Breaking the Cycle of Prescription Drug Costs

Insurers traditionally have charged fixed co-pays for three different tiers of medication: Tier 1, generics; Tier 2, name brands; and Tier 3, off-formulary "non-preferred" brand medications. A new fourth tier, consisting mostly of biologics that are often customized to each patient and don't have generic or inexpensive alternatives, typically requires that patients pay 25 to 33 percent of the medication's cost.

Twenty-five percent of the cost of Michael Taffe's biologic Remicade is upwards of $3,000 per month. Remember, it's only one of the drugs he needs.

"Most people can't afford to have a house payment every month for one of their medications," said James O'Dell, M.D., president of the American College of Rheumatology (ACR) and chief of the rheumatology section at the University of Nebraska Medical College in Omaha. The ACR is one of the medical specialty and patient advocacy organizations that have endorsed PACTA.

O'Dell noted that people who don't have insurance "have all kinds of trouble" trying to access the medical care they need. But for those who are insured, the real problems begin when they find themselves diagnosed with a chronic condition that requires expensive medication to manage. Said O'Dell, "If you have insurance, and you happen to get a disease like rheumatoid arthritis, suddenly you have a $1,500-per-month drug, which is one of many you have to take. You essentially don't have insurance for that drug."

PACTA would prevent that from happening. "This legislation," O'Dell explained, "would not allow that kind of thing by the insurers, so people who have insurance would have access to that drug at whatever tier, two or three." He said that although the co-pay would still likely be $30-50 a month, which could still be substantial for some folks, "it wouldn't be in the thousands."

***

Of course most people buying a health insurance policy aren't anticipating catastrophic medical diagnoses. They may be more concerned about affordable monthly premiums and deductibles than about tiered prescription pricing and co-pays. When a fairly inexpensive prescription decongestant for seasonal allergies is the only medication you need, you probably aren't thinking about the potential ramifications of an insurance policy's prescription cap.

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."

Presented by

The author of Victory Deferred, John-Manuel Andriote has specialized in HIV/AIDS reporting since 1986. His research materials, correspondence, and recorded interviews are part of a special collection curated by the Smithsonian.

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