Major news day for lyme disease!

As many of us know, Lyme disease identified and treated early means a quick road to health.

Left to invade the body deeply over time, Lyme and other tick-borne infections can be disabling—and even fatal. Treatment in those cases can be a long, expensive, and rocky road.

I should have been on the shortest path. I was treated based on a tick embedded in my hip, a rash, flu-like symptoms, and severe pain all over my body.

But when my test came back negative, my practitioner stopped the month of antibiotics that would have saved me from a nightmare that has been going on for three years now.

On Tuesday, members on the House side of Virginia’s General Assembly voted on a bill requiring doctors to tell patients that Lyme testing is inaccurate. So when I had the chance to join fellow Lyme advocates in Richmond the day before and help inform delegates, I grabbed my cane and pain medication and climbed carefully into a friend’s van.

I wouldn’t have missed that day for anything.

I saw first-hand what the long-term commitment and energy of many people can accomplish. I met activists who have worked hard to inform legislators about Lyme’s complexities, including a young woman who lost her ability to speak because of Lyme infection in her brain. With treatment she is getting better, and came to lend her voice in the hope of saving others from years of illness.

I met a smart school girl with lovely blond hair and black knee braces who teamed up with her mother to share the story of their long-time struggle.

And I met Monte Skall, founder of the National Capital Lyme Disease Association (NATCAP for short). An insider with her own Lyme story, Monte and her husband Gregg have dedicated their time and energy to education, support, and advocacy for 14 years.

As a leader in getting this legislation off the ground, NATCAP let Virginians know all about the issue at hand and how to contact their representatives at each step of the legislative process to get the bill passed.

The goal seems straightforward: Let’s get doctors to let people know testing is inaccurate. That seems like a no-brainer, right?

But some doctors have fought the bill, as seen in these debates in the Senate and House. Believe me, it has been one hard-fought process to gain the best possible language in that bill. I wanted to help delegates understand what this bill would mean for patients.

Frankly, I didn’t know what to expect. We were graciously welcomed in true Virginia style, and met with legislators and aids who were attentive, engaged, and receptive to our message.  They took the time to listen, and asked insightful questions. And many of them voted “yes” on Tuesday.

This history-making leap forward shows what dedicated people can accomplish when they come together, from legislators and organizations like the National Capital Lyme Association to each and every individual who lends their time.

Here’s the most amazing thing: Like Lyme activists everywhere, many here in Virginia struggle to get help for others while coping with serious Lyme symptoms themselves. The fact that we can make a difference despite our health challenges is nothing short of astonishing.

But we’re not there yet. We need the Governor’s signature. If you live in Virginia, visit NATCAP in the coming days to find out how you can help reach him. 

Here’s hoping this week’s success inspires people everywhere to work with their government representatives on this health crisis. Make a plan today to call, write, email, or visit yours.

Because it takes a village. And you have the power to help bring that village together.

Bill 1033:

A. Every licensee or his in-office designee who orders a laboratory test for the presence of Lyme disease shall provide to the patient or his legal representative the following written information:

 “ACCORDING TO THE CENTERS FOR DISEASE CONTROL AND PREVENTION, AS OF 2011 LYME DISEASE IS THE SIXTH FASTEST GROWING DISEASE IN THE UNITED STATES.

 YOUR HEALTH CARE PROVIDER HAS ORDERED A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE FOR YOU. CURRENT LABORATORY TESTING FOR LYME DISEASE CAN BE PROBLEMATIC AND STANDARD LABORATORY TESTS OFTEN RESULT IN FALSE NEGATIVE AND FALSE POSITIVE RESULTS, AND IF DONE TOO EARLY, YOU MAY NOT HAVE PRODUCED ENOUGH ANTIBODIES TO BE CONSIDERED POSITIVE BECAUSE YOUR IMMUNE RESPONSE REQUIRES TIME TO DEVELOP ANTIBODIES. IF YOU ARE TESTED FOR LYME DISEASE, AND THE RESULTS ARE NEGATIVE, THIS DOES NOT NECESSARILY MEAN YOU DO NOT HAVE LYME DISEASE. IF YOU CONTINUE TO EXPERIENCE SYMPTOMS, YOU SHOULD CONTACT YOUR HEALTH CARE PROVIDER AND INQUIRE ABOUT THE APPROPRIATENESS OF RETESTING OR ADDITIONAL TREATMENT.”

B. Licensees shall be immune from civil liability for the provision of the written information required by this section absent gross negligence or willful misconduct.

2. That the provisions of this act shall expire on July 1, 2018.

Tagged: advocacy, House Bill 1033, inaccurate testing, legislators, lyme advocates, lyme bill, lyme disease legislation, lyme testing, Monte Skall, National Capital Lyme Association, National Capital Lyme Disease Association, victory, Virginia