Breaking the Cycle of Prescription Drug Costs

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Profits from monopolies finance lobbying, which supports more monopolies. Examining the roots of the dysfunction, and how we can change it without passing on exorbitant medication costs to the sickest among us

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For Michael Taffe, life was looking good as 50 loomed. The former elite-level gymnast was now vice-president of a Boston-area software company. He figured his aches and pains were normal, a once finely tuned body moving through middle age.

But a phone call after one of his regular blood donations brought unexpected news. Tests had found that not only did he have rheumatoid arthritis, but he had lupus and diabetes as well.

That was the first act of the drama that was about to unfold.

"I can barely hear people now because this thing in my brain is so loud."

Now 62, Taffe's personal medical history reads like an encyclopedia of autoimmune-related diseases. There was the shingles a year ago; Sjögren's syndrome, in which immune cells attack and destroy the exocrine gland that produces tears and saliva; an episodic tremor that makes his left hand jump around on its own; even gout. And there's the loud noise in his ears that started when he woke up one Saturday morning, and hasn't stopped in the nine and a half years since. Doctors at first thought he'd developed multiple sclerosis, then decided instead it was something called central tinnitus, an 'engineered' sound produced by the brain. "I can barely hear people now because this thing in my brain is so loud," he told me.

Somehow he was able to fake it for five years, keeping up the appearance that everything -- "this gigantic load of crap," as he puts it -- was under control. He finally had to give up the high-powered management job and dedicate himself to managing his health.

Today, Taffe receives Social Security disability, works three days a week at a golf course, and wonders how long he'll be able to hold out financially as his savings are eaten away by insurance co-pays on the pharmacopeia of prescriptions he needs in order to remain passably functional.

There's Neurontin and Celebrex for pain; Aleve and Advil; aspirin a couple times a day; Irbesartan, Metopropol, Moexipril, Nifedipine, and Triamterene-HCTZ for blood pressure; Glipizide for diabetes; Vitamin D; Folic acid to help with hair falling out; Evoxac (Cevimeline) for the Sjögren's syndrome. There's Methotrexate (which was developed as one of the oldest cancer drugs and which makes him sick) and the "rescue" drug Lovacin to treat the sickness. Once a month there is the three- to four-hour-long infusion of the biologic drug Remicade.

Already this year, Taffe has drained $12,000 from his 401K to cover the costs his insurance company won't pay.

"Until you have a chronic illness, or illnesses in my case," said Taffe, "you don't really embrace the fact that this isn't just a little problem, but a life-altering event, not only on the medical side but the financial side. Then you go, 'Oh my God!' All those years you worked, your savings, and now it's going to go into this amorphous hole. To what end? I can't believe we're not smarter than that. What are other countries doing that we're not?"

For starters, other countries, at least all the wealthy western ones that consider health insurance coverage a right of citizenship rather than a fringe benefit of employment, are not doing what the United States continues to do, to its economic detriment and the frequent ruin of its citizens: Force people with chronic illness to forage for themselves, as best they can, in a health insurance market stacked against them and a marketplace for prescription medications priced higher than anywhere else in the world.

***

After years of advocating for such rational approaches to public policy as a health care system that isn't priced out of reach for those who most need it, economist Jamie Love, director of Knowledge Ecology International, a non-profit advocacy group that focuses on intellectual property issues affecting access to medications, now has a very personal reason for his work. His wife, diagnosed with cancer, needs a medication that costs $100,000 per year. She will die without it.

Love and his wife work together, sharing his health insurance policy, which costs more than $2,000 per month. But in two years, the 63-year-old Love is supposed to move to Medicare. "She's now at stage four cancer, but could potentially live quite a while," Love told me. "Treatment is astronomically expensive. If I switch to Medicare, she doesn't have any insurance."

Until 2014, when the Affordable Care Act (ACA) bans health insurers' now-routine practice of denying coverage to those with pre-existing conditions, Mrs. Love's best shot at remaining alive is through her husband's extremely expensive private policy with the extremely expensive co-pays on the medication she needs to do that.

Earlier this year, Congressman David B. McKinley, a Republican from West Virginia, introduced legislation that would give patients with similarly chronic, disabling, and life-threatening conditions access to drugs that can mean life or death. The Patients' Access to Critical Treatments Act of 2012 (PACTA) would allow millions of insured Americans to pay the same fixed co-pays for certain vital medications that they already pay for other classes of drugs. The bill would halt the insurance industry's practice of shifting these medications into a fourth 'specialty' tier that requires patients to cover a percentage of their cost rather than the usual fixed co-pay.

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.

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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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