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.]

Posted in Health Care, Policy, Politics | Leave a comment

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

When Doctors Discriminate

Most of you have probably never heard of Jami and Krista Contreras, a Michigan couple and the proud parents of a six-month-old girl named Bay. Shortly after Bay was born, the Contrerases began interviewing pediatricians, looking for one who practiced holistic medicine.

After meeting with nearly a dozen doctors, the newly married couple finally settled on Dr. Vesna Roi, a pediatrician in private practice with nearly 19 years of experience caring for children like Bay. On the morning of their first appointment, however, Dr. Roi refused to see them. The reason: the Contrerases are a same-sex couple.

In a handwritten letter delivered to Jami and Krista by another doctor at the pediatric clinic, Dr. Roi apologized but stated that, “after much prayer following your prenatal [visit], I felt that I would not be able to develop the personal patient doctor relationship that I normally do with my patients.” Dr. Roi’s religious faith, it seems, makes her uncomfortable around lesbian couples.

I actually have some sympathy for Dr. Roi. She clearly felt that she could not give the Contrerases, or their daughter Bay, the level of care that they deserved. In fact, a strong doctor-patient relationship is the key to quality health care. If Dr. Roi felt uncomfortable around Jami and Krista, or felt uncomfortable in asking them questions about those aspects of their personal lives that could affect the health of their daughter, she might overlook pieces of information that were important for Bay’s preventative care or therapeutic treatment. The Contrerases might also pick up (consciously or subconsciously) on Dr. Roi’s unease, and be less than forthcoming about their concerns or opinions. Given this, Dr. Roi was not the right pediatrician for Bay.

Vesna Roi also had the right to refuse the Contrerases as patients. For the most part, doctors are legally bound to treat patients only once they have entered into a care relationship. Even then the doctor can terminate the physician-patient relationship under certain circumstances (if, for example, a patient is non-compliant with treatment, the patient is abusive to providers, or the services sought are not covered by the patient’s health insurance). But the physician must provide a reason for terminating the relationship and must ensure continuity of care.

Ethically, Dr. Roi is on shakier ground. If she felt that she could not establish the necessary doctor-patient relationship with the Contrerases, she probably shouldn’t take them on as patients. But Dr. Roi should have been upfront with the Contrerases sooner, rather than waiting until the morning of Bay’s first pediatric appointment to inform them of her reluctance.

Moreover, while the American Medical Association (AMA) and other professional organizations recognize the right of clinicians to refuse to provide specific treatments if they are incompatible with a doctor’s personal, religious or moral beliefs, it’s hard to see how such “conscience clauses” apply in this case. Conscience clauses are meant to apply to specific medical procedures, most notably abortion and sterilization, rather than to specific classes of patients. If we allow a physician like Dr. Roi to reject patients on the basis of sexual orientation (whatever her personal, religious or moral reason), should we also allow a doctor to turn away patients who are Black or Latino? To turn away patients who are Muslim, Jewish or Atheist? To turn away patients who are women?

Of course we would never allow this. It is morally reprehensible. This is why the AMA, the American Academy of Pediatrics and other professional organizations that respect the conscience of physicians also make it clear that doctors should not refuse care based on race, gender or sexual orientation.

It would also be illegal to refuse a patient based on race, religion or gender under the federal Civil Rights Act of 1964. Sadly, this is not the case for sexual orientation or gender identity. Lesbian, gay, bisexual or transgender (LGBT) individuals are not protected by the Civil Rights Act, but rather by a patchwork of state laws and local anti-discrimination ordinances.

Only twenty-two states have laws that prohibit discrimination based on sexual orientation in “public accommodation” (e.g. businesses that serve the public, including pediatric clinics like Dr. Roi’s). Only fourteen states extend those same protections to gender identity. Michigan is not one of those states, so that what Dr. Roi did is morally questionable but it is not legally actionable. Had she lived here in New York, she could have been sued (unless one of the Contrerases had been transgendered, since the Empire State still allows discrimination based on gender identity).

We need these laws, both at the state and the federal level. Sure, people like Dr. Roi may be uncomfortable in dealing with lesbian patients or gay clients. But that’s not a reason to legally allow or publicly condone discrimination based on sexual orientation or gender identity.

The same arguments were used for years to justify discrimination against women, Black and Jews, until the Civil Rights Act forced people to challenge their biases and question their assumptions. It’s time to do the same for the LGBT community.

As I said before, Dr. Roi was not the right pediatrician for Bay. But she could be, once she learns to look beyond her personal prejudices and see the Contrerases for who they are: human beings with the same needs, fears, and hopes as her. But it might take a legal nudge to get Dr. Roi and others like her to take that first step.

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

Posted in Discrimination, Health Care, Homosexuality, Human RIghts, Policy | Leave a comment

How to Die in Canada

Last week, our neighbors to the north took a huge step towards legalizing physician aid-in-dying. On Friday, the Supreme Court of Canada unanimously struck down that country’s ban on the practice, suspending two sections of the Criminal Code that outlawed assisted suicide and euthanasia, and ordering the Canadian Parliament and the various provincial legislatures to draft new legislation that would allow physician aid-in-dying.

This is not the first time that Canada has dipped it toe into these treacherous waters. Earlier this year, the Canadian province of Quebec passed Bill 52, also known as ‘An Act Respecting End-of-Life Care’. That Act, which would have taken effect in December, would grant terminally ill Quebecers the right to request a physician’s aid in dying.

In order to qualify for medical assistance in ending their lives, however, these patients must have “an incurable illness that is causing unbearable suffering”. They would have to be in constant and unbearable pain that doctors couldn’t relieve with treatment. The request for aid-in-dying would also have to be made in writing, witnessed by the attending physician, and approved though consultation with a medical team after two doctors determine that the patient is competent to make this request.

The Supreme Court ruling went much further than what Quebec’s law would allow. The nine Canadian justices ruled that physician-assisted suicide should be made available to any competent adult who “clearly consents to the termination of life and has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.”

By including references to disability and psychological suffering, the Court potentially opened the doors not only to those with terminal illnesses, but also those with chronic but not life threatening illness or disabilities, as well as those suffering from mental illness.

It is unclear how Canadian legislators and medical professionals will respond to this ruling, but they will face a number of challenges in devising an aid-in-dying process that will allow seriously ill patients to end their lives peacefully while still protecting their rights and safety.

But this is a Canadian problem, right?. Why should we care what is happening in the Great White North? Rulings by that country’s Supreme Court have no bearing on US law. Moreover, any aid-in-dying process that our neighbors create is likely to be limited to the citizens and residents of Canada, preventing so-called ‘euthanasia tourism’.

But we should care about what’s happening in Canada because the aid-in-dying movement is also becoming an increasingly powerful voice in US medical practice (particularly following the death of Brittany Maynard, the terminally ill 29-year-old who spoke publicly about moving from California to Oregon in order to legally end her life). American policymakers and physicians can learn a lot from watching the Canadian experiment.

Currently, only five states allow physician aid-in-dying: Montana, New Mexico, Oregon, Vermont, and Washington. In three of those states, laws allowing terminally ill patients to request a doctor’s assistance in ending their own lives were passed by popular referendum or legislative votes. Similar legislative bills or public referendums have been proposed in other states, and popular support for physician aid-in-dying is increasing.

Just last November, for instance, Massachusetts’ voters narrowly defeated a referendum called Question 2 that would have legalized physician aid-in-dying in that state. That narrow 51-49 loss occurred only after well funded and politically savvy opponents were able to reframe discussion about the referendum. The public debate about Question 2 became less about the rights of the terminally ill and more about potential abuses of the disabled and the elderly. But recent polls suggest that nearly two-thirds of voters in the Bay State now support physician aid-in-dying, and a new bill to legalize the practice is currently winding its way through the Massachusetts legislature.

Those of us who live in the Empire State may never get a chance to vote on physician aid-in-dying as New York does not have a popular initiative and referendum process. Efforts have been made to introduce aid-in-dying bills in the state legislature, but these bills face an uphill battle due to strong opposition by religious groups, disability advocates and conservative lawmakers. But this doesn’t mean that physician-assisted suicide won’t soon be legal in New York.

As with Montana and New Mexico, physician aid-in-dying may become legal in New York via court ruling. Just last week, a group of terminally ill patients and clinicians filed a lawsuit asking the New York Supreme Court to invalidate the state’s current prohibition on assisted-suicide.

Currently, a doctor who prescribes a fatal dose of medication to a terminally ill patient can be prosecuted for manslaughter under New York’s Assisted Suicide Statute, which makes it a crime to “intentionally cause or aid another person to commit suicide.” To date, no doctor has ever been prosecuted under this statute. Despite this, the plaintiffs argue that current assisted suicide laws violate the equal protection clause of the State Constitution. For example, physicians are already help some terminally ill patients die (by removing life support) but they cannot help patients who do not rely on continuous medical intervention to live.

Whether or not the New York Supreme Court will rule for the plaintiffs in this case remains to be seen, but the tide of public opinion is clearly shifting in favor of physician aid-in-dying. Physician aid-in-dying may not become the law of the land in New York anytime soon (be it by legislative action or judicial fiat), we need to start talking about it.

No matter which side of the debate you are on — either for or against physician aid-in-dying — we need to have a thoughtful and respectful discussion about dying, about the rights of the terminally ill, and about the role that physicians should play in helping patients attain a peaceful death. And we should watch the Canadian experiment carefully (and the experience of Montana, New Mexico, Oregon, Vermont, and Washington), and learn from their success and mistakes.

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

Posted in End-of-Life, Physician Aid-in-Dying, Policy | 1 Comment

V-Ticket to Ride

I haven’t been to Disneyland since my senior year in high school, and I’ve actually never visited one of the Disney World resorts. Frankly, I never really cared for the noise, the crowds and the artificiality of the Disney parks. The fact that one of these amusement parks is now the center of an infectious disease outbreak makes my aversion even more intense.

Public health officials in California recently confirmed that an outbreak of measles in that state has been linked to the Disneyland theme park in Anaheim. Over 90 new cases of measles have been reported in California and seven neighboring states during the past two weeks, with over 50 of those cases originating in the Magic Kingdom. Most of those cases occurred among unvaccinated kids.

To put this outbreak into context, consider that in 2000 the US Centers for Disease Control and Prevention (CDC) declared that measles had been eliminated from the United States due to vaccination programs and a strong system for detecting, reporting and responding to outbreaks. Only 37 confirmed cases of measles were reported that year, all of which were imported from other countries.

What a difference 15 years can make. In 2014, the United States experienced a record number of measles cases. 644 cases of measles were reported to the CDC, more than the total number of cases in the previous four years combined. If this year’s Disney outbreak is any predicator, we are likely to surpass the 2014 record.

The disease itself is still largely imported from overseas, but it spreads like wildfire among unvaccinated Americans. This is because measles is one of the most infectious diseases known to man. On average, a person with measles spreads it to 18 other people. By contrast, a person with Ebola (the deadly disease that caused widespread panic last year) is only likely to transmit that virus to one or two others, and only in places that lack a robust public health system. An outbreak of Ebola in the US is highly unlikely, whereas measles outbreaks will probably become commonplace.

The anti-vaccination movement is solely to blame for the re-emergence of measles as a public health threat. The easiest way to prevent the spread of measles is vaccination. If 95% of the people in a community are vaccinated against measles, outbreaks cannot occur. Unfortunately, rates of vaccination have fallen to their lowest levels since the start of widespread measles immunization programs in 1963. For example, over 40% of kindergarteners in Orange County, home to Disneyland and epicenter of the current outbreak, are not vaccinated against measles.

Those opposed to vaccination, including such public health luminaries as disgraced British researcher Andrew Wakefield and former Playboy Playmate Jenny McCarthy, have successfully convinced a large swath of the American public that vaccines are dangerous. Despite scientific evidence to the contrary, claims have been made that vaccines cause autism, cancer, asthma, allergies, and a host of other acute and chronic ailments. These so-called “anti-vax” claims have been largely accepted by a gullible populace. According to a recent survey, barely 51 percent of Americans believe that vaccines are safe and effective. About the same number of people also believe in astrology, creationism and ghosts.

Since the Disneyland outbreak began, a number of prominent anti-vaxxers have also argued publicly (including on the CBS Evening News) that measles is not a disease to be feared. Nothing could be further from the truth. Measles is a dangerous and deadly illness. Before the first effective vaccine was developed, approximately 4 million Americans contracted measles each year. Of those, 3 in 10 developed complications like pneumonia. Nearly 50,000 people were hospitalized, 1,000 were permanently disabled due to measles encephalitis, and 500 died.

When confronted with the lack of compelling data to support their claims, anti-vaccination activists often fall back on the most American of arguments: individual freedom and personal liberty. Specifically, many anti-vaxxers believe that the government cannot tell them what they should or should not put into their (or their child’s) body. But this position has limits, particularly when individual actions jeopardize the lives of others.

That is exactly the case here. When someone refuses to vaccinate themself or their kids, they put others at risk, including children who are too young to be vaccinated or elderly whose resistance to measles and other preventable diseases has waned.

It’s time for clinicians, public officials, and politicians to take a stand on vaccination, and take a stand against the claim that personal liberty trumps public safety. Pediatricians and other physicians should refuse to accept new patients who chose not to immunize themselves or their children. School officials should no longer allow unvaccinated children to attend public schools, except in rare cases where vaccination is contraindicated medically. Finally, local, state and national politicians should no longer make it easy for parents to obtain philosophical or “personal belief” exemptions from vaccination requirements and other public health statutes.

If you don’t like vaccines and refuse to get immunized, that is your right. But you shouldn’t expect to line up for Space Mountain or the Pirates of the Caribbean with the rest of us.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 29, 2015, and is available on the WAMC website.]

Posted in Public Health, Vaccines | Leave a comment

(Golden) Global Change and LGBT Rights

I make it a tradition to watch televised awards shows like the Oscars, Emmys, and Grammys. This is not because I particularly care about the entertainment industry, but primarily because I enjoy providing a running commentary of snarky comments about the various nominee’s clothes, styling and speeches on Facebook and other social media outlets.

Obviously, then, I watched the Golden Globe awards ceremony this past Sunday. Awarded annually by the Hollywood Foreign Press Association, the Golden Globes honor excellence in both television and film, and are often seen as a precursor to (and predictor of) the Emmys and the Oscars.

I usually don’t pay much attention to the actual awards themselves, but I was pleasantly surprised when this year’s ceremony became (in part) a celebration of the lesbian, gay, bisexual and transgender (LGBT) community. For example, the television drama The Normal Heart, adapted from the Larry Kramer play of the same name, received three nominations, including a nod for Best Miniseries or Television Film. Openly gay actor Matt Bomer won for his supporting role in that film, which depicts the early days of the HIV/AIDS epidemic in New York City.

More importantly, the television series TransParent, which follows the lives of a Los Angeles family after the patriarch comes out a transgendered, won Best TV Comedy. Jeffrey Tambor also won Best Actor for his role as Maura Pfefferman, a retired professor of political science who begins to transition from male to female.

In his acceptance speech, Mr. Tambor dedicated his remarks to the transgender community, saying: “Thank you for your courage, thank you for your inspiration, thank you for your patience and thank you for letting us be a part of the change.” This was quite an improvement from last year’s ceremony, when both Michael Douglas and Jared Leto managed to offend the entire LGBT community with speeches that mocked the very characters they were honored for playing: a gay man and a transgender woman, respectively.

Given this, I can’t really blame the Hollywood press for crowing that this year’s Golden Globes were “a watershed moment” for LGBT rights. In fact, it has been a watershed year for the LGBT community.

With the recent federal court rulings in Florida and South Dakota, for example, the number of states in which same-sex couples are able to marry has more than doubled. Over 70% of Americans now live in a marriage equality state. New state laws and local ordinances have also been passed that recognize the rights and dignity of LGBT people, including legislation that makes it easier for transgender people born in New York City to correct their birth certificates.

But it far too early, as many in the press have done, to suggest that the fight for LGBT equality is complete. Golden Globe co-host Tina Fey joked that the movie Selma, nominated for Best Motion Picture, is “about the civil rights movement, which totally worked and now everything’s fine.” She could have made the same joke about TransParent, The Normal Heart, and LGBT rights.

Anti-LGBT organizations like the Family Research Council, Focus on the Family, and the National Organization for Marriage are continuing their efforts to prevent or repeal legislation that protect all people regardless of sex, race, ethnicity, sexual orientation, or gender identity. They are often successful in their efforts, as seen by the recent vote by the residents of Fayetteville, Arkansas, to repeal an anti-discrimination ordinance.

Various state representatives and federal legislators are also supporting so-called ‘religious liberty’ bills, which would allow public businesses to refuse goods and services to LGBT individuals. Republicans in the US House of Representatives continue to block a vote on the Employment Non-Discrimination Act, which would prohibit employers from discriminating against workers on the basis of sexual orientation or gender identity.

Pervasive stigmatization and marginalization of the LGBT community continues, even in Hollywood. The cable network TLC, once known as The Learning Channel but now home to highbrow shows like Here Comes Honey Boo Boo, recently debuted a series called My Husband’s Not Gay. This reality series follows the lives of several men who admit they are sexually attracted to other men but who refuse to identify as gay or bisexual. Most of these men are married to women, despite their sexual orientation, presenting the idea that suppressing same-sex attraction is somehow healthy or achievable. Such shows do little but support outdated stereotypes that sexual orientation or gender identity is a choice, and that LGBT individuals can be “cured” through reparative therapy.

Small wonder then that hate crimes and violence against LGBT individuals is still common. In fact, it is on the rise. It should also come as no surprise that a significant percentage of LGBT individuals attempt to take their own lives. Many are successful in this attempt, including Leelah Alcorn, a transgendered Ohio teenager who threw herself in front of a tractor-trailer last week. In her suicide note she wrote, “Please don’t be sad, it’s for the better. The life I would’ve lived isn’t worth living in … because I’m transgender.” But Leelah was wrong. Her life was worth living in.

Despite increasing visibility and recent accolades, there is still a long way to go before the LGBT community achieves equality, regardless of what recent headlines in the Hollywood press might lead you to believe. We owe it to Leelah and others like her.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 15, 2015, and is available on the WAMC website.]

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

A Cold Day’s Concern About a Warming Planet

My husband and I usually spend both Thanksgiving and Christmas at my in-laws’ house in Western New York, located about 30 minutes outside of Buffalo. This year was no exception.

What was different this year was the unusual weather. The Thanksgiving holiday was a white one, with sub-freezing temperatures and lots of snow on the ground. In fact, at that time the Buffalo area was still recovering from one of the worst storms in recent history, with some areas receiving over 8 feet of lake-effect snow in the two weeks prior.

By contrast, the Christmas holiday was a green one, with temperatures in the mid-fifteens and not a flake of snow to be seen. We did, however, experience high winds that knocked over trees and toppled power lines. My grandfather-in-law was nearly killed when he struck a downed telephone poles while driving home late on Christmas Eve.

It’s tempting to chalk up these weird weather patterns to global climate change. According to the vast majority of climate scientists (over 97% of them, to be precise), we can expect to see increasing temperatures, changing rain and snowfall patterns, and more extreme weather events like droughts, floods and blizzards over the coming years. These changes are the result of increasing levels of carbon dioxide and other greenhouse gases in our atmosphere, largely as a result of industrial activity.

Despite concerted campaigns by business groups, right-wing pundits, and conservative politicians to discredit the theory — and despite the fact that much of the US is currently shivering under abnormally cold weather — I do believe that climate change is real. I believe it is happening. I think we are already seeing the effects, even if we cannot ascribe singular weather events like the Buffalo blizzard to greenhouse gases in the air.

But I am a public health expert, not a meteorologist. What concerns me the most about global climate change is the effect it will have on patterns of disease and illness, both here in the United States and overseas.

The health-related impact of climate change is most directly observed during extreme weather events, such as increased mortality among the elderly and those who work outdoors during heat waves. But the long-term effects of climate change on public health are much more insidious, particularly the impact on the spread of infectious diseases.

We know, for example, that infectious diseases like cholera and cryptosporidiosis show seasonal patterns. Until recently, the Americas had been free of the deadly diarrheal disease cholera for more than 100 years. When that water-borne illness re-emerged in Central and South America in 1991, it coincided with a periodic weather event (El Niño) that resulted in much warmer than normal coastal waters. Vibrio, the bacterium that causes cholera, was able to proliferate in these unusually warm waters, setting the stage for increased exposure and transmission to humans.

Cholera is now re-established in the Americas, with outbreaks linked to weather events like El Niño. Unfortunately for those countries affected, over the last several decades the number of El Niño events increased, and studies of historical data show the recent variation is likely linked to global warming.

The spread of other illnesses is also climate sensitive, including the spread of vector-borne diseases like Lyme disease, West Nile Virus, malaria, and dengue fever. Several of these are already present in this country. For instance, Lyme disease is the most common vector-borne disease in the US, with the costs of medical treatment and lost productivity alone estimated to exceed $3.2 billion a year.

Other diseases that haven’t been seen in the US for centuries are likely to regain a foothold as the climate changes, particularly as increased temperatures and altered rainfall patterns allow the mosquitoes that carry malaria, dengue and other deadly or debilitating illnesses to thrive in American cities. I know this personally, as a recent business trip to Grenada left me suffering from the high fever and severe joint pain associated with the newly emergent disease known as chikungunya.

Global climate change seems to be an unfortunate reality, with the effects increasingly seen through changes in rain and snowfall patterns, decreases in crop yields, and extreme weather events like heat waves, cold snaps, droughts and floods. While the impact on human health has been limited to date, we can expect to see increasing morbidity and mortality as water-based illnesses and insect-borne diseases become more common.

All we can do now is try to mitigate the effects, through personal behaviors and public policies that reduce the amount of greenhouse gases produced. The more the planet warms, the more likely we will have devastating floods, disastrous droughts and deadly outbreaks of infectious disease. Sadly, in an era of $2.50-per-gallon gas and economic struggle, neither we nor our political leaders seem willing to make the hard choices necessary to limit the rate and magnitude climate change.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 1, 2015, and is available on the WAMC website.]

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