Scott Gottlieb is a former commissioner of the Food and Drug Administration. He serves on the boards of Pfizer and United Health Care.
When I was 33, I discovered a squishy lump beneath my left arm. At the time, I was deputy commissioner of the Food and Drug Administration, so I had a working map of the medical terrain. When my doctors told me that I had Hodgkin lymphoma, they shared the various molecular markers the biopsy revealed, knowing that each one carried prognostic information that would help determine how treatable the disease would be.
“It’s EBV positive,” they told me. My cancerous cells bore the genetic fingerprints of Epstein-Barr virus.
Sometime in my youth, I had probably been infected with the virus and perhaps developed infectious mononucleosis, the syndrome most commonly caused by EBV. The virus infects about 90 percent of the world’s population, and about 1 in 4 teens and young adults develop mononucleosis when that viral encounter provokes an unusually fierce immune response. The virus was long seen as a rite of passage into adulthood. But for some people, like me, the aftereffects were not so mild.
Yet listening to today’s political discourse surrounding vaccines, one would hardly suspect how many lasting consequences can follow what first appears to be a routine infection. And unless we act to prevent the dismantling of our vaccine system, people who could be spared the long-term consequences of viral disease will lose out on that possibility.
Much of the backlash against vaccines rests on a deceptively simple premise: that the infections they’re designed to prevent are usually mild, transient and devoid of long-term effects. From this assumption flows the conclusion that any risks associated with vaccination must outweigh the benefits of preventing supposedly inconsequential diseases. For years, this reasoning has served as a central pillar of the anti-vaccine movement.
For most people, an encounter with a virus ends without an obvious consequence; but for a less fortunate subset — perhaps larger than we once assumed — the bout can leave lasting remnants that are anything but benign. For me, at some point, Epstein-Barr virus appears to have set in motion a cascade of events in my body that interacted with a genetic vulnerability I must have harbored. That process triggered a series of changes that transformed a single blood cell into a malignant one, and eventually a mass large enough for me to feel.
Today, lymphoma is no longer the only disease linked to EBV. A growing body of evidence suggests the virus may also be a necessary precondition for the development of multiple sclerosis. And EBV is hardly the only virus that leaves a permanent mark.
Type 1 diabetes has long been associated with infection by enteroviruses that can provoke an immune assault on the insulin-secreting cells of the pancreas. The connection between human papillomavirus and cervical cancer has been firmly established for decades. Reactivation of herpes simplex virus has been implicated in some cases of Alzheimer’s disease. In a small fraction of adults, infection with Coxsackie virus is believed to cause an inflammation of the heart that can have devastating and, for some, deadly consequences.
Right now, the United States is experiencing a measles epidemic. A disease that routine vaccination had pushed to the brink of elimination has returned, not through viral ingenuity but through human choice. As vaccination rates decline, the outbreaks multiply. And some of the children who contract the disease will carry its consequences for the rest of their lives.
Though measles is known for its fever and rash, its most insidious damage is deferred. By erasing much of the immune system’s memory, the virus can leave survivors vulnerable for years to infections they had already learned to defeat. It turns a brief illness into a long-term assault on their health. The virus also can inflame the brain, leaving some patients with lasting neurological damage — and, more rarely, a smoldering process called subacute sclerosing panencephalitis, where a persistent measles infection slowly destroys the brain.
As for EBV, it has recently emerged as an especially striking factor in a range of debilitating — and sometimes fatal — autoimmune diseases. While some of the clearest evidence comes from its link to multiple sclerosis, recent work has extended it well beyond that connection.
Scientists have shown that EBV-infected blood cells can persist long after an infection has resolved. Under certain conditions, they’re reprogrammed to attack the body’s own organs. Last fall, researchers at Stanford University reported that these diseased cells explode in numbers in patients with lupus, perhaps triggering the disease and its horrible symptoms.
Considering the far-reaching burden that Epstein-Barr virus unleashes, developing a vaccine against infection would seem a reasonable proposition. The National Institutes of Health had been moving forward with a program to develop such a vaccine. That effort, however, has now been cast into doubt as Health and Human Services Secretary Robert F. Kennedy Jr. curtails federal vaccine initiatives.
Drugmakers that were investing in new vaccines are retreating as well. The regulatory path for approving and recommending new vaccines through the FDA and the Centers for Disease Control and Prevention is being stymied. It’s part of a broader political campaign to suppress vaccines altogether. The consequences reach beyond today’s controversies. They shape whether we’ll have the foresight and resolve to protect children from pathogens that, for now, remain outside the margins of our abilities.
Given today’s political headwinds, Congress will need to intervene by directing funds to specific lines of vaccine research, with clear objectives, enforceable milestones and mandatory reporting from HHS to ensure compliance.
Historically, health staffers on Capitol Hill have resisted disease-specific research mandates in legislation, wary of opening a Pandora’s box allowing Congress to micromanage which scientific questions merit funding. The rise of the anti-vaccine movement has altered the landscape, pushing us to a point where congressional direction of certain research activities has become not only defensible but necessary.
Global estimates suggest that each year, as many as 50,000 people develop Hodgkin lymphoma attributable to Epstein-Barr virus. Another 30,000 develop diffuse large B-cell lymphoma. For autoimmune diseases such as multiple sclerosis and lupus, the link may be even tighter. Mounting evidence suggests that EBV infection precedes — and may account for — many, if not most, cases of these debilitating diseases.
Six months of chemotherapy cured my lymphoma two decades ago, but the same drugs left me with a lifelong risk of leukemia. Had I never been infected with Epstein-Barr virus, that chain of events would never have been set in motion.
The choice being made now to disassemble the U.S. vaccine enterprise risks foreclosing entire avenues of research and development that we may later wish we had preserved, once more of the long-term penalties of viral infections are painfully obvious.
In the meantime, another generation of patients will endure the same consequences that I once did.
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