Ask me how I know.
For $225 per month, starting in 2004, I carried an individual BlueCross policy that had reasonable deductibles and covered 80 percent of my in-network medical visits. The doctor I'd been seeing for years was in the preferred provider network. For a healthy 47-year-old, all was well.
But the fine print about the $1,500 annual prescription suddenly morphed into screaming headlines after a phone call from my doctor in 2005, to report the results of the blood tests from my routine annual checkup. "I have bad news on the HIV test," he said.
It was hard enough to manage the anxiety and fear I felt. I'd been around this particular killer for a long time, and the images of dying friends haunting my mind made it hard to think straight. But I really panicked when I realized that, not only did I need to begin right away to take highly toxic medication, but it was going to cost far more each month than my insurance policy's total annual prescription allowance.
Fortunately, I was able to get into a clinical trial which provided my medications and lab work, free, for 96 weeks. After that? Now that I was branded with a huge pre-existing condition, I was locked into the BlueCross policy. Other insurance companies wanted nothing to do with me.
As it turned out, the clinical trial was ending just after I moved away from my longtime home in Washington, D.C., returning to my home state of Connecticut -- and just as the Great Recession was beginning to unfold. My income went south for an extended stay.
I became a client -- a polite way of saying a "charity case" -- of the local AIDS service organization. My health insurance premiums and medications were paid for with federal Ryan White CARE Act funds -- and, now Medicaid, since Connecticut in 2011 got a head start on the Affordable Care Act's mandated expanded Medicaid program.
I am as healthy as one can be with HIV. Modern medicine works its miracles daily in the pills that keep the virus at an undetectable level. But until there is a cure, it's still there and, experts say, still undermining my health in subtle but certain ways.
As surely as the virus is still there, so is the unsettling mixture of shame about taking charity, gratitude that it is available, and irony that at least my particular chronic, potentially fatal, condition qualifies me for the assistance I need. Without this assistance, I certainly couldn't afford the $2,375.46 my medications cost each month, to say nothing of the costs of lab work and doctor's visits.
Until the Affordable Care Act 15 months from now prohibits insurers from denying coverage to people like me, I don't have a lot of choice in my health insurance options. So, like anyone else who values his life, I do what I have to do to survive.
And like every other American with a chronic, but manageable, medical condition who has struggled financially and emotionally over their medical care, I curse the insanity of this country's health care system that considers insurance and pharmaceutical company profits more important than life itself.
"Look, the way I look at it is fairly simple: If someone comes up with an illness and we don't have the capability of dealing with it -- a cancer, for example -- that is a tragedy. But when somebody has an illness and gets sick simply because they can't afford a greatly inflated price -- when Atripla is sold for 100 times its cost -- that is a moral issue."
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."