By Phyllis Mervine

I was on Zoom a few weeks ago at the Celebration of Life service for Pat Smith, longtime president of the Lyme Disease Association and veteran of the Lyme Wars who died in August. The quiet gathering of family, old friends and colleagues was a contrast to the whirlwind that was Pat’s life in the Lyme disease world.

Over the years, LymeDisease.org developed an extraordinary and dynamic working partnership with Pat Smith. She first popped up on our radar when the Lyme Disease Association of New Jersey (LDANJ) recruited her as their president in 1997. At the time, LymeDisease.org published a newsprint version of the Lyme Times, covering patient advocacy, politics, science and research, which we distributed across the US.

We introduced Pat to our readers as a mom of three, two of whom had Lyme disease. In later years, we would hear in excruciating detail the experience of the Smith family as they sought help for their very ill daughters. No one who heard Pat speak of it could ever have forgotten it. I believe that experience was at the center of what drove Pat.

Linking arms

Pat increasingly turned her attention to national events, as did we. Her organization dropped the NJ to become Lyme Disease Association and LymeDisease.org became an official affiliate of the LDA in 2002. We linked arms and became close working partners.

Alongside Time for Lyme, a Connecticut nonprofit, we worked on early versions of federal legislation to increase funding for Lyme disease and establish an advisory committee. I asked Pat for a regular report of LDA activities to print in every issue of our Lyme Times. It was hard to keep her down to one page.

Looking at the LDA history on their website, you might think a team of at least a dozen was running all the programs at LDA. Most of it was Pat. She had her finger in every pie. The patient protests, when medical boards were sanctioning our doctors; the decades-long saga of the federal Lyme bills, going through multiple iterations but never getting passed; Pat’s close relationship with New Jersey Congressman Chris Smith, who stuck with us year after year.

There was a surge of state bills after our first big victory in Rhode Island with an insurance bill, followed by other successes to protect Lyme doctors in Rhode Island, Connecticut, Massachusetts, and California. Pat was there, serving local efforts, going wherever she was called.

Pat organized the pushback on the vaccine in 2001 when patient adverse event reports started coming in. Even pharmaceutical giant Smith-Klein Beecham was no match for Pat. She was unrelenting. After she took scientists to meetings in Bethesda, they finally withdrew the vaccine, calling Pat late on a Friday night, citing “poor sales.”

The publication of the International Lyme and Associated Diseases Society (ILADS) guidelines in 2004 gave advocates yet more ammunition to emphasize the “two standards of care” and the importance of informed patient choice. Both we and LDA endorsed the ILADS guidelines.

Troublesome guidelines from IDSA

The civil investigation of the Infectious Diseases Society of America (IDSA) exemplified the extraordinary collaboration between Lyme community leaders on a project none of us could have done alone. We knew the IDSA was preparing new guidelines for Lyme disease, and we knew they wouldn’t be good for patients.

Our CEO, Lorraine Johnson, worked for two years with an antitrust attorney on an angle for an attack on IDSA. Time for Lyme provided introductions, and Pat played an integral role with Lorraine.

So, in 2006, when IDSA published new restrictive guidelines, we were ready for them. They were stunned to find themselves almost immediately subjected to an anti-trust lawsuit filed by then-Connecticut Attorney General Richard Blumenthal.

The unprecedented legal action changed the power dynamic. It was a huge step forward in the role patients would play in guidelines and policies that affected them. “Patient-centered” started to become real.

Then there was the Columbia Lyme Disease Research Center, which Pat helped set up in collaboration with Time for Lyme, and the annual scientific conferences. At the Celebration of Life, Dr. Brian Fallon spoke eloquently about working with Pat, how she was always up on the cutting-edge science and pushing the envelope for patients. We all looked forward to the scientific updates and annual meetups for the affiliates.

Congressman Chris Smith is a real hero in our story, and Pat’s close relationship with him was critical to the success of many of our efforts. In 2012, he and Pat orchestrated an historic congressional hearing on Lyme disease where Stephen Barthold, PhD, Distinguished Professor at University of California, Davis, testified that unless you espoused a certain point of view on Lyme disease, a researcher could not get published or obtain funding from the National Institutes of Health.

Rep. Smith called the previous 10 years of Lyme research a “lost decade,” lamenting that Congress had not yet approved the federal advisory committee he had first proposed in 1992. An almost identical committee addressing autism had been very productive in the same 10 years, he said.

Tick-Borne Diseases Working Group

More recently, Pat was an absolute star on the federal Tick-Borne Diseases Working Group (TBDWG), as if she had trained for it all her life. No one could have matched her in that role. She knew Robert’s Rules and the federal rules governing working groups backwards and forwards and brilliantly wielded them to protect the Lyme community’s interests on that panel. She was fearless and spoke truth to power. As Dr. Betty Maloney said at the service, Pat was “sharp-elbowed.” Patients finally had a seat at the table and Pat wasn’t going to waste the opportunity.

The TBDWG itself was a product of the unique collaboration between LymeDisease.org and LDA. Lorraine called it a one-two slam-dunk. At the last minute, certain legislators tried to change the language of the bill. In a flurry of late-night calls, the patient community authorized Pat to refuse to accept it, period. We had waited this long—we’d wait longer to get it right, we said. We held our breath until they capitulated, and the wording stayed the way we wanted it.

Pat’s relationship with the indefatigable Congressman Smith paid off and the communications machine LymeDisease.org had built up over the years generated 14,000 letters and calls to legislators at precisely the right moment. The 21^st Century Cures Act has had a profound impact on the Lyme community by boosting the role of patients.

Pat made a few trips to California, including to a Lyme conference in San Francisco. Pat and I shared a room down by the waterfront in the tourist area. Just as we got settled in, a fire broke out across the street at Ghirardelli Square. I think it was a four-alarm fire. As the flames grew, our windows got hot. It was not clear whether we would need to evacuate. However, in the meantime, Pat excitedly called a local radio station and gave them a blow-by-blow description of what was going on, while I retreated to the bed with a pillow over my head. She must have gone on until well after midnight.

Energy and dedication

Pat’s death has left a huge hole in our community, as well as in her family. We’ll miss the incredible energy and dedication of a truly heroic woman. As a role model to future advocates, she set the bar high. At the Celebration of Life service, longtime colleagues applied metaphors like “a lioness protecting her cubs,” a “tornado,” a “five-star general,” a “Lyme warrior” and “force of nature.”

She was all these things, but the comments of her LDA colleague Corey Lakin touched me the most. He quoted from the Gospel of John: “No one has greater love than this: that someone lay down his life for his friends.” Pat really did lay down her life; she devoted many years for the benefit of complete strangers. Without thought for herself, she gave her all.

Phyllis Mervine founded LymeDisease.org in 1989.