Dr. Bock confronts Vivien about these inconsistencies, and she confesses that she is actually Jeanne and that the two sisters have conspired to exchange identities because Jeanne has health insurance while Vivien is an undocumented resident of the United States and has no way of obtaining insurance or paying for cancer treatments. The chemotherapy required to treat her cancer costs over $150,000, and the sisters cannot realistically raise that amount of money quickly. Vivien and Jeanne both plead with the doctor to “overlook” his discovery. Dr. Bock sincerely believes that the treatments will save the woman’s life.
Is it ethical for Dr. Bock to pretend he has not discovered the sisters’ deceit and to provide “Vivien” with lifesaving care?
Reflection: Health Insurance
Healthcare fraud is a serious problem in the United States. The Wall Street Journal estimated that fraud accounted for 10 percent of all Medicare spending in 2013, or $58 billion. The Department of Health and Human Services warned in 2016 that 12 percent of Medicaid expenditures (more than $139 billion) reflected “improper payments.” The phenomenon is also rampant among the privately insured. This fraud is not a victimless crime. These costs are either passed along to the general public through increased insurance rates, decreased services, or, in the case of government programs, tax hikes. In Jeanne’s case, the sisters are in essence stealing $150,000 from the taxpayers.
Yet ethical assessment often requires an understanding of context. One must ask: Why is Jeanne stealing this expensive treatment from her fellow human beings? Critics of the existing healthcare structure might well argue that she is doing so because society has created a system that is inherently unjust. A wealthy nation ought to be able to provide lifesaving chemotherapy at an affordable cost to a law-abiding middle-aged woman in desperate need. While some believe that spending almost 18 percent of our gross domestic product on healthcare may be too much, there is also a compelling argument that 18 percent is too little, if women like Jeanne must otherwise go without care. That additional expenditure would have to come from somewhere—whether military hardware or education or consumer goods—but most of us, a priori, would gladly trade a few consumer goods for affordable chemotherapy if we were to develop cancer. So a case can be made that Vivien and Jeanne are acting dishonestly in the context of an unjust system.
One of the most difficult decisions physicians confront regularly is to what degree to look the other way when patients engage in activities that are illegal but may enhance their health or improve their welfare. These situations might include patients who split their pills with relatives or those who import cheaper medications illegally from abroad for their personal use. Such cases might also include homeless people who feign illness to gain admission to the hospital, seeking clean beds and warm meals that they have been unable to obtain elsewhere.
Dr. Bock ought to encourage “Vivien” to investigate any honest means for obtaining her treatment affordably. He might also mention to the sisters that they are likely to get caught: if he could see through their deception so easily, other providers are likely to do the same—and many will have a zero-tolerance policy. If Dr. Bock does look the other way, at no profit to himself, he might argue that he is doing on a larger scale what many other providers do every day with far smaller deceptions—aiding individual patients at the expense of healthcare insurers in the context of an often-Kafkaesque medical system. Whether he should do so is a different matter entirely.
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A Most Expensive Patient
Edith is a sixty-three-year-old retired schoolteacher who lives with her husband, Herbert, and two dogs in a small town. She has six children and eleven grandchildren. One day, she notices odd discolorations under her skin, so Herbert drives her to the nearest hospital emergency room. She is diagnosed with a rare bleeding disorder of unknown cause. Fortunately, there is a treatment that cures most people—a very expensive clotting factor that costs $75,000 a vial. Most patients require only one or two vials.
For an unexplained reason, the clotting factor treats Edith’s condition but does not cure it. As a result, she requires four vials of the remedy daily—at a total cost of more than $2 million per week. She can enjoy her time in the hospital, visiting with family and crocheting sweaters for her grandkids, but since the treatment is both perishable and infused continuously, she is unable to leave the medical ward.
Edith and Herbert cannot afford these charges out of pocket, and their insurance is capped at $1 million per year. After Edith accrues more than $3 million in outstanding bills over ten days, nearly exhausting the hospital’s entire annual budget for charity care, hospital officials discuss ending her treatment.
Would it be ethical to do so, or must the hospital keep treating her at its own expense—effectively diverting charity care away from hundreds of other patients?
Reflection: Visible and Invisible Victims
In 2014, 1 percent of the US population accounted for 22.7 percent of healthcare costs, while the top 5 percent of users consumed 50 percent of all care, according to the Agency for Healthcare Research and Quality. Some individuals require even more expensive treatment: a retired prison guard named Slim Watson, suffering from a blood disorder similar to Edith’s, spent thirty-four days in a North Carolina hospital in 2000—at a cost of $5.2 million. How much to spend on any one patient is among the crucial issues at the center of the debate over healthcare rationing. Few patients like Edith or Slim Watson can afford a multimillion-dollar hospital bill, and insurers cap payouts to avoid these extreme claims, so either the taxpayers or private hospitals will end up covering the costs. This likely means less money available in the healthcare system for other patients. Former Oregon governor John Kitzhaber, an emergency room physician, has written of “visible” and “invisible” victims. If we cut off care to Edith, we must watch a visible victim suffer and die. That is highly unpalatable to most physicians and much of the public. Yet if we allow these vast sums to be expended on Edith’s case, we will create invisible victims—the patients who do not receive preventive checkups or complimentary flu shots, for example, and perish as a result. They are out of sight, so they may trouble us less. That does not necessarily mean that we have not done them wrong.
Philosopher John Rawls suggested that these questions of distributive justice be decided by pretending to wear a so-called “veil of ignorance”: we must imagine a hypothetical world, one in which we have no knowledge of our own position or status, and then create rules that are most just for all concerned. Many of us, possibly including Edith, would not design a healthcare system a priori that spends $2 million per week on a single patient at the expense of countless others. At the same time, Edith is a flesh-and-blood human being. Simply informing her that she must die because she costs too much seems anathema to many people at a visceral level.
Moreover, once we stop paying for care for Edith, there are many other patients whose care is expensive, even if it does not reach such newsworthy levels. Often organ transplants, for instance, are not “cost-effective,” in the sense that the dollars spent on these patients, if expended elsewhere in the healthcare system, might preserve more lives for a longer time. Yet few ethicists advocate for abandoning organ transplantation or adopting a perfectly efficient utilitarian model of healthcare delivery that strives to achieve the greatest good for the greater number with mathematical exactitude. For many observers, Edith’s case reveals a gap between the most rational choice (distributing money to save the most lives) and what feels just (saving the life of the human being in front of them).
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When Doctors Choose Who Lives
A state is developing a contingency plan for how to allocate ventilators (artificial respiration machines) in case of a severe flu pandemic on par with the flu pandemic of 1918–1919, which killed more than five hundred thousand Americans. Since a future pandemic could last months, while individuals often require ventilator support for only a matter of days to weeks before they recover, one ventilator could save severa
l or even dozens of lives. Yet it will never be cost-effective or realistically possible to stockpile enough machines for the entire population.
Across the state, there are already some patients on long-term ventilator support in hospitals and nursing homes, including quadriplegic victims of spinal cord and brain injuries who cannot breathe on their own. These individuals live their entire lives with artificial respiration; without such ventilator support, they will die.
In the case of a pandemic, is it ethical to remove these long-term patients from their ventilators in order to use the machines to save the lives of a significantly larger number of acutely ill flu patients?
Reflection: Ventilator Allocation
One of the first questions to ask in addressing this scenario is whether the same medical rules that apply under ordinary circumstances should apply during times of a genuine healthcare crisis. Most organizations and committees that have addressed the issue of ventilator allocation in a flu pandemic have answered this inquiry in the negative. During the course of regular hospital care, ventilator access usually occurs on a “first come, first served” basis. Experts nearly uniformly reject this approach in the case of a future pandemic. (Iron lungs were allocated in a “first come, first served” manner during the polio epidemics of the mid-twentieth century, often with unsatisfactory results.) Rather, specific inclusionary and exclusionary criteria need to be developed for such catastrophic circumstances. The ethical debate is not over whether triage should occur—that seems to have been decided—but over specifically who should be excluded.
A strong consensus exists that rules for allocation should be developed in advance, rather than on an ad hoc basis in a time of emergency. So far, the boldest effort to tackle this question occurred in New York in 2007 and 2015. A joint enterprise of the New York State Task Force on Life and the Law and the New York State Department of Health, led by highly regarded psychiatrist Tia Powell, set specific guidelines for ventilator eligibility. Among the exclusion criteria originally proposed were cardiac arrest, metastatic malignancy with poor prognosis, severe burns, and end-stage organ failure, including kidney failure. The last category, which encompassed all patients on dialysis, drew a public backlash. Yet the most significant decision of the group was one that largely avoided widespread public debate: namely, how to handle the thousands of patients already ventilator-dependent in chronic-care facilities. Powell’s committee chose to consider acute and chronic patients separately, rather than “assessing all intubated patients, whether in acute or chronic care facilities, by the same set of criteria.” The group acknowledged that commandeering chronic-care ventilators might lead to more survivors, but noted “they would also be different types of survivors.” Under this alternative approach, the disabled would be sacrificed for the greater good.
Powell’s group and like-minded ethicists fear that removing patients from chronic ventilator support reflects judgments based on third-party assessments of quality of life—the same sort of judgments that had been used with disturbing results at Seattle’s Swedish Hospital in the 1960s, where people of perceived social worth were favored for scarce dialysis treatments. Critics counter that excluding those with chronic disabilities from the assessment pool actually shows irrational bias toward the disabled. They argue that, once personal considerations are excluded, most people would prefer a triage system that saves the largest number of lives possible.
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A Cheaper Knockoff
Several new medications for hepatitis C, a disease that often leads to liver failure and cancer, are available on the market. These new medications have many fewer side effects than older, interferon-based medications, which can cause debilitating psychiatric symptoms. However, the manufacturers charge more than $50,000 for a twelve-week course of treatment. ProfitMeds owns a patent on the medication and has spent nearly $100 million to develop it. CheapMeds, a company in India, has reverse engineered one of these medications and has started to market it for $1 a pill—making the entire cost of treatment available for $84.
Is CheapMeds doing anything wrong?
Reflection: Intellectual Property
Intellectual property laws are designed to create incentives for innovation. Patents for pharmaceuticals in the United States generally last for twenty years, giving manufacturers the exclusive right to profit from their research investment in new drugs. After that, other companies are permitted to market generic versions of a drug, but generics also require receiving regulatory approval from the Food and Drug Administration—a costly and time-consuming endeavor. Notorious pharmaceutical entrepreneur Martin Shkreli exploited this process in 2015 when his company bought the rights to an off-patent medication for the treatment of toxoplasmosis—pyrimethamine (Daraprim)—for which no generic version was yet available, and raised the price by 5,556 percent. (Shkreli was later convicted of securities fraud in a different matter and sentenced to seven years in federal prison.)
The twenty-year monopolies themselves can also render some novel drugs extremely expensive. Genentech’s anticancer agent Avastin initially ran patients up to $100,000 annually, although the price has since fallen to $24,000. Gilead’s hepatitis treatment Harvoni costs $94,500 for a twelve-week course. Needless to say, these medications are well out of reach of many healthcare consumers in the US, not to mention most patients in the developing world. Even less expensive treatments are unaffordable to indigent populations in Asia, Africa, and Latin America. To address these concerns, several developing nations have shaped their intellectual property laws in ways so that local manufacturers can produce these same medications at much lower costs.
Until 2005, several nations—most notably India—permitted local companies like Mumbai-based Cipla to engage in the reverse engineering of pharmaceuticals. Under Indian law, patents were granted for processes, rather than products. Finding an alternative route to the same drug enabled local manufacturers to flood the market with low-priced “knockoffs.” Critics derided these manufacturers as “pirates,” accusing them of stealing profits from the rightful owners. Defenders, including many healthcare NGOs, countered that the individuals who purchased these “knockoffs” would not have bought the drugs at the higher prices anyway. Eventually, to comply with the international Agreement on Trade-Related Aspects of Intellectual Property Rights, better known as TRIPS, India prohibited this practice. However, India continues to find ways to circumvent Western patient protections to make and export generic drugs at low cost.
One method used by India’s government is compulsory licensing, a process permitted by TRIPS that allows nations to grant companies the right to produce products already under patent, in certain circumstances, if the patent holders are appropriately compensated. Under Indian law, “compulsory license shall be available for manufacture and export of patented pharmaceutical products to any country having insufficient or no manufacturing capacity in the pharmaceutical sector for the concerned product to address public health problems.” The first such license in India was granted for Bayer’s kidney cancer drug Nexavar (sorafenib) in 2012.
An ideal patent system would permit precisely the amount of protection needed to ensure the balance between research and access that would save the most lives. Finding that theoretical balancing point might prove impossible in a perfect world—and is certainly unlikely to occur in the political context of conflict between large pharmaceutical companies and the health ministries of powerful developing nations. For many years, this conflict has played out largely on the international stage; as increasingly expensive drugs have come to market in the United States, this is becoming a domestic political issue as well. New hepatitis C drugs cost Medicare $4.5 billion in 2014—more than fifteen times the amount it spent on older, interferon-based drugs in 2013. Many bioethicists and healthcare policy makers are now asking which patients should be entitled to drugs like Harvoni and its sister drug, Sovaldi, while others are asking whether the government should intervene directly to reduce the costs.
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No Black Sperm Donors Need Apply
Blanche’s Sperm Bank pays various rates to sperm donors based on their age and the degree of health information they are willing to provide. The enterprise excludes donors with certain diseases, family histories of genetic illness, or those below a specific height. “Nobody pays for sperm from short men,” Blanche says candidly.
One day, looking over the sperm bank’s recent supply and demand, she decides that she is no longer going to accept African American sperm donors. “I’m sorry,” she tells prospective black donors. “The demand just isn’t there. We don’t have many Caucasian women seeking dark-skinned sperm donors, and in this neighborhood, ninety-nine percent of our clientele is white.” She places a sign on her door that reads no african american donors. sorry.
Should Blanche be allowed to refuse sperm from African American donors?
Reflection: The Business of Reproduction
Sperm banks, like all other businesses operating in a market, are vulnerable to the economic forces of supply and demand. These forces can often vary considerably by region, nation, and culture. For example, the world’s largest sperm purveyor, Copenhagen-based Cryos International, made headlines in 2011 when it declared a moratorium on redheaded donors. The firm’s founder, Ole Schou, reportedly told the Danish daily Ekstra Bladet, “There are too many redheads in relation to demand.” Danes apparently prefer semen from men with dark hair and eyes. In contrast, redheaded donors remain in high demand in Ireland.
Personal preferences can run deep. In 2014, Jennifer Cramblett of Ohio filed suit for “wrongful birth” and “breach of warranty” against a sperm bank that had accidentally sent her sperm from an African American donor; Cramblett, who is white, gave birth to a healthy biracial baby girl. The case was ultimately dismissed by a state court in 2015.
Who Says You're Dead? Page 16