U.S. Senator Bernie Sanders, Independent of Vermont, was explaining to me in a phone interview why he has proposed a $3 billion fund to award large cash prizes to drug companies for developing innovative new HIV drugs in lieu of the long-term (usually 20-year) monopoly patents the government now awards them.
At a May 15 hearing of the subcommittee on Primary Health and Aging; part of the Health, Education, Labor and Pensions Committee that he chairs; Senator Sanders pointed out that Americans are forced to pay the highest prescription drug prices in the world: 85 percent higher than in Canada, and 150 percent higher than in France, Italy, Sweden and Switzerland.
Atripla, the once-daily combination HIV drug Sanders mentioned, costs $25,000 in the U.S. But a generic version, approved by the Food and Drug Administration, costs a mere $200 in the developing world.
In her testimony at Sanders' hearing, Harvard School of Public Health professor Suerie Moon said there has been an "unwritten political bargain" behind the high drug prices in the U.S. and Europe. She explained that, for Americans, this means paying more than anyone else in the world for our medications to reward pharmaceutical companies for their investments in research and development.
"Right now we're treating less than 40 percent of people in the U.S. who are HIV-positive."
But this is "curious," said Nobel Prize-winning Columbia University economist Joseph Stiglitz, former chairman of the President's Council on Economic Advisors. In the current system, he pointed out, "government pays for most research and development." The patents now given on medications developed at taxpayer expense are quite a plum. Said Stiglitz, "The patent system is a prize. It awards temporary monopoly power."
That monopoly power costs American taxpayers a great deal of money. Some pay with their very lives because they are unable to afford the drugs they need to stay alive.
Jamie Love said at the hearing, "We spend easily about $8 billion more per year than we have to for AIDS drugs at the current prices to support the cost of the monopoly -- and we've only gotten approximately one drug a year for the last 25 years." He also noted that the Centers for Disease Control and Prevention (CDC) reports that 64 percent of the estimated 1.2 million HIV-positive people in America who need life-saving medication are not receiving it.
Love told me in a later interview, "Right now we're treating less than 40 percent of people in the U.S. who are HIV-positive. We have wait lists, a crisis in affordability. It's a very expensive lifelong chronic condition and getting worse. It's unsustainable." Put simply, he said, "Why are we not treating more of the people who are HIV-positive? It's because the drugs are so damned expensive."
Katie Emmerson calls herself "Lady of Steele," a double play on words in that it was her ex-husband's surname and she's had both hips replaced with steel prostheses, the first at age 22, the second at 24.
Unlike Michael Taffe, whose immune system started to go haywire in his late forties, Emmerson's story began when she was only seven. When her doctor took a cast off of her broken left wrist, he found a large lump. After a second break and another cast, the lump was huge. "The first doctor said it was some kind of cancerous tumor and we should cut her left hand off," recalled the Anaheim, Calif. resident. "My mom said absolutely not." Battles ensued with the family's insurance company to pay for a second opinion.
Finally, Dr. Lawrence Menendez, director of orthopaedic surgery at the University of Southern California's Keck School of Medicine, was able to provide the second opinion. In a nearly seven-hour operation, he removed what turned out to be a cancerous tumor. He explained to Katie's parents that, although he'd gotten all of the cancer, he would have to rebuild her hand because of damage from the tumor. He also said she would have to see a rheumatologist because the tumor had apparently triggered arthritis in the hand. "I thought whew! I didn't have cancer, but have arthritis," said Emmerson. "We didn't know how wild and crazy that would be."
By the time she was in eighth grade, Emmerson had been in and out of the hospital "a bunch of times." She was told she'd exhausted every medication in any combination. "I could stand on my feet, but I couldn't walk," she recalled. "My brother would carry me from room to room. Mom would change my clothes and put my shoes on. I was like a puppet."
About a year later, doctors talked to Emmerson about a new drug called Enbrel, the first of the biologics to treat rheumatoid arthritis, then being studied. She became one of only 50 children nationwide participating in the study.
Enbrel was the "only thing that got me moving again," said Emmerson. She went into remission for eight years, even became a spokesperson for Enbrel, traveling across the country helping its manufacturers Amgen and Pfizer to market their product.
But then she hurt her shoulder when she was 21. A severe arthritis flare ended her remission--and relaunched even more battles with her insurance company. They refused to pay for Enbrel--the lowest price for which, at GetCanadianDrugs.com, is $2,239 per weekly 50 mg dose--and insisted she switch to other drugs: Tumera, Remicaid, Orencia. "Even though my doctors knew I was probably going to have no response," said Emmerson, "they had to follow a certain protocol because of insurance." When her bones were grinding and popping, the insurance company resisted paying for the hip replacements she obviously needed. "They said it was an elective procedure," she said.