by David Armstrong

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The pain jolted me awake. It was barely dawn, a misty February morning in 2023. My side felt as if I’d been stabbed.

I had been dealing with pain for weeks — a bothersome ache that felt like a bad runner’s cramp. But now it was so intense I had to brace myself against the wall to stand up.

A few hours after arriving at the emergency room, I heard my name. A doctor asked me to follow him to a private area, where he told me a scan had uncovered something “concerning.”

There were lesions, areas of bone destruction, on top of both of my hip bones and on my sternum. These were hallmarks of multiple myeloma. “Cancer,” he said.

Multiple myeloma is a blood cancer that ravages bone, leaving distinctive holes in its wake. Subsequent scans showed “innumerable lesions” from my neck to my feet as well as two broken ribs and a compression fracture in my spine. There is no cure.

I walked out of the ER in search of fresh air. I sat on a metal bench and did what many patients do. I turned to Google. The first link was a medical review stating that the average lifespan of a newly diagnosed patient was three to five years. My stomach churned.

I soon learned that information was outdated. Most patients today live much longer, in large part due to a drug with a horrific past. It was a doctor at the hospital who first told me I would likely take a thalidomide drug as part of my treatment.

That couldn’t be possible, I told him.

I knew the story of thalidomide, or at least I thought I did. It represented one of the darkest chapters in the history of modern medicine, having caused thousands of severe birth defects after it was given to pregnant women in the 1950s and 1960s. The drug was banned in most of the world, and the scandal gave rise to the modern-day U.S. Food and Drug Administration.

It turns out the drug once relegated to a pharmaceutical graveyard had new life as a cancer fighter.

That drug I take is called Revlimid. It is a derivative of thalidomide, a slightly tweaked version of the parent compound.

Revlimid is now one of the bestselling pharmaceutical products of all time, with total sales of more than $100 billion. It has extended tens of thousands of lives — including my own.

But Revlimid is also, I soon learned, extraordinarily expensive, costing nearly $1,000 for each daily pill. (Although, I later discovered, a capsule costs just 25 cents to make.)

That steep tab has put the drug’s lifesaving potential out of reach for some cancer patients, who have been forced into debt or simply stopped taking the drug. The price also helps fuel our ballooning insurance premiums.

For decades, I’ve reported on outrageous health care costs in the U.S. and the burden they place on patients. I’ve revealed the tactics used by drug companies to drive sales and keep the price of their products high.

Even with my experience, the cost of Revlimid stood out. When I started taking the drug, I’d look at the smooth, cylindrical capsule in my hand and consider the fact I was about to swallow something that costs about the same as a new iPhone. A month’s supply, which arrives in an ordinary, orange-tinged plastic bottle, is the same price as a new Nissan Versa.

I wanted to know how this drug came to cost so much — and why the price keeps going up. The price of Revlimid has been hiked 26 times since it launched. Some of what happened was reported at the time. But no one has pieced together the full account of what the drugmaker Celgene did, how federal regulators failed to rein it in and what the story reveals about unrestrained drug pricing in America.

What I discovered astonished even me.

My journey started with an indefatigable New York City lawyer on a quest to give her dying husband a chance.

Beth Wolmer’s story begins on a moon-splashed beach in the Cayman Islands in the winter of 1995. She and her husband, Ira, were holding hands as they walked in the sand, enjoying a rare break from a hectic life as parents to a 1-year-old daughter and demanding jobs as 30-something professionals in New York City.

They had met through friends and clicked from the start. On Sunday mornings, they sat together for hours, sharing sections of the newspaper and eating bagels. They planned trips to Europe and outings to the Metropolitan Museum of Art.

Ira was an interventional cardiologist who followed his father into medicine. Beth was a lawyer at the high-powered firm Skadden Arps.

“We had a great life,” Beth told me. “I specifically remember coming home on the bus and thinking: ‘My life is just perfect, perfect. I’m not going to change a thing.’”

As they walked that night in the Caribbean, Ira felt a sharp pain in his cheekbone. The pain flared several more times during the trip, becoming so intense that it brought tears to his eyes.

When he got home, Ira made an appointment to figure out what was wrong. Imaging tests revealed multiple myeloma. The prognosis was grim. The couple was told Ira had two years to live.

Specialists recommended treatments that would only provide a brief reprieve. The couple searched for someone who could offer something more. That’s when they found Dr. Bart Barlogie in Little Rock, Arkansas.

I’ve never been more scared of a spouse of a patient than I was of her.

Barlogie had been recruited to the University of Arkansas for Medical Sciences from the more prestigious MD Anderson Cancer Center in Houston. In Texas, Barlogie had been frustrated by a medical culture that he viewed as too timid in its approach to multiple myeloma.

He remembers working on a Sunday when a newly diagnosed patient was admitted to the hospital. With few options, Barlogie decided to put the patient on a taxing, four-drug chemotherapy cocktail used for lymphoma patients. It didn’t work. The patient died from a sepsis infection, a known complication of the treatment.

The attending physician later admonished him, Barlogie said, saying, “Bart, we have to learn to treat myeloma gently.” Barlogie said he thought to himself, “Fuck you.”

In Arkansas, Barlogie was in charge. He quickly developed a reputation as a practitioner willing to try anything to fight the fatal disease. Patients from around the world — including the actor Roy Scheider from the movie “Jaws” — flocked to his clinic.

Beth and Ira heard Barlogie before they saw him. The cowboy boots he’d taken to donning since his time in Houston clacked down the linoleum hallway floors. A short, slight man, Barlogie had a booming voice with a German accent. He wore leather jackets and round, red-framed glasses on his bald head.

When he strode into the exam room, he hugged Beth and Ira and told them they had come to the right place.

Now retired, Barlogie recalls being struck by Beth’s intensity. He said she told him “you must do something” to help Ira.

I met Barlogie at his home in Little Rock. We sat in his office, which is filled with photos of the red Ducati motorcycle he used to ride to work. An old license plate with the letters “MMCURED” sat on a shelf, reflecting his goal to find a cure for multiple myeloma.

When Beth and Ira found him, Barlogie told me, he had been having some success with a novel approach that put patients through two stem cell transplants a few months apart, which he called a tandem stem cell transplant. With a transplant, a patient is bombarded with high-dose chemotherapy to kill the cancerous plasma cells. The patient is then infused with healthy stem cells that travel to the bone marrow.

The intense chemotherapy can be grueling and poses a small risk of death.

Ira underwent three transplants. Each time, he relapsed. By the fall of 1997, after two years of treatment, Ira’s thick black hair was gone. He was losing weight. Then he had a stroke. His kidneys failed and required dialysis. He developed pneumonia and had to be intubated.

Beth was determined to keep him alive long enough for their toddler daughter to remember him. With a photograph of Ira smiling with their baby as motivation, she applied her lawyer’s tenacity to the case. She pored over medical journals and peppered oncologists with questions about why what they were trying wasn’t working or quizzing them about a promising study. When doctors told her there was nothing more they could do for her husband, she refused to accept it.

“She is a tiny person, but she is terrifying,” said Dr. David Siegel, part of the team that treated Ira in Arkansas. “I’ve never been more scared of a spouse of a patient than I was of her.” He meant it as a compliment.

By late fall in 1997, Ira was dying and Beth was desperate.

A researcher told her about the work of Dr. Judah Folkman, a surgeon and researcher at Boston Children’s Hospital. Folkman believed the growth of cancerous tumors could be stunted by starving them of a supply of new blood vessels.

Folkman was a workaholic who, when he wasn’t in the operating room or the research lab, was traveling across the world to promote his novel theory of how to attack cancer. Peers had ridiculed his idea since he first proposed it in the 1970s. The prevailing belief at the time was that tumors didn’t need a new blood supply to grow.

A young researcher in his lab, an ophthalmologist named Robert D’Amato, was at work on the top question Folkman had posed. Could they come up with a drug, in pill form, that blocks the growth of new blood vessels?

Folkman has since died, but it wasn’t difficult for me to track down D’Amato. He still works at Boston Children’s Hospital, where he has his own lab and holds the Judah Folkman Chair in Surgery. Now in his early 60s, D’Amato has a youthful energy and speaks in a rapid, matter-of-fact clip.

D’Amato told me that he had set out to find existing drugs that block blood vessel growth. He started by thinking of his own body and side effects caused by certain drugs. A drug that causes hair loss might be the result of the blood supply to hair follicles being shut off, for example. But this exercise wasn’t producing any viable candidates.

After giving it some thought, D’Amato realized he had myopically narrowed his search. What about a woman’s body? There were drugs that stopped menstrual cycles. Then........

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