Opinion: Cancer-drug shortage creates ‘death panels’ for patients like me

More than a decade ago, conservative Republicans led by Sarah Palin created a furor by falsely claiming that proposed federal legislation to provide end-of-life counseling would result in “death panels” that would “pull the plug on Grandma” to save money.

Today, something resembling real death panels have sprung up at cancer-care centers across the country, not because of a government plot but because of a poorly regulated free market. A national scarcity of front-line chemotherapy drugs — especially cisplatin and carboplatin — has resulted in rationing the life-extending medications.

Many cancer centers have drawn a line in the sand. They offer certain chemo drugs only to patients they think they can cure and withhold them from those they deem incurable, even if the drugs would extend their lives. I’m one of hundreds of thousands of cancer patients on the wrong side of that line and now deemed expendable.

For more than five years, I’ve been under treatment for a rare cancer that has never been precisely identified, partly because the original tumor has never been found. But the cancer, first detected in my neck, has spread to my lymph nodes and beyond.

My oncologist at Stanford Medicine Health Care in Palo Alto suspects I have apocrine carcinoma, which develops in sweat glands. Because there is no good data or treatment protocols for it, he has had to make educated guesses on medications.

Before switching my treatment to Stanford, I had two surgeries and 33 radiation treatments at Kaiser Permanente in San Jose and Santa Clara. When my cancer reappeared a year later, my Stanford doctor gave me hormone therapy and then immunotherapy, both without success. He then put me on a chemo concoction of paclitaxel and carboplatin that quickly cleared up the cancer, which appeared as bruise-like marks on my face, neck and shoulder.

His plan was to keep me on the chemo treatment as long as I could tolerate it. After nine weekly infusions, I was bald, exhausted and suffering sharp pain from nerve damage in my hands and feet, a common side effect of paclitaxel.

Treatment was terminated, and I enjoyed six pleasant months before the bruise-like marks reappeared. The chemo treatments then resumed, but with a longer period between infusions. They kept the cancer in check for about six more months, until I had a bad reaction during an infusion and ended up in the emergency room.

My doctor prescribed a different chemo drug that had little effect, if any. He then wanted to resume the paclitaxel and carboplatin treatments, but Stanford now provides carboplatin only to those with curable cancers. Despite the scant data on my kind of cancer, it’s considered incurable.

Preventable crisis

Triage makes sense in times of war or natural disaster. But the current chemo drug scarcity is a preventable crisis caused by a lack of market controls. Most of the drugs in short supply — there are dozens of them — are generic and inexpensive, so cheap that most American pharmaceutical companies refuse to produce them because profit margins are small. Instead, they focus on more expensive cancer drugs, which are not in short supply.

Profit margins on the scarce drugs are thin largely because of consolidation of wholesale drug purchasing groups. According to the Financial Times, three groups now control 90 percent of the U.S. market, giving them powerful leverage on prices. Lower prices are good for consumers, but not when a race to the bottom pushes them so low that pharmaceutical companies refuse to produce the drugs.

Until last fall, the raw materials for all carboplatin sold in the United States came from a single factory in India run by Intas Pharmaceuticals, according to Dr. Julie Gralow, chief medical officer of the American Society of Clinical Oncology. But production there was suspended after U.S. Food and Drug Administration inspectors found serious safety and quality violations. As a result, Gralow says, up to 500,000 American cancer patients are now affected by shortages of carboplatin and cisplatin.

While the United States pours billions of dollars into research for new cancer drugs — some costing tens of thousands of dollars per treatment — it has so far shown itself incapable of delivering proven, low-cost drugs such as carboplatin, which sells for about $15 per dose. Congress, the FDA and the health care industry are scrambling to eliminate the shortages, but that could take many months.

Meanwhile, many cancer patients will die sooner than they would if the drugs were available. Their suffering will be shared by millions of family members and loved loves. Beyond those millions, everyone should be outraged by the drug shortages, if for no other reason than self-interest. Health problems impact people of all political persuasions, ages, ethnicities and genders. Everyone is potentially at risk of not getting the drugs they need in our dysfunctional health care system.

Incurable, not terminal

Some might say it’s no big deal if time is shaved off the lives of those with incurable cancer. But the line between “curable” and “incurable” is a fuzzy one. Many cancers that cannot be cured can be treated and controlled. Life expectancy can often be extended, sometimes for years.

When I was diagnosed with cancer at age 69, I had no known ailments and was on no medications. Now 74, I suffer nasty side effects from my cancer treatments but still maintain a good quality of life.

Age and illness have shrunk my life in some ways while expanding it in others. I wouldn’t wish cancer on anyone but must admit that it has enhanced my appreciation of those small, wondrous moments I often overlooked when I was a young, healthy and hard-charging journalist.

I feel deeply content these days to spend my mornings practicing Taijiquan in the backyard I share with hummingbirds and squirrels. And more than ever, I cherish the tender moments with my wife, Joanne, with whom I’ve shared the past 35 years. I’m not as productive as I once was but did publish a memoir this year.

My aim is not to simply drag out my life as long as possible. But I do want to live as long as the quality of my life is good. My cancer may be incurable, but that’s not to say it’s terminal. If I receive treatment, old age or a bolt of lightning might kill me before cancer does.

However my life ends, I don’t want to die just because our multi-trillion-dollar health care system can’t deliver a $15 drug.

Michael Dorgan was assistant business editor and a Pacific Rim correspondent for the San Jose Mercury News and Beijing bureau chief for Knight Ridder Newspapers.