Cheaper by the Dozen

As a bioethicist, I appreciate the fact that the American public has become deeply engaged in a number of important health policy debates.

For example, should local, state and national agencies forcibly quarantine travelers coming from countries affected by the Ebola virus? Should public and private companies be required to provide employees with health insurance plans that include oral contraceptives if doing so runs counter to the religious beliefs of the owners? Should terminally ill cancer patient Brittany Maynard have the right to end her own life (which she did this past Saturday)?

One interesting story that slipped under the radar, however, was the recent announcement that two major corporations, tech giant Apple and social networking service Facebook, will now pay for female employees who want to freeze their eggs. These companies will cover the costs of extracting, freezing and storing eggs, even when this is done for non-medical reasons. This is a pretty substantial benefit, as the extracting the eggs can cost $20,000 or more. Storage fees can run an additional $1,000 a year.

This should be up for public discussion and debate. Although many people may disagree with me, I believe that these two companies (and those that follow their example) are making a big mistake. That is not to say that I don’t think that companies like Apple and Facebook shouldn’t provide coverage for fertility-related treatments like egg freezing as part of a comprehensive health insurance plan. They should, but only for medically justified reasons.

The technical name for egg freezing is oocyte cryopreservation, and it is a physically invasive and potentially risky procedure. Women must first take a cocktail of drugs called gonadotropins to hyperstimulate egg production, tricking their ovaries into producing a dozen or more eggs rather than one or two ova that are normally released during the normal monthly fertility cycle. Doctors then insert a long needle through the vaginal wall and into the ovary, sucking out the eggs and preparing them for long term storage.

As you might imagine, this is an extremely uncomfortable procedure. Most women experience bloating and abdominal pain, but more severe side effects are not uncommon. Nearly half of all women will experience a condition known Ovarian Hyper Stimulation Syndrome (OHSS), which may require hospitalization to treat the bleeding and severe fluid buildup that results. Errant needles can cause injury to the bladder, bowel and kidneys. Finally, the ovaries can develop scar tissue at the site of puncture or the drugs used for hyperstimulation can trigger early onset of menopause, resulting in infertility in both cases.

Moreover, while new techniques for freezing and storing eggs have improved to the point where over 90% of all cryopreserved oocytes survive the freeze-thaw process, far fewer of those eggs will lead to a successful birth via in vitro fertilization (IVF). According to the Society for Assisted Reproductive Technology, for instance, the rate of live birth among women aged 30 who used cryopreserved eggs for IVF is less than 25%. That rate drops to less than 10% for women over 40.

These concerns – safety, efficacy, and potential physical risks — are why professional organizations like American College of Obstetricians and Gynecologists (ACOG) and the American Society for Reproductive Medicine (ASRM) only support the use of egg freezing when medically necessary. Egg freezing should be done only as a last resort to protect fertility in women undergoing ovary-destroying cancer treatment, for example, rather than as a way to delay childbearing as a matter of choice.

Unfortunately, the latter is exactly what companies like Apple and Facebook are promoting. Covering the costs of oocyte cryopreservation for non-medical reasons reinforces the idea that professional women must choose between having a fulfilling career and raising a family. Moreover, even if a woman successfully delays childbirth by freezing her eggs, she has only delayed the inevitable. She must still confront a corporate culture that sees mothers as an economic liability.

If companies like Apple and Facebook truly want to support their female employees, they don’t need to pay for egg freezing. What they need to do is provide both female and male employees with the services and benefits necessary for meaningful work-life balance, including paid leave for new biological and adoptive parents, family sick leave, and subsidized daycare and preschool programs. Better yet, they should use their wealth and political connections to lobby our leaders in Washington to make such benefits the law of the land.

Until then, we’re still leaving most working women (and many working men) out in the cold.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on November 6, 2014, and is available on the WAMC website.]

Posted in Prenatal, Reproductive Rights, Women | Leave a comment

Fear and Loathing in Liberia

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.]

Posted in disadvantaged, Discrimination, Education, Health Care, health literacy, Human RIghts, Media, Policy, Politics, Public Health | Leave a comment

Fever Pitch

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.]

Posted in Health Care, Influenza, Media, Policy, Public Health | Leave a comment

Tackling the Problem of Domestic Violence

The National Football League is in for a rough season, both on and off the field. In the past month, for example, America’s most popular sport has been rocked by allegations that league officials and team owners willfully ignored evidence that the Baltimore Raven’s star running back Ray Rice beat his then-fiancée unconscious in an Atlantic City elevator.

All-pro defensive end Greg Hardy of the Carolina Panthers and defensive lineman Ray McDonald of the San Francisco 49ers face similar allegations. Most recently, Minnesota Vikings’ Adrian Peterson was charged with criminal child abuse after whipping his four-year-old son with a wooden switch and a leather belt.

In response, beleaguered NFL Commissioner Roger Goodell promised to overhaul the organization’s policies on personal conduct, making it easier to penalize players harshly for egregious off-field behaviors, including domestic violence and child abuse. Commissioner Goodell also introduced a new initiative that would require all players and league staff to participate in regular educational programs on domestic violence and sexual abuse.

Unfortunately for Mr. Goodell, much of this is “too little, too late.” A growing number of women’s organizations and domestic violence advocacy groups are calling for his resignation. A number of commercial sponsors are also distancing themselves from the NFL, which makes Roger’s continued tenure as NFL Commissioner increasingly unlikely.

A number of pundits have also weighed in, not just on the question of Mr. Goodell’s career prospects but also on whether or not the recent spate of domestic and child abuse causes is directly linked to misogynistic and violent culture of professional football. Some of these armchair quarterbacks have linked the so-called “epidemic” of domestic violence in the NFL to increasing awareness of the physical and mental toll that football takes on professional (and even amateur) athletes.

Many players, for example, use anabolic steroids illicitly in order to get a competitive boost. It is well known that abuse of these drugs can lead to uncontrolled aggression and violent behavior (colloquially called ‘roid rage’).

Similarly, head injuries – particularly concussions – are also a common occurrence in high-speed contact sports like football. Players with a history of repeated concussive head injuries are at increased risk of developing a progressive neurodegenerative disease known as chronic traumatic encephalopathy (CTE), symptoms of which include mood and behavioral changes, dementia, tremors, impaired speech, and deafness. Actuarial experts hired by the NFL itself now estimate that as many as one-in-three professional football player will develop CTE or other long-term cognitive problems in their lifetime.

But it is important to remember that correlation is not causation. For instance, there is no definitive link between CTE and domestic violence in the NFL or other sports leagues. More importantly, despite the current spotlight on Ray Rice and Adrian Peterson, there is no link between professional football and domestic violence.

This is not to say that domestic violence is not a big problem in the NFL. Since 2000, nearly 100 players have been arrested or changed with domestic violence or child abuse. But this rate is actually slightly less than the US national average.

So despite what most Americans think, the NFL is not suffering from a “widespread epidemic of domestic violence”. Rather, it is the country overall that is in the midst of an outbreak.

At some point in their life, nearly a quarter of all women and 8% of all men will be the victim of a physical or sexual assault by a romantic partner or personal acquaintance. Many more will be the victim of more insidious forms of violence, including verbal, emotional and psychological abuse. Rates of abuse are particularly high among racial, ethnic and sexual minorities.

Similarly, over 10% of children will be abused or neglected by the time they are 18 years old. Over 6% will be raped or sexually assaulted by a family member. An estimated 1,500 children in the US die annually as a result of abuse or neglect.

This is the real tragedy, and the one that we need to address. In many ways, the spotlight on the NFL may do just that. In the past couple of weeks we’ve seen an increase in public discussion and debate about the problem of domestic violence. Victims of abuse – including celebrities like Meredith Vieira and Sarah Hyland – have also gone public with their stories on television, in the press, and via Twitter chats using the hash tags #WhyIStayed and #WhyILeft.

But increasing public awareness and discussion of the problem is just the start. We also need to reform relevant local and state laws to make the perpetrators of domestic violence or child abuse more accountable for their crimes. In many states, for example, a man can go to jail for up to five years for abusing his dog, but spend less than a month in jail for beating his wife, girlfriend or daughter. Existing abuse laws also often lack protections for gay, lesbian or transgendered individuals, even though these groups are at higher risk for physical abuse or sexual assault.

The epidemic of domestic violence and child abuse in the US will not end until the nation as a whole tackles this rampant problem head on.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on September 25, 2014, and is available on the WAMC website.]

Posted in Athletics, Celebrities, Crime, Domestic Violence | Leave a comment

Extending the Zadroga Act

Thirteen years ago today, Americans watched in horror as planes hijacked by Al Qaeda-backed terrorists slammed into the World Trade Center, the Pentagon and a vacant field outside of Shanksville, Pennsylvania.

Many of us lost friends and family. Nearly 3,000 people were killed that day, including 2,753 who died when the World Trade Center’s Twin Towers fell. The actual death toll associated with 9/11, however, is much higher.

When the Towers fell, they released a cloud of pulverized cement, shards of glass, asbestos, mercury, lead, PCBs, and other carcinogenic and poisonous materials into the air. That cloud lingered for months, with hundreds of rescue workers, thousands of construction workers and millions of New York City residents breathing in a witches’ brew of cancer-causing chemicals.

Rates of asthma, obstructive pulmonary disease and other respiratory illnesses are sky high among those who were exposed to the foul air or toxic dust that lingered over Lower Manhattan in the days and weeks the followed 9/11. A study of police who responded to the terror attacks found that more half have diminished lung function and chronic shortness of breath.

Rates of prostate cancer, thyroid cancer, and multiple myeloma are also elevated; one study looking at nearly 10,000 firefighters found that those who were at the World Trade Center were 20% more likely to develop cancer than those who were not there. Over 2,900 people who worked or lived near the World Trade Center on 9/11 have been diagnosed with cancer, including nearly 900 fire fighters and 600 police. Many of these cancers are likely associated with exposure to chemicals in the air and debris at Ground Zero.

Under the James Zadroga 9/11 Health and Compensation Act, passed by Congress in 2010 after a prolonged partisan fight, first responders, recovery workers, and survivors of the terror attacks can seek free testing and treatment for 9/11-related illnesses. Nearly 50,000 people are currently being monitored and over 30,000 are receiving medical treatment or compensation for illnesses and injuries associated with the World Trade Center’s collapse.

These numbers are expected to rise in the coming years. The incidence of cancer and chronic respiratory illnesses continues to increase at an alarming rate among survivors and responders of the terror attacks. At the same time, two of the key programs created by the Zadroga Act are due to expire. Unless Congress extends the Act, the World Trade Center Health Program, which provides free screening and treatment for 9/11-related illnesses, will end in October 2015. The September 11th Victim Compensation Fund, which provides financial support to the victims of 9/11 and their families, will close in October 2016. Desperately needed medical care and social services will be cut off for thousands of sick patients whose only crime was to survive the attacks or to provide care and aid for those who did.

A bipartisan group of New York politicians – including New York City Mayor Bill de Blasio, US Senator Kirsten Gillibrand, and US Representatives Peter King and Carolyn Maloney – want to prevent this. Just this week, they called upon Congress to extend the Zadroga Act for another 25 years. But they and other supporters of the Act face an uphill battle.

One of the key reasons that it took nearly 10 years to get this legislation passed in the first place is that many prominent (largely conservative) Congressmen opposed its passage, including Representatives Michele Bachmann and Paul Ryan. House Speaker John Boehner and Majority Whip Kevin McCarthy voted against it repeatedly. Senator Tom Coburn also filibustered its passage, arguing that the federal government simply cannot afford provide treatment and care for the victims of 9/11 in an era of record budget deficits. Should the deficit hawks of the Republican Party retain control of the House and recapture the Senate in the upcoming mid-term elections, the fate of the Zadroga Act is likely sealed.

The heroes and victims of 9/11 deserve better. I believe that we have a moral obligation to provide lifelong medical care and treatment for illnesses linked to the terror attacks. It is shameful that the same politicians who used these attacks to justify hundreds of billions of dollars in military expenditures are suddenly crying poor when asked to help the victims themselves. I urge you to call your Senator and Representative and urge them to support the Zadroga Act. More importantly, I urge you to use the power of the ballot box in the upcoming midterm elections to send a message to those who do not support an extension of the James Zadroga 9/11 Health and Compensation Act.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on September 11, 2014, and is available on the WAMC website.]

Posted in Health Care, Policy, Politics, Public Health | 1 Comment

The Boys in the Ban

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.]

Posted in Discrimination, FDA, HIV/AIDS, Homosexuality, Policy, Public Health | Leave a comment

Taking the Icy Plunge (Or Not)

There’s an epidemic that is sweeping this country. It’s not Ebola, despite all of the hype and misinformation about that disease that has dominated the news in the past two weeks. Rather, I’m talking about the ice bucket challenge.

Anyone who has watched television in the last couple of weeks has seen this: newscasters, celebrities and athletes like Matt Lauer, Martha Stewart and Nick Swisher being doused with a bucket of ice water in the name of charity. The goal of the ice bucket challenge is to raise money and awareness about amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease).

ALS is a neurodegenerative disease that affects nearly 30,000 Americans. It primarily affects people in their mid-40s to mid-60s, and is characterized by an increasing loss of motor function. Initial symptoms include muscle weakness or slurred speech. As the disease progresses these symptoms become increasingly pronounced. Patients with ALS gradually lose the ability to walk, speak, eat and (eventually) breathe. They slowly become prisoners in their own bodies, fully aware but trapped in an increasingly uncooperative shell.

The root cause of the disease is still unknown, and there is no known cure. Treatments can slow the onset of symptoms, but most patients succumb to the disease rather quickly. The majority of people living with ALS die within 3-5 years of their initial diagnosis, although there are notable exceptions like famed physicist Stephen Hawking, who has lived with the disease for over 50 years

The federal government spends about $60 million on ALS research. Private organizations like the ALS Association also spend money, both to develop new treatments and to provide care for those affected by the disease. As a non-profit organization, however, the ALS Association depends on contributions from people like you and me, and that’s where the ice bucket challenge comes in.

The challenge is simple. A person either donates $100 to the ALS Association or agrees to post a video of them getting doused with ice water on a social media site like Facebook (usually with a hash tag like #IceBucketChallenge or #StrikeOutALS). That person then challenges three of their friends to do the same: donate or get doused.

The campaign has been remarkably successful. In the past month, the ALS Association has raised over $1.5 million. Donations are up nearly a hundredfold since the campaign began. That’s a good thing, so what I’m about to say is likely to be surprising and even a little upsetting to some.

I think the ice bucket challenge is a crock, and I want no part of it. To all my friends who have called me out on Facebook to participate, my answer is ‘no’.

This isn’t to say that I don’t believe that ALS is a terrible disease. It is. I have seen the effects first hand, when the brother of a close friend contracted the disease. I have also donated to the ALS Association in memory of a former student’s father, who died from complications related to ALS last year

I am opposed to the ice bucket challenge for a number of reasons. First, I don’t believe that it does anything to raise awareness of ALS in the long term. Most of the videos that I have seen posted on Facebook, Vine and other social media sites say little to nothing about the disease and its impact on the families affected by ALS. They also don’t discuss why monetary donations are desperately needed, where to donate to, or how the money will be used.

Second, I have a real problem with a fundraising campaign in which public humiliation or exhibitionism seems to be the primary goal, with donations to a charitable cause an afterthought. Consider the rules of the ice bucket challenge: you either film yourself getting doused with ice water or you donate $100 to a charity. Charitable donations are the consolation prize in this extortive game.

In fact, what most people don’t realize is that the ice bucket challenge predates the ALS Association campaign. It was actually started as a game among pro athletes like golfer Greg Norman, with those who refused asked to donate to a charity of the challenger’s choice. The original challenge was never about raising money or awareness of a charitable cause, and now we have thousands or millions of Americans who feel like they’ve contributed to ALS research without actually doing anything.

If you want to help those living with ALS, dunking a bucket of cold water over your head is not the way to do it. Rather, you should visit the websites of organizations like the ALS Association and learn more about the disease. You should donate money to the cause and encourage your friends and family to do the same (without subjecting them to hypothermia). You should write your Congressional representatives and encourage them to increase funding for ALS research. Finally, you should consider donating your time to help those with the disease and their families.

Save the ice for your drinks.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 14, 2014, and is available on the WAMC website.]

Posted in Celebrities, Health Care, Media, Research | Leave a comment

She Ain’t Heavy, She’s My Brother

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 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.]

Posted in Discrimination, Human RIghts | Leave a comment

The Curious Case of Hobby Lobby

The news was chock-a-block with important health stories this week, including new evidence debunking the vaccine-autism myth and the revelation that researchers conducted a legal albeit ethically questionable study that manipulated the emotions of nearly 700,000 Facebook users. But I want to talk about the 900-lb. gorilla in the room: the US Supreme Court’s decision in the so-called “Hobby Lobby” case (Burwell et al. v. Hobby Lobby Stores, Inc. et al.)

Hobby Lobby, a privately owned chain of 640 arts and crafts stores with more than 13,000 employees, appealed for an exemption to the contraceptive requirements of the Affordable Care Act. While Hobby Lobby includes most forms of contraception under its employee health insurance plan, they do not include those forms of contraception – intrauterine devices (IUDs) and morning-after pills – that they consider to be abortificants.

Whether or not those forms of birth control induce abortions (they largely don’t) is actually immaterial to this case. What matters is whether or not a private company like Hobby Lobby can forced to provide a form of contraception that runs contrary to the religious beliefs of the owners.

In a sharply divided 5-to-4 decision, the Supreme Court ruled that requiring family-owned corporations to pay for insurance coverage for contraception violated the Religious Freedom Restoration Act. Closely held corporations – businesses where more than 50 percent of the stock is owned by five individuals or less – will no longer be required to provide insurance coverage for contraception if doing so violates the owners’ religious beliefs.

The Hobby Lobby case revolved around two questions. First, can a for-profit corporation like Hobby Lobby be considered a ‘person’ under the Religious Freedom Restoration Act. That Act states that the government “shall not substantially burden a person’s exercise of religion”. As strange as it may sound, the answer to this question is an unequivocal ‘yes’. Corporations are presumptively treated as persons under the law, and the federal government has recognized that the Religious Freedom Restoration Act protects non-commercial corporations like churches.

Second, does the contraception mandate in the Affordable Care Act substantially burden Hobby Lobby? The Religious Freedom Restoration Act does not give carte blanche to all faith-based beliefs and activities. The parents of a severely ill child, for example, cannot refuse to allow lifesaving treatments even if those treatments violate their religious beliefs. But the law requires that there be a compelling state interest and the government use “the least restrictive means of furthering that compelling interest.”

A strong argument can be made that providing universal contraceptive coverage is in the best interests of the state. The social, economic, and medical benefits of preventing unintended pregnancy are significant. For example, every $1 invested in family planning services saves nearly $4 in pregnancy-related Medicaid expenditures. Hormonal contraceptives like birth control pills are also used to treat a variety of medical conditions, including migraines, premenstrual dysphoric disorder, and polycystic ovary syndrome.

This point wasn’t even in dispute. What the Supreme Court’s majority held, however, was that there were less burdensome alternatives to achieving universal contraceptive coverage. The federal government has already created exemptions to the contraceptive mandate for non-profit religious organizations, requiring insurance companies to offer contraception coverage directly to employees who want it rather than as part of an employer-provided plan. These exemptions could be extended to closely-held for-profit companies like Hobby Lobby.

This is where I find fault with the Supreme Court’s ruling. Writing for the majority, Justice Alito states that the federal government has “at its disposal an approach that is less restrictive than requiring employers to fund contraceptive methods that violate their religious beliefs.” But this too is being challenged in federal court under the Religious Freedom Restoration Act.

Over 100 religiously affiliated non-profits are suing over that accommodation, arguing that it amounts to complicity in sin. These employers are not providing or paying for contraceptives – the use of which violates their religious beliefs – but the very fact that they have to offer health insurance at all sets in motion the events that lead to contraceptive use. This, the plaintiffs claim, violates their rights. Should the various courts rule in their favor, the less burdensome alternative mentioned in Alito’s majority opinion could no longer exist.

Moreover, the question of complicity in sin is challenging one. It is more suited to philosophical or theological debates than courtroom testimony. For instance, should we apply this to the Hobby Lobby case, we could question the sincerity of that complaint by noting that their employee retirement plan invests heavily in companies that produce contraceptive pills and IUDs. They also sell large numbers of products that are made in China, a country whose one-child policy mandates the use of contraceptives or abortion as a means of controlling population growth.

In her scathing dissent, Justice Ruth Bader Ginsburg wrote, “the court, I fear, has ventured into a minefield.” No truer or more prophetic words have likely been written. Should current accommodations to the contraceptive mandate be struck down, for example, the majority opinion in Burwell v. Hobby Lobby will have no constitutional standing. The ruling is also likely to have far ranging consequences, as it calls into question decades of court decisions that have denied religious exemptions from laws that apply to all private businesses or individuals. The consequences of the Court’s expected but ill-considered decision are likely to be far-ranging and precedent-shattering.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 3, 2014, and is available on the WAMC website. ]

Posted in Health Care, Policy, Reproductive Rights | Leave a comment

You Can’t Fix What Ain’t Broke: Combating the Dangers of Reparative Therapy

Earlier this week, the New York State Assembly overwhelmingly voted to pass a bill that would ban the use of so-called “reparative” or “conversion” therapy – treatments that aim to change sexual orientation – on minors. During the time I wrote this commentary, the New York State Senate had yet to vote on the bill. They have until the end of today, when the 2013-14 legislative session officially closes, to pass the bill. Should it pass, Governor Cuomo is expected to sign the bill into law. This would make New York the third state – following California and New Jersey – to outlaw efforts to turn gay kids straight.

Over 250 organizations around the country currently offer reparative therapy to adults and to minors. Many insurance plans, including Medicaid, also cover the costs of mental health counseling and treatment for homosexuality. This is despite the lack of evidence that conversion therapy works.

Most of the scientific studies conducted to date show that conversion therapy is ineffectual and even harmful. In 2009, for example, the American Psychological Association’s Task Force on Appropriate Therapeutic Responses to Sexual Orientation conducted a comprehensive review of all available research on reparative therapy. That group concluded that a person’s sexual orientation could not be changed. While some people are able to change their sexual behaviors —by becoming celibate rather than having a relationship with a partner of the same gender — their physical and emotional attraction to members of the same sex remained. Other professional organizations, including the American Psychiatric Association, the American Counseling Association and the National Association of Social Workers have reached similar conclusions about the efficacy of reparative therapy.

Of the few studies that actually suggest that conversion therapy works, most are fundamentally flawed. For example, there is the oft-quoted study from famed psychiatrist Dr. Robert Spitzer. That study, which interviewed a small group of gay men and women about their sexual feelings and behaviors before and after reparative therapy, concluded that, “some people can change from gay to straight.”

But participants in that study were recruited through groups like the National Association for Research and Therapy of Homosexuality (NARTH), an organization that actively promotes the use of reparative therapy. Most of the participants described themselves as deeply religious, and many were politically active ex-gay advocates. The results of that study are thus heavily biased. Dr. Spitzer himself retracted this study in 2012, stating that he “owed the gay community an apology”. Nevertheless, this study is still cited by NARTH and other anti-gay organizations as conclusive proof that homosexuality is a malleable lifestyle choice rather than an immutable biological fact.

Being gay is not an illness, and it doesn’t need to be treated through therapy. What should be treated is the erroneous belief that people can (and need) to be cured of their homosexuality. When a group like the Texas Republican Party adopts a platform that, “recognize[s] the legitimacy and efficacy of counseling, which offers reparative therapy and treatment for those patients seeking healing and wholeness from their homosexual lifestyle,” they demonstrate their ignorance of facts.

Opponents of legislation that bans reparative therapy, such as Cathie Adams, president of the conservative Texas Eagle Forum, like to describe this as an issue of freedom. Ms. Adams spearheaded the effort to get Texan Republicans to endorse reparative therapy because she does not think that, ”homosexuals are born as homosexuals.” She believes that gay men and women should have the right to seek out reparative therapy and thus be rescued from an immoral lifestyle choice.

What folks like Cathie Adams fail to understand, however, is that endorsing conversion therapy doesn’t promote freedom. Rather, it does the exact opposite. It allows (and even encourages) parents to force risky and unnecessary treatment on children and teens that they see as “sick”. It also reinforces dangerous but socially accepted stereotypes that gay men and women are mentally ill or physically diseased, and thus contributes to the continued and destructive stigmatization of sexual minorities in the US.

Such stigmatization and discrimination is why gay men and women are more likely to be the victims of harassment, bullying and violence. It is also why they have higher rates of anxiety, depression, substance abuse and suicide. This is particularly true of gay men and women who undergo reparative therapy, which explains why groups like the American Psychiatric Association and American Psychological Association openly condemn attempts to change an individual’s sexual orientation.

Quite simply, reparative therapy is wrong and should be banned. It should be banned for everyone, not just for teenagers as California, New Jersey and (hopefully) New York have done.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 19, 2014, and is available on the WAMC website. ]

Posted in Discrimination, Health Care, Homosexuality, Mental Health, Policy, Politics | 2 Comments