A Withering Shine for Sheen

Earlier this week, troubled actor Charlie Sheen announced that he is HIV positive. Charlie now joins the 1 million Americans and nearly 40 million people worldwide living with HIV/AIDS. He also joins a small list of celebrities — NBA star Earvin “Magic” Johnson, professional tennis player Arthur Ashe, Olympic diver Greg Louganis, fellow actor Danny Pintauro, and a handful of others — who have gone public with their diagnoses.

The mainstream and social media response to this announcement has been interesting. A lot of Charlie’s fellow celebrities have expressed sympathy or applauded him for being “brave” in revealing his diagnosis publicly. Others have shaken their heads in disbelief. A vocal minority has even suggested that he only has himself to blame, that years of risky (and often public) behaviors made his infection with HIV inevitable.

I do have a lot of sympathy for Mr. Sheen. No one deserves to be infected with HIV, regardless of how irresponsible they act. I’m also glad that he is on treatment with antiretroviral drugs, both to protect his own health and to prevent transmitting the virus to his partners. There are, however, a number of things about his case that temper my response.

First and foremost is the fact that he hid his diagnosis for years, reportedly paying millions of dollars in hush money to those who knew so that they would keep his HIV status quiet. He might be brave in coming forward now, but for nearly five years he was a bit of a coward. I also fear that he is a self-serving jerk.

What do I mean by that? Doesn’t it make sense that Mr. Sheen would want to hide his HIV status in order to protect his family and his reputation? After all, stigma and discrimination against those living with HIV/AIDS is still rampant, even in 2015.

In the US, HIV is still seen as a disease of gay men, prostitutes and drug users, even though some of the highest rates of new infection occur among heterosexual women of color. Those who reveal their HIV status still run the risk of losing their friends, their family, their jobs, their insurance and health care, and even their homes. For those living overseas, the problem of stigma and discrimination is even worse, often culminating in rape, violence and even death.

Despite this, I don’t buy the argument that he was afraid to reveal his HIV status because it would damage his television and movie career. He damaged his career himself many years before his HIV diagnosis through increasingly outrageous public behaviors that eventually resulted in his being fired as the star of a top-rated television comedy. The main reason he is coming forward now, I suspect, is to court sympathy and to rehabilitate his image.

Charlie has also said that he is going public with his diagnosis now so that he can stop the so-called “shakedowns” by those who knew that he was HIV positive. But the mere fact that Charlie could pay these extortionists millions of dollars to keep his status quiet shows just how atypical his experience is. Charlie Sheen is wealthy and lives a life of privilege. He will never face the same challenges that the vast majority of those living with HIV/AIDS deal with on a day-to-day basis. For example, he has ready access to treatment and care, the average cost of which can run almost $20,000 a year. By contrast, there are millions of people for whom these drugs are unavailable, unattainable, or simply too expensive to buy. He has the money and access to keep his infection under control and to keep his partners safe, unlike the majority of those with HIV worldwide.

Don’t get me wrong. I am glad that Mr. Sheen has gone public about his HIV status, I only wish he’d done so sooner and in a more appropriate way. He could have used his announcement to talk about how lucky he is compared to most of those living with HIV/AIDS. He could have talked about the deplorable lack of access to HIV treatment and care worldwide, a problem that could be solved for less than the cost of one month of military spending in Afghanistan and Iraq. He could have even used his mistakes to warn others about the risks of HIV and the importance of being tested. But he did not.

I wish Charlie Sheen well, and I hope that this announcement marks a turning point in a tumultuous and troubled life. But we shouldn’t place Charlie on a pedestal, or make him the latest “poster boy” for those living with HIV/AIDS.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on November 19, 2015, and is available on the WAMC website.]

Posted in Celebrities, HIV/AIDS, Media, Uncategorized | Leave a comment

Let Them Eat Bacon!

That Earth-shattering noise that you heard last week was the sound of a billion bacon-lovers, myself included, screaming out in agony after the World Health Organization (WHO) classified processed meats as a definite human carcinogen and also classified red meat as a probable human carcinogen. After newspapers proclaimed that eating bacon was as dangerous as smoking cigarettes — one such headline in the Guardian, a British newspaper, proclaimed that “Processed Meats Rank Alongside Smoking as Cancer Cause” — carnivores around the world were left wondering if they would need to give up their beloved meaty treats.

The answer is no. What the WHO’s International Agency for Research on Cancer — a group of 22 independent public health and cancer experts — found after reviewing 800 studies looking at environmental and lifestyle factors that contribute to cancer is this: eating 50 grams or more of processed meats like bacon or sausage daily raises an individual’s lifetime risk of colorectal cancer by 18%. Similarly, regularly eating 100 grams of red meat is associated with a 17% increase in risk. Based on these findings, the WHO classified these meats as group 1 carcinogens, the same cancer-causing category as tobacco.

This does not mean that eating bacon is as bad as smoking.

First of all, the International Agency for Research on Cancer classifies potential carcinogens into five categories based only on the weight of evidence that they are causally linked to cancer, not on the degree of cancer risk. Group 1 carcinogens like tobacco and asbestos are known to cause cancer. Group 2A and 2B carcinogens are probably or possibly linked to cancer, respectively. Group 3 compounds are not classifiable and group 4 materials are not carcinogenic. Bacon and other processed meats are now considered group 1 carcinogens; the nitrates and nitrites used to cure these meats turn into cancer-causing N-nitroso compounds in the gut. But there are lots of things that are also in that same category of cancer-causing agents, including alcohol, birth control pills, smog and (gasp) sunlight.

So when you sit out on your sunny patio on a lazy Sunday morning having a Bloody Mary and eating a bacon-and-cheese omelet, you are exposing yourself to all sorts of cancer-causing agents. But the likelihood that any one of these things will cause you to get cancer is slim. This is what all the fear mongering about bacon and red meat gets wrong: the risk of developing cancer from eating processed meat is much lower than the risk associated with smoking. Moreover, the relative risk of a bacon lover getting colorectal cancer doesn’t amount to much in terms of their absolute risk of developing the disease.

Colorectal cancer, to which eating bacon and other processed meats is now linked, is the third most common form of cancer in the US. According to the American Cancer Society, about 130,000 US residents will be diagnosed with colorectal cancer in 2015. About 50,000 will die of the disease. For the average American adult with no familial history of this disease, the lifetime risk of developing colorectal cancer is 1.8%; about 1-in-55 people will be diagnosed with this form of cancer. Eating two slices of bacon every day increases that lifetime risk to about 2.0%. By contrast, having a relative with colorectal cancer increases that risk to 3.4%, and having two or more relatives with a history of colorectal cancer increases it to 6.9%.

What about smoking and lung cancer? Lung cancer is the most common (and most preventable) form of cancer in the US. This year, about 225,000 Americans will be diagnosed with lung cancer and 160,000 will die of the disease. But rates of diagnosis vary widely between smokers and non-smokers. An adult male who smokes is 25 times (or 2500%) more likely to get lung cancer than a non-smoker. Tobacco smoke, it turns out, is 140 times more carcinogenic than bacon.

This isn’t to say that colorectal cancer is not something to be concerned about. It’s a serious and often deadly illness. Treatment can include chemotherapy, radiation, and even colostomy (removing the colon and creating an opening in the skin of the abdomen through which digestive waste drips out). However, there are ways of reducing your risk of developing or dying of this cancer without foregoing bacon or red meat. You can eat a diet that is also high in fiber and antioxidant-rich foods, you can exercise regularly, and you can get screened by colonoscopy starting at age 50 (or even earlier if you have familial history of the disease).

Of all the things in this world that are likely to kill us, bacon should be the least of our worries. Don’t let the media, the WHO, or your vegan friends try to convince you otherwise.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on November 4, 2015, and is available on the WAMC website.]

Posted in Cancer, health literacy, Media, Public Health | Leave a comment

Reconsidering Cancer Screening Programs

In a public commentary that aired a little over a year ago, I caused quite a stir when I discussed the case of Amy Robach, the then-40-year-old ABC News correspondent who was diagnosed with breast cancer after receiving an on-air mammogram conducted as part of a Good Morning America story about cancer screening programs. Ms. Robach underwent a double mastectomy shortly after her diagnosis and is currently cancer free.

In that commentary, I raised concerns about the message that story presented to the American public about the utility of breast cancer screening programs. Specifically, I worried about the idea, promoted by organizations like the American Cancer Society and Susan G. Komen for the Cure, that all women should undergo screening as early as age 40. Best safe than sorry, right?

But not everyone recommends routine mammography for women starting at the age of 40 — including women like Amy Robach — unless they have a familial history of breast cancer. Those are the cancer guidelines issued in 2009 by the US Preventative Services Task Force, an independent and non-partisan group of healthcare experts. The Preventative Services Task Force concluded that most women should not undergo regular mammography until they are at least 50 years old.

This recommendation may seem counterintuitive. After all, breast cancer is a very serious public health issue. There are few families that it hasn’t touched, including mine. My aunt Kathryn recently passed after battling breast cancer for nearly two decades.

Breast cancer is currently the second leading cause of cancer death among American women. Nearly 250,000 new cases are diagnosed each year, and over 40,000 women die of invasive breast cancer. Moreover, for all of the hype around Angelina Jolie and testing for cancer-related genes like BRCA1, the vast majority of cases of breast cancer are spontaneous; that is, they occur in women with no familial history or genetic predisposition to breast cancer.

For women with no family history of breast cancer, the likelihood of developing it is 1 in 70 for those in their 40’s. That rises to 1 in 35 for those in their 50s, and to 1 in 25 for women in their 60’s. Overall, an American woman has about a 1 in 10 chance of developing breast cancer during her lifetime.

Those are pretty significant odds, so why shouldn’t women be screened annually for breast cancer? Why shouldn’t every woman in America have mammograms as early and as often as possible?

After reviewing decades of epidemiologic data, what the Preventative Services Task Force found was this: unless a woman has a familial history of breast cancer, routine mammograms before age 50 actually yield little benefit. For every 2,000 young women screened for breast cancer by mammography, only a single cancer-related death was prevented.

This is due in part to the fact that rates of breast cancer are lower among women in their 40s, and due to the fact that mammography is a notoriously inaccurate method of screening younger women. The breasts of younger women tend to have more glandular (milk-producing) and connective tissue, while older women have breasts that are more fatty. This glandular and connective tissue is mammographically dense, appearing white on the X-ray film. Abnormalities like tumors also appear white, making them difficult to detect.

As a result, mammography misses an average 20-30 percent of all cases of cancer in younger women (so called false negative results). For women in their 40s with no familial history of breast cancer, non-invasive screening methods — feeling for lumps or looking for other symptoms of breast abnormality — can be as effective at detecting nascent breast cancer as mammography.

Mammography also has a high rate of false positives: findings that look like cancer but are later determined to be benign after additional testing, including invasive biopsies. After just 10 yearly mammograms, over 50% of women will have at least one false positive test result. False positives are particularly common among younger women, again due to that they have mammographically denser breast tissue.

The psychological effects of a false positive test result can be profound. Hearing that you may have cancer can be emotionally devastating, as suggested in recent television commercials produced by the American Cancer Society. The effects of hearing that diagnosis can linger, even after subsequent tests rule out cancer. One study found that a significant number of women who received a false positive result suffered from anxiety and depression. In some women these symptoms continued for years, even after cancer had been definitively ruled out.

In fact, based on all of these data, the American Cancer Society recently changed its breast cancer screening recommendations to be more in line with those of the US Preventative Services Task Force. Previously, the Society recommended annual mammograms starting at age 40. They issued new guidelines this past Tuesday, recommending that women without a familial history breast cancer start having mammograms every year starting at 45, then every other year once they are 54. Other groups like Susan G. Komen for the Cure are still promoting earlier and more frequent screening.

Just like a false positive result, the differing recommendations from Komen, the American Cancer Society and the Preventative Services Task Force are likely to leave women anxious and depressed. Women and their doctors are now left to sort through conflicting messages about cancer screening and decide what is best for them based on their own personal circumstances, medical histories and prevention goals.

And that is the very point that I tried (and failed) to make in my original commentary. Cancer screening and prevention programs should not take a one-size-fits-all approach. The “worried well” might want to undergo frequent screening, so long as their desire to know whether or not they are cancer free is tempered with an understanding and appreciation of the potential harms associated with a false positive or overdiagnosis. Other women might choose to undergo less frequent screening, weighing the benefits of early diagnosis with the risks of mammography.

Screening saves lives, but not everyone needs to be screened. And not everyone needs to be screened early and often.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on October 22, 2015, and is available on the WAMC website.]

Posted in Cancer, Clinical Care, Public Health, Women | Leave a comment

Orphan Drug Economics 101

Last month, the cost of a drug called Daraprim, used to treat a potentially life-threatening infection in cancer and AIDS patients, increased 5500% overnight.

Daraprim is used to treat toxoplasmosis, a disease that is caused by the parasite Toxoplasma gondii. Infection with this ubiquitous parasite can cause flu-like symptoms and, in some cases, an encephalitis (or infection of the brain) that can result in blindness, brain damage or death. Babies can also be infected in utero if their mothers are exposed to the parasite. In those cases, known as congenital toxoplasmosis, infection of the child can lead to lifelong developmental disabilities, hearing and vision loss, and miscarriage or stillbirth.

The price of Daraprim increased from $13.50 to $750 per dose after a startup company called Turing Pharmaceuticals, founded by Martin Shkreli, a 32-year-old former hedge fund manager, bought the exclusive US marketing rights to Daraprim. They acquired these rights for $55 million from Impax Laboratories, which itself acquired those rights only five months earlier after acquiring a company called CorePharma.

The outcry from clinicians, medical organizations and patient advocacy groups was swift, particularly given that Daraprim costs only about $1 per pill to produce, is off patent, and has been on the market for over 60 years. For example, the Infectious Disease Society of America and the HIV Medicine Association condemned the price increase, declaring in a joint statement that, “this cost is unjustifiable for the medically vulnerable patient population in need of this medication and unsustainable for the healthcare system.” Similarly, advocacy groups like the Center for American Progress urged the federal government to start using its “march-in” rights to force licensing of drug patents to generic manufacturers, although that really wouldn’t apply for an off-patent drug like Daraprim.

Finally, Democratic presidential candidates Bernie Sanders and Hillary Clinton also spoke out, with Clinton unveiling a plan to cap out-of-pocket costs for drugs like Daraprim. The fifteen Republican candidates have been silent.

Turing CEO Shkreli was initially unapologetic, going so far as to call the price increase “altruistic” since the company plans to use the increased revenue to research new treatments for toxoplasmosis. He has since backed down, however, and has promised to lower the cost of Daraprim.

Now this is not the first time that Martin Shkreli has been linked to legal but morally questionable drug price practices. Just last year, Retrophin, a biotech company that Shkreli founded in 2011, acquired the rights to a drug called Thiola. He then jacked up the price of that drug, used to treat a chronic condition that causes kidney stones in patients, from $1.50 to $30 per dose (an increase in the annual treatment cost from $2,700 to $55,000 for patients with this disease).

So why can folks like Shkreli get away with this? They can in part because medications like Daraprim and Thiola are so called “orphan drugs”. Orphan drugs are used to treat rare illness or conditions, usually those that are so uncommon or rare that most drug manufacturers see little to no profit in developing and marketing treatments.

Let’s consider the case of Daraprim. The US market for this drug is actually quite small. Last year, American sales of Daraprim totaled only $5 million. While that would still amount to an 8% annual return on Turing’s $55 million initial investment, it is far below the billions of dollars in revenue and 30% profit margin of most blockbuster pharmaceuticals.

The reason for the small market is this: even though 1-in-6 Americans is infected with the parasite that causes toxoplasmosis — through the consumption of undercooked meat or unwashed vegetables or from their pets (cats readily transmit the parasite through their feces, which is why pregnant women or cancer patients should never clean the litter box) — most never develop symptoms. Only babies infected in utero and those who are immunocompromised because of extreme age or illness, such as cancer patients, transplant recipients or those living with HIV/AIDS, are at risk of developing the disease.

In 2014, less than 5000 people were hospitalized and 327 died from toxoplasmosis in the US. That same year, only 2000 prescriptions for Daraprim were written. Thus, there is little to no market incentive for other drug manufacturers to seek FDA approval to market generic versions of this drug and other orphan drugs.

Given this, it doesn’t make sense to respond to the Daraprim scandal by talking about patent march-in rights or proposing caps on out-of-pocket costs (which, when announced by Hillary Clinton on Twitter, caused the 144-member Nasdaq Biotechnology Index to drop by almost 5%). The problem is a lack of financial incentives for generic drug manufacturers to make orphan drugs like Daraprim or Thiola, such that the market for each of these drugs is monopolized by a single producer that can charge whatever the market will bear.

We need to get creative. We need to consider expanding laws like the Orphan Drug Act of 1983 — which provided pharmaceutical companies tax benefits, research subsidies, and extended patent protection and marketing rights for new drugs — in order to financially incentivize companies to produce generic versions of older orphan drugs. Without competition in the generic market, particularly for off-patent orphan drugs, the predatory acquisition and price spiking practices of pharmaceutical CEOs like Martin Shkreli will continue. It’s Economics 101, which, given the response to the current Daraprim scandal, many policymakers and advocates seem to have flunked.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on September 24, 2015, and is available on the WAMC website.]

Posted in Clinical Care, Pharmaceuticals, Policy, Regulation | Leave a comment

A Question of Conscience

On Tuesday, in front of a large crowd of supporters that included Republican presidential candidates Mike Huckabee and Ted Cruz, Kim Davis was released from federal custody.

As you all undoubtedly know, Kim Davis is the Kentucky county clerk who refused to issue marriage licenses following the U.S. Supreme Court ruling that legalized same-sex marriage. Kentucky law requires marriage licenses be issued under the authority of an elected county clerk like Ms. Davis. A devout Apostolic Christian, however, Kim is opposed to same-sex marriage. She believes that being forced to issue marriage licenses to same-sex couples would violate her religious liberties.

Although she has six deputy clerks working under her, Ms. Davis also refused to let them issue marriage licenses. Since her name appears on the marriage license itself, she believes that issuing these licenses to a same-sex couple constitutes her “stamp of approval” of something she believes to be a sin.

After two straight and two gay couples sued Ms. Davis for refusing to issue them marriage licenses, she was ordered to do so by U.S. District Judge David Bunning. Despite Judge Bunning’s order and despite her appeals to the Sixth District and U.S. Supreme Court being rejected, she remained defiant and was eventually jailed for contempt of court. She was released only after her deputy clerks began issuing marriage licenses this week, but could again face contempt charges if she interferes with the license process.

Now Ms. Davis isn’t the only government official who is refusing to issue marriage licenses to same-sex couples. At least two other clerks in Kentucky have also denied gay couples such licenses. Similarly, an Oregon circuit court judge has refused to marry same-sex couples. In all of these cases, these so-called public officials claim that doing so would be a violation of their First Amendment right to freely exercise their religious faith.

But is this really the case? While the First Amendment prohibits Congress from passing laws that prohibit the free expression of religious beliefs, for now at least this applies only to an individual’s personal life. Once you enter the public realm, all bets are off. The First Amendment does not bestow upon an individual the right to impose their religious values on others, or to exempt them from laws that might be inconsistent with their spiritual beliefs. The State of California, for example, prohibits discrimination on the basis of martial status. Despite the protections of the First Amendment, a Catholic landlord in that state cannot (at least not yet) refuse to rent an apartment to an unmarried couple simply because he believes living together is a sin.

Despite all of the media hoopla, political spin and claims of religious freedom, this is actually a straightforward case of a public official failing to do her job. Kim Davis is not a private citizen and her refusal to issue marriage licenses is not a matter of private conscience. She is the elected clerk of Rowan County, Kentucky. It doesn’t matter if Ms. Davis is a thrice-divorced Evangelical Christian opposed to same-sex marriage, a teetotaling Seventh Day Adventist opposed to the consumption of alcohol, or a celibate Quaker opposed to handguns. If her job requires her to issue marriage licenses, liquor licenses or gun permits, then she should do her job or resign. At least that is the situation for now.

Unfortunately, it is unlikely that Ms. Davis’s fifteen minutes of fame have been completely used up. Self-serving politicians like Mike Huckabee and conservative organizations like the Liberty Counsel will continue to use cases like hers to push their religious agenda, resulting in what legal analyst Dahlia Lithwick calls conscience creep, “the slow but systematic effort to use religious conscience claims to sidestep laws that should apply to everyone.”

Over the past 40 years, for example, the US Congress has passed laws like the Religious Freedom Restoration Act. That law requires that the federal government demonstrate a “compelling interest” before placing limits on an individual’s religious freedom. Twenty states have passed similar laws, and six other states have religious freedom legislation pending. This includes a newly introduced law in Kentucky that would protect county clerks like Ms. Davis who refuse to issue marriage licenses to same-sex couples on religious grounds.

We are already seeing the impact of these conscience claims and religious freedom laws on our personal and professional lives. For example, most states have laws that allow physicians and other health care providers to refuse to provide abortions. Some thirteen states also allow doctors to refuse to provide contraceptive services. In seven of those states, pharmacists can refuse to fill prescriptions for emergency contraceptives. Similarly, in many states doctors can refuse to treat gay and lesbian patients solely because of their personal, religious or moral beliefs. Secular for-profit companies can refuse to provide employees with access to federally mandated birth control if doing so would run counter to the religious beliefs of the owners. Private adoption and foster care agencies can even refuse to place a child in a single parent or same-sex home if that would violate the agency’s religious or moral convictions.

But this is wrong, and it leads the U.S. down a very dangerous path. As I see it, the problem with all of these conscience claims and religious freedom laws is this: they upset a long-standing balance between religious liberty and civil rights. As written, these new laws increasingly allow individuals and organizations to opt out of civil rights and anti-discrimination laws that they object to on spiritual grounds. Your religious freedoms will soon trump my civil rights. You will be able to deny me medical care, access to prescription drugs, refuse to serve me in a restaurant, refuse to rent me a hotel room, and deny me access to all sorts of public goods and services under the banner of righteousness.

That is what is truly unconscionable.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on September 10, 2015, and is available on the WAMC website.]

Posted in Celebrities, Discrimination, Homosexuality, Human RIghts | Leave a comment

A Delicate Balancing Act

There has been a lot of discussion about fertility treatments in both the popular press and the medical literature of late.

This discussion has been driven in part by debates about the Affordable Care Act, including questions as to whether or not it should cover fertility treatment for socioeconomically disadvantaged prospective parents. But the discussion has also been driven by recent announcements by companies like Facebook and Apple that they will begin offering cryopreservation of eggs to female employees as part of their health-insurance plans.

Adding to the debate over reproductive rights is a recent article in the Wall Street Journal, which purported that an increasing number of patients are seeking fertility treatment not because they are having difficulty getting pregnant but rather for the purposes of sex-selection. Specifically, they want to choose the sex of their child.

There are some valid medical reasons why prospective parents might want to choose the sex of their child. For instance, they may want to have a girl if they are known to be carriers of diseases like hemophila or Duchenne muscular dystrophy. These diseases are linked to genes that are located on the X-chromosome, and they affect males almost exclusively. The mother, who carries two copies of the X-chromosome, is unaffected. So are her daughters, although they too may be carriers of the trait. Her sons, however, only have one copy of the X-chromosome and thus have a 1-in-2 chance of inheriting these severe disorders.

But in the absence of a known risk of transmitting a serious X-linked disease, the only reasons for seeking fertility treatment for the purposes of sex-selection are likely to be social, and there in lies the issue. Should parents, particularly those with the financial resources to seek fertility treatment, be allowed to choose the sex of their child?

Not surprisingly, opinions about non-medical sex selection in the United States are mixed. The American Congress of Obstetricians and Gynecologists opposes the practice of non-medical sex selection. Renowned American bioethicist Art Caplan agrees with this position, worrying that allowing parents to choose the sex of their child is akin to “opening the door to a potential slope toward eugenics.” By contrast, the American Society for Reproductive Medicine takes a much more nuanced non-position position, concluding that physicians are under “no ethical obligation to provide or refuse to provide non-medically indicated methods of sex selection.”

There are a number of ethical, political, and philosophical reasons why people oppose non-medical sex selection, but the strongest argument against it is that it distorts the natural sex ratio and leads to a socially disruptive imbalance of the sexes when practiced on a large scale.

In many cultures, a variety of social, religious and socioeconomic factors result in a preference for boys. Particularly in Asia and the Middle East, this cultural preference, coupled with access to modern medical technologies, has lead to severe sex ratio imbalances in numerous countries.

In India, for example, thousands of girls are aborted, abandoned, neglected or killed after birth. The introduction of prenatal testing and selective abortion has also skewed the sex ratio to such an extent that there are now fewer than 800 girls for every 1000 boys in some rural regions of India. In response, the Indian government recently amended the Pre-Natal Diagnostic Techniques (Regulation and Prevention of Misuse) Act to include a ban on preconception sex selection techniques.

Similar sex ratio imbalances are seen in other countries. For instance, for every 100 females, there are 121 males in China, 122 males in Saudi Arabia, and 210 males in the United Arab Emirates. The long-term impact of these sex ratio imbalances is unknown, but some sociologists have warned that there will be increasing social unrest, leading to national and even international security problems, as these surplus male populations reach adulthood.

Like India, most of these countries have passed laws that restrict the use of sex selection technologies, either banning them outright or limiting their use to medical reasons. Similarly, most European countries have laws or policies that essentially criminalize sex selection for non-medical purposes. There are, however, few laws that regulate non-medical sex selection in the United States. Federal authority to regulate the use of artificial reproductive technologies is limited, and state-level regulations are limited to a handful of bans on the use abortion for sex selection.

While a few organizations and groups have recommended that the federal government consider new regulations that would limit the use of sex selective procedures to situations of medical need, in my opinion such laws are both unneeded and unwarranted. The federal government would have the authority to regulate or ban the use these technologies only if there were clear evidence that socially driven sex selection was going to upset the sex ratio in the United States and lead to social harms. This is not case.

Several surveys have found that a majority of Americans do not have a strong preference for children of a particular gender. Of those few survey respondents who did express an interest in choosing the sex of their children, most would do so primarily for family balancing: the desire to have a balanced sex composition among their kids. These results are supported by data from the fertility clinics themselves; the vast majority of patients who chose the sex of their child did so for family balancing purposes.

In the absence of any clear evidence of social harm from the use of sex-selective technologies in the United States, there is little justification for banning their use. Reproductive freedoms should only be limited if they have a negative effect on others, few Americans are interested in using available sex selection technologies, and most of those express no preference for one sex over another. Restricting the use of sex selection technologies would only lead to further erosion of our reproductive liberties, including the right to terminate a pregnancy or to make other reproductive choices.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 27, 2015, and is available on the WAMC website.]

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25 Years of the Americans with Disabilities Act: What’s Next?

This past Sunday marked the 25th anniversary of the Americans with Disabilities Act (or ADA). Enacted with broad bipartisan support, the ADA was the first (and last) significant piece of human rights legislation passed in the US since the landmark Civil Rights Act of 1964.

In many ways, the ADA mirrored the protections granted with the Civil Rights Act by outlawing discrimination based on physical or mental disability. Employers covered by the ADA cannot fire or refuse to hire someone based on a real or perceived disability. They are also required provide reasonable accommodations to job applicants and employees with disabilities, unless doing so would require considerable difficulty or expense. An employer might be required to provide a screen reader that uses a speech synthesizer or braille display to allow a blind or visually impaired worker to read text on a computer screen. They are not required, however, to hire a physically disabled worker for a position that requires a significant level of manual labor, such as stocking shelves in a warehouse.

Unlike the Civil Rights Act of 1964, the ADA also mandated significant changes in the physical environment in which all Americans currently live and work. Under Title III of the ADA, any building completed after January 1993 must be designed so as to be accessible to those with physical disabilities. Doorways must be wide enough to accommodate wheelchairs, bathrooms must have grab bars and sinks that can be used by someone in a wheelchair, elevators must have braille numbers for those with impaired vision, and a certain number of parking spaces must be set aside for those with disabilities. Buildings renovated after that time must also be made as ADA compliant as is “readily achievable.”

As anyone who has travelled overseas can attest (particularly those travelers with physical limitations), the environmental and cultural changes wrought by the ADA over the past twenty-five years have allowed those with disabilities to participate in American civil society at a level unmatched by any other country. Despite this, the nearly one-in-five Americans currently living with a disability still haven’t achieved what disability rights activist Jacobus tenBroek called “the basic right to live in the world.”

Consider, for example, the issue of employment. According to the US Bureau of Labor Statistics, the unemployment rate for those with disabilities is 15%, almost three times the national average despite the ADA’s antidiscrimination requirements and despite tax incentives to encourage employers to hire disabled workers. In fact, nearly two-thirds of working-age people with disabilities remain out of the work force, sometimes by choice but often because they cannot find jobs. This level of unemployment has remained unchanged since the passage of the ADA in 1990.

Compounding and perpetuating this problem is that fact that the educational needs of those living with disabilities often go unmet, creating an undereducated class of children and young adults with few marketable job skills. A piece of legislation separate from the ADA — the Individuals with Disabilities Education Act (IDEA) — was designed to combat this by ensuring that all children with disabilities receive free public education that is tailored to their individual needs. Despite this, disabled children are often seen as a burden or strain on our already overtaxed and underfunded public school system. Outside of special education programs, few teachers receive any formal training on how to educate disabled students. Moreover, there is a nationwide shortage in special education teachers and turnover among these highly trained educators is high. As a result, disabled students are rarely mainstreamed but instead remain segregated in overcrowded self-contained classrooms or even in separate schools, with limited access to the academic services and extracurricular activities provided to other students.

Finally, despite the increased public visibility of those with disabilities, overt and covert stigma and discrimination (particularly against those living with a mental illness) still remains a pervasive problem. Those of us with disabled friends have heard the many stories of how cab drivers refuse to pick them up, hotels turn them away because of a lack of handicap-accessible rooms, or store clerks dismissively treat them as though they were mentally incapacitated. News reports, television shows and so-called reality programs often strive to present those living with a physical disability as brave and inspirational people. But instead of raising awareness of the struggles that the physically or mentally disabled face, these stories most often inspire feelings of pity or relief (that unvoiced thought of “I’m glad that’s not me.”). Worse yet, those living with mental illness or other intellectual disabilities are often presented as comic relief, as with so-called “Crazy Ashley” on the last season of the sad reality show The Bachelor.

The twenty-fifth anniversary of the Americans with Disabilities Act is something we should all celebrate, while still looking for ways to improve how our society treats those living with disabilities. What too many people fail to realize is that nearly all of us will be disabled at some point in our lives, by injury, illness or simply because we have got older. The antidiscrimination and public accommodation requirements of ADA the benefit us all, and we need to stop treating those living with disabilities as people who are a burden on society. They do not need to be pitied, to be coddled, or to be neglected. Rather, they need to be seen as productive and valued members of society. They are our neighbors, our coworkers, our friends, our family … they are us and we are they.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 30, 2015, and is available on the WAMC website.]

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Giving Drug Users a Shot in the Arm

Every July I have the good fortune of spending a week at Fordham University in New York City, where I teach ethics and mentor fellows enrolled in a training program supported by the US National Institute on Drug Abuse (NIDA).

Even though I am a senior faculty member in that program, I suspect that I learn more from my students — researchers who work with drug users, commercial sex workers and other marginalized populations — than they probably learn from me. One of the things that I learned about this week was the resurgence of heroin use that has followed in the wake of the prescription drug epidemic.

I’ve written many times about America’s addition to prescription painkillers like OxyContin. First approved by the US Food and Drug Administration in 1995, that drug was a godsend to patients with severe and unremitting pain, such as those with late-stage cancer.

Unlike most short-lived analgesics that were available in US pharmacies at that time, OxyContin provided a potent dose of a painkilling opiate that was released over a long period of time. Instead of taking pills or taking shots every hour or so, patients prescribed OxyContin only needed one or two pills a day to get relief. Heavily promoted by pharmaceutical reps, within a few years OxyContin became one of the most overprescribed (and most abused) of the prescription drugs.

This is because what made OxyContin so useful for cancer patients — the large opiate dose — also made it attractive to drug users. By grinding up and inhaling or injecting the pills, they could get a very intense and very quick high. Just a few short years after the drug was first approved for use, prescription drug overdose death rates in the US more than tripled.

In response, state and federal drug enforcement agencies have cracked down on the use of these pain medications. In 2012, for example, the New York State legislature passed a law called the Internet System for Tracking Over-Prescribing/Prescription Monitoring Program (ISTOP/PMP).

That program requires physicians to check the State-run Prescription Monitoring Program to look for evidence of opiate abuse before prescribing a drug like OxyContin to a patient. Similarly, drug companies have begun manufacturing formulations of the drug that are harder to abuse, such as a gel or paste.

These efforts to stem the tide of prescription opiate abuse have been fairly successful, with the number of prescription-drug overdoses declining in the past couple of years. But the crackdown has driven addicts to seek other ways of getting high, fueling a new epidemic of heroin abuse across the country. Three-fourths of heroin users switched to the drug after first becoming addicted to prescription painkillers.

Deaths from an overdose of heroin, largely non-existent in recent years, have started to surpass other drug-related fatalities in many regions of New York and the rest of the US. Nationwide, deaths from prescription abuse have dropped an average of 5 percent annually but heroin overdose deaths have surged by 35 percent.

Outside of salacious news reports or commentaries like this, however, the new heroin epidemic (like the preceding painkiller epidemic) is largely hidden but surprisingly pervasive. Most of us probably assume that it’s the commercial sex workers in the Bronx, the homeless sleeping in Central Park, or the unemployed twenty-something living in a remote trailer in the Catskills that are addicts. But that’s not the case.

In fact, heroin addiction seems to cut across all social, racial and economic groups. Addicts are no longer the stereotypical “junkies” portrayed in the movies. Heroin and painkiller abuse affects all New Yorkers, regardless of wealth, education, or ethnicity. The financial analyst who lives next door to you might have become addicted to the painkillers given to him for his bad back. When he could no longer convince his physician to renew his OxyContin prescription, he started using heroin to stave off the symptoms of withdrawal. He’s just as likely to be an addict as the unemployed veteran who lives in a downtown homeless shelter, but more able to hide his addiction from prying eyes.

So how can we address this hidden epidemic, particularly given the fact that heroin is one of the most addictive and habit-forming drugs? It’s time to end the so-called “War of Drugs.” That war’s one success has been the crackdown on the use of prescription painkillers, and has itself driven the surge in heroin use.

We can start by reducing mandatory state and federal sentencing minimums for minor drug charges like possession of heroin for personal use. This is not to say that we shouldn’t arrest and imprison the dealers, but law enforcement should go after those who sell and distribute large quantities of drugs. The addicts should instead be referred to drug treatment center.

Moreover, we can bolster current drug treatment programs, by making drugs like methadone, buprenorphine, and naltrexone widely available, by destigmatizing their use and by providing psychological support and recovery services at little to no cost. Even in urban communities like New York City, let alone bucolic rural communities in upstate, there are few doctors and few clinical that can provide comprehensive drug treatment services.

The new heroin epidemic isn’t a criminal issue. Rather, it’s a public health problem. We need to stop treating addiction as a crime and start treating it as an illness. Drug users are victims not criminals, and they are deserving of our compassion and our help.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 16, 2015, and is available on the WAMC website.]

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A Glossip v Gross Injustice

After years of disappointment, political progressives like myself had a lot to cheer about this past week. The US Supreme Court, which in recent rulings has struck blows against organized labor and exempted some for-profit businesses from the contraception mandate of the Affordable Care Act, handed the left wing a number of stunning victories.

In King v. Burwell (576 U.S. _ (2015)), for example, the Supreme Court upheld a key provision of the Affordable Care Act by allowing individuals who purchase insurance on the federal exchange rather than through state-run programs to receive taxpayer subsidies. The Court also extended legal marriage nationwide to same-sex couples (Obergefell v. Hodges, 576 U.S. _ (2015)), and it allowed Arizona (and other states) to combat gerrymandering by establishing independent commissions to draw congressional and state legislative districts (Arizona State Legislature v. Arizona Independent Redistricting Commission, 576 U.S. _ (2015)).

One important ruling that flew under the radar, however, was the Court’s decision in Glossip v. Gross (576 U.S. _ (2015)). By a 5-4 margin, the Justices upheld the use of a controversial sedative called midazolam for execution of death row inmates.

Lethal injection is the preferred method of execution in the 32 states that allow the death penalty. It is also the method used by the federal government. Until recently, the approach used for lethal injection has remained largely unchanged. Known as the Chapman protocol, after the method first proposed by Oklahoma’s state medical examiner Jay Chapman, it involves the use of three drugs.

First, a barbiturate like sodium thiopental is used to render condemned prisoners unconscious and pain free. A paralytic like pancuronium bromide is then used to immobilize the condemned prisoner and suppress respiration. Finally, potassium chloride is used to trigger cardiac arrest and stop the inmate’s heart.

As I’ve written about before, there are numerous questions as to whether the Chapman protocol actually prevents the “unnecessary and wanton infliction of pain” required by the Eighth Amendment to the US Constitution. Despite this, the courts have repeatedly held that the use Chapman’s three-drug execution method is constitutional, most recently in the 2008 US Supreme Court case of Baze v. Rees (553 U.S. 35 (2008)).

But states that allow lethal injection are now deviating from the Chapman protocol, the particular method of execution that was upheld in Baze v. Rees. This is largely because sodium thiopental and similar drugs (like sodium phenobarbital) are in increasingly short supply. The last US manufacturer stopped making the drug in 2011. That same year, imports from Europe halted after the European Union imposed a ban on export of drugs that can be used for capital punishment. Finally, in 2012, the federal government stopped the importation of sodium thiopental from the few remaining overseas manufacturers because those companies failed to meet US Food and Drug Administration (FDA) standards.

As a result, state-run corrections agencies are forced to use other sedatives to render condemned prisoners unconscious and insensate, such as midazolam. Four states — Arizona, Florida, Ohio and Oklahoma — currently use midazolam in their lethal injection protocol. Another state, Missouri, uses it as a sedative before the execution officially begins. The five other states that are actively engaged in the execution of death-row inmates do not use midazolam, but are considering it.

Midazolam itself has no analgesic or pain-relieving properties. It is only a sedative, and there are significant questions about how well it works in lethal injection protocols. In 2014, for instance, midazolam was used in a total of 15 executions. In three of those executions, despite being rendered unconscious initially, the condemned prisoners gasped for air, moaned, writhed and gritted their teeth in apparent pain during the administration of drugs to stop their hearts.

If, as these examples suggest, midazolam does not produce a sufficiently deep coma-like state to shield prisoners from pain, then its use would violate the Eighth Amendment’s prohibition against cruel and unusual punishment. In fact, this was the basis of the plaintiffs’ claims in Glossip v. Gross, supported by a friend of the court brief filed by a group of pharmacology professors. That brief unequivocally stated that there is “undisputed evidence that midazolam cannot reliably ensure the ‘deep, coma-like unconsciousness’ required where a State intends to cause death with painful drugs”. This is also the reason why the FDA has not approved the use of midazolam as the sole drug to produce and maintain anesthesia during surgery.

Unfortunately that was not enough for the Supreme Court. Writing for the majority, Justice Samuel Alito stated that the three death-row inmates who brought the case failed to prove that midazolam doesn’t alleviate excessive pain and failed to identify an alternative and acceptable method of execution.

In my view, this decision misses the point. The majority opinion willingly ignores a wealth of empirical data and anecdotal evidence that midazolam does not induce unconsciousness reliably. Moreover, the burden of proof shouldn’t be on the plaintiffs. They shouldn’t be required to demonstrate that use of midazolam for lethal injection creates an “objectively intolerable risk of harm.” Rather, the state should be required to demonstrate that midazolam is capable of rendering an inmate completely unconscious and is thus appropriate for its intended purpose in lethal injection protocols.

Regardless of what you may think about the death penalty, the Eighth Amendment is quite clear. All prisoners, no matter how heinous their crimes, have the inalienable right to be free of “cruel and unusual punishments.” This includes guaranteeing that state-sanctioned executions are free of unnecessary and wanton pain.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 2, 2015, and is available on the WAMC website.]

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X-ing out Title X

Earlier this week, the US House of Representatives Committee on Appropriations released its 2016 budget proposal for funding the Department of Health and Human Services. As part of that proposal, the Republican-dominated Committee recommended eliminating funding for the Title X (ten) family planning program.

For those of you who may not be familiar with the Title X family planning program, it is the only federal program that provides family planning and reproductive health services for low-income Americans. Enacted in 1970 with broad bipartisan support and signed into law by Republican President Richard Nixon, the program subsidizes nearly 4,200 clinics nationwide. Those clinics provide contraception and family planning services at little to no cost for individuals who earn less than $25,000 a year. Most patients are women. A disproportionate number are women of color.

All told, over 5 million people use Title X-funded clinics annually. According to the Guttmacher Institute, a non-profit organization that works to advance sexual and reproductive health and rights, these clinics serve one in five American women who seek birth control counseling. Over 15% of all the contraceptive prescriptions written and a third of the family planning supplies used in the US come via these clinics, preventing an estimated 1.2 million unintended pregnancies yearly.

More importantly, these millions of women (and men) don’t just use these clinics for family planning. That’s because Title X-supported clinics provide more than just contraceptive services. They provide a variety of health-related services, including: screening for breast cancer, cervical cancer and testicular cancer; testing and treatment for sexually transmitted diseases; prenatal, postpartum and well-child care; and even preventative medical exams. Over the past 20 years, for example, these clinics have conducted nearly 60 million Pap tests, providing early detection of as many as 55,000 cases of invasive cervical cancer.

The services provided by Title X clinics don’t just prevent unwanted pregnancies, these services save lives. This comes at the modest annual cost of just $60 per patient. Last year, the federal government spent a mere $300 million on the Title X family planning program. That same year, the services provided by Title X clinics saved the government an estimated $2.1 billion in downstream health care costs. By contrast, the fiscal conservatives who control Congress appropriated over $4 billion for unnecessary pork barrel projects, including $120 million to upgrade the M1 Abrams tank despite the objections of military officials. Over 2,000 of those tanks are currently sitting idle in the California desert as the Pentagon has no use for them.

For many low-income Americans, Title X-funded centers may be the only place they receive care. One survey found that nearly two-thirds of women who received services at a Title X-supported clinic had no other source of primary medical care.

So why are Republicans so eager to do away with a modestly priced but widely successful program? The reason can be summed up with one word: abortion. Specifically, the Title X family planning program subsidizes some Planned Parenthood clinics that also offer abortion services. Planned Parenthood is the largest single recipient of Title X funding, and that is enough for conservative lawmakers to put the program to the hatchet.

Keep in mind that federal law prevents Title X funding from being used to pay for abortions. Also keep in mind that many Planned Parenthood clinics do not provide abortion services; abortion accounts for only 3% of the total number of procedures performed at all Planned Parenthood clinics. So the logic behind the decision to cut Title X funding is somewhat convoluted: the public money that is provided to a large number of clinics for family planning services frees up other private money at a small number of clinics that can then be used to pay for abortion. The absurdity of that line of reasoning makes my head hurt.

This line of reasoning is also flawed. If the goal of Republican congressmen is to prevent abortion, then they should increase funding for Title X rather than cut it. As I mentioned earlier, the family planning and contraceptive services provided by Title X-funded clinics prevent an estimated 1.2 million unintended pregnancies yearly. Should these unwanted pregnancies occur, statistically they would result in about 200,000 miscarriages, 600,000 births, and 400,000 abortions. The number of abortions in the US will actually increase should the Title X family planning program be scrapped.

There will be other deleterious effects as well. Many Title X-funded clinics provide desperately needed health care services to millions of poor men and women, including pregnancy testing and prenatal care, cancer screening, HIV testing and education, and testing and treatment for sexually-transmitted diseases.

Without these subsidies, many of these clinics will be forced to close. In those communities, we can expect to see increasing rates of maternal morbidity and of negative birth outcomes like low birth weight, premature birth, and infant mortality. We can also expect to see outbreaks of HIV and other sexually transmitted diseases, as recently happened in Scott County, Indiana when that county’s HIV testing clinic closed.

The personal and economic costs of cutting Title X are likely to be staggering, particularly at a time when conservative lawmakers are also actively trying to dismantle the Affordable Care Act, eliminate funding for comprehensive sex education and teen pregnancy prevention programs, and give employers the right to deny employees access to birth control. Unfortunately, these ideologues are likely to succeed, leaving 5 million Americans without care and the rest of us footing the tab.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 18, 2015, and is available on the WAMC website.]

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