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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why I am a Truvada Whore

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Forgiving Fred Phelps

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

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

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

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

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

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

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

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

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

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

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

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

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

Reefer Madness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted in Drugs, Policy, Politics, Regulation, Substance Abuse | 1 Comment

Opening the Black Box

In a study published earlier this week, researchers found that pregnant women who take acetaminophen — a widely used drug found in such over-the-counter painkillers as Tylenol and Excedrin — are at increased risk of having children with hyperkinetic disorders like ADHD (attention deficit hyperactivity disorder).

Although the results of the study are not conclusive, children whose mothers used acetaminophen frequently while pregnant were nearly twice as likely to be diagnosed with ADHD by the time they were 7 years old.

This finding is surprising and troubling. Unlike other painkillers like aspirin and ibuprofen, acetaminophen has largely been considered safe for use during pregnancy. Nearly 50% of women in the United States take this drug at some point during pregnancy.

Pregnant women now face a difficult decision: whether or not to use a drug like acetaminophen when clinically indicated, despite the potential risks to the child. But this is not the first time that women have been faced with this choice. For example, antidepressant use during pregnancy raises a number of concerns, including the possibility of certain congenital defects. But stopping their use is also risky, particularly for the mental and physical wellbeing of the mother.

In an ideal world, pregnant women and their doctors would rely on objective information about the safety of drugs and the risks of forgoing treatment to make appropriate decisions. However, the truth is that we have almost no such data. Physicians and their patients are flying blind when it comes to the use of various medications during pregnancy. Moreover, the US Food and Drug Administration (FDA) — the federal agency tasked with ensuring the safety and effectiveness of drugs sold in the US — can do little to help.

Currently, the FDA classifies drugs according to possibility that they may birth defects if used during pregnancy. Drugs are sorted into one of five categories – A, B, C, D and X – based on the amount of animal and human safety data available.

Category A drugs are those that are safe for use during pregnancy, based on extensive animal and human testing. Category X drugs are those where there is conclusive animal and human data demonstrating fetal risk. Only a handful of drugs fall into category A. Far more drugs fall in category X.

The vast majority of drugs fall into categories B, C and D. For these compounds there may or may not be data from animal models or human studies to suggest that the drug is safe. Use of these drugs by pregnant women is essentially a crapshoot; women and their physicians have little guidance to help them weigh the risks and benefits of these treatments.

The problem is that there is a bit of a Catch-22 with respect to prescription drug use and pregnant women. We would like to collect data on the safety and effectiveness of new drugs during pregnancy, but these women are typically excluded from clinical trials.

For decades, regulatory agencies like the FDA have recommended that pregnant women be excluded from clinical trials out of fear that experimental drugs may pose a risk to the developing fetus. The images of severely deformed children following the thalidomide scandal of the late 1950s and early 1960s still resonate strongly among regulators and researchers alike.

Under existing guidelines, studies in pregnant women can be considered only when drug safety and efficacy has been demonstrated in the general population, when the drug has potentially significant therapeutic benefit to pregnant women, and when drug exposure not expected to pose undue risk to the woman or fetus. Those are very difficult requirements to meet, and there is little incentive for pharmaceutical companies to conduct additional studies in pregnant women once a drug has been approved for general use.

The vast majority of the data on the safety and effectiveness of drugs during pregnancy thus comes from two sources: pregnancy exposure registries in which women who use drugs are monitored for the effect of these compounds on fetal development, and retrospective studies like the acetaminophen trial.

Unfortunately, data from pregnancy exposure registries is biased. Physicians are more likely to report adverse birth outcomes than they are to report healthy deliveries, raising concerns about the safety of drugs during pregnancy where issues don’t really exist. These registries are also largely ineffectual in identifying problems that arise later in life, such as ADHD. Retrospective studies like the acetaminophen trial have similar problems, including the difficulty of proving a direct link between drug exposure and health issues in children.

It doesn’t make sense that we rely on such “natural experiments” rather than collect the necessary safety and effectiveness data by conducting controlled clinical trials using informed and willing participants. It’s time for us the reconsider existing guidelines on the inclusion of pregnant women in clinical trials: the mothers and their children deserve better.

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

Posted in Clinical Trials, FDA, Prenatal, Women | Leave a comment

Buying Into the Club

I’ve never been a big fan of actor Matthew McConaughey, but his recent award winning performance in The Dallas Buyers Club might change my opinion of him. In that movie The Dallas Buyers Club, Mr. McConaughey plays the role of Ron Woodroof, a real-life Texas cowboy who was diagnosed with HIV/AIDS in 1985.

HIV/AIDS is now a chronic but manageable illness, at least for people in high-income countries who have access to highly effective antiretroviral drugs. At the time of Ron’s diagnosis, however, a positive HIV test was largely a death sentence. The first effective treatment for AIDS, zidovudine (AZT), was still in development and wouldn’t be approved by the United States Food and Drug Administration (FDA) until 1987. Access to life-saving drugs like AZT was largely restricted to patients enrolled in clinical trials.

Moreover, during the early years of the HIV/AIDS epidemic the disease was largely seen as affecting gay men, prostitutes and drug users. Discrimination against people living with HIV/AIDS was common: they were routinely kicked out of their homes, expelled from their classrooms, and fired from their jobs.  Patients even faced discrimination at the hands of health care professionals. As the HIV/AIDS crisis unfolded, many doctors and nurses openly proclaimed that they would not be going anywhere near a patient with AIDS because of the personal risk.

Small wonder, then, that most people living with HIV/AIDS in the mid-1980s died within a few months of receiving a diagnosis. Ron Woodroof could have been just another statistic. His disease was relatively advanced at the time diagnosis, he was precluded from enrolling in a clinical trial of AZT for safety reasons, and he was largely abandoned by his friends and family because of the shame of having a ‘gay disease.’ But he chose to fight rather than succumb to a then-untreatable illness. Thus began Ron’s prolonged struggle, which only ended in 1992 when he passed away from an AIDS-related illness (nearly seven years after doctors gave him but a few weeks to live).

Denied access to the then-experimental drug AZT, for instance, Ron began to self-treat using unapproved and illicitly obtained antiviral medications. Soon, he and his colleagues were routinely traveling to Mexico, Japan, Israeli and the Netherlands to purchase antiviral drugs and treatments that were not approved or available for use in the United States.  They began providing these drugs to those living with HIV/AIDS – primarily members of stigmatized communities like gay men and drug users – via the commercial operation that gives the movie its name.

Ron Woodroof also (albeit unsuccessfully) took the FDA to court to force them to allow the importation of the experimental HIV inhibitor Peptide T from Denmark. In doing so, he became part of a larger movement in which community-based organizations and activists began to set their own agenda for biomedical research and treatment. Outraged by federal regulations and policies that slow the development, testing and distribution of new drugs to treat HIV/AIDS, for instance, activists in New York City, San Francisco and elsewhere established organizations like The Gay Men’s Health Crisis, Project Inform, AIDS Coalition to Unleash Power (ACT-UP) and the Treatment Action Group. Like Ron, these organizations helped to change the way that clinicians, researchers, drug companies, and local, state and national governments addressed the HIV/AIDS epidemic.

In the documentary film How to Survive a Plague, we see how ACT-UP mobilized a national demonstration at the FDA in October 11th, 1988. On that day, over 1500 activists from around the world surrounded and effectively shut down FDA headquarters. Shortly thereafter, in consultation with ACT-UP and like-minded organizations and activist groups, the agency instituted new policies to speed up the testing, approval and distribution of HIV/AIDS drugs. Similar demonstrations at the US National Institutes of Health lead to other significant changes in how clinical trials were designed and conducted, such as the inclusion members from afflicted communities on trial committees and protocol teams.

What these two movies, the semi-fictional Dallas Buyers Club and the documentary How to Survive a Plague, show is how a single individual or a small group of dedicated activists can have a significant and long-lasting impact on public policy, even in the face of private apathy or open hostility. At the start of the HIV/AIDS epidemic, the public response to the disease was tepid at best. Federal funding for public health had been repeatedly cut and officials seemed unconcerned about the disease, so long as it largely affected marginalized members of society like gay men and drug users.

All of that changed thanks to the efforts of Ron Woodruff and those like him. They fought injustice and prejudice against people with HIV/AIDS, and demanded increased government resources for fighting the disease. Since then activists and advocacy groups have become an increasingly integral part of biomedical research and clinical practice, not just for HIV/AIDS but also for diseases like breast cancer, Alzheimer’s and autism. There is still a long way to go – community advocates and activists are not always fully empowered and equal members of research and treatment teams, and the more wealthy and connected organizations often dictate the topic of conversation – but public health research and practice is vastly improved from the highly politicized approaches of the past.

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

Posted in Clinical Trials, FDA, HIV/AIDS, Homosexuality, Media, Policy, Politics, Public Health | Leave a comment

Keep Your Head in the Game

My hometown 49ers will not be playing in this Sunday’s Big Game. Despite my disappointment, I nevertheless will be joining millions of my fellow Americans in the hallowed tradition of watching the Super Bowl. I will put my feet up on the coffee table, drink a beer or two, and cheer on the Denver Broncos as they face off against the Seattle Seahawks. I will also cringe every time the quarterback is sacked or a wide receiver is brutally tackled, imagining the lasting damage caused to both body and mind.

The problem, of course, is concussions. A concussion — known clinically as an MTBI, or mild traumatic brain injury — occurs when a blow to the head or body, a fall, or some other impact causes the brain to smash into the skull. Depending on the severity of the blow, symptoms can range from a mild headache, blurred vision and some disorientation to a loss of consciousness, convulsions and amnesia. Often these symptoms subside in a few hours, but they can last for days or even weeks.

Moreover, the long-term effects of repeated concussions — common in football, hockey, boxing and other contact sports — are still unknown but seem to be associated with an increased risk of dementia, Parkinson’s, and mood disorders later in life. In some cases, patients may be diagnosed with chronic traumatic encephalopathy (CTE), a neurodegenerative disease whose symptoms include tremors, impaired speech, deafness, and profound clinical depression. In one study of men who had histories of repeated concussions, 80 percent showed evidence of CTE. Most of these men were former football players.

The problem has become so pervasive that both the National Football League and the National Hockey League are facing a rash of individual and class action lawsuits filed on behalf of former players and their families. Those lawsuits contend that league officials knew about the link between repetitive concussions and neurodegenerative diseases for decades but never shared this information with the players.

In a 1994 Sports Illustrated article, for example, the head of the NFL’s Mild Traumatic Brain Injury Committee described concussions as “part of the profession” and “an occupational risk” of being a professional football player. Despite this admission, and despite mounting evidence linking frequent concussions with brain damage in later life, the NFL waited until 2009 to tighten up its rules on when a player can return to the field after suffering a concussion. Borrowing from the tobacco industry’s playbook, football league officials have also repeatedly said, including in Congressional hearings, that there is no connection between playing professional football and brain damage.

That strategy probably won’t work. Just as lawsuits against cigarette manufacturers lead to radical changes in the tobacco industry, lawsuits against the NFL and other professional sport leagues will lead to changes in the way the football, hockey and other games are played.

One class action lawsuit, brought by more than 4,500 retired football players against the NFL, was settled in August for $765 million. Most of that money would be used to provide medical monitoring, benefits and compensation for injured players, but $10 million would also be set aside to fund additional health and safety research. Earlier this month, however, US District Judge Anita Brody rejected that settlement. Judge Brody’s concern was that $765 million — an average of $170,000 per plaintiff — was inadequate.

In her ruling, Judge Brody expressed a concern that “not all retired NFL football players who ultimately receive a qualifying diagnosis or their [families] will be paid.” She’s probably right. Some health economists and insurance industry experts have estimated that the medical costs alone could top $2.5 billion.  Furthermore, the settlement could indemnify the NFL from future liability, leaving the rest of us to pick up the tab.

Unfortunately, time is running out for many retired players. I would not blame them, their families, the player’s unions, or Judge Brody for accepting a woefully inadequate settlement. Many of these retired players need medical treatment and care, and they need it now.

The real problem is the continued reluctance of the NFL and other professional leagues to take the problem of concussions seriously, rather than treat it as a PR problem to be solved. The proposed settlement includes the unfortunate disclaimer that it is not “an admission by the NFL of liability, or an admission that plaintiffs’ injuries were caused by football.” It also doesn’t require any meaningful reforms in how the league, the teams and the players deal with concussive injuries on the field. There are no fines, for example, for teams, coaches or players that willingly ignore the rules on when an athlete can return to the field after suffering a concussion. Finally, it provides little support for additional research in preventing or treating mild traumatic brain injuries.

Until we tackle this problem head on, protecting the health and safety of our athletes will remain a sideline issue.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 30, 2014. It is also available on the WAMC website.]

Posted in Athletics, Disability, Health Care, Mental Health, Policy | Leave a comment

Rage Against the Dying of the Light

Until last week, most people had never heard of Lisa Bonchek Adams. A devoted wife and mother to three young children, Ms. Adams has been battling end-stage cancer for the last seven years.  This 44-year-old Connecticut woman has chosen to fight her disease tooth and nail, including enrolling in a clinical trial at Memorial Sloan Kettering Hospital in New York City.

For the last couple of years, Ms. Adams has been blogging and tweeting about her fight against the disease.  As of last night, her Twitter feed had over 12,000 followers, the majority of whom ardently support her.

Lisa is not the first person to write publicly about her fight with illness. In fact, people have been doing so for centuries, originally through print memoirs but increasingly through blogs and social media websites like Facebook and Twitter.

For many, doing so provides some level of comfort, helps them find the courage they need to make difficult treatment decisions, and gives them the chance to help others facing similar life-threatening challenges.

So what makes Ms. Adams and her public struggle with cancer so unique? Why am I, as an overworked and underpaid professor of bioethics, now following her story so closely? The reason is that she recently came under attack by two well-known journalists:  Emma Keller, a lifestyle columnist for the Guardian (a British newspaper), and her husband Bill Keller, former executive editor of the New York Times.

In an article that has since been pulled from the Guardian’s website, Ms. Keller questioned Lisa’s decision to publicly document her fight against cancer. Perhaps it was the sheer volume of tweets that disturbed Ms. Keller; since opening her Twitter account, Lisa has posted over 165,000 tweets about her clinical experiences. But whatever the reason, Ms. Keller elected to write a scathing piece about Lisa.

Ms. Adams’s alleged crime is that of TMI – providing ‘too much information’ about her struggle against a life-threatening illness. For example, Ms. Keller wrote that Lisa’s frequent tweets are the “grim equivalent of deathbed selfies, one step further than funeral selfies”. At least according to this London-based lifestyle writer, documenting your fight against cancer is on par with the disturbing trend in which teenagers (and occasionally world leaders) take photos of themselves at memorial services for dead relatives and friends.

Shortly thereafter, Ms. Keller’s husband Bill penned a similar op-ed piece that appeared in the New York Times. In it, he contrasts Lisa Adams’s decision to viciously (and publicly) fight her disease with his elderly father-in-law’s choice to refuse aggressive treatment in favor of palliative care and a peaceful and largely pain-free death. In doing so, he described his father-in-law’s passing as “a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.”

The insinuation, it seems, is Lisa Adams’s refusal to die without a fight is somehow undignified. Moreover, that her decision to explore novel treatment options, including enrolling a clinical trial, not only gives false hope to those in similar situations but also denigrates the memory of those who chose not to pursue a similarly aggressive approach.

Now I myself have frequently written about the high cost of medical treatment, particularly at the end of life. I am also a fervent advocate of hospice and of palliative care for those suffering from terminal illnesses. That does not mean that I agree with the Kellers. In fact, I don’t.

As Americans, we do need to starting talking more openly about death and dying. As individuals, we need to have the difficult conversation with our friends and family about end-of-life treatment and care. As a society, we need to think about what a so-called ‘good death’ looks like and make sure that we have policies in place — at the institutional, local and national level — to ensure that everyone who dies does so well.

That Lisa Adams has decided to fight her illness rather than succumb is her prerogative, and she draws comfort and support from sharing her experience with others. Some, such as Bill Keller’s father-in-law, chose a different and less public path. Their choice is equally courageous and they no doubt drew comfort and support in other, more private ways.

The Welsh poet Dylan Thomas once wrote: ” Do not go gentle into that good night / Rage, rage against the dying of the light.” No truer words have been written. Lisa Adams expresses her rage publicly, by documenting her fight against cancer and providing encouragement for others who chose a similar path. But some people choose to do so privately, by spending time with family and friends and building long lasting memories that will survive even after they are gone.

What the Kellers fail to appreciate is that every death is different. Everyone has an opinion of what a ‘good death’ is, and that opinion should be respected and honored. So long as that is achieved, there is no right or wrong way to die.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on January 16, 2014. It is also available on the WAMC website.]

Posted in Cancer, Clinical Trials, End-of-Life, Media | Leave a comment

Manufacturing a Vaccine Controversy

Last week, I got into an argument with a friend of mine about the flu vaccine. He felt that the vaccine was unnecessary and unsafe. In fact, he claimed, every time he’d been vaccinated, he came down with the flu.

Of course, everything he said or claimed in our discussion about whether or not people should be vaccinated against the flu was wrong. But this highly educated man is convinced that vaccines pose a serious threat to the health and well being of most Americans.

He’s not alone. Recent surveys suggest that over 40% of Americans believe that vaccines are unsafe. I’m not just talking about the flu vaccine. People are increasingly skeptical about the value and safety of all vaccines, including those that prevent such dangerous diseases as measles, whooping cough and polio.

Rates of vaccination in this country have decreased steadily over the last decade, particularly in more affluent and progressive communities. As a result, we are beginning to see a resurgence of otherwise preventable infectious diseases. For example, the US is experiencing the worst whooping cough epidemic in over 70 years.

Caused by a bacterium known as Bordetella pertussis, this disease is highly contagious and extremely dangerous, particularly for children. Over half of infants who catch the disease will require hospitalization. Some of these children will die.

Prior to the development of an effective vaccine to prevent whooping cough, nearly a quarter of a million Americans died from this disease annually. By the mid-1970s, however, the disease was largely eliminated in the US. Only a thousand cases of whooping cough occurred in 1976. Compare this with 2012, when nearly 50,000 cases were reported. Outbreaks were particularly common in Washington and Wisconsin, states that have some of the lowest rates of childhood vaccination.

All of this — declining vaccination rates, increasing skepticism about vaccine safety and effectiveness, and otherwise preventable outbreaks of dangerous infectious diseases — is the result of a militant anti-vaccination movement lead by celebrity ‘experts’ like former Playboy Playmate Jenny McCarthy.

The anti-vaccination movement is based on faulty science and fabricated research. The oft-cited claim that vaccines cause autism, for example, comes from a single now-discredited study by the fraudulent Dr. Andrew Wakefield. Despite this, the anti-vaccinationists increasingly have the support of the mainstream media.

For instance, Ms. McCarthy is the new co-host of the popular TV show “The View,” giving her a national platform to espouse her anti-vaccination opinions. Worse yet, veteran newswoman Katie Couric recently ran a segment on her talk show that questioned the safety and effectiveness of Gardasil and Cervarix, two vaccines that prevent the spread the most common cervical-cancer causing strains of human papilloma virus (HPV). The alarmist promo for that show: “The HPV vaccine is considered a life-saving cancer preventer, but is it a potentially deadly dose for girls?”

Katie and her producers, it seems, were more than willing to pander to fear-mongering anti-vaccinationists in exchange for ratings. The show’s guests included several women who made wild and unsubstantiated claims about vaccine safety and post-vaccination side effects. Known anti-vaccinationist Dr. Diane Harper also appeared on the show, questioning Gardasil’s effectiveness. Only one guest, Dr. Mallika Marshall, represented the pro-vaccination side. She was given but a few moments on the air, not nearly enough time to challenge the claims of the other guests. It was not exactly a ‘fair and balanced’ news segment.

Ms. Couric has since apologized, admitting in a Huffington Post blog that “criticisms that the program was too anti-vaccine and anti-science [were] valid.” Unfortunately, the damage is done and Katie’s apology, while seemingly heartfelt, did little to correct the myths perpetuated by the anti-vaccinationists who appeared on the show.

But we have a bigger problem. By even airing segments such as this, the mainstream media is actively promoting the idea that vaccines are neither safe nor effective. They are manufacturing controversy and debate where none exists.

The vast majority of studies show that vaccines are extremely safe and protect against a variety of dangerous diseases like whooping cough, influenza and cervical cancer. There is no uncertainty about the value of vaccines, at least not within the scientific and medical community. The benefits of vaccination clearly outweigh the risks.

That’s the news story the networks should be promoting, rather than giving anti-vaccination alarmists the opportunity to continue their campaign of misinformation and misdirection.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on December 19, 2013. It is also available on the WAMC website.]

Posted in Celebrities, Health Care, Media, Vaccines | Leave a comment

We Have Met The Enemy and He Is Us

This past Sunday marked the 26th annual World AIDS Day, which is held every year on December 1st to remember the nearly 30 million people who have died from the disease since it was first identified in 1981.

But World AIDS Day is more than just a day of remembrance. It is also an opportunity to show support for the 35 million people who are currently living with HIV, and a chance to raise awareness of the continuing impact of the most devastating pandemic in recorded history.

I’ve been involved in the fight against HIV/AIDS for nearly two decades, starting when I joined the New York State Department of Health in mid-1990s and continuing through my recent work with disease advocacy organizations in the US, Africa and Southeast Asia. Although I am no longer on the frontlines in the war against HIV/AIDS, I still think and write about the topic daily.

In looking back at my 18 years as a foot soldier in this battle, what strikes me first are the amazing victories that have been achieved. When I first enlisted in this war in 1995, we were losing the fight. The few antiviral drugs we had to treat those living with HIV/AIDS, for example, were partially effective at best. Acronymic medications like AZT, ddI and 3TC offered only short-term benefit, prolonging the lives of those infected for a few months.

The epidemic also seemed unstoppable. Here in the US, infection rates were continuing to increase, despite the best efforts of public and private organizations like the CDC, the Gay Men’s Health Crisis, the National Minority AIDS Council, TeenAIDS, and the AIDS Council of Northeastern New York. Globally, the picture was even grimmer. In the hardest hit countries of Africa, for instance, rates of infection were approaching 30% of the total population.

Things quickly changed. The very next year, the fortunes of war began to favor the researchers, physicians and activists engaged in the fight against HIV/AIDS. In 1996, the number of new cases diagnosed in the US declined for the first time since the start of the epidemic. Similar gains were also seen worldwide, with countries like Uganda slashing infection rates in half. New and more effective antiretroviral drugs also became available. When used in combination, these new drugs prolonged the lives of those living with HIV for years and years. Being infected with the virus was no longer a death sentence.

We’ve made remarkable progress since. In the last decade, the annual number of new infections has fallen markedly. In 2001, there were 3.5 million new cases of HIV globally. This past year, there were fewer than 2.0 million new cases. Due to the significant increase in people receiving treatment, the number of AIDS-related deaths has also declined. But the war is not over, and a new and more dangerous enemy threatens our hard-won gains. That enemy is complacency.

During much of the 1980s and 1990s, HIV/AIDS was seen as the major health problem facing the US. That is no longer the case. A recent survey by the Kaiser Family Foundation found that AIDS now ranks seventh among national health concerns, after cancer, obesity, health insurance, heart disease, health care costs and diabetes. More disturbing is the fact that among those with the highest rates of infection (including gay and bisexual men and African Americans), many do not recognize their risk or believe that HIV is not a serious health threat.

Financial support for HIV prevention and treatment efforts is also slipping, in part because AIDS is no longer seen by public or private donors as a serious crisis. The federal government recently slashed funding to the Ryan White HIV/AIDS Program, which supports AIDS organizations across the country. Similarly, private funding for HIV/AIDS programs has remained stagnant since 2008.

That drop in support is likely to have serous consequences. We know, for example, that treating those living with HIV/AIDS not only prolongs their lives but also dramatically decreases the likelihood that they will spread the virus to others. By identifying and treating everyone who has the virus, we could effectively end the epidemic. Despite this, cash-strapped public health agencies and programs have cut back on their HIV testing and treatment efforts. As a result, nearly a quarter of the 1.2 million Americans living with HIV/AIDS still don’t know that they are infected. Of those who do know, less than half are receiving treatment. We could win the war on HIV/AIDS now, but choose not to.

As Pogo once said, “we have met the enemy and he is us” … or rather our apathy and complacency. The perception that HIV/AIDS is no longer a serious threat is a dangerous one. Despite the remarkable gains for the last two decades, we are all still at risk. AIDS is as much of a public health crisis as it was when the first cases were identified over 30 years ago. We need to be reminded of that fact, not just on World AIDS Day but everyday. We need to continue to raise awareness and fund prevention programs. HIV never sleeps, and neither should we.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on December 5 2013. It is also available on the WAMC website.]

Posted in Health Care, HIV/AIDS, Policy, Politics | Leave a comment