The Cost of Living with Chronic Illness

The advances of medical science have been nothing short of remarkable over the last few decades. Illnesses such as cancer, heart disease and diabetes have become chronic illnesses. Proper ongoing medication and regular physician interaction have resulted in longer and healthier lives. Yet, the emotional and psychological costs of living with these disease states are just beginning to be understood in healthcare. As the grandfather of two type-I diabetics, I have watched first-hand how the disease is an ever present factor in their lives – 7/24/365. There is no escaping the constant reminder that their lives differ from that of their peers. From the monitoring of their blood glucose levels to the calculation of carbs in their diet, every event in their lives is driven by blood sugar levels –  either steady-state, too high or too low.

At times, I become cynical about the incentives or disincentives that stymie the clinical research so necessary to achieve real life-improving breakthroughs. We watch the prices of insulin continue to escalate to the point where there are circumstances in which a parent has to decide between insulin and adequate food or housing. I often wonder, considering the huge profits the drug manufacturers make on the sale of insulin, what role these executives play in placing speed bumps on the road to progress and breakthroughs.

I had a conversation some time ago with a pediatric endocrinologist who had left the field to go onto great achievements in other spheres. She said to me that she believed, at the time she completed her residency years ago, remarkable progress would be made resulting in an artificial pancreas that would eliminate diabetes as an ongoing disease state. The fact this had not occurred left this physician with the sense the drug profit margins were driving the lack of progress.

Juxtapose the above scenario against the ever increasing expansion of specialty and high-cost drugs coming into the marketplace with truly extraordinary price points. When we have 4% of the individuals consuming pharmaceuticals incurring almost 50% of the total drug costs on an annualized basis, we see the order of magnitude of pricing that is occurring today.

In both of these examples – one being insulin that has been on the market for decades and the other new specialty drugs that are emerging with great frequency – the drug manufacturers continually test the price elasticity of their products. They have found that people who care for their loved ones will go to almost any expense, make any sacrifice and do without other necessities in order to ensure care for their family.

In the Wall Street Journal dated Monday, September 16, 2019, in the section Journal Report – The Future of Health Care, there is an interesting article titled “You’ve Survived Cancer. What Happens Now?”  The focus is on survival from a serious illness and how people emotionally and psychologically handle the survival process. Yet, if you viewed this article from the perspective of the drug manufacturers, you see an ever increasing population that is now living with a chronic disease that used to be life ending. On one hand, there should be kudos to those researchers who have unlocked the mysteries of many diseases with remarkable breakthroughs. On the other hand, there is a population that requires ongoing expensive medications to lengthen their lives and preserve the quality of each life.

It is ironic to me, when I started to draft this article, I thought I would focus completely on the emotional and psychological impact of living with a chronic serious illness; yet as the article unfolded, I found myself turning to the economic realities of drug costs and how that impacts the behavior of the manufacturers and quite frankly of many of their research scientists. In actuality, the costs of medications, both old and new,  are largely unrestrained. One only needs to look at the opioid crisis, whose cost is incalculable to our country, to see behavior driven by greed despite its deleterious impact on the fabric of American society. In my first year of law school, I learned about the concept of Caveat Emptor, “Let the buyer beware.” This concept was focused largely on consumer goods. I never thought it would become a reality in the pharmaceutical industry.

As lives are extended through remarkable research, one of the great challenges we will face as a society is how we will support and encourage those who face these diseases with courage, fortitude and a determination to overcome their illness. The major way to accomplish this support is to provide them with the medications that give them quality-of-life at a cost that allows the pharmaceutical companies appropriate profits but with limits on their unfettered control of the pricing. This is one industry in which the concepts of supply and demand should not be the economic determinant of pricing.