From Putnam County Representative Cathy Hess Close
In a state like West Virginia, where outdoor activity is so integral to life, the risks associated with tick-borne diseases are well known. But despite the greater awareness of Lyme disease and Rocky Mountain spotted fever, a lesser known but increasingly prevalent threat has emerged: Alpha-Gal Syndrome (AGS). Having been diagnosed with AGS after being bitten by a Lone Star tick, I know this all too well. My experience with the disease highlights not only the personal challenges it poses, but also the urgent need for greater public health awareness and legal action.
About AGS: Alpha-Gal Syndrome is a severe, life-altering allergic reaction to galactose-alpha-1,3-galactose (commonly known as alpha-gal), a sugar molecule found in most mammals. The allergy is unique in that it is triggered by the ingestion of red meat and other products of mammalian origin, such as gelatin, dairy products, and even certain medications. Unlike most food allergies, which cause an immediate reaction, symptoms of AGS can be delayed for hours, making them difficult to diagnose and manage.
The cause of this allergy is clear: it's caused by the bite of the Lone Star Tick, which is expanding its range across the U.S. When the tick feeds on blood, it introduces alpha-gal into the bloodstream, triggering the immune system to produce antibodies. These antibodies can cause a severe allergic reaction if you ingest the mammal's meat or related products.
A growing threat: The rise in AGS cases is alarming. According to the Centers for Disease Control and Prevention (CDC), thousands of cases have been confirmed across the country and numbers are growing exponentially as the Lone Star tick continues to spread. However, the true extent of AGS may be underreported because many states, including West Virginia, do not currently require health care providers to report cases to a central database.
While the CDC has established a national database to track AGS, only a handful of states have made the condition reportable. The lack of comprehensive data has hindered our ability to fully understand the scope of the problem, identify people at risk, and allocate resources effectively.
Finding Treatment: One of the most frustrating aspects of living with AGS is the difficulty of finding knowledgeable healthcare providers. This allergy is still a relatively new disease and is not well understood by the medical community. As a result, I, like many other AGS patients, have been forced to travel out of state to find proper treatment and specialists who understand the complexities of this disease.
Additionally, at least 3 in 100 members of the West Virginia House of Representatives have been diagnosed with AGS, a staggering statistic that underscores the breadth and spread of this problem. With such high prevalence within the legislative branch, it is clear that this problem also affects many of our constituents.
This situation is unacceptable, especially given the growing number of AGS cases. Patients should not have to leave their home state to receive the treatment they need. That's why I plan to introduce legislation in the next legislative session to make West Virginia a reporting state for AGS diagnoses. Doing so will ensure that health care providers are better prepared to recognize and treat the condition, and that state health officials have the data they need to respond effectively.
First Step: Making AGS a reportable disease in West Virginia is a critical step in addressing this growing public health threat. Accurate reporting and data collection will enable us to understand the true prevalence of AGS in the state, identify transmission patterns, and develop targeted public health interventions. Additionally, this data will help spur research into better treatments and, hopefully, a cure.
This legislative action is not just about improving care for those already diagnosed; it is 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 tick-borne diseases. Making AGS a reportable disease will allow us to take a proactive approach to managing this allergy and reducing its impact on our communities.
Call to action: Now, I am calling on my fellow legislators, health care 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 issue and that those with AGS have access to the care and support they need.
Alpha-Gal Syndrome may not be widely known yet, but with the right actions, West Virginia can be at the forefront of addressing this growing problem. Together, we can transform the lives of those affected by AGS and protect the health of our communities for generations to come.
