Personalized Medicine and the 529 Option

Personalized Medicine and the 529 Option

L. Michael Glode, MD, FACP, FASCO

Aug 25, 2020

Let me stipulate that I am not an ethicist. I live in a state that passed the End-of-Life Options Act for death with dignity, which I lobbied for. I also almost exclusively care for older men with prostate cancer, so my practical experience with patients dealing with broader tumor types has become limited.

I thought the opinion piece by Drs. Robert Peter Gale and Hillard M. Lazarus (The ASCO Post; August 10, 2020) on the challenges of drug costs, efficacy, and a vibrant pharmaceutical industry was superb. They nicely summarized both the remarkable progress in cancer drug development as well as the limited efficacy that many of our newer (and very expensive) drugs often provide.

Over the past decade, when discussing the option of a “long shot” novel drug option covered by Medicare with a patient who has advanced refractory disease, I have frequently encountered a statement similar to, “I guess so—what other option do I have?” This provides the opportunity to re-discuss palliative care and hospice options, hopefully in an empathetic and caring way.

But what if there really was another option—a third way? The U.S. health care system (Medicare, in this case) has agreed to pay for FDA-approved drugs with limited efficacy. Millions of dollars are spent on medications that may prolong life by only a few months, and often at the expense of limited, if any, improvement in quality of life. These funds are provided “free” to the patient by our society, but if he/she opts out of such an option, the funds are not available for any other use, even though they have, in a sense, been set aside or approved for the patient.

In the era of personalized medicine, could we imagine that a patient might opt to use these funds for a purpose that he/she found far more attractive? An example might be that some percentage of the average cost of trying a $10,000/month drug for X months (easily calculated from the phase III studies leading to approval of said drug) would be placed in a 529 plan for use by the patient’s grandchild or similar. The remaining percentage would be utilized for hospice care, or could (in a zero sum calculation) be used to offset the cost of the drug for patients who might choose the active treatment option, thereby saving society some of the rapidly escalating (and probably unsustainable) costs.

In my opinion, this form of personalized medicine would be more holistic. Further, there must be some calculation for any society regarding how much is spent on health care versus infrastructure versus education, defense, safety, or the myriad of other needs. Why not let our patients participate in such decisions? I suspect that given an option, many of my older male patients would rather see funds directed toward their grandchildren or a financially healthy society than a few extra months of stabilizing their PSA while feeling increasingly fatigued and less vibrant.


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