On Feb. 11 and 12, the Center for Lyme Action held its first ever DC Fly-in, with over 60 advocates from around the United States coming together to recognize not only the work of the advocates but honoring the Members of Congress and Administration officials, who sponsored, co-sponsored and supported the Kay Hagan Tick Act bill that was passed through the Senate and House and signed into law by the president on Dec. 20. One of the bill’s sponsor, Senator Susan Collins, had previously stated that this was history in the making, just how quickly things moved from drafting the bill to it being signed into law all within the same year.

As one of the advocates involved in the Kay Hagan Tick Act bill, I was in awe of this entire process. I’ve been involved in legislative efforts here in Maine and that was all I had to compare my experience to. Passing legislation at a federal level is very different and as we reached out to the various senators and representatives, it became very clear just how needed this bill was. Everyone had a story. Everyone that we spoke to in support of the bill had been touched, in one way or another, by tick-borne disease.

The DC Fly-in hosted an awards dinner Tuesday evening, recognizing the efforts of and presenting Lyme Champion Awards to Senator Susan Collins (ME), Senator Tina Smith (MN) Congressman Chris Smith (NJ) and Congresswoman Anna Eshoo (CA). These folks commended the efforts of the advocates sharing that they “were the experts on the subject matter of Lyme and tick-borne disease” and through the steadfast commitment and efforts, advancements will be made.

“Lyme is a frustrating and debilitating disease but it’s a problem that we can solve,” said Bonnie Crater, co-founder of the Center for Lyme Action. “Our award recipients have demonstrated extraordinary leadership in finding a cure and we are honored to have them as long-term partners in this important fight.”

Senator Collins thanked the group for all its hard work, adding, “Lyme disease is finally receiving the attention this growing health threat deserves.”

"Fighting tick-borne disease, and in particular, Lyme disease, is a priority for the president and this administration," said HHS Deputy Secretary Eric Hargan. "HHS will be leading the charge in this effort, as we do on many serious infectious disease threats, especially around the innovations we need to combat such threats. We are grateful for the work that so many have done to illuminate this challenge and drive action to support and give hope to those struggling with Lyme disease and other tick-borne illnesses."

Along with Hargan, others recognized for their contributions and advanced collaborations through the HHS Lyme Innovation Initiative were Daniel Scavino Jr. (Asst to the president and senior advisor for Digital Strategy), Michael Kratsios (chief technology officer of the U.S. and deputy asst. to the president), Mathew Lia (asst. to the president for Innovation Policies and Initiatives), Edwin Simcox (chief technology officer HHS), Dr Kristen Honey (innovator in residence and Lyme Innovation founder) and Alexandra Cohen (president and co-founder of the Steven & Alexandra Cohen Foundation).

On Wednesday, the advocates were armed with information to share with members of Congress to ensure that appropriators understood the gravity of Lyme disease and the need to fully fund the Kay Hagan Tick Act and growing more funding for research.

With over 400,000 new cases of Lyme disease reported in all but one U.S. state (Hawaii), the need to counter this growing epidemic is more urgent than ever. The need for organizations to come together and collaborate, to share data and to brainstorm new innovative ideas will hopefully reveal a much-needed cure for an out of control, but preventable, infectious disease. More education is need so that medical providers not only recognize what they are presented with but have the knowledge and access to resources for better diagnostic and treatment options.

With the support of the president and his administration, 2020 will be the year that we make a difference. You don’t have to like everything about this or even the people involved but know this: ticks do not discriminate. They don’t care if you’re an adult or child, male or female, healthy or sick, human or animal. This problem requires everyone’s attention, whether its your own prevention practices or advocating when the need for better medical options are needed. It’s knowing your rights. It doesn’t matter who you vote for you or what domination your faith is. No one is immune from a tick encounter and that is why we need all hands on deck! We need everyone, especially those in positions to open doors and help us to make a difference. With this new law in motion, now is the time for us to stand together and say, “Enough is enough. No more!”

So, if everyone is talking and sharing a similar conversation at local, state and federal levels, how can we all be so wrong? Well, we’re not and we’re not going to settle for what has always been. Talks at federal levels have already prompted updates to the CDC website and you can thank your. Advocates for not backing down, for not settling for anything less than the truth. This is not going to change overnight but its going to change the trajectory of the path that this out of control, infectious disease has commandeered for decades. A disease that has many labels, many symptoms and can masquerade and confuse even the best specialist in the field. Our lives mean something even if medical providers don’t understand what we’re going through. This is not about us, it doesn’t mean that we’re faking it, it means that there is a need for more education, a need for the controversy to end and the divisiveness of the medical community to come together ~ once and for all ~ for the betterment of the community and the patients that they serve.