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Part of my contribution to the discussion is below.
Lyme disease: Who’s right, who’s wrong, and who decides.
In Dr. Elizabeth Maloney’s view scientific uncertainty is the root cause of the Lyme Wars. I disagree. While scientific certainty would resolve the Lyme Wars, it is not the cause of them.
There are plenty of illnesses that are shrouded in uncertainty where no one is fighting. Take breast cancer, for example. No one knows whether a lumpectomy or mastectomy is “best.” So, in consultation with their doctors, patients choose. No, the core of this debate is about who decides what is best when science is uncertain and peoples’ lives are on the line.
Of all of the players in healthcare, the patient is the only one whose interests are not ultimately commercial. Patients want to be restored to health. Because of this, patients are referred to as “the ultimate stakeholders” in healthcare. But while patients are the most deeply affected, they also have the least power.
Medicine has three realms of power: the power of the purse, the power of scientific expertise, and the power of the king maker, who can make or break careers. King makers are called “key opinion leaders.” Big pharma grooms and promotes them. Colleagues looking for peer support in grant applications kowtow to them. And insurers love it when they pen restrictive guidelines.
The power of the purse is held by insurers, pharma, and government grant-making institutions, while the power of expertise is held by scientists and physicians. Patients have no power in any of these realms.
The commercial interests of other healthcare players follow basic economic incentives. For insurers, it’s about controlling costs; for pharma, it’s developing blockbuster drugs; and for physicians, compensation in exchange for services. Researchers want grant funding and lucrative patents. Being a king maker helps secure both.
Insurers only pay for services within the medically accepted standard of care. Today, that standard is typically set in treatment guidelines written by medical specialty society panels populated primarily by researchers. The panelists who devise these guidelines are extremely influential. They determine insurance reimbursement standards, which tests and drugs are recommended, which researcher’s work is cited and promoted in the guidelines, and, ultimately, what treatment options are available to patients.
Everybody who isn’t sitting directly at the table wants a dog in the hunt. Professional relationships developed over time, leanings, loyalty to a research paradigm or a king maker, pharmaceutical ties, promotion of one’s own research work or that of influential peers—all of these factors impact decisions. These are all breathtakingly obvious stakeholder interests. This begs the question—are the chairs at the table populated by those with expertise or by stakeholders of varying shades? Are their goals aligned with improving patient care or is that more of a coincidence when it happens?
Let’s go back to the only question that should matter in healthcare: Did the patient get better? The answer may depend on how the question is framed. Or, going one level deeper, it may depend on who is framing the question, designing the studies, selecting the studies for review, and interpreting the results. Anyone modestly clever can game this system. And many would like to do so. One straightforward way to secure the desired result is to select guidelines panelists who either agree with you or who are beholden to you—the strategy of the key members of the IDSA’s recently convened Lyme panel.
The happiest patient is one who has no need for medical intervention. Sick patients want treatment options that may restore health. They want to be partners in making decisions that will affect them most of all—especially decisions that involve trade-offs between the risks and benefits of treatment. They want these decisions to take into account their individual circumstances: does their illness interfere with their ability to work, to function, to enjoy life?
Patients weigh these matters differently from physicians, researchers and even other patients based on their individual circumstances, their values, and the risks they are willing to take. This right to make the decisions that affect the course of one’s life is called autonomy. The concept is that, in the absence of compelling reasons, third parties should restrain from interfering with an individual’s right to make certain fundamental decisions. Science that is certain may be compelling, but uncertain science inherently requires the consideration of things that are not science-based.
The opposite of autonomy is paternalism—father knows best, the doctor knows best, and the expert know best. But do they? In healthcare, stakeholder interests conflict. When someone else represents the patient, it is likely that the patient interest will be subordinated to the interests of others.
When science is uncertain—as it frequently is in medicine—the question is what to do in the face of that uncertainty? The answer is one of values. Is it best to intervene to restore health or to allow nature to run its course? Are we talking about a common cold or cancer? What about Ebola? Many die, but still we try. The question we seek to answer is not “what is correct at the 95% level of probability in science,” but rather “what is the right thing to do” as an ethical imperative.
At the end of the day, we are talking about people’s lives, not abstract science. When the IDSA treatment protocols fail—as they too often do—patients are left sick with no treatment options. Why is this “scientific” debate so polemic? Because it is not about science, it is about values, beliefs and opinions. It is about who gets to decide, who bears the consequences of those decisions, and who is accountable.
Of course, a guidelines panel can leave such decisions to the individual patients and their doctors. This is what is done with breast cancer. Result? No war. Yet, when science is uncertain and patients are denied decision-making power over their own lives—the current situation in Lyme disease—things become contentious.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org.You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.
