As Hurricane Ida’s fierce winds ripped panels off of rooftops across New Orleans in September 2021, health workers and HIV activists braced for the aftermath. With power cut and roads blocked by debris, prescription refills and patients would be lost and forgotten in the storm’s chaotic wake across the South.
And with record-breaking hurricanes like Helene and Milton leading to hundreds of deaths and missing people earlier this fall across the Southeast, there is increasing fear that people living with HIV are losing the supportive services they need to stay alive because of climate change.
Nationwide, half of people with HIV are living in places that are extremely vulnerable to extreme weather and climate disasters, according to a new analysis of federal disaster and health data from the Center for American Progress (CAP), a progressive policy think tank. Of the 48 counties that are most vulnerable to climate disasters and have high rates of HIV, 35 have an above-average share of Black residents.
At the same time, a new study by Tulane University in New Orleans found that former racial segregation policies like redlining continue to impact these health outcomes today. Those living in once redlined neighborhoods across New Orleans experience 15% longer delays in accessing HIV-related care. Louisiana, where about 80% of people living with HIV are Black, has the nation’s third-highest rate of new cases.
Morris Singletary, the founder of HIV education nonprofit The Pozitive2Positive Initiative, said this shows how the social factors that determine health outcomes, like racism or access to housing, “lead from one harm to another, to another, to another.”
The South faces unique challenges. Displaced by the storms and violence, more people risk missing their medications as more than half of America’s new HIV diagnoses are found in the region.
After Ida, evacuees found themselves far from familiar clinics, uncertain their insurance would cover medications out of state. Meanwhile, those who stayed behind faced equally daunting barriers: a crumbled supply chain; skeptical pharmacies nervous about costly drugs collecting dust on their shelves failing to order new medicine; and the heavy silence of stigma pressed down in cramped shelter quarters, where some had yet to share their HIV status with family. One-third of people living with HIV in New Orleans said the storm caused them significant trouble in accessing care, according to New Orleans’ Health Department.
This is the hidden toll of disaster on America’s health care system, and climate change is only making it worse.
The discriminatory policies of the past have perpetuated the inequities in health care access, environmental injustice, and economic opportunity that are leading to prolonged delays in HIV treatment and exacerbating the ongoing crisis in Black communities today. Studies show that nationwide, formerly legally segregated neighborhoods are most vulnerable to climate change, are home to a greater share of Black people, and have higher rates of HIV.
“The Black community is being continuously deflated by these factors and institutions failing us,” said Singletary, who lives with HIV in New Orleans, which has the sixth-highest HIV diagnosis rate among large U.S. metro areas.
It’s simple, said Scott Batey, a professor at Tulane’s School of Social Work: “Place matters, and we are unable to escape historical implications and characteristics of the neighborhoods in which we live.”
“A lack of foresight for a changing world”
With climate change intensifying the frequency and severity of natural disasters for people living with HIV, these events present significant health challenges dependent on several things like economic status and geography.
On the West Coast, for example, wildfires worsen lung conditions that many individuals with HIV already face, while in the South and Northeast, hurricanes and flooding may destroy access to medical care. These climate disasters not only disrupt lives but also create barriers to maintaining the strict medication regimen required to prevent HIV from progressing to AIDS and to reduce transmission to others.
For many people with HIV, extreme weather events lead to difficulties in obtaining their life-saving medication. During evacuations, some individuals, unaware that their insurance could cover out-of-state prescriptions, forgo purchasing necessary medications due to the high out-of-pocket costs.
The stigma around HIV further complicates the situation. Many evacuees seek refuge with family or friends, and in some cases, individuals hide their HIV status because their family is unaware of their diagnosis. This fear of disclosure can lead to people concealing their medications and, in turn, skipping doses. This issue is not unique to Black people in New Orleans; there are similar patterns of hesitance around revealing one’s HIV status during stressful events nationwide.
“When it comes to the African American community and sex, we don’t talk about sex as we should. … If we don’t handle our mental health when it comes to sex, we definitely won’t handle prevention,” said Singletary.
This silence around sexual health and HIV is especially pronounced in the “three institutions of the Black community: the beauty salon, the barbershop, and the church,” he added, where discussions about sex and HIV prevention are often avoided or distorted.
The risk of missing doses is considerable for individuals with HIV. Without their prescribed antiretroviral therapy (ART), the viral load can rise, leading to complications. During disasters, patients who run out of medication may skip doses to stretch their supply, posing another set of issues.
To mitigate these risks, health care providers and activists implore people to prepare for hurricane season by ensuring they have adequate medication supplies. Patients are encouraged to refill prescriptions, sometimes covering up to 90 days, which can help carry them through an entire hurricane season. Providers also offer resources for contacting pharmacies in case of emergencies.
The Biden administration has recently updated guidelines for providers treating displaced HIV patients, helping those without HIV expertise navigate the complexities of assessing and prescribing ART in times of displacement. This shift is crucial for maintaining continuity of care in emergencies. However, Singletary pointed out that many individuals living with HIV also face systemic barriers related to accessing federal support.
“If I make just enough money not to get federal help, but I don’t make enough to get help, then I’m stuck between a rock and a hard place,” he said. “And if you’re living in those circumstances, HIV prevention and care isn’t necessarily at the top of your mind.”
And while wrap-around services like transportation and housing assistance are vital, they often disappear during a disaster evacuation. This is why advocates are pushing for “unconventional” care, such as funding for medical travel or basic needs and opening clinics on the weekends and longer hours. This would help people with high medical needs continue their care during a crisis. Many individuals are left with tough choices between immediate survival and maintaining their health regimen without these resources. But without a consistent health regimen, survival isn’t guaranteed.
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To build trust in health care systems during times of disaster, Federal Emergency Management Agency shelters can include staff who are well-versed in the latest HIV treatment guidelines, support programs, and resources aimed at creating a stigma-free environment, the CAP analyses concluded. Another way to help reduce the spread of HIV in disaster scenarios is by mobilizing the CDC’s take-home HIV test program.
Before disasters ever happen, on the ground, public health officials and HIV/AIDS program leaders can take proactive steps by integrating climate experts into local HIV planning councils. These councils, which are required to include a diverse range of stakeholders — including health care providers, community organizations, and people living with HIV — can help ensure that climate change and disaster preparedness are factored into HIV care planning.
Overall, addressing the intersection of climate change, HIV care, and racial disparities requires both a more inclusive approach to prevention and a reevaluation of the systems that hinder access to care, especially during times of crisis.
“The uneducation and the continued lack of foresight for a changing world is what’s killing us today,” Singletary concluded.
Some ways vulnerable people can prepare is by “making sure that you have health insurance — public or private.” Dec. 15 is the deadline to enroll for federal coverage that starts Jan. 1.
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