Chasing Drugs
By: Source: AARP Bulletin Today Date Posted: 2003-09-30 13:39:00-04:00
A widow recently sold her wedding ring to pay for medicine. Another sometimes begs for prescription drugs left by friends who've died. Another on occasion uses pills prescribed for her dog.
These examples—and many more—of what people actually do to get medications provide a timely reality check for lawmakers in Congress as they wrangle over a Medicare prescription drug benefit: This is how older and disabled Americans are struggling while they wait.
Right now a congressional committee, hampered by deep ideological disagreements, is trying to produce a final drug benefit out of two very different bills passed in the Senate and the House in June.
But while the political infighting and nickel-and-diming continue in Washington, millions of people across the country remain in need, sometimes desperately so.
"I wish some of these politicians could live on an income like ours just for a month and see where it goes," says Linda Watkins, 58, of Williamston, S.C., who sometimes takes antibiotics meant for her dog. "They have so much drug coverage, I think they forget how much medicines cost nowadays and how tough it is for ordinary folks."
Watkins is one of more than 10,000 readers who responded to a Sound Off questionnaire in the June AARP Bulletin asking them to tell us the methods they use to reduce the cost of their medications.
The Bulletin examined a group of 2,000 replies. Because they were sent in voluntarily, they do not amount to a scientific survey and should not be interpreted as such. Nevertheless, the replies—half from people with drug coverage, half from those with none—reveal a mosaic of deprivations. In particular, they show the extent to which many people are:
- cutting costs to the detriment of their own health, even among those who have private insurance;
- willing to flout the law to buy their medicines from Canada and Mexico, where they cost less;
- falling through the cracks in a system so badly patched together that it doesn't merit being called a " system " at all.
Many people checked off at least nine ways they cut drug costs, out of 13 possibilities listed in the questionnaire—trying almost anything to save money.
Most people, of course, are not driven to the lengths of the three women cited above. Our group, which included people ages 44 to 96, with some still working and not in Medicare, showed out-of-pocket expenses ranging from zero to $14,000 a year. Savings from cost cutting ranged from "very little" to $2,500 a month.
Some methods of cutting costs are just prudent consumerism—for example, using lower-cost generics instead of brand-name drugs (mentioned by 82 percent) and getting discounts (47 percent) and even, in some cases, splitting pills (30 percent). Some pills of different strengths, such as 20 mg and 40 mg, are sold for the same price, so splitting them halves the cost. Splitting pills to skip doses, though, is dangerous. (See our web-exclusive guide to the Do's and Don'ts of Splitting Pills.)
But you have to be feeling the pinch badly to fail deliberately to take medicines you need in the full knowledge that it can harm your health.
Yet 40 percent of people without coverage say they skip doses or don't fill all their prescriptions, and 18 percent do both. More surprisingly, the equivalent numbers for people who have any type of coverage are 34 and 17 percent.
Why? The experience of Darlene Galvan, 66, a retired real estate broker in San Bernardino, Calif., is not uncommon. To cope with high blood pressure, thyroid problems and internal bleeding, she should be taking 14 medications. She has quit five, skipped doses on others and split pills to make them last longer.
Galvan is in a Medicare HMO—"the best one in this area"—but drug coverage is limited to $250 worth of medicines each 90 days. Her most expensive drug costs $360 for a 90-day supply. Even with a copay of $100, "I'm over my quarterly limit for just one prescription," she says.
In recent years many Medicare HMOs have raised premiums and reduced benefits to offset rising drug costs. So have many private insurance companies.
At 61, Frances Adkinson of Union City, Ga., is glad to be insured under her employer's plan. But though it covers many drugs, it refuses to pay for the two she needs most, rejecting her doctors' written pleas that one of them—an anti-allergenic that prevents her throat from swelling—is "a matter of life and death."
"I think insurance companies should be required to cover medications that are needed," she says, particularly when, as with her costliest medication, "there is no generic available."
Adkinson, too, skips doses and doesn't always fill prescriptions. In our group, in fact, more than one in four (27 percent) of those who receive employee or retiree insurance from companies or unions—a type of coverage envied by the uninsured—resorts to these measures.
Ironically, many people with drug coverage find themselves paying more out of pocket than many without it. That is because those who need multiple medications also have multiple copays. Someone who needs 10 drugs with a copay of $25-$60 each could be paying $250-$600 a month on top of the premiums and copays for visiting the doctor. For some, this is a real Catch-22.
A retired couple from upstate New York (who prefer not to be named) have an income of $2,200 a month, out of which they pay a $500 insurance premium and copays of over $200 for 11 drugs between them. They can't consider dropping the insurance because, following a liver transplant last year, just the two anti-rejection drugs she takes to stay alive cost $2,300 a month. Choosing another plan is not an option because, with her pre-existing condition, the premium would double.
Like several others in our group, this woman didn't want her name published for a specific reason. "I'm so afraid the insurance company will dump me," she says. "I'm paranoid."
To be sure, many readers do not have such difficulties and a few are exceptionally fortunate. The drug plans for military retirees and many veterans require only low copays. Under some union plans, retirees pay nothing out of pocket. But at the other end of the spectrum are those whose cost-cutting methods only emphasize the disparities.
Returning to work is one. Patricia King of Los Gatos, Calif., at age 70 decided "just to find a job with health benefits." She succeeded—and now, turning 77, pays $30 for a 90-day supply of the costliest of her five medicines, instead of the $107 a month she used to pay without insurance, a saving of over 90 percent. "I enjoy the job," says King, who is very aware that being able to afford all her medicines is also keeping her well enough to work.
One retiree (who does not wish to be identified) lives in a Florida condominium where many neighbors are in their 80s and 90s. Sometimes, she says, "I ask for the drugs of people who've died," most often a blood pressure medicine that many older Americans rely on.
Others say they "buy less food," "use home remedies," "stay away from doc," "share with Mother," "trade with friends," "use others' leftovers," "rely on relatives' help," "stay healthy" and—most frequently—"do without" prescribed drugs.
Only a minority of our group is enrolled in low-income drug assistance programs provided by states and communities or by drug companies, although these can save enrollees a lot of money.
Sadly, many people do not realize they are eligible for such programs. This was the case with a 72-year-old widow living in Pennsylvania, which has the PACE drug assistance program, one of the best in the country. With an income of less than $600 a month, she has sold off many of her possessions to pay for medicine, including her wedding ring—"the most heartbreaking thing I've done"—not knowing she qualified for help.
Far more people (a surprising 74 percent) say they've been given—and often asked for—free samples of drugs from their doctors. Drug companies provide samples to promote new products. Doctors often give a month's supply to see how a patient fares on a new drug. But many also use them to subsidize patients who can't afford the price. An Arizona retiree says his doctor once gave him a whole year's supply for that reason.
Without question, the fastest-growing cost saver is buying drugs from abroad. Nobody is sure how many people are doing it, though estimates hover around 2 million. (See More Americans Go North for Drugs from our April 2003 issue.)
Among our respondents, more than one in three (37 percent) with no drug coverage are buying drugs from Canada—33 percent by mail order and 4 percent by crossing the border. Even among those with coverage, 11 percent are buying from Canada to reduce costs. Fewer buy drugs in Mexico—5 percent with coverage and 8 percent without.
These numbers are far higher than three years ago, when Canadian mail order had barely begun. In a 2000 Bulletin Sound Off, only 9 percent of respondents said they bought drugs from Canada or Mexico.
To Dale and Marjorie Brown, self-employed farmers in North Dakota, private insurance is unaffordable. In poor health, they say medicines are their worst expense at up to $900 a month out of pocket. But they still save thousands by buying some in Mexico every winter when visiting relatives and getting the rest from Canada by mail order.
Many others report slashing their drug bills by more than half. Walter Wager, 79, a writer in New York City, pays the Canadian price of $286 a month for cancer pills that would cost him $600 here. "I've had a wonderful experience with the Canadians," he says.
Legal or safety concerns do not appear to bother these importers, but something else often does. "It's very embarrassing as a patriotic American to be driven to ordering my necessary drugs from another country," says Doris Greene of Jacksonville, Fla., whose late husband would never buy even a foreign car.
From these interviews and many more emerges a strong sense of disconnection with Washington. "There's a whole subculture out there," Linda Watkins says, in describing the long lines at a local clinic that dispenses limited supplies of free, donated medicines.
Are there lessons for Congress to learn here? One may be that private plans—on which Republicans place much faith and the current Medicare proposals largely rely—would need strong government oversight to ensure adequate and dependable benefits. Another may be that anger over U.S. drug prices—which push up insurance costs as well as drive people to buy from abroad—is rapidly hardening.
Many readers say they need a Medicare drug benefit that is affordable as quickly as possible, but most are skeptical of getting one any time soon.
"I'm 82," says June Henderson, a former missionary now in Colorado who has tried almost every means of cutting costs. "And at the rate it's going, I'll be dead by the time anything is passed in Congress."
preview