Inclusive, Gender-Affirming Care: Can Pharma Throw the Next Brick?
I get excited about Pride month as much as most people do about Christmas. Not only because the LGBTQ+ community gets more airtime to speak up about the important issues and rally against injustice, but because it’s an entire whole month where the opportunities to learn and connect with others are more prevalent and within reach. Much like Christmas though, we have been witnessing a grinding increase in multimedia marketing and communications campaigns from the corporate world. Driven by internal and external pressures to become more diverse, inclusive and equitable, companies race each other to score reputational points. The blind spot? Failing to use their power to promote and drive long-term, meaningful change within historically marginalized communities.
In my line of work, we talk a lot about patient-centricity and people-centred care. There are different views on what “good” looks like and how to best bring it to fruition. However, what everyone agrees on is that we need to prioritize what’s important for patients and families rather than what’s important for the business and health professionals, as has happened historically. Yet, health care is extremely personal, and what’s important to some, may not even be a consideration for others.
As communicators and advocates, we train our brains to consistently look for opportunities to do more, to do better and to do it first. We put our thinking hats on and come up with strategies and tactics that help bring medicines and health care services closer to people, shift policy landscapes or strengthen communities who then go on to improve experiences and outcomes for patients.
Still, we live in a society that ranks human beings in a hierarchy of social determinants. We say we value individuality, but only when it doesn’t stray too much from the status quo or interfere with the neatly built system of labels, which are overwhelmingly binary ones.
In her fantastic autobiography, Gloria Steinem, the iconic feminist activist and trans ally, says that those who have experienced discrimination are more likely to identify it in other areas of life. Discrimination can come in many forms, including some that are less obvious, say a doctor who intentionally uses the wrong pronouns for their patients. As a fairly recent immigrant who identifies outside of the gender binary and the constraints of heterosexuality, the issues and opportunities therein are quite clear to me.
Yes, But Tell Me with Data
We have data that indicates multiple, urgent gaps in care and needs for trans and non-binary people. In 2021, TransActual, a trans-led organization empowering and advocating for trans people across the UK, surveyed 700 respondents to learn more about the scale and impact of the issues trans people face.
When it comes to accessing health care services, we learn that 14% were refused general practitioner (GP) care on at least one occasion on account of being trans. When they are seen, GPs lack understanding of their unique needs, even more so for non-binary patients. Black people and people of colour were highly likely (53%) to also experience racism while accessing trans-specific health care services, and those with disabilities have to wait even longer to access care than their able-bodied counterparts, 93% in comparison with 85%. Furthermore, when it comes to traditionally “gender-related” or “sex-related” services, such as cervical cancer screening or prostate checks, more than a quarter of respondents (27%) reported that they “always” or “often” avoid GP visits.
Knowing how much of a positive impact social media can have on driving patient-centricity and people-centered care through educational and support campaigns, our Real Chemistry Integrated Intelligence team carried out an analysis on how the public, private and third sector (i.e., charities and NGOs) in the UK are using social media to discuss trans and gender diverse topics. Looking at the top six pharma companies in the UK, influential NHS stakeholders across England, Scotland, Wales and Northern Ireland, and the largest charities specializing in cancer, heart disease, rare diseases and family planning. We found only 48 mentions of trans-related topics over the last five years.
Let me put that into context: on average, pharma companies post between two and four times per week, with peaks of activities around medical congresses and educational campaigns. This amounts to roughly 100-200 posts a year per company. Overlaying activity from the NHS handles and selected charities, where similarly, posting habits and engagement rank from moderate to high. Those 48 mentions are just a grain of sand in a desert of needs.
We also looked at the type of content that was distributed and found that the majority (29%) focused on awareness days, with social posts marking milestones such as Transgender Day of Visibility or Trans Awareness Week, followed by corporate statements communicating solidarity or commitment to working tirelessly to be inclusive, sharing personal stories or spotlights. The remainder of the content was divided between sharing educational information and announcing funding activities and partnerships.
Purposeful Return on Investment Means Returns to Community
As a small subgroup in most areas, trans and gender-diverse patients are often forgotten or neglected by the health care system, the private sector and the third sector. Instead, the most purposeful and action-oriented work is carried out by the community for the community – from charities that specialize in access to hormone replacement therapy or pre-exposure prophylaxis (PrEP) such as the London Friend, to start-ups, like LVNDR, working to reduce social inequalities in existing health care services, starting with sexual health and gender identity care.
In a profession guided by the Hippocratic oath, which pledges to care for all patients equally and not allow prejudice to influence the practice, and one that is regulated by a body that promises not to aide barriers to access or discriminate against any protected groups under the Equality Act 2010, there is clearly still a lot to be done.
The best time to start was yesterday, the second-best time is now, and the pharmaceutical industry has a critical role to play. The influence the industry exerts has an impact on every level of health care provision – from the drugs that are initially discovered and developed through clinical trials, to the promotion of medicines and disease information to prescribers, patient groups and the general public, to compiling clinical guidelines. This influence can be used to truly support trans and gender-diverse communities.
To begin with, pharma companies can start aggregating existing evidence and reimagining how new data – clinical, patient-reported, quality of life – can be generated. Whether it is about carrying out analyses of drug efficacy and safety considerations outside of conditions specific to the trans population, assessing interactions of new and existing therapies with gender-affirming treatments and procedures, or collating real-world evidence and input into psychosocial and wellbeing needs, the canvas is pretty much blank and bursting with opportunity.
This pool of resources and data, together with participating in and listening to patient community conversations around existing gaps and needs, narrow the education gap and drive better understanding of the needs of trans and gender-diverse patients.
As you may have noticed, the imperative is representation. Trans identities must be represented and involved in debates around their care in a way that is fair, respectful and, most importantly, not tokenistic.
It may seem easier to mark milestones such as Pride with a company statement-led social media activation, but activation with purpose, where the return on investment is not chiefly measured in likes and re-tweets but in improvements in care, is another thing altogether.
Pride was birthed when trans women of color hurled a piece of brick that ignited historic, collective change. Now, pharma has a similar, albeit metaphorical, piece of brick at its feet that, alongside existing efforts, can bring us closer to achieving inclusive, gender-affirming care liberation.
