Fear and Loathing in Liberia

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

Two weeks ago, I wrote a commentary decrying the current hysteria in the US over Ebola. It was ironic, I argued, that so many people were demanding the federal government take immediate steps to address the perceived threat of Ebola while simultaneously ignoring the real public health threats that we face.

A seasonal disease like influenza, for example, takes the lives of tens of thousands of Americans every winter. Still, far too many people refuse to get an annual flu shot. Similarly, outbreaks of preventable (and potentially deadly) diseases like measles, mumps and whooping cough are becoming more and more common as childhood vaccination rates plummet.

Moreover, the politicians and pundits calling on the Obama administration to take radical steps to combat Ebola are the same individuals who have repeatedly criticized efforts to combat the main causes of mortality in the US. Plans to tax junk food or limit the size of sugary sodas are seen as unwelcome government intrusions into the private lives of Americans, despite the fact that over 300,000 Americans die of obesity-related illness every year.

This isn’t to say that Ebola shouldn’t be a concern for public health officials in the US. I previously criticized both the US Centers for Disease Control and Prevention (CDC) and US Customs and Border Protection for their initially tepid response to the crisis.

CDC officials, for instance, were slow to update guidelines for treating patients with Ebola, initially recommending a level of training and use of protective gear that was woefully inadequate. As a result, two nurses who cared for an Ebola patient in Dallas are now infected with the virus. Thankfully, these women are likely to recover.

The CDC has now released new guidelines for clinicians that are similar to those used by Doctors Without Borders, the charitable organization at the forefront of combatting the Ebola epidemic in West Africa. These guidelines, along with new screening procedures for travelers arriving from countries affected by the Ebola epidemic, make it even more unlikely that we will have a serious outbreak here in the US.

Unfortunately, our public response to Ebola is marked by ignorance, fear and panic. Parents of students at Howard Yocum Elementary School, located in a bucolic suburb of Philadelphia, recently protested the fact that two students from Rwanda were enrolled. Rwanda is a small East African country that is 3,000 miles away from the epicenter of the Ebola crisis, and has no reported cases of the disease. Nevertheless, frightened parents threatened to boycott classes. In response, school officials asked the parents of these two young children to “voluntarily” quarantine their kids.

What happened at Howard Yocum Elementary School is not an isolated case. A teacher in Maine was put on mandatory leave simply for attending a conference in Dallas, where the first US cases of Ebola were reported. A middle-school principal in Mississippi was suspended after returning from a family funeral in Zambia, another East African country located many thousands of miles from the heart of the Ebola outbreak.

Cruise ships have been put on lock down, subway stations closed, family vacations cancelled, and buses and planes decommissioned because of public fear about Ebola and the risks it poses.

The sad thing is this much of irrational fear is driven by xenophobia and racism. Since the Ebola outbreak began, over 4,500 people have died in West Africa. However, the mainstream Western media only began to report on the epidemic once an American doctor became infected. The level of care and treatment offered to infected patients from the US and Spain – including access to experimental drugs and vaccines – is also far greater what is provided to patients in affected countries.

Finally, African immigrants to the US are being increasingly ostracized and stigmatized, even if they come from countries unaffected by Ebola. Their kids are being denied admission to school, their parents denied service at restaurants, and their friends potentially denied entry to this country.

Many US politicians, mostly conservative lawmakers but also some progressive policymakers facing tough reelection campaigns, have called for a travel ban to affected countries in West Africa. This is despite statements from the World Health Organization, Red Cross and CDC that such a travel ban will be ineffective. This is also rather disproportionate compared with lawmakers’ reactions to past outbreaks of mad cow disease in England, SARS in Canada and bird flu in China. No travel bans were proposed in those situations.

Rather than fear West Africans, now is the time to embrace them. We could learn a lot from them. Consider the recent piece by Helene Cooper, a New York Times correspondent and native of Liberia. In that country, where over 2,000 people have died, few families have been left untouched by Ebola. At great personal risk, Liberians have banded together to fight the disease rather than isolating and ostracizing those who are sick. Unlike the average American, they are responding not with fear and loathing but with compassion and love. It’s time for us to do the same.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on October 22, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Let Harrison Bergeron Dance

by Patricia Mayer, MD, Bioethics Program Alumna (2009)

All I can think of when reading the case of Indian sprinter Dutee Chand is Harrison Bergeron, protagonist of a 1961 short story by author Kurt Vonnegut.

For those of you who don’t know who Dutee Chand is, she is a Indian sprinter who was banned from the 2014 Commonwealth Games because her testosterone level was “too high”. Unlike other athletes who use banned substances to achieve this, Ms. Chand’s testosterone levels were not artificially elevated. She was not “doping” by taking testosterone supplements, and there are no accusations of her “not being a woman”. She simply produces high levels of testosterone naturally.

Although testosterone is known as the male sex hormone. It plays a key role in male reproductive development, as well as such secondary sexual characteristics such as increased muscle and bone mass. But testosterone is present in all persons, both men and women. Men generally have higher levels than women, but levels can vary between individuals of both sexes. Some men have low levels and some women have high levels, and vice versa. In some cases in which men and women also have “abnormal” levels, it can be the result of genetic factors or other medical conditions. In Dutee’s case, she is reported to have hyperandrogenism.

The International Association of Athletics Federations (IAAF) prevented Ms. Chand from competing in the 2014 Commonwealth Games because it felt that her naturally elevated levels of testosterone gave her an unfair advantage over the other female athletes. But the link between testosterone level and athletic prowess is tenuous at best. There is no evidence that women with high testosterone are better athletes than women with lower levels. Many factors go into athletic success including training, drive, and determination, to name but a few. Still, the IAAF has set a testosterone level of 10 nmol/liter as the upper level at which they will allow women to compete in professional competitions.

So what if a woman like Dutee’s testosterone level are naturally higher? Should they be required to do something to lower it below 10 nmol/liter in order to compete? Will otherwise health women be forced to undergo surgery, use drugs or take hormonal suppressants in order to “level the playing field”?

The fact of the matter is that athletic playing field has never been level. It can’t be. There are, for example, genetic differences that make some people outstanding in one sport or another. Michael Phelps is said to have a “body made for swimming glory”. Usain Bolts’ height and high percentage of fast twitch fibres drive his speed in the track. Gabby Douglas’s diminutive stature contribute to her prowess in gymnastics. Shall we alter Phelps physique? Remove some of Bolt’s fast twitch muscles? Administer growth hormone to make Gabby taller? All these interventions would potentially “level the playing field,” but all are crazy.

Which brings me back to Harrison Bergeron. Kurt Vonnegut’s famous short story begins:

THE YEAR WAS 2081, and everybody was finally equal. They weren’t only equal before God and the law. They were equal every which way. Nobody was smarter than anybody else. Nobody was better looking than anybody else. Nobody was stronger or quicker than anybody else. All this equality was due to the 211th, 212th, and 213th Amendments to the Constitution, and to the unceasing vigilance of agents of the United States Handicapper General.

Each person in that society was required to wear handicapping contraptions to offset natural traits that might make him, in some way, “better than” somebody else.

Harrison Bergeron…is a genius and an athlete, is under-handicapped… scrap metal was hung all over him… Harrison looked like a walking junkyard. In the race of life, Harrison carried three hundred pounds.

And in case you’ve not read the story or have forgotten the ending, let me recap: Harrison throws off his handicaps and dances … until he is shot dead by the Handicapper General.

Let Harrison dance. And let Dutee run.

[The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

 

Fever Pitch

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

Public concern about Ebola reached a fever pitch this past week, no pun intended, following the revelation that a patient in Dallas was infected with this deadly virus.

Returning from a recent trip to Liberia, where thousands of people have died from Ebola since the epidemic began last December, Thomas Eric Duncan (who died shortly after this commentary was recorded for NPR) developed symptoms shortly after arriving in the United States. Public health officials in Texas are now tracking and quarantining the 38 people who had contact with Mr. Duncan after he became ill.

US health professionals and immigration officers have admittedly been slow to react to the Ebola crisis. When Mr. Duncan first started feeling sick, for example, doctors at the Texas hospital where he was first seen failed to recognize the disease. They instead sent him home with antibiotics for what they believed was a common respiratory infection, unwittingly exposing more people to the deadly virus. This so concerned officials with the New York City Department of Health and Mental Hygiene that they are now sending actors faking symptoms of Ebola into emergency rooms in order to test local preparedness.

More worrisome is the fact that US Customs and Border Protection agents seem uninformed about the risks and warning signs of Ebola infection. Several journalists covering the Ebola outbreak in West Africa have reported that immigration officials have failed to screen air passengers arriving from afflicted areas for the disease, even when prompted with that knowledge.

All those concerns and considerations aside, the truth of the matter is that we are unlikely to experience a full-blown outbreak of Ebola here in the United States, regardless of what the current media frenzy around Mr. Duncan and other cases suggests.

The main reason is this: Ebola, although deadly, is not particularly infectious. Transmission occurs when people are exposed to the bodily fluids (blood, feces or saliva) of an infected and symptomatic patient. This is why health care workers and others caring for afflicted patients are most at risk, and why the rest of us are relatively safe.

This also explains why the epidemic has taken hold in West Africa, a region of the world where the existing public health infrastructure is weak, sanitation systems are crumbling, and cultural traditions around dying require family members to express love for the deceased by touching or hugging the dead body. That is very different from the situation in the US.

The Ebola epidemic raises a lot of interesting policy issues and ethical challenges: if and when to quarantine travelers coming from afflicted areas, how to respond to possible cases of infection in the clinic and in the community, what are the obligations of doctors and nurses to care for those who with Ebola, and when to provide experimental and untested treatments to those who are sick. Except for those with relatives in West Africa, however, most of us who live in the United States shouldn’t be overly concerned about this disease.

Despite this, millions of Americans are taking to social media sites like Facebook and Twitter to express concern (and even outrage) over how local, state and federal agencies have dealt with the Ebola crisis. Many of these individuals are the same ones who fail to vaccinate their kids against measles, whooping cough or the mumps. Others fail to get a yearly flu shot. But these are the diseases that should terrify us.

Take influenza, for example. It is far more contagious than Ebola, being spread through respiratory droplets or contaminated objects like door handles and telephone receivers. People infected with the flu can also spread it to others even if they do not show signs of illness. This disease will kill nearly 50,000 people in the United States this winter, compared with 3,000 people who have died in the current Ebola outbreak. Despite this, less than half of all Americans will be vaccinated against influenza in the coming year.

Rates of childhood immunization have also declined markedly as parents (particularly more progressive and affluent parents) have become increasingly skeptical of the safety and value of vaccines against polio, measles and whooping cough. As a result, we are seeing a resurgence of these otherwise preventable (and potentially deadly) infectious diseases.

This is the great irony of the situation. Americans are up in arms about the unlikely possibility that there will be a mass outbreak of Ebola on US soil, but are apathetic about the real public health threats that they face.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on October 9, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

The FDA Flexes Its Muscles on Testosterone

by Karen Solomon, Bioethics Program Student

In 2002, Solvay Pharmaceuticals developed a new marketing strategy that characterized the natural decline in testosterone production associated with normal male aging as a medical problem, termed low-T. The ultimate objective was to encourage physicians to prescribe testosterone to otherwise healthy patients to combat the effects of normal male aging, such as low energy and libido.

This marketing strategy worked. In the last decade, testosterone use in men has increased by over 300%. Over 2 million men are now being treated with testosterone in the US, earning pharmaceutical companies a great deal of money. In 2012, US testosterone sales hit $2 billion, up from a “mere $324 million” in 2002. Although the US leads the world with testosterone prescribing, a significant and steady increase in testosterone use has been seen across the globe.

However, safety concerns over testosterone use by otherwise healthy men are mounting. One observational study revealed that within three months of starting testosterone, heart attacks doubled in men over 65, and in younger men with heart disease. Another study found that among older men with low testosterone undergoing coronary angiography, many with heart disease, there was a 30% increase of “stroke, heart attack, and death” among those being treated with testosterone.

Earlier this year the FDA took notice, asking an Advisory Committee to provide recommendations on licensing and use of testosterone as an anti-aging panacea. That committee has since recommended that the Agency place additional restrictions on the ability of pharmaceutical companies to promote testosterone for low-T. The panel also recommended that researchers conduct additional clinical trials designed to better understand the frequency and severity of side effects associated with testosterone use.

It is encouraging to see an FDA Advisory Panel argue for greater caution with the use of prescription drugs in otherwise healthy individuals. As demonstrated with testosterone, FDA drug approval does not mean that all potential safety issues had been vetted. When drugs are prescribed with larger and more diverse populations than those studied in clinical trials, new safety concerns can arise. Once physician prescribing habits become established for off-label uses, drug manufacturers may not have an incentive to pursue additional studies to demonstrate whether such use is effective or safe.

Hopefully this will change. Until recently, manufacturers profited from increased sales while questions about whether off-label use was safe or effective were left unanswered.

In 2007, however, the FDA was given new authority under the Food and Drug Administration Amendments Acts (FDAAA), to require manufacturers to conduct post-marketing studies, as new safety information becomes available. The FDA now has the option to flex new regulatory muscles, as they have done with testosterone manufacturers, instead of negotiating for voluntary action with little promise of an end game. This can only be a win for patients.

[The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]