Despite our country’s political divisions, I trust we are all praying for Senator McCain as he confronts his glioblastoma diagnosis. Unfortunately, I can guess the anguish Senator McCain and his family are experiencing. My wife Carolyn, a breast cancer surgeon and a breast cancer survivor, was diagnosed with the same malignant brain tumor in 2010. As a cancer researcher and oncologist myself, I knew all too well the challenge we faced.
The night Carolyn was diagnosed, I held her and tried to comfort her with the knowledge that glioblastoma treatment was improving, with some patients living well beyond the expected 1 to 2 years. Carolyn, ever courageous, was quick to note all the ways we were lucky. We had health insurance, access to world-class medical care, and savings. We both knew that, for many, a cancer diagnosis brought with it the specter of financial ruin.
Having trained at Duke, Johns Hopkins, and Harvard, I have seen not only the best that American medicine can offer but also its inefficiencies and inequities. Carolyn’s illnesses brought home the questions of whether health care is a right or a privilege, and whether it is fair to ask people to pay for the health care for others.
Even if not moved by a sense of altruism, we should remember that the health of our countrymen affects us all. For example, health care can stem the spread of communicable diseases, and economic growth hinges on having a healthy and productive workforce. Furthermore, we all pay for the health care provided to the uninsured; therefore, it is prudent to have it delivered as low-cost primary care rather than expensive (and potentially avoidable) emergency department visits. Saddling taxpayers and insured patients with avoidable costs generated by the uninsured seems more unjust than compelling people to carry health insurance in return for the health care they receive when it is needed.
Market forces can solve many problems, but I am unsure that health care is one of them. First, healthy people wildly underestimate the likelihood that they will ever get sick or be injured, and therefore undervalue health insurance. Moreover, the quality of health insurance policies, as Carolyn and I learned, is only truly revealed once you need them. Second, most people can decide whether to splurge for a luxury, but are not equipped to monetize life and death decisions. Even with all of our training, Carolyn and I found it virtually impossible to place relative values on our different treatment options. It is a lot to ask the average patient to be an educated consumer, even assuming health care costs become more transparent than they are today.
This is why the health care debate is so contentious: Assuming everyone should have at least a baseline level of medical care, we are left with 3 unworkable or distasteful options. The first option is that we provide “premium” health care to all, irrespective of cost. This is impractical because health care costs increase exponentially as one seeks to gain the last few percentage points in improved clinical outcomes. The second option is that we limit everyone to some agreed upon “standard” level of health care, but this would mean preventing people from using their wealth to seek the best care possible and would also stifle private investment in medical innovation. I am therefore left with the third option: Everyone should be guaranteed a standard level of care, but those who can afford it should be free to pursue premium care. Although many Americans, including me, find this idea abhorrent, I believe the benefits of providing standard care, including cost-effective interventions that can often delay or prevent later problems, would eclipse the frequently modest outcome differences between premium care and standard care. Agreeing on what should be standard will require data-driven decisions about the benefits of various treatments as well as dispassionate discussions about what our country can afford. Shouting “death panels” won’t help.
V1.0 of the Affordable Care Act is imperfect, but it has dramatically expanded health care coverage. To operate, insurance companies need to know the rules so they can calculate their risks. It is disingenuous for politicians to send ambiguous signals to insurance carriers and then claim the Affordable Care Act is failing when they opt out or raise premiums. We deserve a bipartisan effort to augment what is working with the Affordable Care Act and to fix what is not.
Soon after Carolyn’s glioblastoma diagnosis, we assembled a “dream team” of scientists and clinicians. She needed 2 brain surgeries, 3 years apart. Both times she doggedly regained the use of her body with the help of talented therapists, some of whom had honed their skills working with marathon bombing victims. She was one of the first patients with cancer to have her tumor’s DNA sequenced as a guide to experimental therapies. Unfortunately, her bone marrow eventually grew intolerant of her medicines, and she died in July 2015. Five years was not enough, but we were grateful for every day, including our 25th wedding anniversary and our eldest’s college graduation.
I cannot prove that Carolyn’s custom therapy enabled her to live 5 years. What is important, however, is that no one in our society dealing with a serious illness should feel like they are alone. Diseases ignore party affiliations. Indeed, glioblastoma affected both Senators Kennedy and McCain. There but for the grace of God go us. Perhaps this is the moment, and this is the cause, to come together.
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-William G. Kaelin Jr, MD
This article originally appeared in the March issue of The American Journal of Medicine.
