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.
Now 28, Emmerson told me, "I almost never get out because I can barely walk."
The real mettle in this Lady of Steele is apparent when she talks about her determination to pay for her medical care without assistance. "No matter how sick I was, I always worked at least part-time," she said. "I worked my butt off, never asked for a handout, paid ridiculous amounts for co-pays."
Although she's been able to get her biologics free, she can't afford the $600 fee to have a nurse infuse them. "Now my drugs are just sitting in my doctor's office, held hostage because I can't afford them," she said, adding, "It's absolutely crazy knowing there are these medications out there that would keep me healthy and let me work."
A hard-working young woman determined to pay her own way, but held back by an all-powerful insurance company and a debilitating chronic condition that can be managed only by medications priced out of her reach. A not-as-young but equally independent, productive member of society forced to deplete his life savings to cover his share of outrageously priced prescription drugs he needs to function. People with a life-threatening viral infection that can be effectively managed -- and the risk of transmission to others almost totally eliminated -- who aren't on treatment because the drugs they need cost so much.
In 2012 alone, the pharmaceutical and health products industries will spend $187,101,442 lobbying federal officials.
These American stories have a common theme: Drug and insurance companies call the shots, the politicians they buy with their tremendous campaign contributions demand nothing in exchange for their souls, and Americans needlessly suffer and die.
As Jamie Love sees it, "Everything is related to campaign finance issues." As long as politicians must raise vast sums of money for their campaigns, there will be favors owed and favors done. OpenSecrets.org reports that in 2012 alone, the pharmaceutical and health products industries will spend $187,101,442 lobbying federal officials. They will also donate an average of about $125,000 to House campaigns and $160,000 to Senate races.
"When you have a monopoly," said Love, "you have lots of extra cash that lets you influence the political system."
Although the Pharmaceutical Research and Manufacturers Association (PhRMA) failed to respond to my queries, they surprised no one by dismissing Sen. Sanders' prize bill when he introduced it. Matt Bennett, a senior vice president at the trade group told industry tracker Pharmalot.com the bill has "many drawbacks," including what he claimed is its failure to reward drugmakers for the "second, third or fourth versions" of drugs that may be more effective for some patients -- drugs Sanders called 'me-too' drugs that contribute to the problem. Of course he didn't mention that drug companies frequently come up with these subsequent versions of their old drugs just before they are due to go off patent as a way of renewing their monopoly.
Sanders is realistic about his bill's slim chances of becoming law. "The pharmaceutical industry is very, very powerful," he told me. "They virtually never lose political fights."
But, said Sanders, the tough economy and government budget deficits offer an opportunity to reexamine the system that is clearly failing many Americans, busting personal budgets, and straining taxpayer-supported programs such as the federal-state AIDS Drug Assistance Program, Medicaid and Medicare.
The senator said that while his bill focuses on HIV medications, a similar system of awarding generous financial prizes -- we're talking hundreds of millions of dollars, not exactly peanuts -- in lieu of monopoly patents, offers a "new paradigm" for developing life-saving medications.
Love said Sen. Sanders' prize fund would be "transformative," and that a similar approach would make sense not only to lower the prices of HIV drugs, but other now-expensive medications for chronic diseases, too.
When the FDA approved AZT (azidothymidine, or zidovudine) in 1987, pharmaceutical giant Burroughs Wellcome set the price at $10,000. At the time, that made it the most expensive drug ever. So the first drug approved to treat HIV infection would be priced out of reach of most of the people who needed it. The AIDS Coalition to Unleash Power (ACT UP) swung into action, publicly denouncing the drug maker and the drug's high cost.
PEPFAR can provide the generic version of Atripla for $200 in Africa, while other taxpayer-funded programs here at home pay more than $25,000
By the end of 1987, Burroughs Wellcome reduced the price of AZT by 20 percent to $8,000. Barron's predicted the company would earn $200 million on AZT in its first year alone. Within four years after its approval, Burroughs already had earned $1 billion on the drug that had been developed at the expense of American taxpayers.
Today, there is ample evidence that the cost of treating HIV can be dramatically reduced simply by allowing the use of generic versions of expensive brand-name medications -- exactly what is being done in the developing world, as Sen. Sanders noted in his May 15 hearing.
"The price of HIV meds in developing countries in the last 10 years has been reduced by 99 percent thanks to generics," said Judit Ruis, U.S. manager for Doctors Without Borders' Access Campaign. "When we first started providing generic HIV meds in 2000," she told me, "the price for first-line drugs was $10,000 per year. Now it's $300. That's roughly a 99 percent price reduction."
Buying FDA-approved generic versions of expensive American-made drugs is one way the President's Emergency Plan for AIDS Relief (PEPFAR) is able to provide antiretroviral treatment for some four million people living with HIV/AIDS in 30 hard-hit developing countries. The irony, of course, is that PEPFAR can provide the generic version of Atripla for $200 in Africa, while other taxpayer-funded programs here at home pay more than $25,000 for the exact same drug.