Drug Money is a series of very strange stories about the pharmaceutical industry’s ignoble goals. Read more from the series here.
On October 16, 2018, fifty-five-year-old Gary Giles noticed pain in his back and neck. He sought treatment from a chiropractor but the pain persisted. He developed flu-like symptoms along with numbness, tingling, and spasms. Giles was hospitalized on October 20; an MRI showed that his brain was experiencing seizures—as many as sixteen per hour. A mysterious neurological disease, doctors suspected, was attacking his body. He then began to have difficulty swallowing; he refused water. His daughter, Crystal, mopped a continuous stream of saliva from his chin. Still his health deteriorated. More than two dozen bewildered, devastated family members crowded into Giles’s room to say goodbye. On November 4, he died.
His wife, Juanita, was at their home south of Salt Lake City, Utah, two days later when state health officials—alarm in their voices—called to tell her the results of her husband’s autopsy: the cause of Gary’s death was rabies. Anyone in contact with Gary in his last days needed to immediately receive rabies shots—or experience the same fate. Juanita and twenty-five members of the family immediately got the shots. Weeks later, they were shocked to receive a $50,000 bill for the inoculations. Giles was the first Utahn to die of rabies since 1944.
The Giles family witnessed a rare event—less than a handful of Americans die each year from rabies—but their financial devastation from medical expenses is absurdly common. When journalist Sarah Kliff gathered data about emergency room bills in 2018, she discovered that rabies shots were a frequent charge contributing to consumer medical debt. In a piece for Vox in February, 2018, she wrote that prices ran as high as $10,000 (the same shots cost approximately $1,600 in the UK). People who are uninsured or underinsured and potentially infected with rabies face a grim choice: fatal disease or crippling debt.
How can it be that a disease, medieval in its tortures and ancient in its familiarity, can still bankrupt families in suburban Utah? And why will more than sixty thousand around the world, predominantly in Africa and Asia, die of rabies this year—160 people a day, one person every nine minutes. An inoculation for rabies has existed for more than 135 years. Yet most of those who die from rabies today are children infected by the bite of a rabid dog. The story of rabies provides us with a new lens on the unique ravages of a persistent and brutal disease and the ineffectual efforts that—whether from greed or complacency or deregulation—have ensured its persistence. Rabies is a confounding disease, but it comes with social pathologies, too: the lack of universal coverage in the United States leads to staggering, bankrupting fees for some; and globally, the relentless pursuit of profits by corporate pharmaceutical companies takes precedence over the brutal deaths of the destitute.
Unlike most viruses that move through the blood stream, rabies travels to the brain via the nervous system. It can take ten days or up to forty days to complete its trek, depending on the location of infection, most often a bite on an arm or leg. But incubation—the time between infection and the exhibition of symptoms—can range anywhere from a few days to a year. In animals, the classic symptoms include frothing at the mouth, fear of water, and the violent attack of practically anything that moves—which is how the virus ensures its spread.
Few human patients bite. But excessive salivation, like Gary Giles experienced, and hydrophobia, fear of water, accompany human rabies. (You can view fascinating, disconcerting videos of patients experiencing hydrophobia here and here.) Some patients experience priapism, extended erections. Wild ravings, hallucinations, facial spasms, and verbal outbursts often accompany late-stage rabies, but so do moments of cruel lucidity. In some parts of the world, patients are restrained or kept in rooms with bars over the doors and windows. Once symptoms begin to appear—the patch of numbness on a calf, the tingling of a finger—the patient’s future is determined. Rabies is almost one hundred percent lethal. As Rachel Foster, a consultant pediatrician for infectious diseases at Liverpool University, told Mission Rabies (an international non-profit group that focuses on vaccination of stray dogs) in 2015, “Death as a consequence of rabies is one of the most unpleasant, distressing deaths you could possibly have.”
According to the Centers for Disease Control and Prevention, from 2008 to 2017 eight Americans died of rabies they contracted abroad. Last June the CDC issued a warning to travelers; it was a reaction to the death of a sixty-five-year-old Virginia woman who had returned from India with rabies but didn’t exhibit symptoms for six weeks. By the time she was diagnosed, the CDC was warning states with scolding exactitude, “A total of 250 health care workers were assessed for exposure to the patient, 72 (29%) of whom were advised to initiate postexposure prophylaxis (PEP). The total pharmaceutical cost for PEP (rabies immunoglobulin and rabies vaccine) was approximately $235,000.” (One wonders why at least emergency room professionals don’t already have PEP inoculations—but that’s a conversation for another day.)
In some parts of the world, patients are restrained or kept in rooms with bars over the doors and windows.
Dogs have long been our dual-natured companions, write Bill Wasik and Monica Murphy in Rabid, their 2012 cultural history of rabies, ever since we first came into contact with them fifteen thousand years ago around the human garbage pile. They write, “The animal infection—the zoonotic idea—is mankind’s original horror, and its etiology traces back inevitably to the rabies virus.” Yet keeping the hounds’ horror at bay is not easy. Or cheap. The first vaccine for rabies was developed by Louis Pasteur in France in 1885, after five years of work. Pasteur claimed that the drug effectively prevented development of rabies in dogs if administered as a vaccination but also prevented the development of rabies in humans after infection. (Some have disputed the efficacy of Pasteur’s 1885 drug but the newly established Pasteur Institute made good on those promises with a revised chemical formula a few years later.) Rabies was “eliminated” in the United States in 2004, largely through the institution of dog vaccination requirements. (All New York counties, except for NYC, are required to host a free rabies clinic every four months. The annual rabies related budget for Sullivan County, for instance, is $5,000.) But according to the CDC, rabies is still endemic in wildlife populations in 122 U.S. counties. (There are more than three thousand counties in the United States.)
An October 2006 episode of This American Life, tells the story of a woman named Michelle who was attacked by a raccoon while walking up the driveway of her home in upstate New York. Surprised then alarmed, she fought the ferocious animal off but not before it bit her thigh. She and her husband and son eventually beat the raccoon to death with a tire iron. But when she called the health department, she was erroneously told that she had ten to fourteen days to get rabies shots. Once another official corrected that information—one must receive rabies shots within seventy-two hours of exposure—Michelle was frantic to locate a facility that could provide the lifesaving shots. Part of the dark humor and horror of the episode is the effort required—countless calls and numerous office visits—Michelle had to go through.
Before the 1960s, when state and local agencies initiated animal vaccination campaigns, most rabies cases occurred in domestic animals. Today it is relegated, for the most part, to wildlife: raccoons, skunks, foxes, bats. To maintain wildlife immunity to rabies, many counties work with the U.S. Department of Agriculture to organize oral rabies baiting programs.
A pod or sachet that contains Raboral, a rabies vaccine, is coated with fishmeal and aerially distributed over fields and meadows. About 6.5 million baits are distributed across the U.S. each year, in areas where incidence of rabies is high. The programs have proven cheaper than catch-and-release inoculations of wildlife as well as post-exposure inoculation of humans, which can cost more than $200 million annually.
About five thousand U.S. cases of rabies in wildlife are reported each year. This month, according to my Google alert, there was a feral cat in Connecticut, a raccoon and a skunk in North Carolina, a cat in Florida, and a raccoon in Massachusetts. If a game warden comes out to collect that oddly behaving raccoon on your lawn, he will send it to a game control facility that will chop its head off and test brain tissue for rabies—the gruesome (and I might add, laborious) procedure is still the only way to determine infection.
Periodic rabies scares continue to occupy the public’s attention. In May, 2019, a rabid bat was found in the giraffe barn of the Santa Barbara Zoo, resulting in the quarantine of the long-necked beasts for thirty days. That same month, the CDC banned the import of dogs from Egypt after dogs in Missouri and Kansas were found to be infected. Also in May, an eighty-six-year-old man in Connecticut was bitten by a rabid bat that had been hiding in his iPad case. “It was a good thing I didn’t decide to cuddle him a little,” Roy Syvertson told WMUR.
Rabies, like many diseases, is a profoundly lucrative business. Although the industry line is that high prices are the result of high development costs—and indeed the manufacturing process for the rabies vaccine is complex—manufacturers’ enormous annual profits are telling. Raboral is manufactured by the German company, Boehringer Ingelheim Animal Health USA Inc., with offices in Georgia and Missouri. Boehringer Ingelheim brought in just under $20 billion in 2018. Sanofri, a French company with offices in New Jersey, is the manufacturer of the human rabies vaccine Imovax. Sanofri brought in $38 billion in 2018. Both of these companies provide thousands of doses annually of their drugs for free to international NGOs, yet that hardly changes the overall picture: thousands of international deaths occur each year—mostly brown children living in destitution—while the drug companies rake in billions in profits.
The majority of rabies deaths occur in India where a large population of stray dogs (an estimated thirty million), government disorganization, and an impoverished and uninformed citizenry contribute to infection and neglect. Municipalities can’t (or don’t) vaccinate their dog populations and few are clearly informed of how to prevent rabies. Chronic drug shortages compound the problem. Although the country produces approximately fifty million doses of rabies vaccine each year, more than one-fifth of them are exported for corporate profit. As the Economic Times reported in July of last year, this shortage then drives up the price of rabies inoculations on the black market. Importing medicine that is cheaply produced elsewhere has only exacerbated the problem; the Indian government has banned the import of a Chinese-produced rabies vaccine after reports of faked testing surfaced.
The Chinese government has had to rein in its own pharmaceutical corporations. Changchun Changsheng Life Sciences Ltd. was sanctioned by the Chinese government in 2018 for the sale of ineffective rabies medications but not before the drugs had been administered to hundreds of thousands of children. The company was fined $1.3 billion. (Last November it declared bankruptcy.) Public protests erupted after it was discovered that authorities had known for some time about the unsafe drugs but nonetheless delayed action. Premier Li Keqiang, China’s second in command, ultimately said that the company had “violated a moral bottom line.”
In 2018, various world organizations formed the United Against Rabies coalition to address the challenges hobbling rabies treatment. Their goal: the elimination of rabies by 2030.
Soon after, the death of a three-year-old girl brought public castigation of another pharmaceutical company. She was bitten by her pet dog and taken for rabies shots by her father who was told that his daughter might experience a fever. But by the next afternoon she was dead. South China Morning Post’s Jane Zhang reported that the girl’s story had been viewed thirty million times on Weibo, a microblogging site. The drug had been produced by Guangzhou Promise Biological Products and approved by China’s National Institutes for Food and Drug Control.
“Rabies coevolved to live in the dog, and the dog coevolved to live with us—and this confluence, the three of us, is far too combustible a thing,” write Wasik and Murphy in Rabid. Where poverty, unregulated corporations, environmental crisis, unstable government, and war exist, so will rabies. Although most annual rabies deaths occur in Asia and Africa, former Soviet countries also experience persistent outbreaks, as do countries in the Middle East. Last year, after four years of a war had devastated Yemen, its capital, Sana’a, began to report high numbers of rabies deaths, according to Outbreak News Today. The mass extermination of large packs of hungry and violent strays in Sana’a will likely do little to alleviate the rabies infection rate; only vaccination of dogs will do that. But, for a country at war, medications—and the means to distribute them—are hard to come by.
Even in the United States, where, like the rest of the world, we are dependent on an industry—autonomous, uncoordinated, unregulated—that has so thoroughly conflated profit and ethics, vaccination shortages are common. In 2008, a factory renovation at Sanofi caused U.S. officials to limit drug use to infected patients only, and not those seeking prevention. (The two drugs primarily used for humans in the U.S. are GlaxoSmithKline’s RabAvert and Sanofi’s Imovax.)
In 2018, various world organizations formed the United Against Rabies coalition to address the challenges hobbling rabies treatment. Their goal: the elimination of rabies by 2030. Called “Zero by 30,” the plan stated, “We have the vaccines, medicines, tools and technologies to prevent people from dying from dog-mediated rabies. For a relatively low cost it is possible to break the disease cycle and save lives.”
But news of shortages, including in the Indian city of Kolhapur, southeast of Mumbai, has already been reported in the first few days of the new year. Even if the “Zero by 30” effort is on track, some scientists believe that climate change will only increase the number of global rabies infections as wildlife, domestic animals, and humans all come into increased contact due to migration, urbanization, political upheaval, and frequent weather extremes.
“Barring some miraculous revolution in vaccines, on the one hand, or a near-total obliteration of all animals on the other, the worldwide war against rabies will never be entirely won,” write Wasik and Murphy.
Six months after Gary Giles died, I spoke to his daughter Crystal on the phone. She told me that her father had found bats in the house. They were cute. He knew many bat species were endangered so he took them outside. He never thought that they could endanger his life. Despite the consistent presence of rabies, few of us understand it. Certainly the doctors who treated Giles didn’t recognize the infamous signs. Nor did Crystal’s family or friends. “More than once,” she told me, a wince in her voice, “people asked if my father bit me.”
Ignorance about our oldest, most diabolical disease is compounded by pharmaceutical companies’ particularly morbid extortion. There are no price controls on rabies treatments in the United States. Crystal (whose married name is Sedgwick) set up a GoFundMe account in the hopes of mitigating the family’s debt from the $50,000 inoculations and costs for Giles’s funeral. The family was asking for $100,000. More than a year after Giles’s death, the amount donated stands at a mere $9,015.