Is Alpha-gal Syndrome Underdiagnosed in Minority Populations, or Are Minority Communities Underrepresented in Research?

When discussing Alpha-gal Syndrome (AGS), most conversations focus on symptoms, tick bites, food reactions, or diagnosis. Yet one question rarely receives attention:

Who is participating in Alpha-gal research—and who isn't?

As part of TickBiteData's ongoing patient-reported research initiative, respondents are asked to voluntarily report demographic information, including race and ethnicity. While these data cannot be used to determine the true prevalence of Alpha-gal Syndrome within any population, they can help identify important questions about representation, awareness, diagnosis, and healthcare access.

Among respondents who answered the ethnicity question, the current demographic breakdown was:

• White: 96.1%

• American Indian or Alaska Native: 2.3%

• Hispanic or Latino: 0.8%

• Asian: 0.5%

• Black or African American: 0.2%

• Native Hawaiian or Other Pacific Islander: 0.2%

The numbers raise an important question:

Does this reflect who is developing Alpha-gal Syndrome—or who is being diagnosed, connected to advocacy groups, and participating in research?

At this stage, the answer is unknown.

Representation Matters

Patient-reported data is an important tool for identifying emerging patterns and generating research questions. However, every dataset has limitations, and one of the most important considerations is representation.

The demographics of the current TickBiteData survey population do not mirror the demographics of the United States population as a whole. If certain communities are underrepresented in the data, it becomes more difficult to understand their experiences, healthcare barriers, diagnostic journeys, and clinical outcomes.

This is not unique to Alpha-gal Syndrome.

Historically, many medical conditions have faced challenges related to unequal diagnosis rates, healthcare access, participation in research, and awareness within underserved communities.

Several Explanations Are Possible

There are multiple reasons why minority populations may be underrepresented in the current survey data.

One possibility is that awareness of Alpha-gal Syndrome varies significantly between communities.

Another possibility is differences in healthcare access and specialist availability. Alpha-gal Syndrome often requires evaluation by healthcare providers familiar with the condition, and access to knowledgeable clinicians can vary by geography, insurance status, and healthcare resources.

It is also possible that some individuals experiencing symptoms are never tested for Alpha-gal Syndrome, leading to underdiagnosis and misdiagnosis.

Finally, participation in patient advocacy groups, social media communities, and research initiatives may differ across populations for cultural, geographic, technological, or socioeconomic reasons.

At present, the available data cannot determine which factors are most influential.

The Public Health Question

The most important takeaway is not the percentages themselves.

The most important takeaway is the question they raise.

If minority populations are underrepresented in Alpha-gal awareness efforts, advocacy organizations, support groups, and research participation, then there may be experiences, challenges, and barriers that remain largely undocumented.

If minority populations are being underdiagnosed, that represents a different but equally important public health concern.

Both possibilities deserve further investigation.

Why We Need More Voices

One of TickBiteData's primary goals is to document the full spectrum and public health impact of Alpha-gal Syndrome through patient-reported data.

To accomplish that goal, participation from diverse communities is essential.

The more representative the data becomes, the more accurately researchers, healthcare providers, policymakers, and public health leaders can understand the experiences of patients living with Alpha-gal Syndrome.

At this point, the data does not answer whether Alpha-gal Syndrome is underdiagnosed in minority populations or whether minority communities are underrepresented in advocacy and research.

What it does tell us is that the question deserves to be asked and answering that question may be one of the most important next steps in understanding the broader impact of Alpha-gal Syndrome.