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

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