Living With HIV

In the United States, over 1 million people are displaced each year by natural disasters such as earthquakes, floods, hurricanes, tornados, tsunamis, and wildfires. From 2008 until 2020, over 9 million people were displaced by floods, storms, and wildfires alone.

Anyone can get displaced by a natural disaster, including people with HIV. While it is unclear exactly how many people with HIV are displaced on an annual basis, one study estimated that approximately 5% to 8% of people with HIV are affected globally by emergencies like natural disasters each year.

For people with HIV, displacement caused by disasters can disrupt access to HIV care, medications, and support services, increasing the risk of potential health complications. These disruptions can make it challenging to stick to a prescribed HIV treatment regimen.

To be effective, HIV medicines must be taken as prescribed, which requires many people to take HIV medicines daily. Interruptions to an HIV treatment regimen can greatly reduce the effectiveness of the medications and may lead to decreased immune function, increased vulnerability to opportunistic infections, and increased risk of HIV transmission.

In addition, interruptions or changes to an HIV treatment regimen can increase the risk of developing drug-resistant HIV. This means that one or more drugs in a person’s HIV treatment regimen will no longer be effective and can limit future HIV treatment options. See the Drug Resistance fact sheet for more information on drug-resistant HIV.

People with HIV should make every effort to continue taking their HIV medicines exactly as prescribed if they get displaced by a natural disaster. If possible, displaced people should also attempt to continue attending health care appointments and taking other medications as prescribed to avoid any adverse reactions, even if that means finding a new health care provider.

Whenever possible, it is preferred that people with HIV remain on the same HIV treatment regimen, as long as it has been working effectively. Having the prescription information available to share with a new health care provider in the event of emergency-related displacement can reduce the likelihood of delays in treatment or changes to an HIV treatment regimen.

Aside from having the necessary information and resources noted above, people with HIV who are displaced by a disaster should reach out for assistance as needed. The resources below could help provide support to people in these circumstances:

• Finding a new health care provider: Ryan White HIV/AIDS Program Medical Provider Locator or American Academy of HIV Medicine (if displaced while outside of the United States)
• Getting housing support: FEMA Individuals and Households Program or Housing Opportunities for Persons With AIDS (HOPWA)
• Assistance with HIV medicines: Directory of AIDS Drug Assistance Programs or ASPR Emergency Prescription Assistance Program
• Mental health support: SAMSHA Disaster Distress Helpline
• Transportation services: Ryan White HIV/AIDS Program: Available Care and Services (only available in some areas)

In the event that someone with HIV cannot access HIV medicines after being displaced, it is important to restart treatment as soon as possible. Although the virus may temporarily spread, a new HIV treatment regimen will help suppress the virus and return to normal health when access to treatment becomes available. In addition, it can be helpful to temporarily avoid sexual activity to reduce the risk of HIV transmission.

HIV pre-exposure prophylaxis and/or post-exposure prophylaxis can also reduce the likelihood of sexual HIV transmission to a partner if someone with HIV cannot access their normal HIV medicines, though these medicines may also be unavailable in such cases. A health care provider should be able to provide guidance in these situations.

Given the risks associated with treatment interruptions, it is important for people with HIV to be prepared for potential displacement caused by natural disasters. To help prepare, people with HIV can:

• Pack an Emergency Kit: Create an emergency kit that includes a supply of essential medications (such as a month’s supply of HIV medicines), copies of medical records, and contact information for health care providers. Medical records and provider contact information may be available on an electronic patient portal but usually require an account with login information.
• Plan Ahead: Identify HIV care providers and pharmacies in potential relocation areas. If possible, predetermine a safe place to go in the event of a regional emergency, and evacuate early in the event of an incoming disaster (such as a hurricane). Once the disaster occurs, it can be more difficult to access necessary resources.
• Stay Connected: Maintain communication with health care providers (original and/or new, if applicable) and support networks.

In modern times, many health care organizations offer convenient resources through a patient portal that can be especially valuable in the event of a displacement. These resources often include:

• Brand name(s) and dose(s) of all HIV medicines in the treatment regimen
• Health history including the most recent HIV viral load and CD4 cell count
• Communication tools to change pharmacies or contact the health care provider for questions or concerns

For people who do not have access to a patient portal, the information noted above could be helpful to include in an emergency kit.

From the NIH Office of AIDS Research:

• Guidance for Non-HIV-Specialized Providers Caring for People With HIV Who Have Been Displaced by Disasters (Such as a Hurricane)
• Guidelines for the Use of Antiretrovirals in Adults and Adolescents With HIV:
  • Discontinuation or Interruption of Antiretroviral Therapy

From the Administration for Children and Families:

• Human Service Needs and Disaster Displacement: Why Disaster Displacement and Why Now

From Medline Plus:

• Patient Portals – An Online Tool For Your Health

Also see the HIV Source collection of HIV links and resources.