The Downside to Beating the Odds

By now, I am supposed to be dead. Nearly 3 years ago, I was diagnosed with stage III pancreatic cancer. Surgery has never been possible for me. The 5-year survival rate for patients with advanced pancreatic cancer who are fortunate enough to undergo surgery is only around 15%. My family was told I might live 9 months, yet here I am, not merely surviving but maintaining a reasonably healthy appearance and activity level. The doctors, nurses, and others who care for me at one of the finest cancer hospitals in the world are justifiably proud of my unexpected longevity.

Three years of continuous chemotherapy have inflicted many medical and psychological side effects. Cumulatively, they are depressing and sometimes disabling, but I manage to enjoy some of my extended time among the living. Cases like mine are a triumph of the American healthcare system, which might not always cure illnesses but often transforms them. As is the case with many other cancers, my acute life-threatening illness has been transformed into a chronic one.

It costs a fortune to keep me alive with this chronic illness, and much of it is paid by Medicare. This government-run health program has its bureaucratic frustrations, but during chemo and at every other treatment encounter, I thank the gods and the US government for Medicare. I also have private, for-profit health insurance coverage. This pays only a fraction of my healthcare costs and inflicts far greater stress and insults.

Living with chronic cancer means living with chronic physical and emotional problems, and my private insurance company seems unprepared to handle these. For example, I require daily blood thinner injections. I would love to skip them, but my doctor says they are needed to prevent life-threatening blood clots—just another problem one must navigate when living with chronic pancreatic cancer. The medication comes in plastic syringes, each containing a mere 31 mg of blood thinner. These syringes are absurdly expensive; at $100 a shot, they come to $3000 every month! I have no idea why they cost so much, and inquiries to my private health insurer and the drug manufacturer have gone unanswered.

My insurer only authorizes 5 syringes of the blood thinner at a time. When these run out, my doctor and I must fight anew for reauthorization. The next bout usually starts as my veins are being flooded with chemicals that make me nauseated and fatigued. Twice now my insurer has refused to pay for the blood thinner. Every month I brace myself for the possibility of another coverage denial and wonder what justifies this continuous cycle of torture.

Despite reams of correspondence and multiple telephone calls from me, my doctors, and my pharmacists, the insurance company has never offered a rational explanation for the 2 coverage denials. One recent communiqué—a veritable cacophony of bureaucratic doublespeak—predicted that I would likely soon reach an unspecified lifetime limit for the cost of this medicine. I wrote to ask what this limit might be, but like many of my other queries, this one also received no response.

I have been fortunate enough to be able to receive counseling to help me cope with the onslaught of my chronic illness and to help me adjust to the necessary changes in my life and lifestyle. Now, that service is at risk. The same week that my private health insurer suggested future coverage of my syringes was in jeopardy, I was informed that my premiums were going up 18% and that the company was delegating management of counseling and support services to one of its subsidiaries. Never fear, the letter assured me, “Your health benefits will not change.”

That same day, I received another letter from my insurer. This one said the counselors at Memorial Sloan-Kettering Cancer Center (MSKCC), who have helped me to survive the treatments, as well as the disease, would no longer be covered “in network.” Representatives from MSKCC have assured me they have not made any changes, which means it must be my insurer that made the change. The insurer’s customer service people are always very sorry that they cannot help, expressing regret in polite but contradictory terms, never deviating from the indecipherable corporate jargon they call communication. I must now play a pea and shell game with my private insurer to see if I can find the now-hidden benefit.

As I hear about people protesting a “government takeover” of medicine, I wonder who those people are who would rather keep the current monstrosity of confusion and contradiction we have inadvertently created. It is not only the uninsured left feeling frustrated and angry. The supposedly responsible people like me who buy health insurance share their indignation. And the country’s employers have grown dizzy from the spin of health plan pitches as they try to keep their employees insured without breaking the bank. My former employer changed health insurers every year or two in an effort to hold costs down, but every year rates increased while benefits decreased.

Doctors are also upset. Few can—or want—to do their own paperwork. Even sole practitioners must hire someone to navigate the bureaucracies and inscrutable practices of a vast assortment of public and private insurers and their multiplicity of subsidiaries and subcontractors. I know of a married couple who run a modest primary care practice. Despite years of study to become a physician, Mrs Doctor is so busy doing the paperwork that this cheerful, energetic woman no longer has time to see patients. This is another example of the sad evolution of American healthcare.

Healthcare has indeed been taken over by a bureaucracy, run not by the government but by a league of private, for-profit insurance carriers. The notion that there is a private doctor-patient relationship for the government to intrude

upon is a myth. It has been years since doctor and patient have made healthcare decisions without a third party looking over their shoulders. I find it hard to believe that any government bureaucrat could be any more intrusive, unintelligible, or indifferent than some of today’s corporate health insurers.

It is not a government takeover that is needed, but rather a makeover that begins with addressing the problem honestly. We must acknowledge that private health insurance carriers are in this business to make profits. Like an investment bank or a large retailer, they are accountable to shareholders, who expect greater and greater returns. The only way the health insurers can accomplish this is to minimize benefits and maximize premiums.

The American healthcare system should be the marvel of the world. It has successfully transformed many illnesses from deadly to not so deadly. At the same time, it has fallen victim to its own success, failing to adapt to the needs of patients with acute illness once considered terminal who are now living with what has become a chronic disease. Those of us who are sick and weary would like to spend this gift of time living fully. Instead, we find ourselves spending countless hours trying to negotiate a patchwork system put together with as much sense as a Rube Goldberg contraption. I know one good place where my insurer, who dutifully deposits my premiums each month, can start. How about answering my mail—in plain English, please?