Let’s consider some interesting, sobering, even alarming developments about tick-borne diseases here on the North Fork and worldwide. After all these years, there is a rising awareness of how little we know about these illnesses and their treatment. Then there’s the hidden, shadowy role of the health insurance companies as they lean on federal agencies and lawmakers to toe the line.
On the bright side, while there’s a long way to go, Lyme disease, and other tick-borne ailments, have at long last gained some serious federal attention. This came by way of the “21st Century Cures Act,” signed into law by President Obama in his last month in office. Yet it’s no surprise how special interests in D.C. strive to dilute the effectiveness of even this.
This new law, passed as a “regulatory reform,” with new funding, covers drug prices, Alzheimer’s, AIDS, cancer, and more. But with tick-born disease, this law takes a small but still significant step by setting up the “Inter-Agency Lyme and Tick-Borne Diseases Working Group,” made up of private and government experts, as well as patients and physicians, to be appointed by the U.S. Department of Health and Human Services. Its function: “coordinate and advise on all HHS policies relating to tick-borne diseases.”
This brings us to the growing debate on treatment for Lyme. As found on their website and elsewhere, the Centers for Disease Control confidently insists that four weeks of antibiotics is the absolute maximum necessary to “defeat the infection” when diagnosed within several weeks after symptoms first appear. But as for patients who continue with symptoms after this standard, four-week treatment is finished, the CDC’s official position is that they are suffering nothing more than “lingering symptoms,” which “generally improve on their own over time.” The CDC openly opposes longer courses of antibiotics.
Still, ever-increasing numbers of medical specialists report that Lyme and other tick-borne diseases often do require more than the standard, four-week treatment, even when detected early. This doesn’t apply to all patients, but large numbers nevertheless. These patients are successfully, and in many cases miraculously treated after the initial four-week program of oral antibiotics, with an additional, long-term, and more costly, intravenous program. So it makes good sense that a truly effective tick-borne working group, with a mission to “coordinate and advise” on treatment policy, would logically include members embracing this position as well as those against it – a working group with diversity of views where this treatment controversy can be ironed out.
Enter the health insurance lobby. The 30-day, oral antibiotics favored by the CDC are much cheaper than the long-term, intravenous drugs for tick-borne illness. So the health insurance companies, with their profits in mind, have jumped into the controversy about treatment of chronic Lyme and exploit this divided opinion. In fact, in unison, they deny coverage for the extended treatments. Virtually all of them, as Blue Cross Blue Shield of Tennessee puts it, call the extended treatments “medically unnecessary.”
Clever lobbyists for these insurance companies shamelessly homed in on the members of the House and Senate committees working on the draft of the 2016 21st Century Cures Act. At many a lunch and dinner at DC clubs and restaurants, in offices and up and down the halls of Capitol Hill, they plied their trade, button-holing all who would listen with the tale that any covering of tick-borne diseases in this proposed law was unnecessary.
For years, the insurance lobby won the argument that regulatory reform in this area was simply not needed, that the CDC had it under control, and that the four-week treatment was well documented and working fine. PS: Blue Cross/Blue Shield is the largest, single cash contributor to the election campaigns of most members of the health policy committees in Congress, according to the advocacy groups mentioned below.
With the push-back lobbying, however, of such citizen advocacy groups as the Lyme Disease Association, and the National Capital Lyme Disease Association (their websites tell quite a story), at least the section requiring HHS to form a working group survived the final bill. The insurance lobby persists, however, and to this day, maneuvers against citizen advocates over the working group’s membership who are to be appointed by the Department of Health and Human Services. This money-changer crew of health insurance high-rollers still push tirelessly for a working group whose members are comfortable with the four-week-treatment-for-all policy.
Who is on an advisory panel may fail to excite us, particularly a panel that does little more than issue reports that HHS can ignore. But as tick-borne diseases, and their chronic after-effects, deeply impact so many in our communities, advocacy groups finally are making headway against the D.C. power elite, at least in this struggle. Though hard to believe, they may be our only hope for a desperately needed vaccine and better treatment regimens.
The ongoing battle is well worth it, as these tick-borne illnesses are close to being the fastest growing diseases here on the North Fork and nationwide. It has now been found in spiraling numbers in half of all US counties, and on four continents. An estimated 300,000 Americans contract the Lyme bacterial infection every year. And still comparatively little is known about it. Even accurate diagnoses remain stubbornly hard to get.
A diverse, D.C.-based working group, with discussion, debate, and conclusions that cannot be ignored, is the least that HHS can do for the people. On our North Fork, and throughout America, these crab-like bugs, at the same time tiny and monstrous, are on an accelerating rampage. We have to rally our forces with far more commitment.