQ Americans are more likely to suffer from even common illnesses and diseases, and to lack the necessary treatment to get better.
Dr. Jesse Ehrenfeld, the first openly gay person elected to the American Medical Association Board of Trustees, said that LGBTQ patients "are more likely to be uninsured, live with the burden of chronic disease, have difficulties accessing healthcare, and be more at risk for certain types of health issues such as obesity, cardiovascular disease, and cancer."
In a new survey, we looked at one of the most important forces at play: access to relevant information for making health decisions. The results were striking. Twenty-seven percent of LGBTQ respondents told us they've gotten sick in the past 12 to 18 months because they lacked access to the health information they needed. This translates to 5 million people. (Fewer non-LGBTQ respondents, 18 percent, said the same.)
Communities that experience discrimination and marginalization in the U.S. health care system are often neglected and left to manage their own health. In a previous study, we found that Black Americans, especially Black mothers, don't have the information they need to make health decisions that are best for them.
Trust and Inclusivity
How does this problem emerge? A key element is trust. In order to equip people with health information, government health agencies, pharmaceutical companies, and other entities focused on health must first establish a relationship with them. When people have had such bad experiences with the traditional health care system, they're less likely to listen to or seek out what that system has to say.
In our survey, less than half of LGBTQ Americans said they believe pharmaceutical companies and government health agencies have their best interests in mind. Barely half (52 percent) said the same about hospitals.
These agencies need to demonstrate that they care about the health of LGBTQ Americans and understand dynamics that impact their health decision-making. To do this, they need to be inclusive in how health information is presented. Nearly one-in-four LGBTQ Americans (24 percent) told us they have ignored health information because it did not feel inclusive of people like them.
In all communications and marketing efforts, health agencies should show the most diverse portrayals they can of Americans from all walks of life. In reaching out to LGBTQ communities specifically, they should engage with and highlight members of these communities. When possible, health agencies should partner with members of these communities to co-create and share information—whether in social media videos, drug advertisements, or any other messaging.
Government health agencies, pharmaceutical companies, hospitals, and other health entities also need to tailor health information specifically to an LGBTQ audience. They must explore the health concerns that are especially prevalent in these communities. This is essential in building relationships with LGBTQ Americans, and undoing some of the damage of the past.
"Chosen Circles"
Our research found that most LGBTQ Americans (63 percent) have created networks of people and sources that they turn to for health information. We call them "chosen circles." They often include family and friends. Importantly, they also include social media figures. More than one-in-three LGBTQ respondents (36 percent) told us they get health information from online influencers.
Currently, nearly half do not include health care providers in these circles. This is an important sign—and an opportunity for major improvement. Health agencies should work with influencers who have gained the respect and trust of people in these communities. Involve them in spreading the word about health precautions, treatments, research and more.
The gap can be overcome. Our survey found that LGBTQ Americans are active in seeking out health information. They've learned through difficult experiences not to look to the traditional health care system as often as many others do. By taking the steps we recommend, health agencies can engage these chosen circles and reach LGBTQ communities with information to improve the health of this growing population, and even save lives.
Tayla Mahmud is the executive vice president of health equity and multicultural strategy with M Booth Health, a health consultancy and communications agency.
Mark Westall is senior vice president of research and insights.
The views expressed in this article are the writers' own.
Uncommon Knowledge
Newsweek is committed to challenging conventional wisdom and finding connections in the search for common ground.
Newsweek is committed to challenging conventional wisdom and finding connections in the search for common ground.
