THERESAMARY JOHNSON is supposed to take nine prescriptions each day -- 10 on Thursdays -- for lung disease, high blood pressure, osteoporosis, heart disease, rheumatoid arthritis and lupus.
Sometimes she does. Sometimes, she can't afford to.
"I busted my buns to see I wasn't in poverty in my old age, and I feel like I'm getting dragged right into it," the 70-year-old Rio Linda, Calif., resident says.
Like Johnson, many Americans have trouble paying for prescription drugs. But as legislators, employers, insurance and drug companies wrestle with the issue, patient advocates say consumers could be doing more to lower their own drug costs.
In 2001, 12.7% of working-age adults with private insurance and chronic health conditions reported that they had skipped refills because of the cost; by 2003, that number had risen to 15.2%, according to the Center for Studying Health System Change.
Last year, more than 10% of the 39 million people enrolled in Medicare's prescription drug plan paid out-of-pocket for drugs that potentially cost hundreds of dollars, according to the Kaiser Family Foundation.
For people without health insurance, the burden of prescription drugs is entirely their own. The Census Bureau reported last year that 46.6 million people, or 15.9% of those living in the United States, are without health insurance. An additional 16 million are underinsured and often spend more than 10% of their incomes on medical care, according to a 2005 survey by the Commonwealth Fund, a private foundation dedicated to improving healthcare practice and policy.
Republican and Democratic lawmakers in Congress are backing legislation to legalize drug imports from Canada and other industrialized countries, where they're often cheaper, but such efforts are opposed by the Food and Drug Administration and the pharmaceutical lobby.
Meanwhile, the House has approved a bill that would allow the federal government to bargain over prescription drug prices for seniors and others covered by Medicare's drug plan. Although under consideration in the Senate, President Bush has vowed to veto it, supporting a reliance on private enterprise instead.
As prescription drug sales rise -- up 8.3% last year to $274.9 billion, according to a survey released this month by IMS Health -- consumer advocates say patients need to start speaking up. With research, compromise and aggressive questions, many patients can reduce the amount of money they spend on prescription drugs.
When medicine bills get too high, "it is up to the patient to make the physician and pharmacist aware," said Dr. Derjung Mimi Tarn, an assistant professor of family medicine at UCLA's David Geffen School of Medicine.
Tarn illustrated that point in November with a study published in the American Journal of Managed Care. Her survey found that only a third of doctors discussed cost, insurance, supply, refills or money-saving generic drugs with patients when writing prescriptions. Only 2% of patients asked those questions, the study showed.
"Physicians aren't always aware of patient costs," Tarn said, "and patients are often intimidated or embarrassed to talk about cost issues with their physician."
Nor are patients taking advantage of other easily available, cost-saving measures.
Health plans, for example, regularly offer mail-order prescription drugs, with a three-month supply often rivaling the cost of a one-month supply at a brick-and-mortar pharmacy. Consumers who used these mail-order plans are expected to save as much as $85 billion through 2016, according to a study by the Lewin Group prepared for the Pharmaceutical Care Management Assn., which represents these discount pharmacies. But if all qualifying maintenance drugs were ordered through these pharmacies, the savings could double, the study showed.
And millions of patients qualify for programs that could provide them with free drugs -- but are unaware of such assistance. Through the Partnership for Prescription Assistance, pharmaceutical companies and healthcare providers give free or low-cost drugs to the uninsured who make less than $41,300 for a family of four.
Since 2005, more than 3.5 million people have signed up for the program, said Ken Johnson, senior vice president of Pharmaceutical Research and Manufacturers of America, an advocacy group for pharmaceutical research and biotechnology companies. But according to the Partnership, more than 29 million might have qualified.
"The real burden is on people who have multiple chronic illnesses who are taking lots of medications," said Arthur Levin, director of the Center for Medical Consumers in New York, a nonprofit patient advocacy group. "They're running up thousands of dollars in drugs costs."
Johnson is covered by a prescription drug plan offered by Medicare, a federal insurance program for those older than 65 and others with disabilities. Her co-pays -- or her share of the prescription costs -- can run between $6 and $28 a month for each drug, and sometimes more, she said.