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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There’s Something About Caitlyn

Unless you’ve been living under a rock or on a social media fast these past couple of weeks, you’ve undoubtedly seen the pictures of Caitlyn Jenner on the cover of Vanity Fair. No surprise that she appears in the June issue, the same month that celebrates lesbian, gay, bisexual and transgender (LGBT) pride.

These are, of course, the first public photographs of Ms. Jenner since March 15, when she underwent facial-feminization surgery as part of her gender transition process. Olympic medalist and former Kardashian patriarch Bruce Jenner is now living her life as a woman.

The pictures, taken by famed celebrity photographer Annie Leibovitz, are stunning. Accompanying a 22-page interview that chronicles Ms. Jenner’s lifelong struggle with her gender identity, those images portray her in a way that no one expected: as a beautiful Hollywood starlet who looks not unlike actress Jessica Lange or former supermodel Janice Dickenson. Caitlyn is now the cover girl for many transgendered individuals, providing a very public face to an often ridiculed, stigmatized and maligned group.

Sadly but not unexpectedly, public reaction to the photos has been mixed. While many people have written, recorded, posted and tweeted messages of support, a few others have been less kind. Controversial pundit Bill O’Reilly and others who appear on the conservative Fox News network, for example, were quick to fire off all sorts of derisive comments and make numerous transphobic jokes. Similarly, former Arkansas governor and Presidential candidate Mike Huckabee told a campaign crowd that he’d wished he’d found his transgender side in high school so that he “could have used the showers in the girls’ locker room.”

Despite dismissive, mocking and even hostile comments like these, this open and largely public discussion of Caitlyn Jenner’s transition is, mostly, a good thing. Until recently, the transgender community was largely relegated to the margins of American society.

The actual number of transgendered people living in the US is still largely unknown. This is in part because most surveys of LGBT individuals ask about sexual orientation rather than gender identity, and in part because many transgendered people still live their lives in the shadows because of the stigma and discrimination that they would otherwise face.

Only a few states have laws that protect the rights of transgendered men and women. Most live in areas of the country where they can be fired from their jobs or denied housing simply because of who they are, resulting rates of unemployment and poverty that are nearly four times the national average. They can also be denied access to the basic services that many of us take for granted, including medical care, dental care, service in shops and restaurants, and even the use of public restrooms.

Worse yet, as the National Transgender Discrimination Survey found, transgender men and women experience epidemic rates of violence and assault. All most transgendered people have been verbally assaulted, more that half have been physically beaten, and over a quarter have been raped. No surprise then that the transgendered community has some of the highest rates of alcoholism, substance use, depression and suicide.

Caitlyn could help change that. By joining other transgendered individuals in the public limelight — such as Emmy-nominated actress Laverne Cox and musician Chaz Bono — Ms. Jenner provides yet one more positive role model for closeted transgendered individuals. She may even inspire some of them to “come out.”

She may also encourage many Americans to reconsider their open hostility to the transgendered community. We need to start recognizing and respecting the rights and dignity of our transgendered brothers and sisters, rather than proposing and passing local and state ordinances that allow discrimination against members of the LGB and particularly T community under the banner of religious freedom and family values.

That said, I want to caution us all against thinking that Ms. Jenner’s experience is typical. It’s not. Her story is not representative of the challenges and barriers that most transgendered individuals face. As Kris Hayashi, Executive Director of the Transgender Law Center, recently commented, “Any time someone is able to live fully and safely as their authentic self, it is a beautiful thing that we should celebrate. We can celebrate, though, while recognizing that Caitlyn’s experience is dramatically different from that of most transgender people.”

Caitlyn’s (nee Bruce’s) celebrity — extending many decades into the past as an Olympian, actor, spokesman and most recently as a reality television star — gives her a level of cachet and prestige that most people (transgendered or not) lack. She lives a life of privilege. She will never experience, for example, the challenges in finding employment and housing that the majority of transgendered people face.

She similarly has the money to access medical treatments and resources that allow her to live as a woman while meeting socially-established stereotypes of femininity, as evidenced by the numerous comments on her newfound beauty. Thanks to her wealth and celebrity status, Ms. Jenner is largely insulated from the insidious discrimination and harassment that other transgendered men and women deal with on a daily basis.

This is not to say that we shouldn’t, as Mr. Hayashi of the Transgender Law Center suggests, “celebrate” Caitlyn’s transition. We should, and we should encourage others like her to live openly and without fear. But the way to do that is not to remark on Ms. Jenner’s beauty or to talk about our love of the hit TV show Transparent.

Rather, we need to have an honest and public dialogue about what it means to be transgendered in America, and take a long hard look at our preconceptions and our prejudices towards those who struggle with gender identity. Only then can we achieve the social and political change that will allow people like Caitlyn to flourish.

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

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Patents over People

At a press conference in New York City yesterday, a group known as the Initiative for Medicines, Access and Knowledge (I-MAK) announced that it was filing legal challenges in Argentina, Brazil, China, Russia and the Ukraine to invalidate patents on the hepatitis drug Sovaldi. That drug was developed and is sold worldwide by the pharmaceutical company Gilead Sciences.

The disease that Sovaldi treats, hepatitis C, is a life-threatening illness caused by a blood-borne virus of the same name. Approximately 150 million people worldwide are infected with hepatitis C virus, with most of those living in poorer regions of the world, particularly Asia and Africa. This is more than five times the number infected with HIV. Most of those living with hepatitis C are undiagnosed. Fewer still have access to care and treatment.

This is in part because acute infection by the hepatitis C virus is usually asymptomatic, although some people may develop fever, fatigue, nausea and, in a few cases, the jaundice (or yellowing of the skin) characteristic of hepatitis. About of quarter of patients will clear the virus from their bodies, but the majority of those exposed will develop chronic hepatitis C infection. In individuals with chronic infection, the virus slowly causes long-term damage to the liver. Around one third of those with chronic infection will develop liver cirrhosis or cancer within 20 years.

Until recently, the only cure for hepatitis C was treatment with a combination of antiviral drugs like ribavirin and interferon, often given as injections or intravenous infusions three times weekly over the course of a year. This course of treatment was effective in less than 50% of patients, and many suffered from debilitating side effects. Moreover, the nature and intensity of treatment made it impractical for most patients living in the countries with less developed health care systems. For the vast majority of people infected with hepatitis C, both in the US and in other parts of the world, a cure was thus largely out of reach.

In that context, the development of Sovaldi (and more recent drugs like Harvoni and Viekira) was a godsend. Sovaldi is a once a day pill which, when taken in combination with oral ribavirin for twelve weeks, effectively cures 90% of patients. Many doctors also prescribe Sovaldi in combination with another oral antiviral drugs, with similar effectiveness and fewer side effects. In addition to being more effective, the use of oral-only formulations also makes this drug more accessible to patients who live in less developed regions. Patients no longer require intravenous treatment with hard-to-procure and hard-to-deliver drugs like interferon.

So why is there a brewing controversy about this miracle drug? Why is I-MAK challenging Gilead’s patents on Sovaldi in Argentina, Brazil, China, Russia and the Ukraine? The answer is quite simple: money.

Sovaldi is an incredibly expensive drug. Gilead charges nearly $1,500 for a single pill, so a twelve-week course of treatment can cost a patient (or their insurance company) over $100,000. This is well beyond the means of most of those living with hepatitis C worldwide.

Recognizing this, Gilead does allow drug manufacturers in India to make a generic version of Sovaldi, which is sold for less than $10 a pill to patients in 91 low-income countries. However, Gilead does not allow generic Sovaldi to be sold in Argentina, Brazil, China, Russia and the Ukraine, relatively wealthy countries where nearly 40 million people infected with hepatitis C currently live. Rather, in those countries, Gilead sells the brand-name drug to patients and health agencies at a slightly reduced cost of approximately $100 a pill.

That is a generous discount, but one that would still cost the cash-strapped governments of those five countries over $250 billion if they were treat all of the 40 million people who need care. Given this, physicians and policymakers in Argentina, Brazil, China, Russia and the Ukraine instead have to make tough decisions about who to treat and who to let die from hepatitis C-related liver failure.

This is why I-MAK, in collaboration with local patient advocacy groups, is pushing those governments to break Gilead’s existing patents on Sovaldi. This would allow drug manufacturers in of Argentina, Brazil, China, Russia and the Ukraine to make and sell their own generic version of Sovaldi.

But is this fair? It costs billions of dollars for a company like Gilead to develop, test, and get approval to sell a single drug like Sovaldi. That money has to come from somewhere, and it is the profit from selling these blockbuster drugs that allows pharmaceutical companies to recover those costs. These profit also provide drug manufacturers with the financial incentive to develop the dozens of miracle drugs that have come on the market over the last thirty years.

At some point, however, those costs (and more) have been recouped. Gilead has earned over $15 billion this year alone from selling Sovaldi in the US and overseas, more that enough to cover the costs of developing and testing this drug. There’s a fine line between maintaining a healthy profit margin versus exploiting the misery and suffering of those living with hepatitis C.

I have a good deal of respect for pharmaceutical researchers (and the companies they work for), and I believe that intellectual property rights should be recognized. But sometimes it takes a threat like this to get those companies to do the right thing.

I-MAK’s efforts to invalidate Gilead’s patents may not be fair, legal or even successful, but they may force that company to offer better price reductions on Sovaldi to patients who live in resource-poor regions of the world. This same approach was used successfully some years back to get companies like Gilead to drop the price of anti-HIV medications, allowing millions of people living with HIV/AIDS worldwide to finally have access the treatment they needed. It’s time to offer the same hope to those living with hepatitis C.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 21, 2015, and is available on the WAMC website.]

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Love (and Sex), Canadian Style

There’s a controversy brewing to the north of us. After Ontario Premier Kathleen Wynne announced that the most-populous Canadian province would update the sex-education curriculum used in public schools — modernizing its sex-ed materials to include discussions about gender identity, sexual orientation, masturbation and contraception — conservative politicians and pundits were quick to condemn the changes.

Religious groups and right-wing organizations like the Campaign for Life Coalition and Parents As First Educators also raised their voices in protest, citing concerns that the new curriculum was too extreme and violated personal values and parental rights. Some groups even called for a one-week strike, asking parents to pull their kids from school as an act of protest against the revised sex-ed curriculum.

In response, Planned Parenthood of Toronto started a Twitter campaign asking people to weigh in on why they supported the changes using the hashtag #SupportSexEd. Faster than one of the Canadian Clippers that chilled the Northeast to its core this past winter, responses to that plea flooded in. Within 24 hours, tens of thousands of people had tweeted their support of (or opposition to) comprehensive sex education in Canada (and elsewhere across the globe).

Canadian social media is now being consumed by an intense debate about sex and sex-ed. But this debate isn’t about whether sex education should be offered. Rather, it’s about how comprehensive the curriculum should be.

That’s a good thing. Those of us who live to the south could learn something from our neighbors. The sad truth of the matter is that American youth learn very little about sex and sexuality in public schools.

According to the Guttmacher Institute, a non-profit organization that works to advanced sexual and reproductive health and rights, only 22 states and the District of Columbia mandate sex education in all public schools. New York is not one of these states. Nor are many of our neighbors, including Massachusetts, Connecticut and Pennsylvania. Similarly, the three most populous states in the Union — California, Texas and Florida — do not require sex-ed to be part of the public curriculum.

Even when sex education is offered, much of what is taught is riddled with half-truths or bald-faced lies. Only 13 states require that the information provided be medically or scientifically accurate. Again, New York is not one of these states. A recent Congressional study catalogued many of the unproven claims, questionable conclusions or outright falsehoods that students have been taught in high school sex-ed classes across the country. These include such so-called “facts” as: use of contraception and abortion leads to depression and suicide, that condoms are ineffective in preventing the spread of HIV, and that touching another person’s genitals can result in pregnancy.

Our sex education curriculum is also full of holes. Thirty-seven states require that sex education, if it is offered, provide an abstinence-only message that emphasizes the importance of sex within marriage. In more than half of those states, teachers are forbidden to discuss contraception.

Among that illustrious list of states are the five that have the highest rates of teen pregnancy in the US: Arkansas, Mississippi, New Mexico, Oklahoma and Texas.

These states also tend have higher than average rates of sexually transmitted infections like gonorrhea and syphilis. It should come as no shock then that a west Texas school district recently made the national news for an outbreak of chlamydia among its students. One in 15 high school students in the Crane Independent School District, just outside of Odessa, tested positive for that sexually transmitted disease. Not surprisingly, Crane is one of the districts in Texas that offers no sex education classes to its students.

None of this makes any sense. Sex education is not the same as teaching kids to have sex. In fact, numerous studies have shown that teens are no more likely to engage in sex if they receive sex education than if they do not. About 50% of all teens report having sex before they graduate, regardless of whether or not their district offers sex-ed as part of the high school curriculum. More importantly, similar studies have found that rates of pregnancy and sexually transmitted infections are actually lower among teens that receive comprehensive sex education, as compared with those who receive abstinence-only education or those who get no sex-ed at all.

Today’s teens don’t learn about sex in the classroom. They learn about it by watching television, by going to R-rated movies, and by surfing the Internet. Sexually explicit material is ubiquitous in modern life. That’s not going to change.

What can change is our attitude towards sex education. Providing comprehensive sex-ed in our public schools — education that includes a frank and open discussion of sexuality, of contraception and pregnancy, and of sexually transmitted diseases — won’t encourage teenagers to have sex. Their hormones will do that. Our teens are going to have sex anyway. What comprehensive sex education in our public schools can do is encourage them to have sex responsibly.

Comprehensive sex education also doesn’t take away an individual’s right to decide what values and morals around sexuality they want to teach their kids. Rather, it is a way to encourage teens and parents to have a frank and open discussion about sex, and what sex means within the larger context of their culture and their religion.

It’s time we started acting like adults (or Canadians) and mandate that our public schools provide comprehensive sex education to all adolescents.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 7, 2015, and is available on the WAMC website.]

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What’s the Matter with Indiana?

With all of the hoopla over Indiana’s recent enactment of its Religious Freedom Restoration Act (RFRA), a poorly-written law that gives businesses and individuals broad license to discriminate against members of the lesbian, gay, bisexual and transgender community, another travesty unfolding in that state has gone overlooked. Specifically, Indiana is experiencing the largest outbreak of HIV in the Hoosier State’s history, an epidemic sparked in part by partisan politics.

Just last week, Indiana Governor Mike Pence declared a public health emergency in Scott County after 79 people tested positive for the virus that causes AIDS, an outbreak fueled by rampant injection drug use. In past years, that rural county saw an average of only 5 new cases of HIV infection annually.

So what does partisan politics have to do with this public health emergency? Plenty. Consider, for example, Indiana’s ban on needle exchange programs.

HIV, hepatitis C (HCV), and other blood borne diseases are readily spread between drug users who share contaminated injection equipment. One of the easiest ways to prevent the spread of HIV among injection drug users (IDUs) is a needle exchange program, which allows drug users to obtain sterile syringes, hypodermic needles, and other paraphernalia without a prescription and at little to no cost.

Dozens of studies conducted in the United States and overseas have shown that needle exchange programs work extremely well. Among IDUs in New York City, for example, rates of HIV dropped four-fold when needle exchange programs were first introduced. In fact, the effectiveness of these programs in reducing rates of HIV infection among injection drug users is so great that US Office of National Drug Control Policy, the US National Institutes of Health, the US Surgeon General, the US Centers for Disease Control and Prevention, the American Medical Association, the World Health Organization and the United Nations Office on Drugs and Crime all encourage their use.

Despite this, needle exchange programs are still banned in 24 states, including Indiana. What is the argument that predominantly conservative politicians use to oppose these programs? That they encourage illicit drug use. But even this claim lacks credence. One study conducted in San Francisco found that drug use dropped three-fold among IDUs who used that city’s needle exchange program. Most of these programs also provide peer education and referrals to treatment clinics, helping participants break free of their drug addiction.

Thankfully, Governor Pence finally (sort of) gets it. He recently announced a 30-day moratorium on enforcing Indiana’s ban, stating that “I do not support needle exchanges as anti-drug policy, but this is a public health emergency. I’m going to make a decision on the best science and the best way to stop this virus and this outbreak in its tracks.” Public health officials in Indiana can now implement a needle exchange program should they want to. While it is too late for the 79 newly infected residents of Scott County, such a program may slow the spread of HIV to other Hoosiers.

Indiana’s now-suspended ban on needle exchange programs aside, politically motivated spending cuts are also to blame for the outbreak in Scott County. That county has been without a HIV testing clinic for nearly two years, the direct result of partisan wrangling about abortion.

Until 2013, the Scott County Planned Parenthood clinic was the sole provider of HIV counseling and testing in that rural community. That facility closed after Republican lawmakers cut state funding of Planned Parenthood because of their opposition to abortion. As a result, five clinics run by Planned Parenthood of Indiana & Kentucky were shuttered, including the one in Scott County.

None of those five now-closed clinics provided abortion services. Rather, like most Planned Parenthood clinics nationwide, they mainly provided other desperately needed health care services to poor men and women. Those services included family planning counseling; pregnancy testing and prenatal care; screening for breast, cervical and testicular cancer; testing and treatment for sexually-transmitted diseases; and HIV testing and education. Those services are now largely unavailable to the economically disadvantaged residents of Scott County.

In their zeal to demonize and defund Planned Parenthood over abortion, a still legal medical procedure that accounts for less than 3% of the total services that organization provides, Indiana lawmakers thus created the very conditions needed for an outbreak of HIV to occur.

Sadly, those conditions are being replicated elsewhere. Just last week, for example, Texas lawmakers announced a plan to cut $3 million from state-run HIV prevention programs and redirect the funds to faith-based abstinence-only education projects. That state currently ranks third nationwide in new HIV diagnoses. It is now likely to claim the top spot, a rather dubious honor.

So long as conservative politicians continue their efforts to defund Planned Parenthood, continue their ideological opposition to needle exchange programs, and continue to prioritize the needs and goals of their corporate donors over the health and welfare of their own citizens, outbreaks like the one in Scott County will continue to occur. I only hope that voters finally sit up and take notice of the very real public health threat that these policies present.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on April 9, 2015, and is available on the WAMC website.]

Posted in Crime, HIV/AIDS, Policy, War on Drugs | Leave a comment

Happy Birthday Obamacare!

This week, before a crowd of students attending the obligatory Monday morning convocation at Liberty University, Ted Cruz announced that he was running for President in 2016. This makes Mr. Cruz, a first-term senator from Texas, the first major Republican to officially declare their candidacy.

That Senator Cruz made this announcement on the 5th anniversary of the Affordable Care Act’s signing into law is not surprising. Mr. Cruz has made the repeal of Obamacare (as the Affordable Care Act is colloquially known) a cornerstone of his campaign. Curiously enough, the Senator will also soon be a beneficiary of this program.

Mr. Cruz’s wife Heidi, through whom he previously had health insurance, has taken an unpaid leave of absence from her job as a managing director for Goldman Sachs for the duration of the presidential campaign. The Cruz family will now obtain coverage through the federal insurance exchange program, and will receive the government health insurance subsidy provided to all lawmakers and congressional staffers under the Affordable Care Act.

A lot of pundits have called that hypocritical. I don’t quite see it that way. It’s not hypocritical to follow (and even benefit from) a law that you oppose and are working to repeal. It’s just tacky. What I do have an issue with, however, are the blatant lies told by Senator Cruz and his Republican colleagues about Obamacare.

In a recent interview, Senator Cruz explains his opposition to the Affordable Care Act thusly: “What is problematic about Obamacare is that it is killing millions of jobs in this country and has killed millions of jobs. It has forced millions of people into part time work. It has caused millions of people to lose their insurance, to lose their doctors and to face skyrocketing insurance premiums.” But none of that is true.

Consider, for example, the oft repeated claim that fewer people have health insurance now than before Obamacare was signed into law. The numbers that Cruz, House Speaker John Boehner, and other conservative politicians use to support that assertion? Between March 2010 and March 2015, approximately 6 million Americans received cancellation notices from their health insurance plans. In this same period of time, only 4.5 million Americans signed up for new plans through one of the federal- or state-run health insurance exchanges. That’s a net loss of 1.5 million from US health insurance rolls, right?

Wrong. What those figures don’t include is the number of people who signed up for new plans through other means, such as insurance brokers. It also ignores the 9.1 million people who signed up for Medicaid, the government-run insurance plan that was greatly expanded under the Affordable Care Act. A recent Gallup poll found that the number of uninsured Americans has fallen to 13.4%, a record low. That drop has been greatest in those states, like New York, that have openly embraced Obamacare by expanding Medicaid and by setting up state-based insurance exchanges.

Of course, all these people are paying vastly more for their health insurance now then before Obamacare became the law of the land. Or so opponents claim. But are they? In the years immediately prior to passage of the Affordable Care Act, individual health insurance premiums increased an average of 10 percent annually. By contrast, premiums for mid-level plans offered through health insurance exchanges increased by only 2 percent in 2015, and price for insurance plans in the largest metropolitan markets actually dropped.

Finally, one of the largest criticisms of Obamacare is that it is a “job killer.” Specifically, critics believe that cash-strapped employers unable to provide health insurance to their employees will be forced to lay off workers. Alternatively, since the Affordable Care Act only requires that health insurance coverage be provided to those who work more than 30 hours a week, employers will eliminate full-time positions in order to sidestep this mandate. Thankfully, this is also not the case. The United States has seen 60 months of consecutive job growth since the Affordable Care Act was passed, the longest stretch of employment gains in history. The number of Americans involuntarily working part-time jobs has also declined steadily.

In fact, none of the arguments or predictions used by conservative lawmakers opposed to the Affordable Care Act have proven to be true. The economy hasn’t collapsed, workers haven’t lost their jobs, the federal deficit hasn’t skyrocketed, insurance premiums haven’t risen steeply, and doctors haven’t fled the healthcare industry in droves. In addition, the number of uninsured has dropped and those who obtained new plans though the health insurance exchanges are largely happy with their coverage.

It’s time for opponents of Obamacare to accept these facts. The Affordable Care Act is not an unmitigated disaster, as Ted Cruz and other conservative politicians would like you to believe. Rather, it is an unprecedented success. It has achieved exactly what it set out to do by reducing the number of uninsured while containing health care costs.

Those on the right might have ideological objections to Obamacare. Some of these objections might even be valid. But if you’re going to spend most your time repeatedly trying to repeal this successful law, instead of tackling other looming crises like immigration reform and student debt, at least have the courage to stand up for your convictions and back them with concrete arguments and supporting data.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 26, 2015, and is available on the WAMC website.]

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Caveat Scholasticus

Economists talk a lot about scarcity. Scarcity occurs when we have fewer resources than are necessary to fill our basic needs and wants. Price is usually a good indicator of scarcity. Despite the recent short-term glut of oil, for instance, increasing demand and decreasing supplies of fossil fuels means that gasoline prices will inevitably rise in the coming years.

Ethicists like myself also talk about scarcity. Medical resources are often in short supply and must be rationed. The limited number of beds in the intensive care unit means that doctors must sometimes make difficult choices about which critically ill patients are admitted to the ICU and which are not. Vaccines may also be rationed. In the event of a serious flu epidemic, for example, the New York State Department of Health has a four-tiered vacccine allocation system, with critically needed staff such as doctors, nurses, police and firefighters given priority over grocery clerks, plumbers, mechanics, and stay-at-home dads. But one thing we never thought would be an increasingly scarce resource, at least in the medical setting, was privacy

Everyone is increasingly concerned about privacy today, and rightfully so. In a progressively wired and interconnected age, there is little about a person that isn’t public knowledge. In fact, despite all our protestations, we as individuals are largely responsible for this loss of personal privacy.

We give up our personal privacy in a myriad of seemingly innocuous ways: posting status updates on Facebook and Twitter, writing blog articles, and uploading pictures to Instagram. Everything we say or do online leaves behind a trail of personal information that can be used by public agencies and private businesses to track us, watch us, and selectively market goods and services to us.

This is true even when it comes to our personal health. As mentioned before, much of this is our own doing. We comment about our various aches and pains online, use databases like WebMD to self-diagnose and self-treat minor illnesses and injuries, and purchase over-the-counter and prescription drugs using our CVS ExtraCare card. But one thing that we would never expect is that our conversations with our physicians and psychotherapists could also become public knowledge.

If anything, maintaining patient privacy and confidentiality is one of the key ethical obligations placed upon physicians. It is an obligation that has its roots in two millennia of Hippocratic practice, and it is the foundation of the doctor-patient relationship. Patients must feel that they can share all sorts of personal information with their physician, no matter how embarrassing or stigmatizing. This information is often necessary to ensure proper diagnosis, testing and treatment.

A sixteen-year-old girl who is experiencing pain when urinating, for example, may simply have a urinary tract infection. But she may also have a more serious condition like chlamydia, gonorrhea or some other sexually transmitted infection. If she is not willing to share the fact that she is sexually active, perhaps out of fear that her parents will find out, her doctor may inaccurately diagnose and treat her.

Maintaining patient privacy and confidentiality is so important that it has been put into practice and codified into law. Following a groundbreaking observation study of what doctors, nurses and medical students shared with each other in public elevators (spoiler alert: they shared way too much), many hospitals instituted strict policies about what can and cannot be said about patients in public settings. Anyone who has been to a hospital in recent years has undoubtedly seen the signs in the hallways and elevators reminding staff of this fact. Hospital staff can reprimanded and even fired for breaching confidentiality, as happened at Cedars-Sinai Medical Center after six employees inappropriately accessed the medical records of reality television star Kim Kardashian

State and federal laws restrict the types of information that can be shared about patients. One key federal law, the Health Insurance Portability and Accountability Act (HIPAA), places strict limits on who can access or share your medical records or your health insurance and billing information. Doctors, hospitals, and insurance companies bound by HIPAA regulations can face severe civil and criminal penalties for violating this law, including fines of $1.5 million and prison sentences of up to ten years.

Unfortunately, this privacy law is rife with loopholes. HIPAA only applies to so-called ‘covered entities,’ such as health providers and health insurance companies. It does not apply to others who may have private health information, such as life insurance companies, employers, workman’s compensation programs, law enforcement agencies, or schools. This is a significant problem, as highlighted by a recent case involving a student at the University of Oregon.

That student was allegedly raped by three University of Oregon basketball players. In a Title IX lawsuit filed against the school, she claims that the school deliberately delayed its investigation so that the men could play in an important NCAA tournament.

So what does this case have to do with medical privacy? The University is using the student’s own medical records to defend itself in court. Because the student sought clinical treatment and psychological counseling at the University health clinic, her medical record belongs to the school. A federal law known as the Family Educational Rights and Privacy Act (FERPA), ironically meant to the protect the privacy of a student’s educational records, exempts campus medical records from HIPAA’s privacy rules.

Sadly, as morally repugnant as this is, the University is well within its legal rights to do this. Until laws like HIPAA and FERPA are amended to close these loopholes, we all should be more than a little wary. Students, for example, may wish to seek off-campus counseling or treatment in order to protect the privacy of their records, even if this means that they or their families may be forced to shoulder the cost. Meanwhile, the rest of us should be a little more diligent about the types of medical information we share with agencies and organizations not covered by HIPAA, and to pause for a moment before we complain about our neck aches and back pains on social media.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 12, 2015, and is available on the WAMC website.]

Posted in Clinical Care, Policy, Privacy | Leave a comment