When Dr. Paul Farmer arrived in Haiti in the 1980s, he was a confident young doctor determined to bring modern health care to a population in need. One of his challenges lay in finding a way to get tuberculosis patients to take their medicine. Many were not and were dying because of it. Part of the issue: Most Haitians believed the disease was a product of sorcery, so many considered taking medicine futile.
At least that was how Western experts explained it. But as author Tracy Kidder recounts in his recent book, “Mountains Beyond Mountains,” the crusading American physician devised an innovative experiment to test that theory. Farmer gave half his tuberculosis patients free medical treatment and a small stipend to pay for food and transportation to the clinic. The other half received only free treatment. At the end of the experiment, everyone in the group that received the stipend for food and transportation had made a full recovery from the disease, while in the other group, only 48 percent were fully cured.
And there were more surprises: Farmer interviewed one of the Haitian patients who had followed the regimen and been cured of the disease entirely. He was surprised to learn she still believed her TB had been the product of sorcery. When he asked her why she faithfully took the medicine anyway, she answered in some amusement with a question of her own: “Honey, are you incapable of complexity?” What was clear to Farmer, and what’s becoming increasingly clear around the globe: The simple directive, “take your medicine,” is a lot more complex than it sounds.
“Poor adherence a worldwide problem”
Drug companies spend billions developing new drugs and vaccines, but no pill will ever solve one of the world’s biggest health problems: People in every country are suffering from deadly diseases because they can’t or won’t take medicines that already exist.
Effective medicines have been developed for many widespread illnesses, including diabetes, heart disease, several types of cancer, and HIV/AIDS. But from patients with tuberculosis in Eastern Europe to those with high cholesterol in Beverly Hills, they’re all likely to let their medicine bottles collect dust. According to a World Health Organization report on the global adherence crisis, only about 50 percent of chronically ill patients in industrialized countries, such as the United States, actually take their medicines as directed. And that percentage is much lower in developing countries.
Too often, those missed opportunities are fatal. Experts estimate that 125,000 Americans die every year because they didn’t take their medicine as directed. In developing countries, the problem is even worse. As reported by the WHO, fewer than three out of 10 patients in the Seychelle islands and in the African country of Gambia take their medicine for high blood pressure.
“Poor adherence to treatment of chronic diseases is a worldwide problem,” reports the WHO, adding that the percentage of patients who take medicine as directed is “alarmingly low.”
Even if patients who don’t follow their treatment regimen survive, they’re at higher risk of severe relapses, antibiotic resistance, and drug withdrawal, among other problems, according to the WHO report. Helping people take their medicine would be a bigger breakthrough than any new drug or treatment coming down the pipeline, says Lars Osterberg, MD, a Palo Alto physician who works for Veterans Affairs and has written about problems with adherence for the New England Journal of Medicine. “We have all of these powerful drugs,” he says, “but if patients aren’t taking them, they aren’t doing any good.”
According to Osterberg, even the threat of a fatal illness doesn’t seem to encourage patients to take their medicine as prescribed. He notes that breast cancer survivors don’t do an especially good job of taking tamoxifen, a drug that can cut the risk of relapse in half. “That’s a 50 percent reduction in cancer, and they don’t take advantage of it,” he says. “It just blows me away.” The WHO report notes another example: Up to 50 percent of people with high blood pressure completely stop taking their medicine within one year, even though the drugs can dramatically reduce the risk of a heart attack.
Rich patient, poor patient
Enormous obstacles, including poverty, illiteracy, natural disasters, war, and unstable living conditions stand between millions of patients and their treatments.
Osterberg recently admitted a man to the VA hospital who was suffering from out-of-control diabetes. The man had a prescription for insulin, a potentially life-saving diabetes medicine. Insulin expires after several weeks if it isn’t refrigerated, and this particular patient didn’t own a refrigerator. “He was homeless,” Osterberg says. “He had no way to keep his insulin cold, so he was afraid to take it.”
Poverty, to no one’s surprise, is a worldwide barrier to medical treatments. The problem is especially severe in developing countries where, according to the WHO, one-third of people cant afford medicine.
The average worker in Cameroon would have to work 50 days to afford 30 days worth of ulcer medicines, assuming he didn’t spend his wages on other things like food or shelter, according to one survey. Another study found that people in Africa were actually paying more for the HIV drug lamivudine than people in industrialized countries, even though African workers earn 50 times less.
Even if poor patients can afford regular doses of medicine, they may live too far away from the nearest clinic or pharmacy to get those prescriptions filled. Some villagers in Tibet, for example, have to walk as far as 25 miles for basic health care.
Low-income neighborhoods in rural or suburban areas of the United States may face similar barriers. A study by a transit and land use coalition in the San Francisco Bay Area found that families in a low-income neighborhood in suburban Concord, California, could not reach a hospital or clinic without a car. There was no public transportation to hospitals, and 99 percent of the residents lacked transit access to a health clinic.
The WHO report notes — again, not surprisingly — that living in a war zone has a bad influence on adherence to care. In Iraq, for example, the country’s network of clinics and hospitals is in shambles, and the U.S. Department of Defense reports that little more than half of the 138 primary clinics the U.S. has promised to rebuild are expected to open. According to the British Medical Journal, more than half of the estimated 15,000 Iraqi civilians who died in the first half of 2006 could have been saved with proper medical care, but doctors lack the experienced personnel, as well as the medical equipment, supplies, and medicines, to treat them.
A natural disaster such as an earthquake, flood, or hurricane can also have devastating effects. After Hurricane Katrina hit the Gulf Coast in 2005, the Associated Press estimated that 8,000 people with HIV and AIDS were separated from their life-saving medicines when they fled their homes, as were many people with heart disease, diabetes, and other serious illnesses. Multiple organizations worked frantically to get people new prescriptions, water, and food, but many died before aid or medical care could reach them.
Adherence also a doctor’s burden
But it doesn’t take a crisis to cause problems with treatment. People everywhere have trouble understanding doctors’ directions, and they aren’t all poor or uneducated. As a recent report from the American College of Physicians and the Institute of Medicine made clear, nearly half of all Americans have trouble making sense of medical information. Doctors often make things harder by using “doctor speak,” and prescription labels don’t always clear up the confusion. Labels are generally written at a 10th-grade level (in tiny type, to boot), putting the key information beyond the grasp of many people.
As noted in the World Health Organization report, “Patients need to be supported, not blamed. Despite evidence to the contrary, there continues to be a tendency to focus on patient-related factors as the cause of problems with adherence.” In “Mountains Beyond Mountains,” Farmer puts it more bluntly: “If the patient doesn’t get better, it’s your own fault. Fix it.”
In the best-case scenario, patients have plenty of money to buy medicine, have easy access to a doctor or a pharmacy, and understand their doctors instructions to the letter. But even then, there’s still a good chance they wont take the medicines that could save their lives. As Osterberg noted in a review in the New England Journal of Medicine, patients have many personal reasons for skimping on medicine. Some may be forgetful or disorganized, while others don’t take the treatment seriously. Some patients simply don’t feel motivated to get better, an attitude especially common among those with depression. Others may have a philosophical aversion to taking drugs, opting instead for alternative remedies — or no substances of any kind. Still others may feel that the side effects from a particular medicine are intolerable, but don’t feel comfortable admitting that to their doctor.
Equally troubling, many health-care networks make it hard for doctors to help patients with adherence. Short appointments that leave doctors little time to visit with patients, lack of physician reimbursement for patient counseling and education, rotating primary care physicians, and poor coordination of care are all barriers to adherence, according to the WHO report.
Relief organizations and government agencies are taking small steps to improve world-wide access to health care. The World Bank — in cooperation with the Clinton Foundation, UNICEF, and the Global Fund — has worked to reduce the price of HIV drugs in Africa and the Caribbean. The WHO also recommends involving family and community in a patient’s care, tailoring adherence to individual patients, involving professionals from different disciplines, and training health professionals in ways to help patients stick with treatment.
Meanwhile, in some regions the gap between patients and quality medical care has begun to shrink. Clinics in remote places such as the highlands of Cambodia are starting to use “telemedicine” to connect patients with experts at large hospitals, while mobile clinics bring doctors and medicine to remote communities in California and other states.
No matter where they live, patients need to find ways to keep to their treatments, says Brian Haynes, PhD, MD, a diabetes specialist in Hamilton, Ontario. Something as simple as a pill organizer can help people keep track of their medicines, he says. Asking the right questions during a doctors appointment can help clear up confusion, and doctors can often prescribe other medicines if a patient is adamant that he or she cannot tolerate a certain drug’s side effects. Support from family or, when needed, treatment for depression can help patients find the energy and motivation to follow their doctors orders, he says.
Without a doubt, many patients need outside help to make their treatment plan a reality. In “Mountains Beyond Mountains,” Farmer chases a TB patient into a cane field, pleading with him to come out and keep his appointment. While that may be a dramatic example — and almost impossible to envision in the developed world — the WHO report insists that ongoing communication efforts to keep patients engaged in their health care, such as telephone calls from providers, “may be the simplest and most cost-effective strategy for improving adherence.”
It’s clear it takes a dedicated team effort from doctors, counselors, and patients themselves to get the most out of treatments, but the effort is certainly worth it. Patients stay healthier, and the entire health-care system saves money. According to the WHO, education programs that help patients take their medicine and manage their illnesses can lead to some financial benefits as well as the indirect cost savings of being able to earn a living instead of drain a bank account for intensive medical care. More importantly, such educational efforts could also save lives. The most effective drugs in the world are the ones that actually get used.
Interview with Lars Osterberg, MD, a Palo Alto physician who works for Veterans Affairs
Interview with Brian Haynes, MD, PhD, a diabetes specialist in Hamilton, Ontario
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