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

Living With HIV/AIDS Should Not Be A Crime

It went largely unnoticed by the public and the press, but last month Iowa’s Senate and House of Representatives did something groundbreaking. With broad bipartisan support, that state became the first in the country to repeal and replace its existing HIV criminalization law.

Prior to this repeal, Iowa was one of 34 states to have a law that explicitly criminalized exposing an uninfected individual to HIV through sex, shared needles or other routes of transmission. Those of us who reside in the Northeast — particularly those living with HIV/AIDS — are fortunate in that the states in this region of the US do not criminalize HIV. Others are not so lucky.

States such as Iowa, Michigan and Texas passed these criminalization laws in response to the 1990 Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. That Act, which proved public funds for treatment and care of those living with HIV/AIDS, also required each state to certify that it had laws that could be used prosecute those who knowingly exposed others to HIV.

The states already had adequate criminal laws to prosecute the malicious transmission of HIV, usually through existing assault statutes. Despite this, in accordance with the requirements of the Ryan White CARE Act and in response to several high-profile transmission cases (including the 1996 incident when Nushawn Williams was charged with intentionally infecting 13 women and girls with HIV in New York), legislators were quick to pass laws that explicitly focused on persons living with HIV/AIDS.

Twenty-four states, for example, passed legislation that required people with HIV to notify their sexual partners of their serostatus. Fourteen states also passed laws requiring disclosure of HIV status to needle-sharing partners. Other states also make it a crime for an HIV infected person to spit or to touch another person with their blood or saliva.

Until last month, Iowa had one of the strictest laws on the books. Iowans living with HIV/AIDS faced up to 25 years in prison and inclusion on the state’s sex offender registry if they could not prove that they had disclosed their HIV status to a sexual partner. This was true even if they practiced safer sex and even if that person remained uninfected.

Moreover, the burden of proof was on the accused. Iowans living with HIV/AIDS were ‘guilty until proven innocent,’ as persons charged with violating the transmission statute had to show that they disclosed their status to the sexual partner rather than the other way around.

Thankfully, that law has been replaced. Iowa’s new statute takes into account such important factors as whether or not safer sex precautions were used, whether or not transmission of the virus actually occurred, and whether or not the person intended to transmit HIV. The names of those convicted under the old law have also been expunged from the sex offender registry.

Hopefully, the 33 other states that still have HIV criminalization laws will soon follow suit. This is because such criminalization statutes do little to prevent the spread of HIV. In fact, they may even exacerbate the very problem they were intended to prevent.

Currently, the only successful defense to prosecution under most HIV criminalization statutes is either a claim of disclosure (often hard to prove given the one-on-one nature of most sexual encounters) or ignorance of one’s HIV-positive status. Seeking voluntary HIV testing can make a person criminally liable for normally legal conduct: consensual sexual activity. This not only adds to the still rampant discrimination and stigmatization of those living with HIV/AIDS, but also discourages at-risk individuals from seeking testing because of fears of legal prosecution.

Those who know they are HIV-infected become legally obliged to disclose their HIV status to long-time, casual and even anonymous sexual partners. By contrast, people who frequently engage in unsafe sexual encounters but who do not know that they are HIV infected — even if they have a strong reason to assume so, based on behavior — are under no legal obligation to disclose this information to a sexual partner.

There can be no doubt that is a deterrent to HIV testing. Many at risk-individuals may be discouraged from seeking HIV testing because of fears of legal prosecution, despite the fact that testing and treatment could not only preserve the lives of those with HIV but also reduce the likelihood that they will transmit the virus to others.

We know, for example, that treatment of those living with HIV/AIDS is as effective in terms of reducing the risk of HIV transmission as using condoms. New antiretroviral drugs can essentially render a person non-infectious, but that can only achieved if people seek testing and treatment. HIV criminalization laws discourage this.

This is not to say that particularly egregious, intentional and malicious cases of HIV transmission shouldn’t be prosecuted, but existing criminal assault laws cover that. But it is unreasonable to continue to require HIV-infected people to disclosure their serostatus to sexual partners if they have undertaken the necessary precautions — practicing safer sex and seeking treatment — that makes transmission exceedingly unlikely.

It is ironic that these criminalization laws actually encourage the very act that they were designed to prevent: the wanton and callous spread of HIV.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 5, 2014, and is available on the WAMC website. Portions are also adapted from an article written by Drs. Udo Schüklenk and ean Philpott-Jones and published in the August 2011 Issue of the International Journal of Law in Context.]

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

Alzheimer’s Disease: The Forgotten Epidemic

We hosted a conference on Alzheimer’s disease at the College last week, inviting a distinguished group of physicians, researchers, caregivers, advocates and policymakers to discuss the ethical and legal challenges of diagnosing and treating those with the disease.

These issues are particularly important to me. I have immediate family members who have been affected by Alzheimer’s disease, as patients and as long-term caregivers. I also carry a genetic trait known as APOE-e4 that makes me far more likely to develop the disease, and to do so at a younger age.

As someone whose career and self-worth are tied to my ability to think and write creatively, the very thought that I could slowly lose everything that makes me who I am terrifies me. I also worry about the huge personal and financial impact that a diagnosis of Alzheimer’s could have on my family.

Those living with Alzheimer’s, their families, and their friends also struggle with a myriad of practical issues as the disease slowly robs them of their memory, their thoughts, their speech, and their motor functions. They face difficult choices about treatment, independence, safety, long-term care, and end-of-life decisions.

There is also emotional toll. It is never easy to lose a parent, a sibling, a partner or a friend. But unlike patients suffering from other terminal illnesses, those with Alzheimer’s and similar neurodegenerative disorders die twice. They die mentally when their dementia reaches the point that they no longer recognize or remember family and friends. They are still alive physically, and may continue to live for many more years, but the person they were is gone. Family members are left to grieve the loss of their loved one while still caring for the stranger that they have become.

This is the cruel reality of Alzheimer’s. It is also a reality that most of us will have to deal with in the years that come.

The US Centers for Disease Control and Prevention (CDC) ranks Alzheimer’s as the sixth leading cause of death in the United States. An estimated 84,000 Americans died of the disease in 2010.

But that is likely to be a gross underestimate of Alzheimer’s physical toll. According to a recent study conducted at Rush Alzheimer’s Disease Center in Chicago, the number of deaths that are actually attributable to the disease may be 5 to 6 times higher. That would mean that nearly half-a-million Americans died of Alzheimer’s in 2010, making it the third leading cause of death in the US. Only heart disease and cancer took more lives.

Currently, 1 in 9 Americans aged 65 or older has Alzheimer’s. That proportion rises to nearly 1 in 3 for those aged 85 and older. That translates to 5 million people in the United States who have the disease, a number that is expected to triple over the next few decades with the demographic changes associated with the aging of the baby boom generation.

Alzheimer’s is already the most expensive disease in the US. We now spend over $200 billion dollars a year caring for those with Alzheimer’s including $150 billion in Medicare and Medicaid. About half of all nursing home residents are people with Alzheimer’s disease or other neurodegenerative diseases, most of who rely upon Medicaid to pay for their long-term care.

But that too is likely a gross underestimate of the financial toll of this disease, as it fails to take into account all of the unpaid care provided by family and friends. Nearly 18 billion hours (or $200 billion) of free care was provided in 2013. Most often than not, this care was provided by women who left the workforce in order to care for an ailing spouse, parent, or sibling.

Unless we do something to reverse this tide, Alzheimer’s is going to bankrupt us financial and emotionally. We can’t reduce the economic cost of caring for those with the disease, so the only solution is to find new ways of slowing or preventing the onset of dementia. We need more research that is aimed at developing new cures and treatments.

Despite this, funding for Alzheimer’s research lags considerably when compared with other diseases like breast cancer, stroke, heart disease and HIV/AIDS. Although Alzheimer’s now kills nearly as many people as cancer, for example, the federal government spends twelve times as much on cancer research as it does on Alzheimer’s.

This needs to change. We need more bills like the Alzheimer’s Accountability Act, introduced in 2014 by Representatives Paul Tonko (D-NY-20) and Brett Guthrie (R-KY-2). We need to provide more funding for Alzheimer’s research, but we need to do so in a way that doesn’t rob other research initiatives (including efforts to find a cure for cancer) of desperately needed resources.

Unfortunately, this is unlikely to happen. Our Congressional leaders are too focused on cutting costs, including slashing the federal budget that supports biomedical research, to recognize the looming crisis. Alzheimer’s will, I fear, remain an overlooked and forgotten epidemic until it is to late intervene.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 22, 2014. It is also available on the WAMC website.]

 

Posted in Alzheimers, Clinical Trials, End-of-Life, Health Care, Policy, Public Health, Research | Leave a comment

The Botched Execution of Clayton Lockett: Is Lethal Injection Painless and Humane?

Clayton Lockett died last week, but few will mourn his death. A four-time convicted felon, Mr. Lockett was executed by the State of Oklahoma for shooting and then burying alive a 19-year-old girl. Following his death, Oklahoma Governor Mary Fallin proudly stated that, “justice was served”.

Justice indeed was served, at least if you believe in the Biblical principle of an eye for an eye and a tooth for a tooth, for Mr. Lockett suffered greatly during the 43 minutes it took him to die by lethal injection.

Twenty minutes into the execution — during which Clayton moaned, writhed and gritted his teeth — correction officials discovered that the vein used to deliver a lethal cocktail of drugs had collapsed. Instead of entering his bloodstream, drugs that were meant to render Mr. Lockett unconscious, paralyze him, and stop his heart leaked into the surrounding tissue. He was partially awake and in considerable pain.

State officials called off the execution, but it was too late. Forty-three minutes after the execution began, Mr. Lockett suffered a heart attack and died.

Although a majority of Americans support the death penalty, capital punishment remains a controversial topic. Should our system of justice be based on rehabilitation or retribution? Can a society condemn the wanton taking of life by individuals like Clayton Lockett and yet sanction the same act by government officials? Is this penalty fairly applied to all of those accused of capital crimes or do racial and ethnic minorities bear a disproportionate burden of punishment?

No matter where you fall in this debate, the horrific manner in which Mr. Lockett died should raise serious concerns about our current method of execution by lethal injection.

Execution by lethal injection was first proposed in the 19th century. It came into widespread use in the 20th century, initially as a cost-effective means of involuntary euthanasia under the Action T4 program in Nazi Germany.

It wasn’t until the latter part of the 20th century that lethal injection became a common method of execution in the United States. Oklahoma was the first state to legalize the use of lethal injection, and other states quickly followed suit. It is the preferred method of execution in the 32 states that allow the death penalty.

Until recently, the approach used in the United States has remained largely unchanged from the lethal injection protocol first proposed by Oklahoma’s state medical examiner, Jay Chapman. Known as the Chapman protocol, it involves the use of three drugs: a barbiturate like sodium thiopental to render condemned prisoners unconscious and insensate, pancuronium bromide to cause paralysis and suppress respiration, and potassium chloride to trigger cardiac arrest.

But despite claims that this approach is more humane and less painful than other execution methods, this has never been demonstrated. Chapman himself did no research in designing the lethal injection protocol that bears his name. Similarly, no one has ever collected data that shows that lethal injection prevents the “unnecessary and wanton infliction of pain” required by the Eighth Amendment to the US Constitution.

Worse yet, states that allow execution by lethal injection are now forced to deviate from the Chapman protocol due to drug shortages. Several of the drugs used to execute condemned prisoners are in short supply, largely because imports from manufacturers in Europe have stopped.

The European Union limits the manufacture and export of drugs that can be used for capital punishment under its existing Torture Regulation. Many European drug companies no longer produce and sell these compounds. Of those companies in Europe and the US that do still manufacture these drugs, most are reluctant to sell them to state Departments of Corrections.

In states like Texas and Ohio — where lethal injection is the only execution method allowed by law — this shortage has left corrections officials scrambling to find alternative sources of these drugs or to devise alternative means to carry out state-sanctioned executions. Rather than use sodium thiopental, for example, some states have started using varying doses of a different drug — sodium phenobarbitol — alone or in combination with pancuronium bromide and potassium chloride as their lethal injection cocktail.

States are also calling upon small companies known as compounding pharmacies to provide the drugs required, as Oklahoma did for Clayton Lockett’s execution. But compounding pharmacies are not FDA-regulated. Sometimes, they are even not licensed or qualified to mix these particular drug combinations. States are thus using drugs of unknown quality and potency as part of the lethal injection protocol.

Our increasingly random approach to executing prisoners via lethal injection, using drugs obtained from poorly regulated sources, raises any number of questions about the constitutionality of this method of capital punishment. Regardless of what you might think about men like Clayton Lockett, they too have certain inalienable rights. One of these is the right to be free of “cruel and unusual punishments,” which includes guaranteeing that state-sanctioned executions are free of unnecessary and wanton pain.

There should be immediate moratorium on the use of the death penalty until we can prove that our current methods of lethal injection are indeed humane and pain free. Otherwise we are condemning thousands of inmates to a fate worse than death.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 8, 2014, and is available on the WAMC website. Portions are also adapted from an article published in the March-April 2014 Issue of the Hastings Center Report (Philpott S. 2014. Execution by Lethal Injection: Illegal Research? Hastings Center Report 44(2): 11-12)]

Posted in Crime, Pharmaceuticals, Politics | 1 Comment

Income Inequality and Health: Can the Poor Have Longer and Better Lives?

The issue of income inequality has been in the news a lot lately. The gap between rich Americans and poor Americans has grown considerably since the 1970s. The United States now ranks first among the developed nations of the world in terms income inequality as measured by the Gini coefficient, a way of describing the distribution of wealth in a society. Globally, we’re fourth overall, surpassed only by Lebanon, Russia and the Ukraine.

Income inequality is a serious problem, so much so that Nobel Prize-winning economist Robert Shiller called it, “the most important problem that we are facing today.” Income inequality negatively affects economic growth, social mobility, political stability and democratic participation. It also affects the public health.

Quite simply, wealthier Americans tend to live healthier and longer lives. As the income gap has grown, so has the longevity gap. For example, consider the report recently released by the Brookings Institute that looked at income and differential mortality.

Between 1977 and 2007, Brookings economists Barry Bosworth and Kathleen Burke found that life expectancy increased an average of five years for men and one year for women.  But the gains in life expectancy accrued primarily to the rich. The richest 10% of Americans gained 5.9 and 3.1 years of life for men and women, respectively.  For men in the poorest 10%, the increase in life expectancy was less than two years.  The poorest women actually lost two years of life.

To really get a sense of how stark this divide is, however, consider the recent article by New York Times Reporter Annie Lowrey. She compared average life expectancy in Fairfax County, Virginia with that of McDowell County, West Virginia. A suburb of Washington, DC, Fairfax has one of the highest median incomes in the country:  $107,000. Men in Fairfax also have a mean life expectancy of 82 years. By contrast, the coal mining communities in McDowell have one of the lowest median incomes: $23,000. Men in that county only live to 64 on average.

There are a myriad of reasons why this longevity gap exists. The most obvious is access to health care. Wealthier individuals are more likely to have health insurance, a fact that the Obama Administration is trying to change through the Affordable Care Act.

But even if the Affordable Care Act succeeds in reducing the number of under- or uninsured Americans — which now seems likely, given that 8 million people signed up for one of the new health insurance exchanges — inequities in access will still exist.

For example, wealthier Americans will have far more choice in the types and numbers of doctors they can see.  Many clinicians are now refusing to accept any insurance plan, particularly publicly funded plans like Medicaid. Others are setting up concierge practices that guarantee same day appointments to those willing to pay. By contrast, poorer patients will have to wait for treatment, assuming they can find a doctor willing to see them.

The quality of care that the poor receive is also lower. Numerous studies have shown that lower-income patients are more likely to be misdiagnosed, prescribed the wrong medication, or suffer from complications of treatment. This is not because their doctors are incompetent or don’t care about their poorer patients. Rather, doctors that serve lower-income communities often do not have the time to adequately examine patients, take a full medical history, properly explain treatment options, or prescribe the newest drugs; they simply have too many patients to see and insurance reimbursement rates are too low to provide a full range of services.

Finally, wealthier individuals tend to live healthier lives overall. They are less likely to smoke, to drink to excess, and to be overweight. Part of this is due to differences in education, but part of it is due to time and resources. The investment banker who works in Manhattan can afford to buy fresh produce and other healthy meals at the local Whole Foods. He can also afford a gym membership, and he likely lives in a neighborhood that offer safe opportunities for exercising out-of-doors. By contrast, the single mother of four who lives in the Bronx must feed her family on a limited income, buying pre-packaged food at the corner market. She also probably lacks the time to exercise, assuming that the local playground isn’t overrun with drug dealers and gang members.

As we struggle with the issue of health care in America — expanding access to treatment while controlling costs — it is important to remember that the current health care crisis is not just about medical insurance. There are other problems in our society that will affect the outcome of the current debate. The Affordable Care Act will help address some of the current inequities in our health care system. Until we attack the fundamental issue of poverty and the income gap, however, we are probably just putting a small bandage on a large and gaping wound.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on April 24, 2014. It is also available on the WAMC website.]

Posted in disadvantaged, Health Care, health literacy | Leave a comment

Why I am a Truvada Whore

Although the epidemic likely started a decade or two earlier, AIDS wasn’t identified as a new disease until 1981. It took a few more years to isolate HIV, the virus that causes AIDS, and to develop reliable tests for diagnosing infection.

In the thirty years since, nearly 30 million people have died and another 35 million are currently infected with HIV worldwide. In the US, over a million people are living with HIV/AIDS. Although the disease still primarily affects gay men in the US, heterosexual men and women — particularly men and women of color — are also at risk. Globally, heterosexual men and women of color bear the largest burden of the disease.

Transmission of HIV is actually very easy to prevent. The virus is spread through bodily fluids, usually through sex but also through the sharing of needles, the use of improperly sterilized medical equipment, or via exposure to contaminated blood products. For most us, practicing safer sex – such as abstinence, monogamy or the use of latex or polyurethane condoms – makes the risk of acquiring HIV very small. Despite this, rates of HIV infection are still too high. Last year, 2.3 million people were newly infected with HIV. 50,000 of these new infections occurred in the US.

One problem is that those most at risk tend to be socially or economically marginalized. Such marginalization can make current HIV prevention messages and tools – abstinence, condoms, and mutual monogamy – inaccessible to many. Thus, there is an urgent need to develop new user-controlled HIV prevention tools, such as vaccines and pre-exposure prophylaxis, that will enable these individuals to protect themselves.

Pre-exposure prophylaxis (PrEP) involves the use of current drugs to prevent rather than treat HIV. Recently, several large-scale clinical trials found that daily use of the antiretroviral drug Truvada® – popping this pill every morning like you would a multivitamin – reduced the risk of acquiring HIV by nearly two-thirds. The US Food and Drug Administration (FDA) has since approved the marketing of daily Truvada for HIV prevention, and Medicaid and other health insurance plans now cover the cost of PrEP for patients at high risk for HIV.

Despite clear evidence that this approach works, however, the use of antiretroviral drugs for HIV prevention has sharply divided the AIDS community. Many activists and advocates have voiced concerns that the use of Truvada for PrEP will lead many people to abandon other methods of protecting themselves, particularly the use of condoms.

Michael Weinstein, president of the AIDS Healthcare Foundation, the largest provider of HIV care and treatment in the US, has described Truvada as “a party drug”. Widespread use of PrEP, Mr. Weinstein believes, will cause the gay community to return to the hedonistic days of the sexual revolution, when promiscuity was rampant and condom-use non-existent. This, he fears, will actually lead to an increase in HIV and other sexually transmitted infections in the homosexual community, not a decrease.

The public relations attack by Mr. Weinstein and his allies has been so viscous that proponents or users of PrEP have been labeled “Truvada whores.” While some of these so-called ‘whores’ view this epithet as a badge of honor, others now hide their support or use of Truvada for HIV prevention out of fear or shame.

But what opponents of PrEP fail to consider is the very point I’ve already made: not everyone at risk for HIV can use condoms or insist on monogamy. For many people, daily use of Truvada may be the only HIV prevention tool that is available to them. Others may make a conscious decision not to use condoms or be sexually abstinent. That is their choice, as unwise as some might consider it to be, but that doesn’t mean that they shouldn’t have access to other prevention tools.

By publicly disparaging the use of PrEP, Mr. Weinstein and others are discouraging those individuals from seeking out and using this effective HIV prevention tool. They are also preventing them from seeking all of the other prevention-related services that accompany it, including routine HIV testing and STI screening and treatment. That is unfortunate, and likely hurts efforts to prevent the spread of HIV/AIDS.

Advocates and activists like Mr. Weinstein are right to voice a concern that use of Truvada alone is not as effective as consistent use of condoms, but they also need to recognize that PrEP is it better than nothing at all when it comes to HIV prevention. This is true not just for the gay community, currently being torn asunder by the acrimonious PrEP debate, but also for injection drug users, women of color, and other high risk groups. More importantly, these adovcates need to acknowledge that use of PrEP with condoms is even more effective at preventing the spread of the virus.

Truvada is a lifesaver, both in terms of preventing the spread of HIV and in prolonging the lives of those living with HIV/AIDS. We should be encouraging its use, not disparaging it. So I’ll say it loud and say it proud: “I’m a Truvada whore!”

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on April 10, 2014. It is also available on the WAMC website.]

Posted in Health Care, HIV/AIDS, Homosexuality, Pharmaceuticals, Public Health | Leave a comment

Forgiving Fred Phelps

Fred Phelps, one of the most reviled men in the United States, died last week. Mr. Phelps was the founder of the Westboro Baptist Church, a virulently homophobic organization known for its “God Hates Fags” slogan.

Members of the Westboro Baptist Church have been conducting anti-gay protests since 1991, but the group gained national prominence in 1998 when it picketed the funeral of Matthew Shepard. As most people know, Mr. Shepard was a young man from Wyoming who was robbed and beaten to death by two men who targeted him because he was gay. His murder and the subsequent trial of his assailants, dramatized in the award-winning play The Laramie Project, helped to raise public consciousness about anti-gay bullying and hate crimes against sexual minorities.

The Westboro Baptist Church now conducts an average of six or more protests a day. Church members routinely picket the funerals of other gay men, particularly those who were the victims of hate crimes or who died of HIV/AIDS. They also protest at performances of The Laramie Project, at concerts given by musicians deemed to be LGBT-friendly, at Jewish and Muslim religious services, and even at the funerals of soldiers killed in Iraq or Afghanistan. Those wars, Church members believe, are divine punishment for “[our] evil nation for abandoning all moral imperatives that are worth a dime.”

Despite the fact that Mr. Phelps and his followers believe that my husband and I are directly responsible for all of the ill fortune that befalls Americans, I do not celebrate his death. While I am not going to mourn the passing of a hate-filled man such as Fred Phelps, I’m not going to take perverse happiness in it either. In fact, I find it sad that he left this world without a chance to find peace, love, redemption and forgiveness.

Many of my friends and family find this a bit shocking. When I posted this sentiment on Facebook, for example, one colleague commented that she’d have a hard time finding forgiveness for a guy who, by picketing the funerals of combat soldiers, put grieving families through so much additional pain.

I see it quite differently. People like Fred Phelps are exactly the ones that need our forgiveness. Moreover, forgiving those who have hurt us — particularly those who have done nothing to deserve forgiveness — gives us great power and strength. This is a lesson that I learned several years ago after having lunch with a remarkable woman named Eva Mozes Kor.

Ms. Kor is a Holocaust survivor. At the age of 6, Romania-born Eva and the other members of her family were sent to the infamous Auschwitz concentration camp. While there, Eva and her twin sister Miriam were the subjects of horrific medical experiments by Dr. Josef Mengele. Despite this, they both survived and were liberated by Allied forces near the end of the war. Eva eventually emigrated to the US while her sister moved to Israel. Together, they founded an organization called CANDLES (Children of Auschwitz Nazi Deadly Lab Experiments Survivors), through which they began to locate other survivors of Dr. Mengele’s research and to publicize the experiences of Holocaust survivors.

But Ms. Kor also did something completely unexpected and extremely controversial. Fifty years after the liberation of Auschwitz, on the very site where so many died, Eva announced publicly that she forgave the Nazi’s for what they had done to her. She didn’t deny that inhumane atrocities had occurred in the camps, nor did she believe that these crimes should be forgotten. She simply forgave those that had wronged her, freeing herself from decades of victimhood and suffering.

Hearing this story from Ms. Kor inspired me to do the same in my life. I forgave a former employer for a myriad of wrongs, letting go of my anger while still embracing the management lessons that I learned. I even forgave my former stepfather for a decade of mental and physical abuse, recognizing that my own compassion is a direct response to his lack of caring and concern.

I believe that Fred Phelps deserves the same. In fact, we should even thank Mr. Phelps and his followers for their hate-filled rhetoric. By taking the same rhetoric and opinions spouted by many ‘good Christians’ to the extreme — through slogans like “God Hates Fags” and “Thank God for Dead Soldiers” — the Westboro Baptist Church showed just how pervasive and perverse homophobic attitudes are. It’s even possible that many of the recent advances in gay rights wouldn’t have been achieved without Fred.

Thank you, Mr. Phelps, for being a role model for kind and caring people around the world. You and the others like you teach us what we should strive not to be. I only hope that you find the love and compassion in the next life that you so sorely lacked in this one.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 27, 2014. It is also available on the WAMC website.]

Posted in Celebrities, Discrimination, End-of-Life, HIV/AIDS, Homosexuality, Mental Health, Veterans | 1 Comment

Reefer Madness

While I was on the phone with a colleague from Denver last week, our conversation turned inevitably to the topic of marijuana. Colorado legalized recreational use of the drug via popular referendum in 2012, creating the world’s first fully regulated marijuana market. The first commercial sales occurred this past January, with $15 million in sales reported in the first month alone.

Despite this, my friend patiently explained, the “Mile High City” isn’t full of mile-high residents. Tight regulation of the market and increased spending on anti-drug messages, coupled with the drug-testing policies of private employers, makes it unlikely that most Coloradans will be ‘passing the dutchie ‘anytime soon.

While I don’t smoke marijuana I do support the decriminalization of its recreational use. However, I suspect that few states will be following the lead of Colorado and Washington State anytime soon. More likely is the continued legalization of marijuana for medical use. Twenty states and the District of Columbia have laws that allow this. Fifteen other states are considering such legislation, including New York.

The Empire State is the only one in the Northeast without a medical marijuana law, but that may change soon. Governor Cuomo recently proposed reviving a defunct 1980 law — the Controlled Substances Therapeutic Research Act — that would allow marijuana’s limited use. Under the proposed plan, the New York State Department of Health would oversee a program in which 20 hospitals will be allowed to prescribe marijuana as part of a pilot project to look at the drug as a treatment for life-threatening conditions like Dravet syndrome.

I find the Governor’s proposal somewhat stupid. Legal and logistical problems aside, this limited program would add little to existing research on the safety and effectiveness of marijuana as a medical treatment.  But at least it’s a step in the right direction. If only the federal government were so open-minded.

Not only has the US federal government not passed a medical marijuana law, it still actively prosecutes those who grow, distribute or smoke marijuana. In 2013, for example, the US Department of Justice spent over $300 million investigating, arresting and prosecuting medical marijuana distributors.

Currently, the federal government regulates marijuana under the Controlled Substances Act of 1970. Drugs that fall under that Act are classified into one of five categories based on their potential for abuse and medicinal value. Marijuana is considered a Schedule 1 drug, the most dangerous and restrictive classification that exists. According to the US Drug Enforcement Agency (DEA), which enforces the Controlled Substances Act, marijuana has a high potential for abuse and no accepted medical use.

By contrast, the DEA considers cocaine to be a Schedule 2 drug. It is highly addictive, but it has been used as a topical anesthetic (particularly in the treatment of certain cancers). The prescription painkiller Oxycontin, which accounts for almost half of all drug overdose deaths in the United States, is also a Schedule 2 drug. Ketamine, an anesthetic that is also a commonly used ‘date rape’ drug, is a Schedule 3 drug. Alcohol and tobacco — two highly addictive and widely abused drugs with no known medicinal benefit — are not included in the DEA’s schedules of controlled substances.

This doesn’t make sense. Marijuana shouldn’t be a Schedule 1 controlled substance. Consider the issue of addiction and abuse. One of the arguments against the legalization of marijuana — either for medical purposes or for recreational use — is that it is a so-called gateway drug. Opponents of legalization argue that people who smoke marijuana are more likely to abuse cocaine, heroin, or other illicit drugs.

That is not true. Decades of research into the addictive properties of marijuana have found scant evidence that the drug is more likely to be abused than a drug like Xanax. We’ve known this fact for years. A 1944 study conducted by the US National Academy of Science found no evidence that marijuana was physiologically addictive. While more recent studies suggest that some users can be psychologically hooked on its use, the risks of mental addiction to marijuana are far lower than for other commonly used prescription drugs.

Questions of addiction aside, more troubling is the DEA’s characterization of marijuana as a drug with no medicinal properties. That is patently false. Prior World War 2, in fact, marijuana was routinely prescribed in the US as a treatment for neuropathic pain. Moreover, hundreds of studies have demonstrated the benefits of the drug for treatment of pain and nausea in cancer and AIDS patients. The drug also helps control epileptic seizures and delays loss of vision in patients with glaucoma.

There are still some concerns about the long-term health effects of using marijuana — particularly since the smoke also contains a variety of carcinogenic compounds — but for people facing life-threatening or debilitating illness those risks are well worth the relief that marijuana provides.

It’s time to change the federal approach to medical marijuana. There’s no reason why marijuana is Schedule 1 controlled substance or why federal agents routinely shut down dispensaries that sell the drug to patients.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 13, 2014. It is also available on the WAMC website.]

Posted in Drugs, Policy, Politics, Regulation, Substance Abuse | 2 Comments