Ten Years as a Cancer Patient: What I’ve Learned

It was almost 10 years ago that I lay in an emergency room with back pain so excruciating I literally couldn’t move, when in walks a doctor who announces he’s the oncologist on duty.

At that moment, my life changed forever.

The reason I couldn’t move? Cancer broke my back. I have multiple myeloma — an incurable blood cancer that attacks the bones. It crushed my T11 vertebra. It also ate holes in my skull, pelvis and forearms and cracked my ribs.

Ten years later, I have beaten the survival statistics. I’m alive. And my journey has taught me a thing or two.

The biggest? Gratitude for every day is the key to staying healthy and happy. On my worst days, and on my best, I have my wife, four great kids, our extended family and friends. Wonderful doctors and nurses who are all underpaid as far as I am concerned. Insurance I can afford. New drugs that have doubled life expectancy for myeloma patients.

But early on I came face to face with a fundamental fact: The prices for the medicines people need to stay healthy or alive are just too high. The four chemotherapy drugs my doctors give me now carry a list price of $900,000 per year. Just one of those drugs costs me more than $15,000 per year out-of-pocket with Medicare Part D.

There is no justification for these prices. Drug companies raise prices simply because they can.

As an 18-month congressional investigation recently found, drug companies raise prices in order to hit revenue targets and trigger executive bonuses. One executive made a bonus of nearly half a million dollars in one year by raising the price on a drug I was taking. He just took the money out of my pocket and put it in his. And so-called patient assistance programs that supposedly offered to help patients are really tools to sell more drugs at ever higher prices. One company’s internal documents pegged the rate of return on its copay coupon program at $8.90 for every dollar invested.

But, the whopper drug companies tell us is they must be able to dictate whatever prices they want in order to fund innovation. It’s a false argument. We can have the truly innovative drugs we need and lower prices.

First, drug corporations don’t raise prices to fund innovation and research and development. Congress found that one company took in $34 billion over 20 years and spent only 2 percent on R&D. Another company’s pricing decisions “were divorced from its calculus regarding future R&D or recouping of past R&D expenditures,” according to investigators.

Second, we only see innovation in a fraction of new products. Three out of four new patents issued annually are for drugs already on the market. They take an old drug and tweak it in some small way that might slightly improve how the drug works — or not. But the purpose isn’t to improve user experience, it’s to extend patent protection to block competition from cheaper generics.

Third, U.S. taxpayers foot a huge portion of the bill for basic science leading to new drugs. The National Institutes of Health is the single largest source of biomedical research in the world. In fact, NIH funding contributed to research associated with every single new drug approved by the FDA from 2010-2019, totaling $230 billion according to a recent report.

It’s happening right now with vaccines for COVID-19. Taxpayers are providing more than $14 billion not just for research, but to produce and distribute the vaccines. We are taking the risk to make the vaccines and every company stands to make a bundle on our public investment.

Fourth, drug corporations are not just scraping by. The annual profit margins of the 25 largest drug corporations were three times the average of the 500 largest non-drug companies worldwide in some years.

Drugs don’t work if people can’t afford them. But right now, the system is rigged to benefit the people who make money on it at the expense of people it is supposed to serve.

Here’s one more thing I’ve learned: Patients want to fight for change.

We never dreamed when we started Patients For Affordable Drugs a few years ago that there would be such an overwhelming response. Within months, we collected tens of thousands of patient stories that power an active and engaged community in all 50 states.

Patients are working for change right now. Patient voices are making drug prices an issue in campaigns from coast to coast. We are calling on voters to support candidates who will stand up to Big Pharma and fight to lower drug prices. We are creating the momentum for major reforms in 2021.

Cancer broke my back, but it stiffened my spine. Ten years after my diagnosis, I am inspired every day by my fellow patients in this fight. Patients are the key to change. Patients are the reason we will win.

David Mitchell, who is living with incurable blood cancer, is the founder and president of Patients For Affordable Drugs.

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