Gouging Kimberly

Illustration by Michelle Scruggs

Kimberly Johnson (a pseudonym) pays up to $715 a month for her prescription meds. “If I have a UTI, I can add another $100,” she says. Johnson, a wheelchair user from Prescott, Ariz., has bad luck: Before her MS turned ugly, she made “too much” as an administrative assistant, so now her SSDI payment is almost $1,600 a month. If she had made a little less, or never worked at all, she’d be eligible for Medicaid–and her prescriptions would be paid for.

“I’m $44.16 over the allowed amount, and because of that, if I wanted to go on Arizona Medicaid, I’d have to surrender my check and they would pay me an allowance.”

Johnson pays $486 for OxyContin and $30 for oxycodone. She pays $101 a month for generic Baclofen and $30 for Robaxin. Her doctor had her on Skelaxin, another $300 a month. “He was giving me samples but not enough, so he switched me to Robaxin and it’s a third of the cost,” she says. She also takes Protonics, but only when she has extra money or when the doctor gives her samples. When she doesn’t take Protonics, her drug bill is “only” $647. With Protonics, a med that tamps down stomach acid, her monthly bill rises to $715.

Johnson’s a wise shopper–buying generics whenever they’re available, calling around for the best deals. “The prices differ anywhere from up to $6 more a prescription depending on where I go.” But no matter how good a shopper she is, she can’t make the prices magically go down on some drugs, or create new generic options for drugs she needs, like the painkiller OxyContin.

“I’ve often wondered why the generics are still so expensive, but when I switched to the Robaxin it was a third of the cost, so there is a big difference between generic and name brands,” she says. Why does Johnson have to pay for her prescriptions out of pocket, and why on earth does she–and other wheelchair users in similar situations–have to pay so much?

The Medicare Lowdown
Say the word “Medicare” and people’s eyes glaze over. It’s a big, thick bureaucracy that sometimes seems to take more than it gives, and it is infamous for not paying a decent drug benefit. Many on Medicare also have private health insurance, which does help some. “I’m on Medicare. It’s marginally useful,” says Susan Golden, a wheelchair user who has Friedrich’s ataxia.

Golden’s a well-known advocate from Kailua-Kona, Hawaii, and she’s made it her business to understand the new law that’s supposed to help pay for prescriptions. “I took the numbers in the newspaper about what the bill was supposed to do and how much it would cost to buy into it–the deductible and all–and what I currently spend. What got passed is terrible!”

Golden says the new plan will take $35 a month from your SSDI check in addition to the $55 a month, or $420 a year, already deducted to finance the system. Plus there’s a $250 deductible. Then 75 percent of the next $2,000 is paid by Medicare, but costs between $2,250 and $5,100 are paid by the beneficiary. “So for costs up to $5,100 a year, the individual costs are $4,020 with a ‘benefit’ of $1,080.” But can’t you just opt out if you want to? Nope, says Golden. “It is supposed to be voluntary but usually isn’t really. When it was decided that beneficiaries should pay for Medicare, opting out wasn’t really possible.”

The new law also bars Medicare recipients from buying private insurance to pay what Medicare won’t. A Dec. 7 article in The New York Times says lawmakers gave two reasons for outlawing Medigap drug policies: preventing duplication of the new benefit and ensuring beneficiaries would bear some of the cost. If people have to pay out of pocket, goes the logic, they’ll stop overusing medical services.

“Many seniors and disabled people will face a huge gap in drug coverage,” says Gail E. Shearer, a health policy analyst at Consumers Union. “In a bill that’s marketed as providing choice to consumers, comprehensive drug coverage is not really an option. That’s a disappointment.”

For Golden this means the price of her Fosamax, currently $35 a month, will rise to $450 a month. “I won’t be able to afford it anymore,” she says. “I think a lot of people will be in that position.” For Johnson it’ll be more of the same–high-priced meds she can’t really afford.

And whose fault is it that drugs are so expensive?

Who’s Afraid of the Big Bad Pharm?
Attorney Steve Rosenfelt, a Boston Center for Independent Living board member and interim director for Prescription Access Litigation, defines gouging: “We take a very conservative view here, which is if it’s illegal, it’s gouging,” he says. “We’re in the litigation business, to attack the illegal inflation of pricing by companies.”

PAL has filed suits regarding many prescription drugs, including two drugs used regularly by people with SCI and other disabilities of the central nervous system: the popular UTI med Cipro, and the nerve-painkiller Neurontin.

PAL has two Neurontin cases. The first, filed in 2002, says Warner-Lambert and Pfizer are engaged in illegal practices to continue their patent beyond its lawful period of monopoly. This means the companies are doing everything they can to stop generic, cheaper versions of Neurontin from hitting the market. Even at rock-bottom Costco.com prices, Neurontin’s still not cheap–a hundred 10 mg. tablets cost $288.09. Buy it at your local drug store and the cost will be significantly higher.

“The second case is in California and it’s a very interesting one,” says Rosenfelt. “It’s about the off-label promotion of a lawful drug.” When the 3-year-old lawsuit was filed, Neurontin was only approved by the FDA as an epilepsy medicine.

“Parke-Davis, a subsidiary of Pfizer, didn’t want to go through the clinical drug trials for new use, so it engaged in an illegal marketing practice, ‘educating’ physicians to promote the use of Neurontin as an antipsychotic, and other things. What we’re attacking is this illegal campaign. It included kickbacks to physicians for off-label, non-approved uses,” says Rosenfelt. It’s legal for a doctor to prescribe Neurontin for any purpose, but it’s not legal for the company to market it in ways that have not been tested and approved by the FDA.

What’s this have to do with the high cost of drugs? Consider Lorie Rohrbaugh’s situation. A quad who works full time, Rohrbaugh doesn’t really have a problem with expensive drugs–as long as the drugs are prescribed for the FDA-approved purpose. “I took Wellbutrin, an antidepressant,” she says. “It first came out to help people stop smoking. Now the only way you can get it [paid for by insurance] is if it’s proven you’re using it for an antidepressant.” But Rohrbaugh, a smoker, couldn’t prove that’s why she was taking it. “They’re like $130 for a 30-day supply, because the insurance company won’t pay for it. You got to pay full cost. Needless to say I didn’t take them for a while.”

The lawsuit PAL filed against Cipro is hard to follow, but keep your eye on the bouncing penny. “Sometimes success is clearing a way for a generic to come on the market. Other times the generics have colluded with the brand name companies and are equally wrong,” says Rosenfelt. “The loser is the consumer who pays the higher price.”

Cipro belongs to Bayer, and three generic companies produced a generic version–Barr Laboratories being the biggest of those three companies. “The point of the case was a sweetheart deal between Bayer and Barr labs to not put the generic on the market in exchange for $200 million. The litigation was to end the relationship and to enjoin any further restraint on generics coming to the market,” says Rosenfelt.

PAL’s not on the Cipro case anymore–the court says PAL doesn’t have standing. Instead the case is being pushed by such third-party payers as HMOs. “HMOs also buy drugs and get gouged along with consumers,” says Rosenfelt. “I think there are sticky fingers all over the system, but our view is that we need to focus on the manufacturers and those closest to them. They could lower the prices. They could pay attention to the need and still be the most profitable industry in the world.”

Meanwhile, Johnson faces hard financial choices every day. “Right now I’m out of the oxycodone but my check doesn’t come until next Wednesday and I have $30.” So it’s food versus medicine. “I’m just out of it until I get paid again.” She buys food on sale, and she eats a lot of sandwiches. But sometimes those ends don’t meet. “Like this week I can’t have my aide in on Tuesday because I don’t have the money to pay her, so tomorrow is a stay in bed day because I can’t afford to have her come get me up and dressed. That happens a number of times because there’s just not enough money.”

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