Resources for Consumers

Resources for Consumers

Online Resources for Education, Information, and Services

August 2021





Consumer Q/A: Starting Antiretroviral Therapy (ART) for HIV

August 2017

This Consumer Q/A covers the topics in the New York State Department of Health (NYSDOH) Selecting an Initial ART Regimen Guideline. It may help people living with HIV talk with their care providers about ART.

About the Guideline

What is the purpose of the guideline? The guideline is a set of recommendations for care providers. It explains who should take ART and why, when ART should be started, and how an ART regimen should be chosen.

Who wrote the guideline? The guideline was written by a group of doctors in New York who specialize in treating people living with HIV infection. It was also reviewed by people living with HIV. The recommendations are based on research studies and the doctors’ experience treating patients.

Should You Take ART?

Who should take ART? ART is recommended for everyone who is diagnosed with HIV infection. Even if you have a higher CD4 cell count, ART is beneficial for your health. Your care provider will talk with you about the reasons for starting ART and give you the information you need to decide. The final decision about taking ART is yours to make.

What is the goal of ART? Although ART is not a cure for HIV, it can reduce and control the amount of HIV virus in the blood (measured by a viral load test) and help the immune system stay strong (measured by CD4 cell count). An “undetectable” viral load does not mean there is no HIV in the body, but it does mean that you will stay healthier and be much less likely to transmit the virus to others.

–> Learn more about: Undetectable viral load and CD4 cell count

What are the benefits of taking ART? Reasons for taking ART include:

  • Reducing the amount of HIV in the body.
  • Strengthening the immune system.
  • Preventing illness.
  • Reducing the risk of passing HIV to an uninfected sex partner.
  • For a pregnant woman, reducing or eliminating the risk of passing HIV to the baby.

Are there risks with taking ART? For the most part, ART is very safe and extremely effective. Some ART medications can decrease bone strength and affect kidney function. Some may increase the risk of heart attack. Some may worsen existing liver disease. These effects are not usual.

Some ART medications cannot be taken with drugs used to treat other health conditions. Your care provider will work with you to determine which ART medications are best for you.

–> Learn more about: ART side effects here and here and about drug interactions

When is the best time to start taking ART? Most people should start taking ART as soon as possible. The goal is to make the HIV viral load undetectable as quickly as possible. Doing so will help a person with HIV stay healthy and will help prevent transmission of the HIV virus to others.

Starting ART as soon as possible is especially important if a person has AIDS, is pregnant, is older than 50, or has chronic hepatitis B or C infection.

–> Learn more about: When to start ART

Before You Start

What do you and your care provider need to know before you start ART? Your care provider will order lab tests, including current CD4 cell count, HIV viral load, HIV drug resistance, and kidney and liver function tests. These tests will help your care provider choose the right ART medications for you.

Your care provider will also provide information about HIV, the risks and benefits of ART, and the need to take ART medications as they are prescribed. Your care provider can help you figure out how to solve any problems that might interfere with taking your ART medications so you can benefit from this therapy.

–> Learn more about: Steps to take before and after starting ART

Are there payment assistance programs available for ART drugs? If you live in New York State and do not have health insurance, you may qualify for Medicaid. You may also qualify for the NYSDOH HIV Uninsured Care Program, which provides access to free healthcare (ART drugs; primary care; home care; and the ADAP Plus Insurance Continuation Program, or APIC).

Getting Started

How will your care provider choose ART drugs for you? Your care provider will talk with you about what’s most important to you. He/she may ask you questions such as: Is it important to you to take the lowest possible number of pills? Is there a particular schedule for taking medications that will work best for you? Does the size of a pill or tablet matter to you?

Your care provider will also check for possible interactions between ART drugs and other medications that you are taking and talk with you about side effects that you can and cannot tolerate.

–> Learn more about: Choosing an ART regimen and about HIV medicines

What is “adherence” and why is it important? Taking medications the way they are prescribed (how often, time of day, and with or without food) is called “adherence.”

It is important to take ART drugs on a regular schedule because missing doses can lead to drug resistance (see the questions and answers about drug resistance below). Taking the drugs with or without food, as prescribed, will make sure your body absorbs the proper amount of medication.

If you miss doses of ART drugs, then the level of drug in your blood may be too low to stop the HIV virus from multiplying. This can lead to drug resistance.

–> Learn more about: Adherence

Do ART drugs cause side effects? ART drugs can cause temporary side effects, such as nausea, vomiting, diarrhea, headache, and a general feeling of being unwell or sick. These usually resolve after the first few weeks of taking ART. If you experience side effects, get in touch with your care provider. He or she may have tips to help you reduce the symptoms and make the drugs easier for you to take. Because there are different medications that fight HIV, your care provider will probably be able to find medications that work if you need to switch. Do not stop taking ART or lower the dose.

–> Learn more about: ART side effects

Is it safe to take ART with other medications, alcohol, or recreational drugs? Many medications, including ART, can interact with other medicines, nutritional supplements, or even vitamins. 

Drug Resistance

What is drug resistance? Drug resistance develops when you don’t have high enough levels of the ART medication in your bloodstream to control the virus. Usually this happens because of missed doses of medications. However, it could result from interference from other medications, including over-the-counter medications such as acid blockers for heartburn.

When ART medications are taken daily as directed, resistance is extremely unusual. Resistance would be suspected if you have a detectable viral load despite being on your medication. Your care provider can test for this and help you solve any problems with adherence that you encounter.

How can you reduce your chances of developing drug resistance? To reduce the chances of developing drug-resistant HIV:

  • Work with your care provider to find ART drugs that are effective and that you can you tolerate.
  • Take the ART drugs as prescribed (adherence).
  • Keep all appointments with your HIV care provider.
  • Keep a record of all ART drugs you have been prescribed in the past to share with your care provider.

Can ART be stopped? Some people may want to stop ART because they are tired of taking pills every day or are having side effects, or they think they are well enough to skip the medications. If you stop taking ART or start missing doses, you may develop drug resistance. ART should not be stopped without talking to your care provider first. Your care provider can help find ways to make taking ART easier.

–> Learn more about: ART interruption

Consumer Q/A: IRIS in People Who Take ART for HIV Infection

September 2017

The New York State Department of Health AIDS Institute has released a new guideline about diagnosing and treating immune reconstitution inflammatory syndrome, or IRIS. This Q/A fact sheet covers the topics in the guideline and can help people with HIV talk with their healthcare providers about IRIS.

About the Guideline

What is the purpose of the guideline? The guideline is a set of recommendations for healthcare providers. It explains how to define, screen for, diagnose, and treat IRIS.

Who wrote the guideline? The guideline was written by a group of healthcare providers in New York who specialize in treating people who have HIV infection. It was also reviewed by people living with HIV. The recommendations are based on research studies and the doctors’ experience treating patients.

What is IRIS?

What is IRIS? “IRIS” is short for “immune reconstitution inflammatory response.” It is an illness or set of symptoms that can occur as a person’s immune system gets stronger after she or he starts antiretroviral therapy (ART).

IRIS is a sign that the immune system is getting stronger.

When IRIS occurs, it happens because a person’s immune system may fight a disease that (1) was already treated or is being treated or (2) was already there but had not been diagnosed.

Common symptoms include fevers, fatigue, abdominal pain, and skin rashes.

IRIS usually lasts for a few weeks.

What is inflammation? Inflammation normally occurs when a person’s immune system fights an infection or some other illnesses. For example, inflammation is what makes people feel terrible when they have the flu. With IRIS, inflammation can occur at an unusually high level as the immune system gets stronger.

When does IRIS start? IRIS usually occurs in the first 4 to 8 weeks after a person starts ART, but it can happen later.

Does everyone who starts ART get IRIS? No. Most people who start ART do not get IRIS. IRIS occurs most often in people who have a very low CD4 count (usually under 200) when they start ART.

What illnesses are associated with IRIS? The most common illnesses associated with IRIS are listed below.

  • CMV retinitis
  • hepatitis B and C (HBV and HCV)
  • cryptococcal meningitis
  • progressive multifocal leukoencephalopathy (PML)
  • tuberculosis (TB)
  • herpes simplex virus (HSV)
  • varicella zoster virus (VZV)
  • Mycobacterium avium complex (MAC)
  • cerebral toxoplasmosis
  • autoimmune diseases
  • skin diseases
  • Kaposi’s sarcoma (KS)

Diagnosing IRIS

How will I or my healthcare provider know if I have IRIS? There is no specific test to diagnose IRIS. Healthcare providers make the diagnosis after ruling out other problems (such as a bad reaction to ART medications, untreated infection, or other disease).

The main symptoms of IRIS are symptoms related to the inflammation and may include fevers, extreme fatigue, skin rashes, and swelling of lymph nodes or other areas with infection.

People with IRIS usually feel sick. However, IRIS symptoms can vary depending on the underlying illness.

In general, anyone who starts to feel sick after starting ART should tell his or her healthcare provider immediately.

Treating IRIS

How is IRIS treated? Mild IRIS, which signals that the body’s immune system is improving, usually does not require any treatment. A person may just have to “ride it out” and possibly use medications such as acetaminophen or ibuprofen to lessen symptoms.

Severe IRIS, which may keep a person from engaging in regular, daily activities, does require treatment. Without treatment, some severe IRIS may cause permanent disability, such as blindness from cytomegalovirus (CMV). Severe, life-threatening IRIS that does not go away on its own is rare.

Are there any ART drugs that do not cause IRIS? ART drugs themselves do not cause IRIS. IRIS is caused by the recovery of the immune system that was weakened by HIV.

How is IRIS treated? A person who is diagnosed with IRIS will be treated for the underlying condition triggered by IRIS and may receive medications such as acetaminophen or ibuprofen. For severe IRIS, he or she may receive prednisone or other corticosteroids.

Continuing ART

Will I have to stop ART if I have IRIS? ART is usually continued. Your healthcare provider might consider stopping your ART in life-threatening cases in which treatment did not result in improvement.

If I have to stop taking ART, will I get IRIS again when I resume ART? You could. Risks of stopping ART include acquiring a new opportunistic illness as well as IRIS occurring when therapy is started again later.

Learn More About IRIS