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Prescription: Protest

Neil Shulman, MD, first started seeing patients at Grady in 1969. For more information or to help, contact medcrisis@netscape.net.

Neil Shulman MD

July 22, 1999

We were a vivid group 100 strong, demonstrators waving signs on a street corner across from the 1,035-bed Grady Memorial Hospital, the only public hospital in the Atlanta metropolitan area. Overnight, the price of a prescription for indigent patients had risen from as low as 50 cents to $10, and the hospital pharmacy would take cash only. An internal Grady document projected that without access to discounted medications, 6,500 people would suffer or die within thirty to sixty days. We were chanting, singing civil rights songs and calling through our bullhorn for compassion for the disabled, the elderly, “the poorest of the poor.” We were preachers, doctors, labor leaders, the homeless, the blind, students, business people–gay, lesbian and straight. We marched across the street into the towering marble-faced building and made our way to the hospital boardroom. Behind mahogany tables, the trustees were holding their regularly scheduled meeting.

Neil Shulman, MD, first started seeing patients at Grady in 1969.
For more information or to help, contact medcrisis@netscape.net.

Point by point, we made our arguments: More than 26,000 patients would be affected, many on life-sustaining medicines. People on fixed incomes who had been paying $4 for eight medicines each month would now face bills of $80. Already, cancer patients were not showing up at clinics for vital therapy. Old people were quietly telling their doctors not to worry; Jesus would take care of them. Emergency rooms could expect to be flooded. A homeless man in a wheelchair explained how he’d been discharged from the hospital with no medication for heart failure, how his shortness of breath reappeared after a few days, how he was rushed to the emergency room drowning from the backup of fluid into his lungs.

The chairman of the board banged his gavel. The protests and prayers continued. The chairman explained that the hospital had a $26.4 million deficit and that the price increase was essential to maintain its fiscal viability. It was as though a bomb had exploded. Furious protesters confronted the board. Guards were quickly called in, and the trustees escaped through the back door.

Grady’s pharmaceuticals policy is America’s healthcare crisis in microcosm. Throughout the country, hundreds of thousands of people are suffering or dying every year because they can’t pay for medications. Of late, the matter of prescription costs has surfaced as Congress considers changes in the Medicare program, with politicians sensing a galvanizing issue for the 2000 elections. That debate is focused on the serious problems of the elderly; ignored are the younger-aged “medically indigent”–the many others who cannot afford the medicines they need, whether they are employed or unemployed, low- or middle-income, with poor insurance or no insurance. The opposition that has been brought to bear in Atlanta against Grady’s policy is also a microcosm–but a microcosm of what could be, rather than of what is. For nowhere else in the country has such a broad-based coalition of community activists rallied around people facing medical catastrophe and won–at least for now.

The confrontation with Grady’s trustees, which took place on March 22, was only the opening shot in a battle that, at least temporarily, reinstated the minimal prescription fees and, by June 8, secured $4.6 million in public money. But the fundamental problem remains what it is everywhere. Access to medication is often the ultimate bottleneck in the healthcare system. Even if doctors, clinics or hospitals donate their services, patients are helpless unless they can afford the medications prescribed by the doctor. Since the United States is the only industrialized country that places no ceiling on the price of drugs, prescription prices are out of reach for millions of Americans. So what is a typical scenario? As shown by a 1960s study, one-third of untreated patients with extremely high blood pressure will develop kidney failure, heart disease, other heart- or kidney-related problems, have a stroke or die within twenty-six months. A minimum-wage worker faced with a $200 monthly bill for blood pressure medicine has to spend a quarter of his or her income to cover it. Many patients in this circumstance receive no assistance for medication until their kidneys fail and they need dialysis, which costs the government at least $45,000 a year per patient, or their damaged hearts require surgery, or they become paralyzed, requiring nursing-home care at tens of thousands of dollars a year.

The holes in the supposed safety net are growing bigger by the minute. Medicaid often does not provide coverage for the working poor, and it too frequently does not kick in with essential treatment until the patient develops an irreversible disability. So the waitress with heart problems is told that she is not disabled and can work if she just takes her medicines and gets a job where she can sit. Of course, companies are reluctant to hire her because of her illness and the burden of underwriting her healthcare. Because she can’t afford her drugs, her condition worsens to an irreversible stage; then she becomes eligible for Medicaid. Such cases provide a continual flow of clients for attorneys specializing in disability law. Retroactive payments from Medicaid settlements feed the lawyers.

Medicare reimburses for medication only while the elderly patient is in the hospital. Carol Dembe, an emergency-room doctor working at a Philadelphia hospital, repeatedly treats the same patients with recurrent crises such as asthma attacks and seizures. Medicare pays for the emergency-room visit. Patients who cannot afford their medicines go home without their prescriptions filled and bounce right back to the emergency room a few days later. The cycle continues at a higher cost to the system than if medications were provided at a nominal fee.

Pharmaceutical companies have programs for poor patients, but they are usually Band-Aid approaches, rife with restrictions, rules, paperwork and bureaucracy, and are available only if a doctor takes the time to apply and then reapply for the program for each patient. Some of these programs are generous, but with so many pills and so many policies, hunting for discounts often overwhelms harried doctors and pharmacists.

Grady Memorial Hospital was established 107 years ago by wealthy citizens who wanted to live in a city where the less fortunate could receive healthcare. Eventually, the two Atlanta county governments–Fulton and DeKalb–levied a property tax to support the mission of the hospital. Between 1891 and 1999, the metro Atlanta population has grown from 65,000 to 3.5 million, and the metropolis has spread over thirteen counties. These counties have never contributed comparable tax dollars to assist with the healthcare for their poor populations. Approximately 5,000 doctors, hundreds of private clinics and dozens of hospitals are now in the business of providing medical care in the Atlanta area, but they want customers who can pay their bills, ideally those with health insurance.

Grady is a magnet for the medically indigent. As a public hospital with a sliding-fee scale, it serves people who have no health insurance or have lost it, as well as former welfare recipients who are now working and thus no longer qualify for Medicaid. In a sense, it is not only a charity for poor people but also for private hospitals. Those hospitals make a profit off patients while their insurance lasts; then Grady takes up the slack so those hospitals don’t have to. Grady also ends up underwriting healthcare services for companies that provide inadequate or no health coverage for minimal-wage employees. Wal-Mart’s health plan, for instance, does not cover medicines for the first fifteen months of employment, so those workers might go to Grady for prescriptions they can afford. Meanwhile, Grady has been steadily losing financial support from the county governments.

Similar factors threaten the financial viability of public hospitals across the country. And, similarly, many of these institutions are trying to solve their financial woes by cutting pharmaceutical services. Charity Hospital in New Orleans gives indigent inpatients a three-day supply of medications when they are discharged; after that there are only minimal discounts, if any, and you have to pay up front. The Medical College of Georgia Hospital in Augusta attempted to close its pharmacy completely; it retreated under pressure from the state. The University of Texas hospital in Galveston substantially raised its co-pay, to $10 to $45 per drug, and in Brooklyn, Kings County Hospital charges its indigent patients $10 per drug per month.

The medication crisis manifests itself differently in communities that cannot support public hospitals. There the problem appears in clinics and doctors’ offices. In a small rural community clinic in South Georgia near Albany, one nurse reports spending 25 percent of her day searching for, applying for or reviewing applicable programs funded by pharmaceutical companies. Dr. Jack Birge, a private practitioner in Carrollton, Georgia, has been so frustrated by the paperwork, rules and bureaucracy that he’s given up applying for these programs. A family physician in rural California has bypassed the system altogether by asking family members of dead patients to bring in their unused medicines so he can keep his living patients alive.

Patients develop their own dangerous innovations. They might take their medications every two or three days instead of daily as directed. A physician assistant in rural Pennsylvania reported that a mother came into the office with one child suffering from pneumonia, planning to get a prescription for him and then split the drugs among her four other children who were sick. In North Dakota, physician assistant Jackie Hollevoet stated that many of her elderly patients who have multiple diseases, such as diabetes, high blood pressure and arthritis, roll the dice and buy the medication for the one disease they perceive to be the most serious. Health provider Daniel Lynam in Elizabeth City, North Carolina, says that his patients often just do not show up for appointments when they can’t afford medications. He visited one patient at home and gave him the money for his medicines. The patient was so thankful that he offered Lynam two live chickens.

Another patient, a 55-year-old woman in Hamilton, Georgia, who was applying for a job as a nanny, had a stroke, and now half her body is paralyzed because she could not afford her blood pressure medicine. A 67-year-old retired lumber worker was found dead in his house in the woods outside Morristown, Tennessee, because he could not afford his insulin. Nor is it necessarily the case that the injuries of missed medication will always be confined to an ailing individual. A school bus driver in North Carolina who could not afford insulin had such high blood sugar levels that she was driving the bus while dizzy.

Government is not going to act on its own to reverse this crisis. The best hope for preventing tragedies, and perhaps for jump-starting the dormant forces for healthcare rights, may, therefore, lie in local struggles such as the one in Atlanta. It began in typical grassroots fashion, with informal discussions and coalescing among a few concerned community members: the Rev. Ed Loring and the Rev. Murphy Davis of the Open Door homeless advocacy group; the Rev. Tim McDonald of Concerned Black Clergy; Stewart Acuff of the Atlanta Labor Council and Jobs With Justice; and a group of Grady doctors. As the group built support among local residents–patients and parishioners; blacks, whites and Latinos; students and workers; city and state political figures–informal discussions evolved into strategy sessions in which the group planned actions ranging from quietly lobbying hospital officials and politicians to disrupting public meetings with demonstrations and sit-ins.

Sixteen days after the demonstration at Grady, about 150 coalition members packed into a Fulton County Commission meeting, determined to force officials to consider additional funding for the hospital pharmacy. As protesters waved placards and chanted, the commission members agreed to put the measure on the agenda. They subsequently approved an additional $3.5 million.

With that victory, advocates turned to the DeKalb County Commission, where they demonstrated on the streets and interrupted the meeting in chambers with a bullhorn, resulting in the arrest of seven people. Two weeks later, 200 protesters returned to the commission chambers, singing “This Little Light of Mine” and engaging in one of the largest acts of civil disobedience in the city since the civil rights movement. Thirty were arrested, and ten (some of whom had been arrested in the previous incident) spent the night in jail, while outside their supporters rallied, played jazz gospel music and stood vigil all night long. After a series of private meetings between advocates and commissioners, the county agreed to budget an additional $1.1 million for the pharmacy.

Grady has temporarily rescinded the $10 per drug co-pay policy. The campaign has also prompted the city’s media to begin investigating the crisis of medications for the poor, the elderly and low-wage workers. With each success, the coalition is growing. Its leaders, along with patients and politicians, have ongoing strategy sessions to identify additional targets: hospitals that refer their indigent patients to Grady, businesses with inadequate healthcare programs for their employees, county commissions that do not support their medically indigent populations, the state government and the US Congress. On July 22 a throng marched on the State Capitol to raise the cry of the medically indigent throughout Georgia. Ultimately, Reverend McDonald envisions Americans from all walks of life marching on Washington to catalyze a national demand for healthcare justice.

Corporate profits may be higher, and the Dow Jones may soar. Jobs may be more plentiful, but workers’ security is tenuous and disaster could be around any corner. Every month 100,000 Americans lose their health insurance. In the most vulnerable position are the disabled, the old people on fixed incomes, the people with chronic illnesses and those who are very poor or just skating along the edge of poverty. Americans demand seat belts on buses because they’ve been swerving off the highway. They contribute to disaster victims, or to children stuck in wells, or to the loved ones of students massacred in high schools. But those who are healthy cannot see the suffering of those who worry over how they’ll pay for the lifesaving drugs they need every day.

We must tell these stories to Americans. We must make noise. We must make news. Strategic coalitions like the one in Atlanta don’t just happen. They must be built, and there must be hundreds of them, to address this problem not only with respect to public hospitals but wherever it surfaces, at whatever level, public or private. The healthcare crisis is a true scandal, and it may take public funerals of those dying from lack of medication to dramatize its consequences.

Neil Shulman MDNeil Shulman, MD, is the author of Doc Hollywood (Fawcett) and, most recently, with Jack Birge and Joon Ahn, Your Body's Red Light Warning Signals (Dell).


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