Why I Hate Valentine’s Day

R. Horton1 Comment

Last year, I wrote a short essay on why I hate “Steak and BJ Day,” which is that it is built around sexist stereotypes and highlights relationships as transactions, consisting men giving gifts in exchange for red meat and sexual favors from women. Indeed, the idea of heartmanSteak and BJ Day (March 14) was to repay men for their generosity to women on Valentine’s Day. After being so kind to women with flowers, chocolate, and diamonds (or whatever), men deserved a day devoted to the kinds of things they like (ugh!).

Valentine’s Day is less crude and less obvious, but it still reinforces and exploits gender stereotypes. You might object that Valentine’s Day is a day for couples to express their love for one another equally, and I’m sure some see it that way, but men spend, and are expected to spend, far more money on Valentine’s Day than women. The implication is that men who buy lavish gifts will receive rewards of affection and sex. Satirist Andy Borowitz succinctly captured this relationship when he posted this:borowitz
I really object to the gender stereotypes that say women just want chocolate and flowers from men and will reward men with sex when they receive what they really want. I’ve heard of some mythological women who actually want sex for themselves, but men aren’t expected to hold their genitals for a ransom before providing sex.

I also have some suspicion that some men want more from women than a hot meal and a sexual favor, but women aren’t expected to show men affection and care just as a means to get in their pants.

Nonetheless, I do celebrate Valentine’s Day, and I think I always have. Perhaps I am just a victim of social programming, or maybe I’ve tried, with limited success, to create a holiday for a genuine and equal sharing of love, affection, and small gifts. I’m not sure whether it is possible to rise above the reductionistic stereotypes that infuse us from birth, but Valentine’s Day gives us a little more wiggle room than Steak and BJ Day. It is impossible to say the name of Steak and BJ Day without invoking crude masculine stereotypes. However, we can create our own Valentine’s Day, or at least pretend to, so let’s share equally, love equally, and make a better world.

Happy Valentine’s Day.

Seeking God in Silence

R. Horton

Painter Fang Min has a series of paintings featuring Buddhist monks seeming happy enough despite an insect perched on or near their faces (you can see examples here and here). When I saw the exhibit in China, a small explanation accompanied the paintings. I Monks jdon’t remember it in detail, and I can’t seem to find it anywhere online, but the story was fairly straightforward. It was about a monk who left the hustle bustle of the city to see peace and tranquility in the country only to find that his meditations were still disturbed by the sounds of the country: farmers working, livestock making noises, and so on. He retreated further away, deep into the woods, but still found the sounds of nature disturbing. Eventually, he fled deep inside a cave to find absolute quiet—except for the sound of a single insect. Frustrated that he still was unable to secure tranquility, he sought out the Buddha for advice. The Buddha told him, of course, that he must seek tranquility inside himself, not demand it from the world around him.

This reminded me of my experiences with the Religious Society of Friends (or Quakers). The meetings I attended were unprogrammed, which means Friends sit in silent reflection receptive to spiritual prompting. Some people refer to this as “silent worship” or a “silent meeting.” This isn’t really accurate, as Friends are expected to speak when moved to do so. Nonetheless, some people would remark on how wonderful some meetings were when they remained especially quiet. On other occasions, some attendees would complain of being distracted by the sounds of people speaking, children, animals, neighbors mowing lawns, airplanes passing overhead, and on and on.

I always thought that if I were to sit in silent reflection, it meant that I would not make any noise, not that I wouldn’t hear any. If I understand correctly, Quakers have the idea that God is in everything and everyone. For me, listening for God is just to listen to whatever happens to be in the universe. I never took it that God could distract me from God. The work is in the contemplation I am doing, not in finding silence.

The composer John Cage said that music never stops, only listening does. To help people listen, he composed a piece that was four minutes and 33 seconds of silence. During that piece, the audience listened to ambient sounds in the environment (or even the sounds of their own bodies). Cage said that anyone can do this at any time. It just takes an aesthetic attitude. He wasn’t trying to create four and a half minutes of silence. He was trying to create four and a half minutes of attention. Some people did not like being forced into a meditative state, but some people don’t like anything.

I suppose some of this depends on what one seeks when one seeks God. Spinoza described God as being infinite and eternal. God occupies every point in space and every moment in time. What then, is not God? Everything in the universe must be God, and God must be everything in the universe. To believe anything else is to limit God’s presence and power. I think this is why Einstein said he believed in the God of Spinoza.

Everything you hear today is the voice of God. Everything you see is the presence of God. Keep your eyes and ears open, please.

Slaying monsters: Ethics as a Matter of Opinion

R. Horton

I have the distinct pleasure of teaching ethics to many students who, frankly, do not believe the study of ethics is of any benefit to them or anyone else. From time to time, usually near the beginning of the semester, a student will express frustration that a required ethics class seems a colossal waste of time, as ethics is “just a matter of opinion.” People have to make up their own minds about what is right and wrong, and one opinion is as valid as another.

I challenge this as most ethics teachers challenge it: “So,” I say, “If someone were to kill someone, no one has any moral authority to challenge that person’s opinion that such behavior is perfectly moral.” Students will often then say, “Well, it depends.” I will then assert that whatever it depends on is the fulcrum of the student’s own moral theory—it is a creepcore moral value. With a little engagement, we usually get around to a fairly simple statement of what I do take to be a near universal moral value. It is okay for people to have their own moral opinions and to make their own decisions about their behavior so long as they are not hurting anyone.

Of course, we do hurt people. We execute people. We put people in jail. We take scissors away from running toddlers who would rather play with the scissors. We hurt people in many ways. Most students will agree that it is acceptable to hurt someone with some greater good in mind—or, for some students, it is acceptable to hurt someone as punishment. It hurts to give a child a vaccination, but the purpose is to protect the child and society from disease. It hurts to kill someone who has broken into your home to murder you, but killing the guilty to protect the innocent is considered a good by almost everyone, even as we acknowledge pacifism and non-violent resistance. This being the case, most students will agree that it is wrong to harm someone who is innocent, unless that harm is aimed at a greater good (e.g., I may violently knock someone to the ground to prevent her from falling thousands of feet to her death or give a child a vaccination to protect her from disease).

When we accept that it is wrong, generally, to hurt innocent people, we are left with two questions: 1. What constitutes harm? 2. What is a person? The first question seems easy until we try to answer it. When some information will be extremely painful to someone (say, some embarrassing photos and personal information of someone are posted in an office he is completely unaware of unlikely to ever know about), is it more harmful to tell the truth or to keep a secret? Is failing to prevent a harm the same, morally, as harming someone? Many moral dilemmas revolve around just such questions. Even with these difficulties, though, I don’t think the question of harm is what derails morality. Reasonable people with good intentions can have productive discussions about harm, even if they don’t always arrive at consensus on what harms are or are not justified.

It is the second question that effectively ends progress of moral conversation. We want to say everyone deserves equal protection from harm, but we don’t always agree on who “everyone” is. The founders of the United States purportedly believed “all men” are created equal. Women, slaves, other minorities, and children did not fall under the umbrella of “all men” in either policy or practice. Everyone should be treated equally under the law, but some of us have a fairly narrow view of who “everyone” is.

Some people want only to protect rational beings, which would seem to indicate adult humans, while others want to protect, seemingly, all living things. I spend perhaps too much time trying to understand how people who seem to want to be moral can justify slavery, torture, sexual abuse, or even genocide. In most cases, the people guilty of the horrendous crimes are not amoral; they simply have a morality that does not recognize the rights of their victims. By one way or another, they have come to view their victims as less than human.

Thus, police may view those suspected of crimes as being beneath them and undeserving of respect and thoroughly devoid of dignity. People may view those of other races as being subhuman or animalistic. In the same way, too many people compare sexual minorities with animal behavior or will even refer to “those people” as animals. Women are often viewed, depicted and described as animals or even inanimate objects. The poor, too, are often described as vermin or even rubbish. People often deny the worth and dignity of many classes of people. Though we all come from the same creator (your choice who the creator is: evolution, God, spirits, or whatever), some of us manage to ignore the worth of others in our community.

Religious Friends, Quakers, have the idea that we should always recognize “that of God in everyone.” Even if you don’t believe in God, this idea is a powerful way to examine what others deserve our respect. We all share the same ancestors. We all share the same emotions. None of us is perfect, and no one is without worth. Even for those who have done the worst, dictators, terrorist, and so on, we must remember that they, too, are made of the same flesh.

It is through empathy and compassion that we can better understand our enemies. I am not saying there can never be a justification for punishment or even some defensive acts of violence, but I am saying these acts must be carried out with the full recognition of our own flaws and the humanity of our enemies, opponents, and, yes, friends.

You are not perfect. Try to love another imperfect person today. And tomorrow.

All Research Is Biased – Might As Well Get Paid For It

R. Horton1 Comment

Capitalist Epistemology: Is Money Truth?

On November 28, 2014, the BMJ (formerly the British Medical Journal) posted an announcement that it would no longer publish papers from authors with financial ties to industry with the aim of eliminating harmful bias from published articles. I’ve since talked to some researchers who quickly pointed out that everyone has biases, so eliminating financial conflicts of interest will not result in objective research free from fraud or manipulation, and I agree with them on that point. [Note, a response from Fiona Godlee clarifies this policy: “The policy applies only to editorials and clinical education articles designed to guide patient care and does not extend to other types of article published in The BMJ.” updated 1/14/15.]

As far as I know, Gregor Mendel had no financial conflicts of interest, but his data proved Pharmaceutical-cartonhis theory of genetics perfectly—too perfectly, almost everyone agrees, to be true (see a brief discussion here). Paradoxically, Mendel seems to have cleaned up his data in order to help promote his theory, which happened to be true, so he used untruth to promulgate truth. Other researchers have let their biases affect them more nefariously, letting sexism and racism cloud their ability to form accurate or even coherent theories of health, intelligence, or moral agency.

But the goal of science has always been for an objective pursuit of truth free from emotional bias. Philosopher Alison M. Jaggar made a compelling argument that no scientific inquiry is value free or separate from emotion. She argues, on the contrary, that emotion is a necessary part of any pursuit of knowledge. “Disinterested inquiry,” she says, “Is an impossible dream.” (See “Love and Knowledge: Emotion in Feminist Epistemology.”) A scientific researcher with no bias and no values is both impossible and undesirable, I agree, but it is one thing to have a socially constructed bias and another to have a financially constructed bias. Being paid to have a bias raises a whole new set of problems.

I don’t mean to suggest that pharmaceutical or biotechnology companies should be prohibited from hiring scientific researchers or even that those researchers should be prohibited from publishing in scientific journals. They should, of course, have adequate oversight to detect and prevent fraud, but I’m sure many great products in medicine and elsewhere have resulted from an unbridled pursuit of profit.

The problem is that we don’t have enough independent researchers to ensure a robust search for solutions to human problems that may not lead to profit. Further, we don’t have enough independent researchers to prevent harm from flawed conclusions that may, in fact, generate a profit in spite of their flaws at great risk to public health.

We need publicly funded research centers or anonymously funded research centers where researchers can pursue knowledge that may or may not be convenient for corporations. These researchers would be freer to publish negative results of “promising” treatments. They would be freer to pursue treatments that may be effective but less profitable. As anyone familiar with this problem is aware, it is far more profitable to market maintenance treatments than treatments that will actually cure any given medical condition. Imagine if public funding were also used to manufacture inexpensive and effective cures rather than expensive and less effective treatments.

Of course, this is not the direction the United States (or the world, really) is heading. Rather, we have now entered the age of “venture philanthropy.” (Read Llewellyn Hinkes-Jones’ piece in the New York Times. ) Venture philanthropy enables foundations to use tax-exempt donations to invest in for-profit companies. Rather than using public funds to ensure research free from financial conflicts, venture philanthropy uses public funds to develop and market new products. As Hinkes-Jones puts it, “If the intent is to cure rare diseases, then we should be increasing the budget for the National Institutes of Health and other research initiatives. Instead of gala balls and donor drives, higher taxes on the same rich benefactors could be used to fund the research that isn’t already being supported.”

When the BMJ announced it would no longer publish pieces by authors with industry ties, one chilling line from the article leapt out at me: “In some fields—for example, obesity medicine, genetics, and rheumatology—we may find it difficult to recruit authors free of relevant financial links with industry. It might even prove impossible.” Somehow, we must find the will to make it possible for researchers to make a living and publish their findings without joining the payroll of for-profit corporations. I do not believe all researchers are motivated only by the opportunity to accumulate wealth. Jonas Salk passed the opportunity to amass great wealth with the polio vaccine. Others deserve the chance to do the same.

Why I Am Not Your Ally

R. Horton1 Comment

In response to injustice against members of various communities, those affected rise up, thank goodness, against the injustice accompanied by their allies from outside the community. Thus, the black community has white allies, the gay community has straight allies, women have male allies, and so on. I want to join all these communities in the struggle for justice, but I’ve never felt any connection with the word “ally.” Perhaps I over think things (I’ve certainly been told I do), and I can see why some people would see an “alliance” as a good thing, but I really think the idea of an ally preserves the concept of division and otherness.

The source of most oppression comes from this concept of otherness. Simone de Beauvoir told us, “No group ever sets itself up as the One without at once setting up the Other over against itself.” Thus, she says, “In small-town eyes all persons not belonging to the village are ‘strangers’ and suspect; to the native of a country all who inhabit other countries are ‘foreigners’; Jews are ‘different’ for the anti-Semite, Negroes are ‘inferior’ for American racists, aborigines are ‘natives’ for colonists, proletarians are the ‘lower class’ for the privileged.” It is the distinction between One and Other that is the source of the problem. If the One becomes an advocate for the Other, does this change the balance of power? I argue that it does not. The ally speaks from a position of power on behalf of the less fortunate, often with the expectation that the weaker party will feel and exhibit an overflowing gratitude. At least, that is how it feels to me.

All the same, we can’t ignore our differences from others. It is important to preserve cultural distinctions, for example. Only the Deaf community fully understands the special problems faced by deaf people. Only the Native American community can understand injustices against Native Americans. And so on. What unites us in our struggle, though, is that we all are able to understand what injustice is. Those of us who are outraged, disgusted, and revolted by injustice, will react with those feelings every time we see it, regardless of the specific circumstances or characteristics of the victim. At least this is what I hope. When I react to injustice, I don’t do it because I feel someone deserves my sympathy or respect. I do it because I am offended by injustice. The specific qualities of the victim are not the source of my outrage.

This isn’t to say the specific qualities of the victim are not relevant, especially regarding discussions of how to understand and address the injustice. We need to have conversations so that we can understand each other. As Kwame Athony Appiah put it in his book, Cosmopolitanism, “We take seriously the value not just of human life but of particular human lives, which means taking an interest in the practices and beliefs that lend them significance.” We must also understand the experiences of others. Through conversation, stories, art, music and language we can share experiences and enhance our ability to imagine the lives of others. By understanding the experiences of others, we are better able to understand that their experiences are morally inexcusable.

Affirming justice requires us to see the common humanity we have with others. Those who harbor feelings of innate superiority are easily enticed to barbarous behavior. David Hume notes that Europeans had such feelings of superiority over natives in America that it “made us throw off all restraints of justice, and even humanity, in our treatment of them.” He goes on to describe similar treatment of women, owing to the fact that men “have in all countries bodily force sufficient to maintain this severe tyranny.” Those who are able to disregard the humanity of others and have the power to force them in to submission feel entitled to exercise their power. It is my contention that the person who does not carry feelings of entitlement will be sickened by the abuse of others. When we recognize our shared experiences with others, feelings of entitlement dissolve. When we feel an innate superiority, entitlement is cemented in our psyche.

The people who are most able to recognize their common humanity are those who have experienced injustice or at least recognized the possibility that they might. I don’t mean those threatened by the loss of their own power or privilege but those who recognize that we are all inferior in someone else’s eyes. The rage against injustice against other races or citizens in other countries is a rage against injustice that could befall anyone at any time. Often marginalized and oppressed groups recognize the oppression of other groups before the privileged can see. Declaring that someone is privileged, however, has its own hazards. A person’s oppression may not be readily apparent on his or her face or skin or other aspects of personal appearance. Religious, sexual, gender, and cultural differences are not always visible on the skin, but these differences often lead to extreme oppression and violence.

Occasionally, people are unable, flawed as we all are, to recognize their common humanity allieseven with those with whom they have no discernible differences. Consider the bitter conflict between the Hutu and the Tutsi in Rwanda. In a 1996 interview with Charlayne Hunter Gault, Professor George Izangola described the lack of differences between the two groups: “In Rwanda, the Tutsi and the Hutu are the same people. They are all people–large grouping or communities which go from seven regions of Cameroon to Uganda–all the way to South Africa, in the same culture. People used to be Tutsi or Hutu, depending on the proximity to the king. If you were close to the king, you owned wealth, you owned a lot of cattle, you are a Tutsi. If you are far away from the king, you are a cultivator, you don’t own much cattle, you are a Hutu.” (I’ve taken this quote from PBS here.)

If some of us can deny the humanity of those who look almost exactly like us, then “otherness” is a phenomenon that goes beyond race and gender. We either recognize that we are part of humanity or we do not. One way leads to freedom and the other to fascism. In “The Ethics of Ambiguity,” Simone de Beauvoir declares that we are each in a subjective struggle for freedom but that we are defined in our relationship to others. Our struggle for our freedom entails a will for the freedom of others. She says the activist “exists only by transcending himself, and his freedom can be achieved only through the freedom of others. He justifies his existence by a movement which, like freedom, springs from his heart but which leads outside of him.”

For Beauvoir’s activist, the constant push for freedom is a push for humanity. In this sense, an injustice anywhere is, indeed, a threat to justice everywhere, as the saying goes. The existence of injustice itself destroys the condition of freedom. Resistance is, she says, the annihilation of injustice. In an apparent paradox, I struggle alone but alongside and in relation to others. As your struggle is yours alone, my struggle is mine alone. Rather than acting as an ally seeking justice on your behalf, we must work together to secure freedom on our own account, which requires freedom for all.

My Actual Dream About Peter Singer

R. Horton

The following is an actual dream (nightmare) I had. As far as I know, it doesn’t mean anything. I have no idea why Peter Singer was in it, but I only wish him good health and safe travels.

I am crossing riotous waters on a suspended steel walking bridge composed of steel cables with metal planks bolted to them on either side. As I walk, a storm moves in quickly and pelts me with blinding rain that makes footing unsure. As my feet slip on the metal planks, the planks begin to come undone and slide off the cables. I am forced to cling to the cables and pull myself up onto the loading dock on the far side of the bridge.

As I take cover under an overhang on the dock, I see Peter Singer in a white cargo van on an elevated roadway or ramp of some kind. To my horror, he drives off the ramp and crashes nose first onto the concrete dock below. The van is badly mangled and I fear he is dead. I think to call 911 but realize my phone is in the van. Just then, he pops through the broken glassbroken glass of the van like a jack-in-the-box and says, “Well, that was lucky!” in a comic fashion to the sound of laugh track laughter. Before I can feel any relief, he collapses and appears dead.

I walk to the nearest person (the dock seems crowded with rubberneckers now) and ask, “Did you call 911?” She says, “Well, HE won’t call!” [More laugh track.] Finally, I am overwhelmed and start to walk away. I hear a voice call after me, “I’m sorry. Did you know him?” [More laugh track.] I say, “No, but I’ve been reading his books for decades.” [Laugh track.]

The voice replies, “I know what you mean. It takes me a long time to get through a book, too.”

Silence.

At-Home Dads Then and Now: Still Not a Babysitter

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At-Home Dads Then and Now: Still Not a Babysitter

When my first son was born, his mother and I were lucky enough that we could juggle our schedules and avoid putting him in daycare. I hadn’t thought much about the role of fathers before becoming a father, but I was soon to learn the full extent of social prejudice towards dads. I think the most common complaint for nurturing fathers everywhere, whether they stay home with their children or not, is being referred to as a babysitter (for example, see here. When out and about, people would often attempt to compliment me with a cheery, “Oh, it is so nice to see dads out babysitting.” Depending on my mood, I would sometimes challenge them by asking, “Have you ever seen any moms out babysitting?” When in a less surly mood, I would say, “I’m not babysitting; these are my children!” Over the years, fathers have generally become much more involved in childcare, but too many people still diminish their role to babysitting.

In the office where I worked at the time my son was a baby, we had a dry-erase board to show where people were when out of the office. When female coworkers were out with

By whatsthatpicture from Hanwell, London, UK [CC-BY-2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons
their children, someone would write on the board “sick daughter” or something similar. When my son was sick, I would return to find a notice proclaiming I was out “babysitting.” It didn’t seem like such a problem at first. I would just chuckle and explain that if I had a babysitter, I wouldn’t have to miss work. I would also note that babysitters get paid for their efforts, but fathering my child provided no financial rewards at all. I was trying to raise awareness of the importance of fathering, but I generally only succeeded in raising a chuckle.

I also noticed that when I went to a doctor’s visit with his mother, the doctor and nurses would speak to her even when I was closest or even when I was actually holding my son. It was clear that the mother was the default parent and the father, no matter how involved, could only provide auxiliary services. It was around this time that I read The Nurturing Father by Kyle Pruett. Since its publication, this book has faced some criticism but remains a groundbreaking and relevant work in fatherhood research. The book explored many facets of fathering, but the only message I saw was that fathers can do everything mothers can do, and it made me want to stay home with my son (rather, sons, as we were soon expecting our second child).

I was able to quit my job and stay home full time. My life was a mélange of celebration and condemnation. Many people would congratulate me on being in touch with my “feminine” side. Others would offer an indirect criticism with a loaded questions such as, “How does your wife feel about you staying home full time?” Or, sometimes men would say, “Oh, I wish my wife would let me do that!” I resented the implication that I was “not working,” and I further resented the implication that I was somehow taking on something easier than what my wife was doing. Any mention of this was generally met with, “Well, now you know what women have faced for centuries!” Women (and nurturing men) have suffered from bias and disrespect for centuries, but I don’t think at-home dads are the ones most in need of consciousness raising experiences.

On the other hand, I was quite lucky. I found several playgroups that welcomed me with enthusiastically open arms. I was often the only dad to be found, but I did meet a couple of other at-home dads. For the most part, the women in the group treated me like any other parent, but occasionally I had awkward conversations. One mom once asked me whether I fed my children. Given that they were strong and healthy, I thought the answer was obvious, but I guess she was asking whether someone else was feeding them for me. When I told her I did, indeed, feed my children, she replied, “With hot food?” Nope, we dads just give them cereal and cookies, of course. I let her know I cooked for my children and moved on. Fortunately, she was the exception to the rule of open and inviting moms who were happy to share childcare tips and horror stories. Other men in the eighties weren’t so lucky. A few men sued mothers-only groups for access to parenting support. All parents struggle with the pressure of parenting, and finding others for support is essential.

Dads are generally expected to be extremely proud when their sons follow in their career footsteps, and I am proud that my younger son now has children of his own and stays home to care for them. Some things have changed in the intervening years, but people still ask him whether he is “babysitting” from time to time. More fathers stay home full time now (or at least take the role of primary caregiver), so it attracts less attention. The biggest difference I notice when out with my grandchildren, though, is that almost all men’s rooms now have changing stations. Gone are the days of having to choose between changing a diaper on the floor of a public restroom or a more sanitary location in full view of the general public.

I don’t really think anyone would be surprised now to learn my son knows how to turn on the stove, but there biases against men involved with children persist in some areas. Men are still mocked for their ignorance of food, as can be seen here. Moms remain the default experts on nutrition, soothing, and health. Too many people believe that only moms know how to care for children, as seen here. Dads are recognized more for playing with their children and encouraging them to be joyful and competitive.

Life will be easier for moms and dads when the denigration of childcare ends and everyone who cares for our next generation, whether mom, dad, or an early childhood teacher, is respected and valued for their contribution to creating the next generation of nurturers, leaders, inventors, and parents. We’re doing much better, but we can aim higher still.

Your health choked by the invisible hand of the market

R. Horton

Sometimes the invisible hand of the markets is all too apparent as it clutches us by the neck and strangles us slowly and painfully. If you are a typical adult American, you are likely to have at least one prescription for a drug indefinitely, either until you die or another drug is developed to replace it.

In the world of libertarian fantasy, pharmaceutical companies would compete to develop drugs we need to cure diseases that plague us. Hoping to sell us their products, they would race to develop effective and inexpensive drugs that consumers would rush to purchase. Unfortunately, those profits would be short-lived. People would buy the drugs, get well, and go about their business drug-free and non-contagious. Companies can make some money that way for sure, but it is much more lucrative to develop drugs that do not cure anyone but simply maintain their health.

This is why we have so many drugs for cholesterol, blood pressure, acid reflux, and other chronic conditions with fewer drugs aimed at eliminating disease, and even fewer aimed at curing (or even treating) diseases that affect those too poor to pay for expensive remedies. The fact that there is any treatment, even in early experimental drug trials, for Ebola is thanks to government funding of research. Left to markets alone, the diseases that kill the most people in the world would be completely ignored by drug companies.

Some diseases, such as Type II Diabetes, affect poor people, but drug companies spend quite a bit of time developing treatments for them. This, of course, is because enough people receive insurance payments from private insurance or Medicare and Medicaid to make treating them worthwhile. Almost 27 percent of Medicare beneficiaries 65 or older have diabetes, accounting for 32 percent of Medicare spending.  in 2002, Medicaid expenditures for people 20 and over with diabetes were estimated at more than $18 billion.

Of course, diabetes also affects people who are relatively affluent by global standards. In fact, it is considered a disease of babymotherdeathoverconsumption notwithstanding the fact that many who suffer from diabetes in the US are less affluent. Thus, it is extremely profitable for companies to develop products and services for diabetics in the US where their profits are underwritten by taxpayers. Diseases that primarily affect impoverished people in poor countries get much less attention.

It would seem likely that donations from individuals could fund research and development into alleviating disease. Indeed, the ALS ice bucket challenge raised more than $100 million as of this writing for research and treatment of ALS. But this again, leaves the allocation of resources to the mercy of marketing campaigns. ALS is a cruel disease, and it will only be a blessing if a cure can be found, but diseases that affect primarily impoverished individuals (e.g., malaria, antimicrobial resistance, trachoma) in the world are still waiting for a viral marketing campaign to draw attention to the millions that die from them. Market-based approaches drive money to those with the most influence.

In order to reduce the burden of diseases that affect the most people, we must provide research funds that are distributed where they will be most effective, rather than where the market funnels them. We need research centers funded by money offered with no conditions with the charge only to reduce mortality and relieve suffering. Such centers could be funded by government money or by individual contributions, but funding must come with no strings attached other than a demand for transparency from researchers as to how the money is used and what diseases are being treated. Some have offered solutions that would rely on industry to conduct research and develop products to alleviate suffering, but industry cannot be trusted with this task. Industry will always develop products to maximize profits, not minimize suffering.

The so-called “rugged individualists” in our society would argue that each person should have the healthcare he or she can afford, as income is a reliable measure of a person’s worth. Unfortunately, disease doesn’t attack people on the basis of merit. Honest and hard-working individuals can and do fall ill or become injured. Some are surprised by their turn of fortune. It is easier for a wealthy person to become poor than it is for a poor person to become wealthy, and disease and injury are great conveyors to the lower classes. Some, of course, are rich enough to be indifferent to the cost of healthcare or even long-term care. Even without working at all, these individuals will be housed, fed and treated.

People who work for their income, though, even in highly paid professions, are vulnerable to losing everything to healthcare costs. The “excellent” health insurance many people rely on is tied to employment and employment is tied to health. The unlucky ones who become ill lose both in a heartbeat. Bad luck isn’t a matter of bad choices or immorality; it is only a matter of chance. Libertarians argue, basically, that people should be responsible for the choices they’ve made in life, but libertarians also feel the government should protect people from events and circumstances out of their control. Thus, libertarians support the use of government funds to provide courts, police, and standing armies to protect the security of citizens.

The risk of disease and injury threatens us all. The question is whether we, as a society, should take responsibility for protecting all our citizens from this threat. If we don’t do this through government action, we must do it through collective action. Single-payer healthcare, such as all other developed nations have, is the most obvious solution to making citizens secure. Other solutions exist, and can be considered, but no one can prepare for catastrophe alone—collaboration is required.

We must provide funding for both medical research and healthcare. I am not asking you to provide healthcare for someone else. I am asking you to share the burden of providing healthcare for yourself. Sure, there is the chance you will never need it, but your chances are no better than anyone else’s. If we are not all secure, we are all insecure, we are at risk of being choked by the invisible hand. If we are insecure, we are not free.

 

 

 

 

 

Ebola and the ethics of international drug testing

R. Horton

Ebola has been around for nearly 40 years now, and until recently the public was unaware of any available treatments or treatments in development for the disease. In fact, there is no market incentive for pharmaceutical companies to develop treatments as most of its victims are too poor to buy medicines. If and when Ebola spreads to more affluent parts of the world, of course, pharmaceutical companies will adjust their research and development strategies.

As market incentives for development of treatments do not exist, it falls to governments to fund research into possible treatments and vaccines. As Marie-Paule Kieny, assistant director-general of the World Health Organization (WHO), pointed out, “If it hadn’t been for the investment of a few governments in the development of these drugs, we would be nowhere.” Much of the funding for research has come from the United States, not from humanitarian concerns for Africans, but for domestic concerns. According to a Globe and Mail article by Geoffrey York, “most of the research on Ebola treatments has been financed by the U.S. government, often because of fears that the Ebola virus could be used aesculab-stabas a form of bioterrorism.” Be that as it may, it is a relief to know that someone is working on treatment and prevention.

As the disease has occurred in Africa, you might expect that research on it should also occur in Africa with robust drug trials being conducted in an ongoing basis, Bioethicist Arthur Caplan  says it is unreasonable to expect the research to happen in Africa. He wrote, “Privileged humans were always going to be the first ones to try it. ZMapp requires a lot of refrigeration and careful handling, plus close monitoring by experienced doctors and scientists—better to try it at a big urban hospital than in rural West Africa, where no such infrastructure exists.” ZMapp is the drug given to the Americans who contracted Ebola in Africa before being flown back to the US for treatment.

It might be possible for pharmaceutical companies to build such infrastructure, but Caplan encapsulates the real reason research does not happen in Africa nicely: “Drugs based on monoclonal antibodies usually cost a lot—at least tens of thousands of dollars. This is obviously far more than poor people in poor nations can afford to pay; and a tiny company won’t enthusiastically give away its small supply of drug for free.” Enthusiastically give away? No, they won’t even develop the drug in the first place.

Now that an experimental treatment (ZMapp) does exist, should it be tested on Africans? Bioethicist George Annas says, “If the drugs we are currently working on have been shown to be reasonably safe, and if there is realistic and robust African review and individual informed, voluntary consent, use of American-developed drugs in Africa could be justified.” Annas is here emphasizing the protection of possible African research participants rather than explaining why only the privileged should receive the drug, and he has good reason.

It isn’t as though the lack of infrastructure in Africa has prevented drug trials from taking place there in the past as you might imagine from the debate over Ebola drugs. In fact, testing has raised serious issues of exploitation in the past as drugs were tested on vulnerable populations with no intention of ever providing those same populations with any treatments that might be developed. In 1994, the HIV drug, AZT (zidovudine) was found (in a study known as AIDS Clinical Trials Group 076)  to prevent transmission from HIV-positive mothers to their infants. The study was considered important in the development of drugs to treat AIDS, but there were no plans to provide AZT to the communities where it was tested once the clinical trials concluded. Research subjects in Africa bore the risks associated with taking experimental medications but would not see the benefits of the medications developed.

As there is no market incentive for pharmaceutical companies to develop treatments while protecting research subjects in vulnerable populations, it is up to governments to help promote treatments for unprofitable diseases. This has obviously happened to an extent., but we could, and should, do more. Philosopher Thomas Pogge has initiated a plan to help improve the situation. He has proposed a Health Impact Fund  that would provide a sort of artificial market incentive for companies to develop otherwise unprofitable treatments. Under the plan, governments would contribute to a fund that would then be distributed to pharmaceutical companies based on their ability to develop drugs that would have the greatest health impact. In order to receive payments from the HIF, companies would agree to provide treatments at cost anywhere in the world. I don’t know whether the Health Impact Fund will provide a solution to treating diseases that primarily affect the poor, but it certainly represents the kind of thinking required to address these serious issues.

If we are not motivated by the suffering of others in the world, and it appears many in affluent countries are not, we may do well to recognize that diseases do spread beyond all borders. Diseases that do not affect us today may well affect us tomorrow. The so-called “free” market is obviously not the solution, so we will do well to consider other options.

Grief Story: Daughter recalls her father’s death in the UK

R. Horton2 Comments

The following is the recollection of a woman in middle age reflecting on her father’s illness and death some years earlier. I’ve heard many people from the UK who express similar gratitude for the NHS.

Memory is not my strong point. I say that because, when someone is dying, memory can get fuzzy anyway and I will remember some things about my Dad’s dying and death clearly and some things less so.

I guess Dad’s illness became most obvious about a year before he died. I can’t remember whether I knew it was Myelodysplasia – MDS (a form of leukemia in which the bone marrow does not function normally and produces insufficient number of normal blood cells ). What I do remember is that he started to feel tired and listless and started to have regular blood transfusions, at first once a month, then once every two weeks and finally weekly (and it could have even been more often). This trek to the hospital for the transfusions was quite a burden for him and for Mum. I was living 200 miles away at the time so heard about it in our weekly phone calls. Mum would tell me how he was doing. It seemed at first that everything was under control and there was nothing really to worry about. Life went on.

I think the first time I began to realize that something was really wrong was when I went home for a visit and saw the weight Dad was losing and how his mood was really affected by the illness. He was irritable, not his usual cheerful self. Someone had come to visit, a neighbor who, if I remember right, was also going through some illness himself. I Despairremember Dad only being able to tolerate a very few minutes of the social interaction before he had to give his apologies and go back to bed because he was so tired. I think this was a shock to me. This had to be about 6 months in.

I tried to visit more often of course, but a life in another city and a busy job kept me from doing so. I would hear in more regular phone calls with Mum about Dad’s slow deterioration. I marvel at the fact that the intense regime of transfusions and the treatments associated with them were free to Dad – a function of the British National Health Service (NHS). Over their years of working Mum and Dad had contributed their National Insurance contributions and now the NHS was doing what is was supposed to do – support them in their hour of need. Unlike here in the US, my parents never had a moment of worry about having to pay for the treatment – a true blessing at a time when any extra worry would have been overwhelming.

I learned later that Mum really knew what was happening, despite downplaying the seriousness to us (adult) children. I also learned later from her that she had tried to talk to Dad about the inevitable end point that she knew was coming – his imminent death, but, either because of his fear or discomfort for both of them in talking about such a taboo subject, she couldn’t get him to talk to her until a few days before his death and then only briefly.   My heart aches for the lack of this conversation, and I tear up now imagining what more discussions could have meant to them both.

Over the months, I think I had been hearing the stress in Mum’s voice and came to see them more often. However, she never asked for help – a Northern British trait if ever there was one. The first time she did tell me she needed me to come was on the day of the General Election in May of 1997. I will never forget that day. I was volunteering for the Labour Party that day, taking numbers at the polling station. Mum and I talked and she finally told me that she feared the worst – would I come? I, of course, said yes. I stayed up to watch Michael Portillo lose his seat  and got on the earliest train home the next morning.

When I arrived at home, I remember the stress, grief and fear that I encountered in Mum. I also remember seeing Dad, in bed, so tired, exhausted and drained. And thin, stick thin. A shock to me after not seeing him for a few weeks. That afternoon, the doctor came (yes, a home visit – a rarity these days). Dad had also been tended to by the District Nurse (as a side note, my recollection was that he had been looked after by Macmillan Nurses – an amazing free service via the Macmillan Cancer Support charity in the UK. In later conversations with Mum for this article, she reminded me that although they had applied for this help, everything happened so fast in those last days that Dad died before she got their help).   All of us, the doctor, the nurse, myself and Mum sat outside in the garden on the afternoon of 2nd May. I remember that scene so very clearly. I remember the doctor telling us about Dad’s condition and how he had deteriorated. I remember asking the doctor directly “How long does he have? Days? Weeks? Months?” I remember the doctor telling us that we should prepare for Dad’s death in the next hours and days.   It’s hard to convey to those who haven’t experienced this kind of interaction what a profoundly awful, sad and gut-wrenching feeling is engendered by this information. I think that’s why I remember it so vividly still today, 17 years later. There is something good about knowing this though, of course. It gave us just a little time to prepare.

So, with that time, Mum and I contacted my brother and sister who made plans to come straight away. That night I told Mum I would spend the night with Dad to give her some rest. In hindsight I don’t really know whether I regret that decision or not. It was probably one of the most traumatic and harrowing times of my life. I won’t go into details here but suffice to say that Dad was hallucinating on morphine and coming in and out of rational thought. It was a powerful and devastating experience, for both of us.

On Saturday my sister made it in the morning. She spent some time with Dad and then Mum and us girls made it through the day. Dad was in bed, still gravely ill but hanging on. What I now believe is that he hung on determinedly and staved off death until my brother made it home in the late afternoon. What an amazing gift he gave us for us all to be together at this profound moment. All of us were downstairs a couple of hours after he arrived and I heard a noise upstairs. Mum and I went to check on Dad and sat with him a while. Then he died.   Once more, it’s hard to convey the gravity of this experience. I was so glad we were with him to hold his hand and let him know that he was loved as he journeyed out of this world.   Once his spirit was gone and his body remained, we all as a family spent time with him, in his own bed, sitting with him, drinking whiskey and sharing tears and memories. The doctor and funeral directors came later that night and he was truly gone, spiritually and physically. To be honest much of these activities are a blur to me now.

I suppose the reason for putting all of this down on paper is partly to remember that time and have a record so that it’s noted in this span of life when I can still recall some details. Another reason is to remark on my experience of how terminally ill people are supported and cared for in England. Mum will have her own experiences of the National Health Service treatment leading up to this final time. From what I remember it was supportive. My sister reminded me that it wasn’t all great and that sometimes Dad would be waiting on a trolley until he could get a place in a ward and that this experience made him determined to die at home. However, what I do clearly remember is the warmth, care, attention and dedication of the healthcare providers I encountered. And, what I also remember is that all of this amazing care was free at the point it was needed. No-one in this story had to have the additional stress of worrying about which treatments were covered by health insurance. No-one had to worry about co-pays or debt because of the treatment my Dad had to have. No-one had to have the additional stress of worrying about bankruptcy if things weren’t covered. I know the NHS has it’s problems – it did back then and it does now. But, even though problems exist, the fundamental principles of the NHS: that it meet the needs of everyone; that it be free at the point of delivery; that it be based on clinical need, not ability to pay substantially helped my family to experience leukemia diagnosis, treatment and ultimately death in the best and least stressful way possible. I hope you’re listening America.