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Do Terminally Ill Patients Have a “Right to Try” Experimental Drugs?

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In his recent State of the Union speech, President Trump urged Congress to pass legislation to give Americans a “right to try” potentially life-saving experimental drugs. He said, “People who are terminally ill should not have to go from country to country to seek a cure — I want to give them a chance right here at home.  It is time for the Congress to give these wonderful Americans the ‘right to try.’” Though only a brief line in a long speech, the ethical implications of the push to expand access to experimental drugs are worth much more attention.

First, let us be clear on what federal “right to try” legislation would entail. Generally, a new drug must go through several phases of clinical research trials before a pharmaceutical company can successfully apply for approval from the Food and Drug Administration to market the drug for use. Advocates of “right to try” legislation want some terminally ill patients to have access to drugs before they go through this rigorous and often protracted process. Recent legislation in California, for example, protects doctors and hospitals from legal action if they prescribe medicine that has passed phase I of clinical trials, but not yet phase II and phase III. Phase I trials test a drug for its safety on human subjects. Phase II tests drugs for effectiveness. Phase III tests drugs to see if they are better than any available alternative treatments.

Thus, “right to try” is a misnomer. First, these experimental drugs are still expected to meet some safety standards before patients can access them. Second, such legislation would not likely mandate that a pharmaceutical company provides access to their experimental drugs. The company can always deny the patient’s request. Third, these laws do not address cost issues. Insurance plans are unlikely to cover any portion of the costs, and pharmaceutical companies are likely to expect the patient to foot the entire bill.

Ethical debate over “right to try” legislation recapitulates a conflict that regularly occurs in American political debate: to what extent does government intervention to protect public welfare by ensuring that drugs are both safe and effective impede the rightful exercise of a patient’s autonomy to choose for herself what risks she is willing to take? Advocates of expanded “right to try” laws view regulatory obstacles set up by the FDA as patronizing hindrances. Lina Clark, the founder of the patient advocacy group HopeNowforALS, put it this way: “The patient community is saying: ‘We are smart, we’re informed, we feel it is our right to try some of these therapies, because we’re going to die anyway.’” While safety and efficacy regulations for new pharmaceuticals generally protect the public from an industry in which some bad actors may be otherwise motivated to push out untested and unsafe drugs on an uninformed populace, the regulations can also prevent some well-informed patients from taking reasonable risks to save their lives by preventing them from getting access to drugs that may be helpful. Therefore, it is reasonable to carve out certain exceptions from these regulations for terminally ill patients.

On the other hand, medical ethicists worry that terminally ill patients are uniquely vulnerable to the allure of “miracle cures.” Dr. R. Adams Dudley, director of UCSF’s Center for Healthcare Value, argues that “we know some people try to take advantage of our desperation when we’re ill.” Terminally ill patients may be vulnerable to exploitation of their desire to find hope in any possible avenue. Their intense desire to find a miracle cure may prevent them from rationally weighing the costs and benefits of trying an unproven drug. A terminal patient may place too much emphasis on the small possibility that an experimental drug will extend his or her life while ignoring greater possibilities that side effects from these drugs will worsen the quality of the life he or she has left. Unscrupulous pharmaceutical companies who see a market in providing terminally ill patients “miracle cures” may exploit this desire to circumvent the regular FDA process.

The Food and Drug Administration already has “compassionate use” regulations that allow patients with no other treatment options to gain access to experimental drugs that have not yet been approved. The pharmaceutical company still must agree to supply the experimental drug, and the FDA still must approve the patient’s application. According to a recent opinion piece in the San Francisco Chronicle, nearly 99 percent of these requests are granted already. “Right to try” legislation at the federal level would not likely mandate that pharmaceutical companies provide the treatment. Such legislation would likely only remove the FDA review step from the process described above.

Proponents of the current system at the FDA view it as a reasonable compromise between respect for patient autonomy and protections for the public welfare. Terminally ill patients have an avenue to apply for and obtain potentially life-saving drugs, but the FDA review process helps safeguard patients from being exploited due to their vulnerable status. The FDA serves as an outside party that can more dispassionately weigh the costs and benefits of pursuing an experimental treatment, thus providing that important step in the rational decision-making process that might otherwise be unduly influenced by the patient’s hope for a miracle cure.

Thomas S. Monson and the Politics of Obituaries

A portrait of Thomas S. Monson

Thomas S. Monson, President of The Church of Jesus Christ of Latter Day Saints, died on January 2 of this year. Monson led the LDS Church for almost a decade.  On January 3, The New York Times published an obituary for Monson that was not well received by many members of the church.  They felt that it was politically biased and did not paint the life and work of their much-loved leader in a positive light.  

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The Ethics of Facebook’s Virtual Cemeteries

A photo of reporters taking pictures of the Facebook logo with their phones.

In May, Facebook reported hitting 1.94 billion users—a statistic that speaks to the tremendous popularity and influence of the social network.  As any Facebook user knows, members must take the good aspects of the technology with the bad.  The network can be a great place to reconnect with old friends, to make new ones, and to keep in touch with loved ones who live far away.  Unfortunately, conversations on Facebook also frequently end friendships. Facebook profiles and posts often tell us far more about people than may seem warranted by the intimacy level of our relationship with them.

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Should Hugh Hefner be Buried Next to Marilyn Monroe?

An old snapshot of Hugh Hefner smoking a pipe.

Hugh Hefner, the founder of Playboy magazine, died on September 27 at the age of 91. A leader in the sexual revolution of the second half of the twentieth century, Hefner has been a controversial figure throughout his life. Playboy magazine launched in 1953 and hurled his empire into mainstream success that spanned media, later including multiple television shows, clubs, restaurants, and the notoriously excessive Playboy Mansion.

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Less Healthcare, Less Regulation: Is Donald Trump Killing People?

A photo of a woman in a hospital bed

Follow liberals and anti-Trump conservatives on Twitter and you will often see the accusation that Donald Trump is killing people. For example, here are some recent tweets from three Trump critics:

Pepin Lachance @PepinLachance: @foxand friends @realDonaldTrump GOP and Trump undermining the healthcare of US citizens. They should be ashamed. People will die due to republicans they are killing us.  

Gia Sonata @RedGia: @GeorgeTakei @sherrilee7 Oh – Trump is killing people.  Slowly.  With TrumpCare.  Deregulation. FLINT still doesn’t have clean water.  “Killing me softly w/his song”

Josh B @joshious: @SenDeanHeller @BillCassidy @LindseyGrahamSC Nevadans will hold you accountable for killing thousands of people and raising healthcare costs for all if you don’t vote NO on Trumpcare!

Repealing Obamacare would certainly lead to deaths.  Twenty to 30 million people would lose their health insurance under the various repeal-and-replace bills that were considered by Congress in July.  Loss of health insurance would mean less healthcare, and less healthcare would mean more deaths.  But we could just say Trump will be letting people die, if he fulfills his pledge to end Obamacare.  Should we go further and say he’ll be killing people?

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Easter and the Ethics of the Resurrection

Easter was recently celebrated by Christians all over the world. 2017 was one of those rare years when the Julian and Gregorian calendars coincide in their timing of Easter; therefore, the Eastern and Western Churches celebrated Jesus’ resurrection on the same day.

Yet, a recent BBC poll revealed that a quarter of British Christians do not believe in the resurrection. We do not have poll results for the rest of the world. The United Kingdom is among the most secularized countries in the world, so the results are probably not representative of other countries. Yet, the modernizing and secularizing tendency seems to be spreading in the rest of the world, and it would be safe to assume that the percentage of people that do not believe in Jesus’ resurrection is on the rise.

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Respecting the Dead: The Case of Charles Byrne, the Irish Giant

Charles Byrne died quite young, at the age of 22, and quite tall, at approximately seven feet, eight inches. This is still tall for today, but must have been more impressive during Mr. Byrne’s short life in the late 18th century. According to an Ohio State University researcher, the average height for men in Northern Europe in the 17th and 18th centuries was only about five feet, five inches. Today, the average height for men in Northern Ireland has been calculated to be about five feet, 10 inches.

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In Dana Schutz’s Open Casket, Interrogating the Aesthetics of Erasure

In the wake of numerous killings of black men and women by police, representation of black death in media and art has become a heated debate. The most recent turn in this discussion does not surround a recent killing, but a murder over six decades old. At the 2017 Whitney Biennial, a prominent art show in New York, artist Dana Schutz has faced sustained protest from artists and activists over Open Casket, a painting depicting the body of Emmett Till, a black teenager brutally murdered by two white men in 1955.

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Life, Death, and Cryonics

Cryogenics, also known as cryonics, is a form of preservation involving the storing and preservation of a body at very low temperatures in hopes of one day reviving and repairing the body. Although to date no humans have been revived after freezing, some scientists think they are coming closer to making revivement though cryogenics a real possibility. Recent reports of a terminally ill British teen being frozen upon her death have brought cryogenics and the ethical debates surrounding the topic back into the news.

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Consent to Dying: The Case of Julianne Snow

Recently, a 5-year-old child named Julianne Snow passed away from from a neurological disease known as Charcot-Marie-Tooth, causing nerves in the brain to degenerate and loss in the muscles related to chewing, swallowing, and eventually breathing. Although Charcot-Marie-Tooth disease is one of the world’s most commonly inherited neurological disorders, this story made national headlines due to Julianne’s independent decision to refuse treatment.

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Teaching Children about Tragedy

In the wake of tragedy, the issue of rhetoric often moves to the forefront of public discourse. The framing of an event and the way it is discussed has a powerful impact on public knowledge and understanding of an event and its aftermath. When it comes to situations such as these, one particularly difficult task is to cope with finding the proper rhetoric for discussing tragedies with children. Is there a “right way” to talk to children about these events?

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A Hazing Death at Baruch, 2 Years Later

Charges have finally been brought against 37 members of the Pi Delta Psi fraternity at Baruch College (as well as the national organization), in relation to the death of 19 year old freshman pledge Chun Hsien “Michael” Deng back in 2013. Five members face murder charges, while the others face various charges of assault, conspiracy and hindering investigation.

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A Right to Die

The California legislature recently passed a controversial bill, which they are calling the “End of Life Option Act”. If signed by the Governor, it will go into effect this January. The bill states that it would allow adults suffering from terminal illness that meet “certain conditions” to request and be administered a dosage of life-ending drugs. There would need to be documentation of both oral and written requests. As an accompaniment, it adds that doctors, workers, etc. will not be treated as criminals or subjected to disciplinary action as a result of the lawful practice of this procedure. Euthanasia Pro Con does a very good job of bringing together some of the various arguments for and against the so-called “right-to-die” laws.

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Learning How to Die: Lessons from Oliver Sacks

During my first year at DePauw, I was assigned a reading from a book called A Man Who Mistook his Wife for a Hat. My interest was so piqued by the assigned snippet that I couldn’t help but read the entire book. I was captivated by the accessible and insightful way the author, Oliver Sacks, relayed unique patient case studies that he had encountered in his career as a neurologist. Sadly, Oliver Sacks, who touched many people through both his medical practice and his writing and who made many lasting impacts in his field, passed away last Sunday, August 30, of terminal liver cancer. Continue reading “Learning How to Die: Lessons from Oliver Sacks”

Dissecting the Deathstagram

For many, the feeling of morbid curiosity is a common yet unsettling one. It is difficult to be sure where this feeling comes from, but its presence when viewing death is strangely magnetic. It would be easy to feel that this morbid curiosity is immoral, some sort of perverse feeling not shared by the rest of the population. According to The Atlantic’s Leah Sottile, however, perhaps it is more common than expected. In documenting celebrity death sites like FindADeath.com, Sottile’s piece makes clear that this curiosity is not only widespread, but also potent enough to form entire communities where morbid curiosity is at center stage. When observing how it manifests regarding these celebrities, it is clear that such morbid curiosity is hardly uncommon.

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Should You Watch Samuel Dubose Die?

The articles are everywhere. Headlined by an eye-catching, caps-locked “WATCH,” they offer the reader the opportunity to watch someone die. The person in this case is Samuel Dubose, a Cincinatti resident killed by a policeman at the University of Cincinatti, Ray Tensing. The video is powerful, offering a disturbing look into police brutality in America. Its role is also central in bringing Tensing to justice, as his arrest was paralleled by the prosecutor office’s release of the video. But should you watch the video – one that graphically captures the last minutes of Dubose’s life?

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