A recent article from the San Francisco Business Times spotlights an issue that doesn’t get enough coverage in the mainstream media: insurance barriers that prevent Lyme patients from getting the care they need.

In this case, they’re talking about diagnostic testing. As reporter Ron Leuty explains, IGeneX has created an FDA‑cleared Lyme test that nearly doubles early detection, yet it remains accessible only to patients who can pay out of pocket. (And depending on a few variables, that price tag could be hundreds of dollars.)

Alas, being forced to self‑pay for diagnosis and treatment is nothing new to the Lyme community. We’ve been in that unfortunate situation for years. But for a disease where early diagnosis and treatment can change everything, that’s a systemic failure that deserves to be fixed immediately.

This is a national issue. It affects patients in every region where ticks are spreading and early symptoms are missed. In other words, pretty much the whole country.

New immunoblot test

In the recent study highlighted by the Business Times, IGeneX’s new immunoblot tests detected 58.4% of early Lyme cases, compared to 30% with the standard two‑tier system.

That difference is enormous. Early Lyme is the window where you have the best chance of preventing long‑term complications, such as arthritis, heart involvement, and neurological damage.

For the Lyme community, the next best step would be for CMS — the Centers for Medicare & Medicaid Services, the federal agency that sets reimbursement rates for medical tests — to decide whether they will pay for this new diagnostic, and if so, how much. Private insurers and national labs typically follow CMS’s lead. Without a CMS price, coverage stalls everywhere.

A huge assist from the Lyme Disease Biobank

One part of this story deserves special recognition: the role of the Bay Area Lyme Foundation’s Lyme Disease Biobank, a national resource that has quietly become one of the most important engines of Lyme research. The biobank now holds close to 100,000 well‑characterized Lyme samples — blood, tissue, plasma, urine — from patients at different stages of illness. Such samples are critically important to the research process.

Kudos to the biobank team—and to all the patients who donated those samples. Their contributions are accelerating national progress.

Now it’s time for CMS to get on board.

Link to San Francisco Business Times article. (Behind a paywall.)

Learn more about the Lyme Disease Biobank.

Learn more about the new IGeneX test.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.