In states like West Virginia, where outdoor activities are woven into the fabric of our lives, the risks associated with tick-borne illnesses are well known. Yet, despite the awareness of Lyme disease and Rocky Mountain spotted fever, a lesser-known but increasingly prevalent threat has emerged: Alpha-Gal Syndrome (AGS). I know this all too well, having been diagnosed with AGS after a bite from a Lone Star Tick. My experience with this condition highlights not only the personal challenges it brings but also the urgent need for greater public health awareness and legislative action.
Understanding AGS: Alpha-Gal Syndrome is a serious, life-altering allergic reaction to galactose-α-1,3-galactose (commonly known as alpha-gal), a sugar molecule found in most mammals. This allergy is unique in that it is triggered by the consumption of red meat and other products derived from mammals, such as gelatin, dairy and even certain medications. Unlike most food allergies that cause immediate reactions, AGS symptoms can be delayed by several hours, making it difficult to diagnose and manage.
The cause of this allergy is clear: a bite from the Lone Star Tick, a species expanding its range across the United States. As the tick feeds, it introduces alpha-gal into the bloodstream, prompting the immune system to produce antibodies. These antibodies can then cause a severe allergic reaction when the person consumes mammalian meat or related products.
Growing Threat: The rise in AGS cases is alarming. According to the Centers for Disease Control and Prevention (CDC), thousands of cases have been identified across the country, with numbers increasing exponentially as the Lone Star Tick continues to spread. However, the true extent of AGS may be underreported, as many states, including West Virginia, do not currently require healthcare providers to report cases to a central database.
The CDC has established a national database for tracking AGS, but only a handful of states have made this condition reportable. This lack of comprehensive data hampers our ability to fully understand the scope of the problem, identify at-risk populations and allocate resources effectively.
Finding Care: One of the most frustrating aspects of living with AGS is the difficulty in finding knowledgeable healthcare providers. This allergy is still relatively new and not well understood, even within the medical community. As a result, I, like many others with AGS, have been forced to travel out of state to find appropriate care and specialists who understand the complexities of this condition.
What’s more, within the West Virginia House of Delegates, there are at least three of us out of 100 who have been diagnosed with AGS. This is a startling statistic that underscores the widespread and growing nature of this problem. If even within our legislative body, there is such a high prevalence, it is clear this is an issue affecting many of our constituents as well.
This situation is unacceptable, especially given the rising number of AGS cases. Patients should not have to leave their home states to receive the care they need. This is why I plan to introduce a bill in the upcoming legislative session to make West Virginia a reportable state for AGS diagnoses. By doing so, we can ensure that our healthcare providers are better equipped to recognize and treat this condition and that our state health officials have the data they need to respond effectively.
First Step: Making AGS a reportable condition in West Virginia is a crucial step in addressing this growing public health threat. With accurate reporting and data collection, we can begin to understand the true prevalence of AGS in our state, identify patterns of transmission and develop targeted public health interventions. Additionally, this data can help drive research into better treatments and, hopefully, a cure.
This legislative effort is not just about improving care for those of us who have already been diagnosed; it’s about protecting the health and well-being of all West Virginians. As outdoor enthusiasts and nature lovers, we are all at risk of encountering ticks and the diseases they carry. By making AGS a reportable condition, we can take a proactive approach to managing this allergy and mitigating its impact on our communities.
Call to Action: As we move forward, I urge my fellow lawmakers, healthcare providers and the public to join me in raising awareness about Alpha-Gal Syndrome. We must work together to ensure West Virginia is prepared to address this emerging health challenge and those living with AGS have access to the care and support they need.
Alpha-Gal Syndrome may not yet be a household name, but with the right actions, we can ensure West Virginia is at the forefront of tackling this growing issue. Together, we can make a difference in the lives of those affected by AGS and protect the health of our communities for generations to come.
Kathie Hess Crouse represents District 19, which is made up of Putnam County, in the West Virginia House of Delegates. She is a West Virginia State University graduate with an associate degree in science and a bachelor’s degree in biology. She has worked as an analytical technician at Dow Chemical as well as a microbiologist and mycologist for the West Virginia Office of Laboratory Services.
