Promising new drug for treatment-resistant depression – esketamine

Treatment-resistant depression affects 1 in 3 of the estimated 16.2 million adults in the U.S. who have suffered at least one major depressive episode. For them, two or more therapies have failed and the risk of suicide is much greater. It’s a grim prognosis.

Promising new drug for treatment-resistant depression – esketamine
The chemical structure of esketamine.
Promising new drug for treatment-resistant depression – esketamine
The chemical structure of ketamine.

As there are few therapies for depression that resists treatment, the Food and Drug Administration has been considering a new treatment called esketamine. On Feb. 12, 2019, I participated in the FDA review of this drug. Practically speaking, esketamine is essentially the same as ketamine, which is a pain killer with hallucinogenic effects and used illegally. As a member of the Drug Safety and Risk Management Advisory Committee of the FDA, I voted with the majority of that panel 14-2, to approve esketamine only for people who have treatment-resistant depression.

For more than 20 years, I have researched illegal drug use and addiction. As a medical anthropologist, my work is oriented to understanding the perspectives and behaviors of people actively using illegal drugs. My research often involves fieldwork, which means participating in the lives of people as they go about their everyday routines. This has given me a personalized and practical outlook on illegal drug use. Many of the people I currently interview are heroin injectors who first started opioid use by misusing prescription drugs.

Not a street drug

But many drugs, especially those for the treatment of mental illness, have powerful effects on the central nervous system. How the drug is distributed and administered must minimize risk. What if the drug is addicting?

Some reports about esketamine have sensationalized this issue by referring to ketamine as a highly addictive street drug. In my research, this is not true. First, ketamine use is rare. The last time I interviewed a ketamine users was nearly 20 years ago and since its introduction in 1964, there have been no significant trends or outbreaks in its diversion or use.

Not all illegal drugs are sold “on the street.” Street drugs are staples of the illegal drug economy, which is run by drug trafficking organizations. Prescription opioids, heroin, cocaine, and marijuana are street drugs sold in open-air drug markets, where such markets exist. Hallucinogens and exotic, designer and other less popular drugs are rarely available in these settings. They simply do no appeal to enough users to make them profitable for drug traffickers to supply. Ketamine has always been in this second group. Why?

Is it addictive?

Ketamine is short-acting – between two and four hours – and produces euphoria, sustained pain relief and sedation mixed with powerful hallucinogenic effects. Taking this drug can be very unpleasant. Out-of-body experiences, time perception distortions, tunnel vision and dissociation are common. These effects limit the popularity of ketamine and make it difficult to use habitually.

A person can take heroin everyday and function. Ketamine is disruptive.

Promising new drug for treatment-resistant depression – esketamine
Esketamine is taken as a nasal spray. Kirill Linnik/

Another reason that ketamine isn’t popular on the street is that users do not have to keep using it to avoid withdrawal. There is no withdrawal syndrome associated with ketamine; when people stop using it, they do not get sick. This is actually a benefit, because fear of withdrawal is often a major motivation for the continuation of drug use. Unlike street drugs, its appeal is limited and its addiction liability is comparatively low.

On balance, the profile of ketamine is more like LSD than cocaine or opioids. People do not get addicted. This does not mean that ketamine or esketamine is safe. Its access should be restricted and use monitored by a physician. The manufacturer is placing important restrictions on the drug. It will not be available at local pharmacies and never for take-home use. A person receiving the treatment, which was developed by Johnson & Johnson and delivered as a nasal spray, will be under observation and care of a health professional trained in the therapy. The drug will be given in an office or approved health center, and the patient will not be allowed to drive until the day after treatment.

Given its effectiveness and the proposed risk evaluation and mitigation strategy, the benefits outweigh the risks of esketamine for the treatment of depression that has not responded to other treatments. Like any new treatment, as manufacturers make this product available, monitoring it will be important to make sure the benefits outweigh the costs. People living with the misery of treatment-resistant depression need more options, and this drug should help.

Confusing and high bills for cancer patients add to anxiety and suffering

Weeks after my father passed away from cancer in 2010, my newly widowed mother received a bill for US$11,000.

Insurance retroactively denied a submitted claim for one of his last chemotherapy treatments, claiming it was “experimental.” All of the prior identical chemotherapy treatments he had received had been covered, and the doctors had received pre-authorization for the treatment.

Was it suddenly experimental because it was not prolonging life anymore? Was it a clerical error, with one insurance claim submitted differently than the others?

As my mother and family grieved, we had this bill looming in the backs of our minds. We took turns calling the insurance company and the hospital billing office, checking websites, and deciphering billing codes on various pieces of paper.

Advances in cancer treatments have improved patient outcomes overall, but many of these interventions have increased costs of care. Even when care is “covered,” the definition of “coverage” can include high deductibles, copayments, coinsurance, and surprise out-of-pocket bills for patients. As one participant in a recently published qualitative study of cancer survivors told us, “You just have to call both parties and figure out, what are you chargin’ me for? Plus … you’re getting billed for months ago.”

By the time patients receive these delayed bills, they may be unable to recall the particular visit in question, which makes it exhausting for them to manage their finances and diagnosis. The problem is so significant that the National Cancer Institute has a term for this: financial toxicity.

A scary disease, an opaque system

Confusing and high bills for cancer patients add to anxiety and suffering
Cancer is one of the scariest and most expensive diagnoses a patient can receive. Sasa Prudkov/

In the U.S., cancer is one of the most expensive diseases to treat; only heart disease costs more. This cost burden is often passed on to patients.

And to make matters worse, lack of transparency about cost and coverage can be confusing. Seemingly arbitrary changes in insurance decisions can contribute to patients’ financial toxicity, or the hardship, psychological stress and behavioral adjustments associated with costs of care. For example, some patients have unexpected bills after they receive a diagnosis or abnormal result on a screening test.

In these cases, care that was previously categorized as preventive (and free from out-of-pocket costs) can become a diagnostic or surveillance test, with associated fees. Other patients are surprised when they receive a bill for physician time as well as a hospital facility fee. It is difficult for patients to keep track of all of these changes and adjust cost expectations.

The impact of high care costs is substantial. People with high out-of-pocket costs are less likely to receive necessary care, which can compromise cancer treatment and may affect overall or cancer-specific mortality. In a recent study, almost a third of adults said they delayed or avoided care due to costs.

A patient participant in a study we conducted talked about the time she spent navigating the billing process, commenting, “The billing was extremely daunting. I kept a three-ring binder that was three inches thick … tried to match things up. It was a mess.” That time and effort could be spent healing or engaging in valued activities, she relayed to us.

Hidden costs of care

In addition to direct costs of care, there are indirect costs of care, such as fees for transportation, parking, housing when needed, and the time spent managing the financial aspects of care on top of treatment.

My father had to pay between $18 and $30 per day just to park at the hospital in New York City where he received his treatments, depending on how long he stayed. This parking fee was on top of tolls ($15) and the time spent traveling to and from the hospital. For him, this meant anywhere from 45 minutes to two hours, depending on traffic and road conditions. Transportation and parking costs are typically not covered by insurance, though some hospitals, health centers and nonprofit organizations offer assistance with these indirect care costs.

Many other patients have to take time off work while they are undergoing cancer treatment or follow-up care. Cancer patients who are unemployed may even have lower survival rates. One patient in our study commented, “It takes me two-and-a-half hours to get here. I was coming every month, then every two months. Now I’m every three months. Eventually, I go to six months, but I have to take off work every time to come.” Another patient stated, “My vacation and sick time ran out … I had to go on disability.”

Policy suggestions

Confusing and high bills for cancer patients add to anxiety and suffering
A cancer patient and her doctor discuss her treatment. Talking with doctors about costs may make a difference. Rido/

Although addressing out-of-pocket care costs for patients requires multiple systemic changes, there are strategies that can help.

First, patients and their clinicians can discuss the costs of care and create cost-saving strategies. Patient-clinician cost discussions can reduce overall costs to patients, but many clinicians are hesitant to talk about costs with patients.

If there is more than one treatment option available with equal effectiveness data, patients can ask, “is there a difference in price between options”? Developers of patient-centered decision aids can also add the relative costs of treatments so that patients can weigh cost along with other aspects of treatment to support their choice.

Health care institutions may be underutilizing social workers, financial navigators and other care center resources. Social workers, financial navigators and other care center resources staff with adequate training that promotes patients’ access to care and assistance can help manage their out-of-pocket expenses. This process can yield positive outcomes for both patients and health care institutions.

Less may be more

Sometimes, treatments are not needed and may add burden to patients. For example, a shorter duration of radiation for early stage breast cancer works just as well as longer durations; chemotherapy might not benefit some patients at earlier stages of cancer or some older adults; and some scans may be excessive.

Until we change norms and engage patients, clinicians and systems to weigh the pros and cons of care that is considered unnecessary or even harmful, many patients and clinicians might fear less aggressive treatment. There’s also the Choosing Wisely campaign which is designed to help by summarizing evidence in plain language and recommending commonly overused interventions.

Finding sustainable solutions to reducing cancer-related financial toxicity requires a collaborative effort between doctors, patients, policymakers, health insurance companies and health care institutions. Easing the cognitive burden associated with the financial stress that comes with cancer care can lead to better outcomes for cancer patients’ health and quality of life.

Research coordinator Nerissa George, MPH, contributed to this article.

Why it’s so difficult for scientists to predict the next outbreak of a dangerous disease

A two-year-old boy in rural Guinea died of Ebola in December 2014. Over the next two years, almost 30,000 people in West Africa would be infected with the Ebola virus.

Why, unlike the previous 17 Ebola outbreaks, did this one grow so large, so quickly? What, if anything, can be done to prevent future outbreaks? These questions, along with many others, are at the heart of the nascent scientific field of outbreak forecasting. And the stakes couldn’t be higher. In January, the World Economic Forum called pandemics one of the greatest risks to business and human life.

Over the last several centuries, scientists have become ever better at predicting many aspects of the world, including the orbit of planets, the ebb and flow of tides and the paths of hurricanes. The ability to understand natural and physical systems well enough to make accurate forecasts is perhaps one of humanity’s greatest achievements.

Much of this success at forecasting begins with Isaac Newton’s fundamental insight that there are unchanging universal laws that govern the natural phenomena around us. The ability to rapidly perform large calculations has fostered the Newtonian perspective that, given enough data and computing power, most complex phenomena can be predicted.

There are, however, limits. As scientists who study these kinds of predictive systems, we doubt that it will be possible to predict exactly what will happen next in a disease outbreak, because the most important variables can change so much from one outbreak to another.

This is why, as with weather forecasting, gathering real-time data is likely essential for advancing the scientific community’s ability to predict outbreaks.

Why it's so difficult for scientists to predict the next outbreak of a dangerous disease
A health care worker gets decontaminated after carrying a baby, suspected of dying from Ebola, in the Democratic Republic of Congo on Dec. 15. REUTERS/Goran Tomasevic

Capricious epidemics

The idea that scientists can model epidemics is based on the notion that the trajectory of each outbreak is predictable because of its intrinsic and unchanging properties.

Say a disease is caused by a transmissible pathogen. The infectiousness of that disease can be encapsulated in a number called the “basic reproductive ratio,” or R0, a number describing how widely a pathogen is likely to spread in a given population.

If epidemiologists know enough about a pathogen’s R0, the hope is that they can predict aspects of its next outbreak – and hopefully prevent small-scale outbreaks from becoming large-scale epidemics. They might do this by mobilizing resources to areas where pathogens have especially high R0 values. Or they might limit interactions between the carriers of disease and the most susceptible members of a given society, often children and the elderly.

In this way, R0 is interpreted as an immutable number. But modern studies demonstrate that this not the case.

For example, consider the Zika virus epidemic. For this disease, R0 ranged from 0.5 to 6.3. This is a remarkable span, ranging from a disease that will dissipate on its own to one that will cause a long-term epidemic.

One might think that this broad range of R0 values for Zika stems from statistical uncertainty – that maybe scientists just need more data. But that would be mostly incorrect. For Zika, myriad factors, from climate and mosquitoes to the presence of other related viruses like Dengue and the role of sexual transmission, all lead to different R0 values in different settings.

It turns out that the features of an epidemic – the pathogen’s contagiousness, rate of transmission, availability of vaccines and so on – change so rapidly during the course of a single outbreak that scientists are able to predict dynamics only within the course of that outbreak. In other words, studying the Ebola virus disease outbreak in April 2014 may help scientists to understand an Ebola outbreak in that same setting the next month, but it’s often much less helpful for understanding the dynamics of future Ebola epidemics, such as the one that happened in May 2018.

Epidemics often aren’t neat and bundled phenomena. They are noisy occurrences where many variables play essential, but shifting, roles. There is no underlying truth of the disease – only an unstable collection of details that vary, often becoming entangled, as the disease spreads.

Why it's so difficult for scientists to predict the next outbreak of a dangerous disease
Amid a measles outbreak that has sickened people in Washington state and Oregon, lawmakers heard public testimony on the bill on Feb. 8 that would remove parents’ ability to claim a philosophical exemption to opt their school-age children out of the combined measles, mumps and rubella vaccine. AP Photo/Ted S. Warren

Better predictions

If scientists aren’t confident that they can understand epidemiological systems well enough to predict the behavior of related ones, why bother studying them?

The answer might reside in what we call a “soft physics” of prediction: Scientists should stop assuming that every outbreak follows the same rules. When comparing one outbreak with another, they should keep in mind all of the contextual differences between them.

Why it's so difficult for scientists to predict the next outbreak of a dangerous disease
The H1N1 influenza virus. CDC

For example, biologists have uncovered many details about influenza infections. They know how the viruses bind to host cells, how they replicate and how they evolve resistance to antiviral drugs. But one epidemic might have started when a large population used public transportation on a certain day of the month, while another might have been initiated by a congregation at a religious service. Though both outbreaks are rooted in the same infectious agent, these and many other differences in their particulars mean that scientists may need to reframe how they model how each progresses.

To understand these particulars better, scientists need significant investments in real-time data. Consider that the National Weather Service spends over US$1 billion per year gathering data and making forecasts. The CDC spends only a quarter as much on public health statistics and has no dedicated budget for forecasting.

Disease surveillance remains one of the highest-stakes areas of science. A careful consideration for unique circumstances underlying outbreaks and more responsible collection of data could save thousands of lives.

To end the HIV epidemic, addressing poverty and inequities one of most important treatments

To end the HIV epidemic, addressing poverty and inequities one of most important treatments
Homelessness is a major driver of HIV/AIDS. Andrew Marcus/

In his State of the Union speech, President Trump called for ending the HIV epidemic in the United States within 10 years. Health and Human Services Secretary Alex Azar and senior public health officials stated that the government plans to focus on highly impacted areas and getting drugs to people at risk.

I am a social scientist with over 10 years of expertise in the area of health disparities. My research interests include understanding and addressing disparities in HIV and cancer outcomes, particularly among immigrant and minority populations, using a social determinants of health framework.

While remarkable progress has been made in the fight against HIV/AIDS, ending the epidemic will likely take longer than 10 years and will take more than drugs. That’s because the main driver of the disease has more to do with social inequity than with the virus alone.

The overall annual number of new HIV diagnoses has remained stable in recent years in the U.S., but this has not been the case for all groups. In fact, data from the Centers for Disease Control and Prevention reveal that major racial, ethnic, socioeconomic and even geographical inequities still exist. These inequities exist at every step in the HIV care continuum, from testing to mortality.

This means that there are gaps along the continuum and these individuals are being lost at each step, including HIV testing and diagnosis, linkage to appropriate HIV care, support while in care, access to antiretroviral treatment, and support while on treatment. These gaps exist due to barriers such as poor access to services, poverty, food insecurity and homelessness, and stigma and discrimination.

A HIV hot spot: The South

To end the HIV epidemic, addressing poverty and inequities one of most important treatments
A nurse pricks the finger of a young person to draw blood to test for HIV. Adam Jan Figel/

Among the CDC’s most distressing recent findings: More than half of new HIV diagnoses in the United States occur in the South. The heavy burden of HIV in the South is driven by factors such as concentrated poverty in cities, suburban areas and rural counties, high levels of unemployment, inadequate local health care infrastructure, and a lack of access to health insurance and quality health care services. Other important factors include increased stigma and discrimination toward those living with HIV. This can lead to people being afraid to get tested or seek treatment for fear that someone may find out they have HIV.

Gay and bisexual men account for 66 percent (25,748) of all diagnoses and 82 percent of HIV diagnoses among males. And, although African-Americans represent 13 percent of the U.S. population, they account for 43 percent (16,694) of HIV diagnoses. Likewise, Latinos represent 18 percent of the population but account for 26 percent (9,908) of HIV diagnoses.Racial and ethnic minority women account for a disproportionate share of diagnoses of HIV infection among women.

An arsenal beyond the medicine chest

HIV interventions that focus narrowly on pharmaceutical or drug innovations alone or individual behavior change cannot effectively address the magnitude and complexity of the HIV epidemic, as I explain in my recently published article with co-researcher David R. Williams, Ph.D. at Harvard T.H. Chan School of Public Health, in Public Health Reports. What we need most urgently today is a new generation of rigorously evaluated, cost-effective HIV interventions focused on the fundamental contextual factors for disease. These factors include:

  • access to adequate housing
  • access to quality health care and health insurance
  • access to child care
  • education, employment status, gender equality and income.

These factors are known generally as the social determinants of health (SDH) and have been viewed as the drivers of health for decades by many public health experts.

To cite a few examples, in one scientific study, structural community factors, such as poverty and poor employment opportunities, limited access to health care resources among women in the Deep South. In addition, stigma, transportation challenges, and access to illicit substances impacted health-seeking behavior and decision-making, and the ability to engage in HIV care.

Similarly, another study found that homeless individuals were more likely to be uninsured and less likely to adhere to their HIV anti-retroviral medication, demonstrating that housing is an important mechanism for improving the health of this vulnerable group.

Moreover, racial/ethnic stereotypes are deeply embedded in American culture and, whether consciously or not, can adversely affect the care that providers give to their patients. Evidence indicates that interventions that address implicit racial bias among providers can improve the quality of care and reduce racial/ethnic disparities in HIV outcomes.

With this scientific evidence in mind, it is perhaps unsurprising then, that despite three decades of public education and clinical campaigns, more than half of all the new infections in the entire region of North America, Western Europe and Central Europe occur in the U.S.

Make things fair

To end the HIV epidemic, addressing poverty and inequities one of most important treatments
Tents for homeless people in San Francisco, Calif., where a lack of housing is a rising crisis. Gov. Gavin Newsom recently announced a plan to create new housing to provide homeless people with secure housing. Eric Risberg/AP Photo

So what will it take to end the epidemic in the U.S.?

Put simply, to fight HIV, we need to address poverty and social inequity. This approach is the vital game-changer needed to eradicate the HIV epidemic in the U.S. Whenever feasible, social determinants need to be incorporated into behavioral and biomedical strategies to increase their likelihood of success. A new generation of HIV interventions focused on the fundamental SDHs should be the centerpiece of efforts to address HIV-related disparities.

There is growing scientific evidence documenting that interventions that address poverty and inequities in social and living conditions can be effective in reducing risks of HIV infection. Numerous studies reveal that improving education and affordable housing can reduce incidence rates of HIV and AIDS, because low levels of education and unstable housing have been found to decrease social stability and increase HIV risk behaviors.

These studies reveal that interventions that strengthen women’s income, housing stability and gender empowerment are associated with improved psychological well-being, economic productivity and reduced HIV risk. Improving access to care and enhancing quality of care can also contribute to reducing disparities in the incidence of HIV.

It is time to recognize that every government action has the potential to affect health and health equity, including policies dealing with finance, education, housing, employment, transportation and health. Economic studies also support the fact that most rigorously evaluated interventions focused on SDHs have been shown to be cost-effective and save society money in the long run. It is therefore important to integrate this Health in All Policies approach to have the widest impact on the HIV epidemic.

I believe Americans must commit to making it clear to our leaders and to all Americans that all sectors of society gain when we invest in tackling inequities in the most vulnerable areas. HIV/AIDS is not a partisan issue. Political will – and good will toward our most vulnerable fellow citizens – can engender a national “culture of health” that shatters boundaries, equalizes access, and makes HIV/AIDS a fading spectre from the past.

How old is too old to drive?

When Britain’s Prince Philip crashed his Land Rover into another vehicle on Jan. 17, 2019, many people were surprised that he was still driving at age 97. Many thought that surely someone – the queen perhaps? – would have persuaded him to give it up, or would have “taken away” the keys.

Older unsafe drivers are a growing problem, thanks to the baby boom generation. In the U.S., 42 million adults 65 and older were licensed to drive in 2016, an increase of 15 million from 20 years ago.

Yet who wants to stop driving? It is not only a major symbol of independence but also a needed activity for older people to be able to shop, go to the doctor and maintain social connections.

I’m a geriatrics specialist physician, a daughter of parents who had to stop driving. I live in Florida, where 29 percent of our drivers are older adults, which everywhere else in the U.S. will experience about 10 years from now. I also serve as editorial board chair of the Clinician’s Guide to Assessing and Counseling Older Drivers, a collaborative project between the American Geriatrics Society and the National Highway Traffic Safety Administration, or NHTSA. I have spent a great deal of time training clinicians how to detect and treat factors leading to the loss of driving skills early enough to prevent crashes and the loss of independent mobility.

Older drivers by the numbers

How old is too old to drive?
Older drivers are typically good drivers, but they can have impairments they may not recognize. Photobac/

By 2030, NHTSA estimates that 1 of out of every 4 drivers will be an older adult.

About 7,400 adults ages 65 and older were killed, and more than 290,000 were treated for motor vehicle crash injuries in 2016 alone.

Males 85 years and older and 20-24 years of age have the highest crash rates. Age and experience may be a factor here, but far and away the greatest number of vehicular deaths are still from substance abuse-related crashes, accounting for 23,611 out of a total 37,133 deaths in 2017.

According to Centers for Disease Control and Prevention data, most older drivers have good driving habits. The CDC reports that many self-restrict their driving to conditions where they feel safe and confident, such as avoiding high-speed roads, nighttime driving, bad weather or high-congestion times of day.

Know the stop signs

How old is too old to drive?
Good driving skills, such as having good vision and range of motion, are more important than age. Nikolai Kazakov/

Prince Philip announced on Feb. 9, 2019 that he would give up his driver’s license, but only after he and others had suffered serious consequences.

So how can others know when it’s time to get help or stop driving, for ourselves or for our parents, friends and neighbors?

It is all about the skills, not the age.

Key warning signs that it may be time to stop include getting lost, failing to obey traffic signals, reacting slowly to emergencies, using poor judgment, or forgetting to use common safety strategies, such as checking for blind spots.

Vision, cognition and the physical ability to manage the controls to the vehicle are critical functions that we must be able to perform, whether we are young or old in order to drive safely and effectively. Vision is well-recognized as the single most important source of information we use when navigating and making judgments.

Having difficulty with daytime sun glare, as was reported in Prince Philip’s crash, or nighttime headlights, brushing into objects on one side, or having to brake suddenly may be signs that something is impairing our ability to perceive road hazards accurately. Regular vision checkups are important to assure that we keep optimal vision for driving.

Cognition is essential to processing all the information we receive, ignoring distractions, remembering our route, responding to traffic signals and making good decisions. Medications and medical conditions such as sleep apnea, Parkinson’s disease or dementia can stop us from being able to think and respond well enough to keep ourselves or others safe while driving. Getting a good evaluation from your health care provider can help to minimize these risks and flag situations.

Physical abilities such as turning the steering wheel, neck flexibility and detecting where the pedals are correctly are important for operating the vehicle smoothly. Many of the same conditions associated with falls are also related to motor vehicle crashes.

Possible solutions

People can take brief self-assessments to get an idea of how they are doing, or ask a trusted individual to rate their driving using a tool validated by on-road testing, and discuss the results.

A driving rehabilitation specialist may be helpful in identifying problem areas, learning strategies for improvement and rehabilitating rusty or lost driving skills. You can find one using national databases on the America Occupational Therapy Association or the Association for Driver Rehabilitation Specialists websites.

It may be tempting to get a new vehicle featuring the latest safety features such as collision avoidance sensors, but these are not a substitute for a driver’s own skills. And, sometimes changing vehicles may even create mild confusion in a driver accustomed to a certain vehicle.

‘Mom, can I take away the keys?’

How old is too old to drive?
Taking away the car keys could be avoided with earlier discussions about safety and cognition. fatir29/

Adult children often want to protect their parents if they notice impairment. It’s important to have open, respectful communication to establish that maintaining mobility and finding alternative means of transportation are key to retiring from driving. These discussions should occur long before there’s a crisis.

Being willing and able to stop driving requires having a realistic mobility plan. National and local transportation resources can help people get around without driving, but it does take some effort to get used to planning activities well in advance. New skills may be needed, such as learning how to access ride-hailing services like Uber or Lyft, or someday, managing an autonomous vehicle.

Until then, following basic driving safety strategies and keeping as mentally and physically fit as possible is the best way to help us help ourselves to keep driving for longer.

Stories of African-American women aging with HIV: ‘My life wasn’t what I hoped it to be’

Sophia Harrison, 51, is a single mother of two, with an extended family to support. She has lived with epilepsy her entire life; she suffers from hypertension; and she is a breast cancer survivor.

Yet more challenging than any of these was learning she was HIV-positive.

“I was crying for at least six months,” she said of learning she was HIV positive 10 years ago. “It hurt me real bad.”

Harrison’s story is far from unusual. She is one of about 140,000 African-American women living and aging with HIV. While she is grateful to be alive, she faces multiple health challenges in addition to HIV, like hypertension, diabetes and breast cancer, that disproportionately plague African-American women. And they often struggle to take care of themselves and their families because of limited resources. In working with older African-American women who are HIV-positive, I learned about their individual stories.

Stories of African-American women aging with HIV: 'My life wasn’t what I hoped it to be'
Sophia Harrison has lived with epilepsy, breast cancer and HIV and is surviving all three. Aamir Khuller, CC BY-NC-SA

Victims of HIV’s early days

In the 1980s and 1990s, an HIV diagnosis often equated to a death sentence, with many given weeks or months to live. Much of the public health focus in the early years was on white gay men in urban centers.

Early stories of women living with HIV focused on sex workers and injection drug users, those who were highly stigmatized by society for behaviors it deemed immoral. Conversations about women with HIV were silenced and shamed, causing delays in testing and treatment for women. HIV research specifically excluded women, perpetuating the myth that women were not at risk for HIV. Even today, women represent less than a quarter of clinical trial participants for HIV medications, and prevention strategies for women lag far behind those for men.

As a result, African-American women living in places like Washington, D.C. and Maryland were not tested routinely or well informed about HIV until they fell seriously ill, I found as part of my research. Many who were in their 20s and 30s when they were first diagnosed were in a state of shock and denial, certain that they would not live to see their next birthday.

My research, which has involved ethnographic and oral history interviews with 45 women over five years, reveals that HIV for African-American women has never been a single issue, separate from histories of addiction, trauma and poverty.

For some, an HIV diagnosis signaled death and an end to the future they had imagined for themselves. While for others, diagnosis was a form of redemption and a second chance at life.

Regardless of how HIV altered their lives, these women, now in their 50s and 60s, suffer from debilitating health problems, a result of living a lifetime with HIV and the toxic effects of long-term medication use. Many rely on fragmented public safety nets and will need even more health and disability benefits as they age.

While public health officials and politicians are focused on ending HIV in the next decade, very few resources are available to those already living and aging with HIV. Amid the uncertainty that life with HIV brings, African-American women, like those featured here, live with hope and strength. “I’m a survivor,” Harrison told me.

‘I didn’t care what happened to me’

Stories of African-American women aging with HIV: 'My life wasn’t what I hoped it to be'
Marcella Wright has been living with HIV for decades. She was recruited to be in one of the first HIV treatment programs and was the only woman in the group. Aamir Khuller, CC BY-NC-SA

Marcella Wright was born in Washington, D.C. in 1943. She has suffered from debilitating asthma for as long as she can remember. When she was growing up, her neighbors grew wild cannabis and treated her with the vapor. She eventually learned to smoke cannabis to ease the pain of her asthma. She later added alcohol to the mix.

After graduating from high school, she found out that her boyfriend of two years was going to marry an older woman. “After that I didn’t give a damn. I didn’t care what happened to me.”

She became pregnant by a man who would eventually end up in jail, and she gave birth in a home for unwed mothers. She recalled: “I had the baby all alone in the cold. It seemed like one of the most horrifying moments of my life. And I have had guns to my head, I have been choked, and all that. But this particular time, having this baby. All alone.”

Wright was forced to marry her son’s father, and the relationship became abusive. She turned to crack cocaine to cope and became hooked. “You wanted to do the right thing because you’re a mom and you got this damn job you have to get to,” she said. “But you didn’t have any control. You wanted it all the damn time.”

She lost her job and became homeless.

She began to get sick. Even though she knew something was seriously wrong, she was either too high or too scared to go the hospital. She decided to get clean in 1989 for her children. A few years later, she found out that she had HIV.

She was recruited into one of the earliest treatment programs for people living with HIV. She was the only woman when she enrolled. Most of the other participants who began the program with her, mainly gay men, have since died.

Wright’s experience was transformative. “If it wasn’t for them I may not have accepted this situation,” she stated. “They just did everything that I expected everyone to do all my life – take care of me.”

She also credits her faith in God for getting her here. “He allowed me to know that this is just a journey,” she stated. “That is what keeps me.”

‘Real life stories of pain’

Stories of African-American women aging with HIV: 'My life wasn’t what I hoped it to be'
Toya Tolson gave birth to a son who died in her arms moments later. She started selling drugs, saying she was her own best customer. Aamir Khuller, CC BY-NC-SA

“I have a lot of stories,” said Toya Tolson. “They are real-life stories of pain.”

She became pregnant when she was in 10th grade. Her son was born prematurely, and he died right after his birth. She remembers holding him. “I have his birth and his death certificates,” she said between tears.

She coped by turning to drugs, mainly marijuana and love boat, a street drug made of marijuana dipped in a toxic chemical like formaldehyde, PCP, or both. It can cause severe brain damage and even death. She didn’t care. “I was getting high,” she said. “I was selling. I was my best customer.”

Eventually she became homeless. Alone on the streets, she became numb to feelings. “I put myself in a lot of dangerous situations,” she said. “It was just about survival.”

She was involved with a lot of strangers. “They weren’t relationships. They were sexual activities when I was out in the streets. I was in a confused state of mind. Where I probably encountered AIDS.”

What she really wanted was affection and attention, things that she felt like were always missing from her life. “I wanted to be loved. I wanted just to be around and thought they were my friends. But they wasn’t. They was using me. I didn’t comprehend until it was too late.”

Things hit bottom when she fell into a coma. No one expected her to survive. She spent months in rehabilitation, until she was sent home in 2005. That’s when she found out that she had HIV.

Today, she is thankful for being alive. “Every morning I wake up, I’m more than a moment. It’s a gratefulness. I’m still here. I have a second, an hour, another day.”

‘I thought I’d rather die’

Stories of African-American women aging with HIV: 'My life wasn’t what I hoped it to be'
Deborah Dyson’s parents were alcoholics, and she became addicted to crack. She wants others to know that there is life after HIV. Aamir Khuller, CC BY-NC-SA

“My life wasn’t what I hoped it to be,” Deborah Dyson said.

Both of Dyson’s parents were alcoholics. Raised by her godmother, her life took a turn for the worse when she moved back in with her biological family. A relative began to rape her when she was 12. Out of fear, she didn’t tell anyone. She turned to alcohol and drugs, both readily available in her home.

Things soon spun out of control. She dropped out of high school. A sister introduced her to crack.

She remembers the first time she smoked it. “That’s when you first figure out how crack works,” she recalled. “Because drinking was a thing I knew how to do, so I just needed to add the drinking to the crack to make that high. When you first drink, you get that good little buzz, so you’re always trying to find it again. That’s what I was doing, trying to find that feeling again.”

Soon, she turned to heroin. She used for 17 years, often out on the street.

Early in 1989, she became increasingly sick. Her friends urged her to get tested for HIV.

“I didn’t know anything about HIV,” she said. “I had friends dying of it but I didn’t know anything. I started taking AZT. I hated it. I got sick of it. I got mad. One day I took the whole bottle of pills and threw them up on the roof. I thought I’d rather die than take this.”

A friend recommended that she switch doctors and clinics, and this change made a huge difference.“ They showed me that I could live. They gave me good medical treatment,” she said.

Being around others with HIV and becoming a grandmother has also helped Dyson be less fearful of death and HIV. “I don’t let anything scare me because I know at the end of the day God has my back,” she said. “I’m not perfect, but I don’t allow a disease to tell me what I can and cannot do.”