Understanding the Latino Patient with Cancer

by Beatriz Lorena Hurtado, Bioethics Program Alumna (MSBioethics 2014)

As a Latina working in healthcare I have always felt the responsibility to provide education about my culture, and to clarify cultural differences and misconceptions. It is always surprising to witness how eliminating misconceptions eventually translates into an increase in patient satisfaction, and less apprehension about cultural differences from the healthcare team. This is one of the reasons why, in my view, education on Cultural Competence in healthcare is probably the most appropriate way to avoid generalizations and achieve equality in healthcare.

Latinos currently constitute seventeen percent (17%) of the nation’s population, making them the largest racial and ethnic minority in the US. They are also amongst the fastest growing minorities the United States. Should current demographic trends continue, it is estimated there will be 41 million Latinos in the United States by 2020.

These numbers should not only indicate the rising presence of Latinos in the United States, but also highlight the need for developing pathways to improve language and cultural services in the healthcare arena.

This need is particularly in oncology: as the American Cancer Society notes, cancer is the second leading cause of death for Latinos. It is also important to add that the most common cancer diagnosis in Latino women is breast cancer, while prostate cancer is the most common diagnosis in Latino men (with colon, lung, melanoma, stomach, and liver cancer following closely behind).Therefore, as it happens with any chronic disease, the medical visits are usually recurrent and the treatments involve an extensive group of healthcare professionals.

As a Latina I believe there are three important characteristics of Latino cultural expressions, meanings, and value systems that warrant specific attention:

First, family is the foundation that supports life for Latinos in general. Medical decisions are in most cases a family affair. The presence of family signifies emotional support, empathy, and togetherness, and is always favored in a difficult medical situation. Moreover, if facing a difficult moment or vulnerability, like a cancer diagnosis, family support is at the top of the list of necessities of the Latino patient. Latinos place much of their identity and self-worth into the family structure and customs.

Although it is recognized that the Latin American family has undergone changes in its structure in recent decades, it is important to note that these changes haven’t shifted the sense of group, affective value, and financial support in the immigrant family. Latinos are gregarious, often moving in culturally-defined groups. They also identify themselves within their group and by the role they play in it. Failing to recognize the place family has in medical decisions for Latino patients could be viewed as a lack of acknowledgement of who they are as persons, and their position in the micro universe that is their family life.

Second, in the Latino culture, talking about death is commonly viewed as summoning it. Acknowledging death can be seen as giving up hope, limiting a patient’s chances of surviving and a threat to their recovery. This has obvious implications for conversations about death, end-of-life issues, living wills and advance directives. Also, because of the substantial Catholic background and deep religious roots, most Latinos believe that talking about the possibility of a negative outcome is an expression of limited faith in God. It can symbolize doubt on God’s abilities to heal the sick.

Third, even though Latinos share many characteristics, they are also a very diverse group. They are united in their diversity. For instance, a Latino patient from South America may have a specific cultural response towards the healthcare team (e.g., a more entitled behavior) that may be very different from the cultural response of a Latino patient from Central America (e.g. a more humble and unassuming attitude).

Despite all the similarities that unite Latinos (language, religion, family union, etc.), there are several particular cultural conventions that vary depending on the country from where the person comes. Identifying that the patient may speak Spanish or may come from Latin America represents merely the basic steps in beginning a successful communication, but it does not contribute significantly towards building a strong a fruitful rapport with a Latino patient. To achieve this, establishing a conversation free of narrowly defined cultural assumptions is crucial. Even though Latinos share many characteristics, like the general value placed on family and the inclination to avoid discussions of death, there is a rich diversity of Latino cultures and healthcare providers must make it a point to avoid generalizations.

In the context of the Latino culture, to achieve a culturally competent treatment is to understand their culture and demonstrate respect for their differentiating traits while they are in treatment. This means providing care that recognizes and caters to those cultural differences. By acknowledging their gregarious behavior towards family and group, by attributing their reluctance to plan for the worse to their unceasing hope in their interpretation of death and dying, and by respecting the differences among these common traits, the healthcare team can provide culturally competent care. In turn, this will help the patient feel acknowledged and less intimidated by the medical environment, resulting in a more effective relationship, better care, and better outcomes.

[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.]

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When Doctors Discriminate

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

Most of you have probably never heard of Jami and Krista Contreras, a Michigan couple and the proud parents of a six-month-old girl named Bay. Shortly after Bay was born, the Contrerases began interviewing pediatricians, looking for one who practiced holistic medicine.

After meeting with nearly a dozen doctors, the newly married couple finally settled on Dr. Vesna Roi, a pediatrician in private practice with nearly 19 years of experience caring for children like Bay. On the morning of their first appointment, however, Dr. Roi refused to see them. The reason: the Contrerases are a same-sex couple.

In a handwritten letter delivered to Jami and Krista by another doctor at the pediatric clinic, Dr. Roi apologized but stated that, “after much prayer following your prenatal [visit], I felt that I would not be able to develop the personal patient doctor relationship that I normally do with my patients.” Dr. Roi’s religious faith, it seems, makes her uncomfortable around lesbian couples.

I actually have some sympathy for Dr. Roi. She clearly felt that she could not give the Contrerases, or their daughter Bay, the level of care that they deserved. In fact, a strong doctor-patient relationship is the key to quality health care. If Dr. Roi felt uncomfortable around Jami and Krista, or felt uncomfortable in asking them questions about those aspects of their personal lives that could affect the health of their daughter, she might overlook pieces of information that were important for Bay’s preventative care or therapeutic treatment. The Contrerases might also pick up (consciously or subconsciously) on Dr. Roi’s unease, and be less than forthcoming about their concerns or opinions. Given this, Dr. Roi was not the right pediatrician for Bay.

Vesna Roi also had the right to refuse the Contrerases as patients. For the most part, doctors are legally bound to treat patients only once they have entered into a care relationship. Even then the doctor can terminate the physician-patient relationship under certain circumstances (if, for example, a patient is non-compliant with treatment, the patient is abusive to providers, or the services sought are not covered by the patient’s health insurance). But the physician must provide a reason for terminating the relationship and must ensure continuity of care.

Ethically, Dr. Roi is on shakier ground. If she felt that she could not establish the necessary doctor-patient relationship with the Contrerases, she probably shouldn’t take them on as patients. But Dr. Roi should have been upfront with the Contrerases sooner, rather than waiting until the morning of Bay’s first pediatric appointment to inform them of her reluctance.

Moreover, while the American Medical Association (AMA) and other professional organizations recognize the right of clinicians to refuse to provide specific treatments if they are incompatible with a doctor’s personal, religious or moral beliefs, it’s hard to see how such “conscience clauses” apply in this case. Conscience clauses are meant to apply to specific medical procedures, most notably abortion and sterilization, rather than to specific classes of patients. If we allow a physician like Dr. Roi to reject patients on the basis of sexual orientation (whatever her personal, religious or moral reason), should we also allow a doctor to turn away patients who are Black or Latino? To turn away patients who are Muslim, Jewish or Atheist? To turn away patients who are women?

Of course we would never allow this. It is morally reprehensible. This is why the AMA, the American Academy of Pediatrics and other professional organizations that respect the conscience of physicians also make it clear that doctors should not refuse care based on race, gender or sexual orientation.

It would also be illegal to refuse a patient based on race, religion or gender under the federal Civil Rights Act of 1964. Sadly, this is not the case for sexual orientation or gender identity. Lesbian, gay, bisexual or transgender (LGBT) individuals are not protected by the Civil Rights Act, but rather by a patchwork of state laws and local anti-discrimination ordinances.

Only twenty-two states have laws that prohibit discrimination based on sexual orientation in “public accommodation” (e.g. businesses that serve the public, including pediatric clinics like Dr. Roi’s). Only fourteen states extend those same protections to gender identity. Michigan is not one of those states, so that what Dr. Roi did is morally questionable but it is not legally actionable. Had she lived here in New York, she could have been sued (unless one of the Contrerases had been transgendered, since the Empire State still allows discrimination based on gender identity).

We need these laws, both at the state and the federal level. Sure, people like Dr. Roi may be uncomfortable in dealing with lesbian patients or gay clients. But that’s not a reason to legally allow or publicly condone discrimination based on sexual orientation or gender identity.

The same arguments were used for years to justify discrimination against women, Black and Jews, until the Civil Rights Act forced people to challenge their biases and question their assumptions. It’s time to do the same for the LGBT community.

As I said before, Dr. Roi was not the right pediatrician for Bay. But she could be, once she learns to look beyond her personal prejudices and see the Contrerases for who they are: human beings with the same needs, fears, and hopes as her. But it might take a legal nudge to get Dr. Roi and others like her to take that first step.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on February 26, 2015, 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.]

(Golden) Global Change and LGBT Rights

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

I make it a tradition to watch televised awards shows like the Oscars, Emmys, and Grammys. This is not because I particularly care about the entertainment industry, but primarily because I enjoy providing a running commentary of snarky comments about the various nominee’s clothes, styling and speeches on Facebook and other social media outlets.

Obviously, then, I watched the Golden Globe awards ceremony this past Sunday. Awarded annually by the Hollywood Foreign Press Association, the Golden Globes honor excellence in both television and film, and are often seen as a precursor to (and predictor of) the Emmys and the Oscars.

I usually don’t pay much attention to the actual awards themselves, but I was pleasantly surprised when this year’s ceremony became (in part) a celebration of the lesbian, gay, bisexual and transgender (LGBT) community. For example, the television drama The Normal Heart, adapted from the Larry Kramer play of the same name, received three nominations, including a nod for Best Miniseries or Television Film. Openly gay actor Matt Bomer won for his supporting role in that film, which depicts the early days of the HIV/AIDS epidemic in New York City.

More importantly, the television series TransParent, which follows the lives of a Los Angeles family after the patriarch comes out a transgendered, won Best TV Comedy. Jeffrey Tambor also won Best Actor for his role as Maura Pfefferman, a retired professor of political science who begins to transition from male to female.

In his acceptance speech, Mr. Tambor dedicated his remarks to the transgender community, saying: “Thank you for your courage, thank you for your inspiration, thank you for your patience and thank you for letting us be a part of the change.” This was quite an improvement from last year’s ceremony, when both Michael Douglas and Jared Leto managed to offend the entire LGBT community with speeches that mocked the very characters they were honored for playing: a gay man and a transgender woman, respectively.

Given this, I can’t really blame the Hollywood press for crowing that this year’s Golden Globes were “a watershed moment” for LGBT rights. In fact, it has been a watershed year for the LGBT community.

With the recent federal court rulings in Florida and South Dakota, for example, the number of states in which same-sex couples are able to marry has more than doubled. Over 70% of Americans now live in a marriage equality state. New state laws and local ordinances have also been passed that recognize the rights and dignity of LGBT people, including legislation that makes it easier for transgender people born in New York City to correct their birth certificates.

But it far too early, as many in the press have done, to suggest that the fight for LGBT equality is complete. Golden Globe co-host Tina Fey joked that the movie Selma, nominated for Best Motion Picture, is “about the civil rights movement, which totally worked and now everything’s fine.” She could have made the same joke about TransParent, The Normal Heart, and LGBT rights.

Anti-LGBT organizations like the Family Research Council, Focus on the Family, and the National Organization for Marriage are continuing their efforts to prevent or repeal legislation that protect all people regardless of sex, race, ethnicity, sexual orientation, or gender identity. They are often successful in their efforts, as seen by the recent vote by the residents of Fayetteville, Arkansas, to repeal an anti-discrimination ordinance.

Various state representatives and federal legislators are also supporting so-called ‘religious liberty’ bills, which would allow public businesses to refuse goods and services to LGBT individuals. Republicans in the US House of Representatives continue to block a vote on the Employment Non-Discrimination Act, which would prohibit employers from discriminating against workers on the basis of sexual orientation or gender identity.

Pervasive stigmatization and marginalization of the LGBT community continues, even in Hollywood. The cable network TLC, once known as The Learning Channel but now home to highbrow shows like Here Comes Honey Boo Boo, recently debuted a series called My Husband’s Not Gay. This reality series follows the lives of several men who admit they are sexually attracted to other men but who refuse to identify as gay or bisexual. Most of these men are married to women, despite their sexual orientation, presenting the idea that suppressing same-sex attraction is somehow healthy or achievable. Such shows do little but support outdated stereotypes that sexual orientation or gender identity is a choice, and that LGBT individuals can be “cured” through reparative therapy.

Small wonder then that hate crimes and violence against LGBT individuals is still common. In fact, it is on the rise. It should also come as no surprise that a significant percentage of LGBT individuals attempt to take their own lives. Many are successful in this attempt, including Leelah Alcorn, a transgendered Ohio teenager who threw herself in front of a tractor-trailer last week. In her suicide note she wrote, “Please don’t be sad, it’s for the better. The life I would’ve lived isn’t worth living in … because I’m transgender.” But Leelah was wrong. Her life was worth living in.

Despite increasing visibility and recent accolades, there is still a long way to go before the LGBT community achieves equality, regardless of what recent headlines in the Hollywood press might lead you to believe. We owe it to Leelah and others like her.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 15, 2015, 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.]

Protecting Transgender Students

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

Two nights ago, the Shenendehowa Board of Education voted 4 to 2 in favor of a new policy designed to protect the rights and safety of transgender students. High school students in the district will now be allowed to use bathrooms and locker rooms that correspond to their gender identity. The new policy also allows all students, regardless of sex or gender, to access single-user bathrooms and private changing areas.

Located just north of Albany, New York, Shenendehowa Central School District is now one of but a few districts nationwide that provide recognition and support to transgendered youth. Only California has passed a statewide law that allows transgender students to use bathroom and locker facilities that match their gender identities. While the New York City Board of Education released new guidelines in support of transgender students earlier this year – including a recommendation that students never be made to use a locker room or restroom that conflicts with their gender identity – these are only suggestions and not binding policies. Sadly, the New York State Board of Education has been largely silent on this issue.

The US Federal government has also been relatively quiet on the topic of transgendered youth. The US Department of Education’s Office for Civil Rights has stated that Title IX of the Education Amendments of 1972, which protects students from sex discrimination, also applies to transgender students. This allows transgendered students to file legal action in federal court should local authorities fail to protect them from discrimination and violence while at school. But the US Department of Education failed to provide specific examples of Title IX-prohibited discrimination or provide school districts with clear guidance on how to create trans-inclusive policies. Finally, the Obama Administration has been reluctant to push Congress to pass legislation that will protect transgendered youth, such as the Safe Schools Improvement Act and the Student Non-Discrimination Act.

Such laws and policies are desperately needed. Lesbian, gay, bisexual and transgendered (LGBT) youth are at increased risk of bullying, physical violence and sexual assault at school. In 2011, for instance, a survey conducted by the Gay, Lesbian & Straight Education Network (GLSEN) found more than half of LGBT youth report being harassed at school. For transgendered students in particular, however, the problem is much much worse.

The National Transgender Discrimination Survey, a study of over 6,000 people, found that transgender and gender-nonconforming students experienced very high rates of harassment (78 percent), physical violence (35 percent) and sexual assault (12 percent). Alarmingly, a third of this harassment and violence occurred at the hands of teachers, staff and school officials themselves. It should come as no surprise, therefore, that many transgendered students drop out of school. Still more report having suicidal thoughts, and a quarter have attempted to take their own lives.

This is a tragedy of considerable proportion, one that can only be addressed by implementing and enforcing policies that prohibit discrimination on the basis of gender identity. That is what makes the recent vote by the Shenendehowa Board of Education so groundbreaking. But it is also what makes the acrimonious nature of the debate over this policy so disheartening.

When local news stations posted the story on their websites and Facebook pages, for example, a majority of the comments submitted online were in opposition to Shenendehowa’s new policy. Many people posted comments that made it clear that they did not understand the new policy. Others made rude statements that were based on ill-informed stereotypes of transgendered kids: that they are confused, that they need to see psychiatrists, that they should use the staff bathrooms, or that they are sexual predators who are only interested in seeing other children naked.

I’m chalking up most of the opposition to fear, ignorance and campaigns that falsely claim that students and staff will exploit these policies to use opposite-sex restrooms in order to sexually harass and assault other children. When California’s legislature was debating the School Success and Opportunity Act, which gave transgender students the same rights and protections covered by Shenendehowa’s new policy, the conservative Pacific Justice Institute invented a now discredited story about a transgender student harassing her peers in a Colorado school restroom. Similarly, when the town of Fayetteville, Arkansas was considering a law that prohibit discrimination on the basis of gender identity, reality TV star Michelle Duggar falsely claimed that the law would allow men “with past child predator convictions to claim they are female [and] use womens’ and girls’ restrooms, locker rooms and showers.“

Nothing could be further from the truth. Consider what is happening in California. In the year since they passed the School Success and Opportunity Act, not a single school district in that state has reported an instance of inappropriate behavior, harassment or physical assault stemming from the new law. The experience of the Shenendehowa Central School District is likely to be the same.

Kudos to the Shenendehowa Board of Education for standing up for the rights of transgendered kids. Now if the rest of the school districts in the US could do the same.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on December 4, 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.]

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.]

The Boys in the Ban

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

For over 30 years now, the United States Food and Drug Administration (FDA) has banned blood donations from gay and bisexual men. It is a lifetime ban. Currently, no man who has ever had sex with another man can donate blood in the US.

The same is true for tissue donations. Just last year, for example, the FDA refused to accept for donation the eyes of an Iowan teen after learning that the boy was gay. When 16-year-old Alexander Betts committed suicide after months of bullying at the hands of classmates because of his sexual orientation, just a few months after he signed up as an organ donor, his family honored one of his last wishes by donating his organs and tissues. But while his heart, lungs, kidneys and liver were used to save the lives of six other people, the donation of his eyes was rejected because “tissue from gay men carries an increased risk of sexually transmitted diseases, including HIV/AIDS.”

The ban on blood and tissue donation from gay men was put in place in 1983, shortly after HIV, the virus that causes AIDS, was first isolated. It made sense at that time. Along with other socially or economically marginalized groups like injection drug users and commercial sex workers, during the early years of the AIDS epidemic gay men were — and still are — at increased risk of acquiring HIV. Banning donations from groups who were more likely to be infected with the virus, particularly when there were no effective treatments, was a logical step to protect the blood supply from contamination with HIV.

This was in part because the first tests to detect the virus in the blood of infected individuals were notoriously inefficient. In fact, these first tests didn’t — and many modern HIV tests still don’t — test for the presence of the virus itself. Rather, they test for the presence of antibodies to HIV.

Antibodies are proteins produced after the immune system encounters a foreign body like a virus, a bacterium or an allergen. They specifically recognize and bind to these pathogens, hopefully neutralizing them before they can infect a person and cause disease. Most vaccines are designed to trigger an antibody response to common infectious agents, such as those cause measles, chicken pox or hepatitis, in order to protect people exposed to those diseases.

Unfortunately, the antibodies produced by the human body against HIV are not protective. But they are a marker that a person has been exposed to HIV, and likely been infected. But an antibody response to HIV can take days or even weeks to develop after infection. So tests that look only for the presence of antibodies to HIV can miss those individuals who are recently infected. If these people give blood in the interval between when they were infected and when they develop an antibody response to HIV, testing their blood will suggest that it is clean even though it may contain live virus that can be spread to transfusion recipients.

But as a team of researchers as Harvard Law School point out in a recent article in the Journal of the American Medical Association, times have changed. HIV testing technologies have dramatically improved in the three decades since the virus was found. Modern antibody tests are much more sensitive, detecting anti-HIV antibodies much earlier in the infection process. We also have inexpensive and reliable tests that look for the presence of the virus itself. Used in combination, these tests can determine if a person has been infected within just a couple of days of exposure. They are a quick, cost-effective and largely infallible way to screen the US blood supply.

Given this, it seems rather unconscionable that the FDA continues to maintain a lifetime ban on blood donations from gay men. This is particularly true when you consider that other groups at high risk for HIV do not face a similar ban. For example, the ban on blood donations from men who have had unprotected sex with women who are known to be HIV-positive is only one year in duration, not life. The same is true for women who have had sex with an HIV-positive male partner. So it’s not the gender of the infected partner that matters, only their sexual orientation.

Moreover, in countries that have lifted the lifetime ban on donations from men who have sex with men, no concomitant increase in the incidence of transfusion-acquired HIV has been seen.

Finally, in 2010 an FDA advisory committee concluded that the lifetime ban keeps many low-risk men from donating to the nation’s blood supply. But despite this, the committee voted to keep the ban in place.

So why does the lifetime ban on blood donations by gay and bisexual men? It is sexual behavior not sexual orientation that determines whether or not an individual is at increased risk of HIV. A promiscuous heterosexual college student is a far greater risk than a gay man who has been in a long-term monogamous relationship.

Quite simply, the ban is purely discriminatory in nature. It does little more than perpetuate outdated and homophobic stereotypes. It also contributes to widespread stigmatization of sexual minorities, leading to the open hostility and institutionalized violence that lead young men like Alexander Betts to end their lives.

We can do better. It’s time to end the lifetime ban on blood and tissue donation by gay and bisexual men.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 28, 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.]

She Ain’t Heavy, She’s My Brother

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

Actress Laverne Cox made history last week when she was nominated for an Emmy for Outstanding Guest Actress for her role on the hit show “Orange is the New Black.” Ms. Cox is the first openly transgender actress to receive an Emmy nomination. While Hollywood has been increasingly open to portraying transgendered individuals in a positive light — such as Jarod Leto’s Oscar-winning turn last year a transgendered woman in the Dallas Buyers Club — even the progressive entertainment industry falls prey to the stereotype that transgendered people are just men or women in drag. That the Emmy’s nominating committee made a point to list Laverne Cox as an actress is a welcome change.

Even if she doesn’t win the Emmy, Ms. Cox’s nomination is a big victory for the transgendered community. Although great strides have made towards achieving social and legal equality for most members of the LGBT (lesbian-gay-bisexual-and-transgender) community, most transgendered Americans face blatant discrimination, open hostility, and institutionalized violence. Moreover, the LGBT community itself has generally overlooked the concerns of transgendered individuals.

Part of the problem is that the acronym LGBT is largely used to refer to a community of individuals who, are, in some way, attracted physically, romantically, spiritually or emotionally to members of the same sex. But many people fail to realize that the “T” in the acronym doesn’t relate to sexual attraction at all. Rather, it refers to a personal sense of gender.

Transgender is an umbrella term that is used to describe people whose gender identity, expression or behavior is different from those typically associated with their assigned sex at birth. But that term encompasses a large and diverse community. It includes gender-nonconforming who self-identify as male-to-female (transgender women), female-to-male (transgender men), those who consider themselves to be bigender, and those who fall elsewhere on the traditional gender spectrum, among others.

The actual number of transgendered individuals in the US is unknown. According to a recent survey on sexual orientation and health conducted by the Centers for Disease Control and Prevention, approximately 96% of Americans consider themselves heterosexual, 2% gay or lesbian, 1% bisexual, and 1% “something else.” But this doesn’t mean that 1 out of every 100 Americans is transgendered. The study asked only about sexual orientation, not gender identity.

Similarly, while the 2010 US Census was the first in history to report how many Americans lived in a same-sex partnership, questions about gender were strictly binary. The biological sex of each person was recorded, either as male or female, but no questions were asked about gender identity. Transgendered individuals had no way to express their transgendered status even if they wanted to. Many do not publicly acknowledge their transgender status, however, because of stigmatization and discrimination. The transgender community is thus largely invisible, which is why Laverne Cox’s Emmy nomination is all that more important.

Consider the importance of visibility the struggle of gay rights in this country. The Stonewall riots were a watershed moment for the gay rights movement precisely because they increased the public visibility of gay men and women. That visibility and the concomitant confidence of early gay activists helped to pave the way for others to come out and made many Americans realize that they had gay siblings, gay children, gay neighbors, gay friends and gay coworkers. It becomes hard to justify legal or social discrimination against a class of people like gay men and women when you realize that they are just another group within the mainstream culture.

Laverne Cox’s Emmy nomination is, I hope, a watershed moment for the transgendered community. By standing on the Emmy stage as a proud and successful transgendered woman, she provides a positive and public role model for closeted transgendered youth who live a life of fear, shame and marginalization. She has also used her newfound celebrity to focus people’s attention on the extreme levels of discrimination and violence faced by the transgender community. Without folks like Laverne leading this charge, for example, it would be hard to imagine politicians even proposing transgender-inclusive laws like those that would allow students to use bathroom facilities that are consistent with their gender identities rather than their biological sex.

This increased visibility does have its downsides, including the flood of vitriolic and rancorous attacks launched at Ms. Cox by right-wing pundits and the slew of anti-transgender laws that have been proposed by various local, state and national officials. But even those bigoted assaults raise the public profile of the transgender community, move discussions of transgender identity into the mainstream, and help pave a path towards increasing equality and acceptance.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 17, 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.]