Ongoing Care

Reviewed by: HU Medical Review Board | Last reviewed: September 2019

Advances in HIV treatment over the past several decades have made HIV a manageable, chronic illness. The long-term nature of HIV means that long-term healthcare is also needed. HIV care is an ongoing process, with many healthcare providers, tests, medications, and check-ins, to make sure an HIV-positive individual is leading the healthiest life possible.

Who treats individuals with HIV?

There are several healthcare professionals that you may see in relation to your HIV care. An individual who is a “doctor” has either an MD or DO degree (doctor of medicine or doctor of osteopathic medicine). These individuals went to medical school and are licensed to practice medicine on their own. The MD or DO you see may be a family medicine doctor or general practitioner.

You can also see doctors who have specialized training. Infectious disease doctors are doctors who have received additional training in HIV care. There are also some obstetrician-gynecologists (OB-GYN) who may have experience and training with HIV care. However, your primary care provider does not have to be a doctor in the traditional sense. Nurse practitioners (NP) and physician assistants (PA) have additional graduate-level education and often see patients in primary care or other healthcare settings.1

In addition to your primary care provider or specialist who leads your HIV care team, there are other professionals you may want to consider including on your journey. Several of these include, but are not limited to:

  • Mental health providers
  • Pharmacists
  • Nutritionists
  • Social workers
  • Substance abuse specialists1

HIV-specific laboratory tests

Although an individual with HIV may need to undergo many laboratory tests to help guide their treatment and get more information on their health status, there are several tests that are specific to HIV. Several of these include:

  • CD4 count: CD4 cells, also called T-cells, are cells that are part of the immune system and help our bodies fight off infections and other foreign invaders. A normal CD4 count in a healthy individual can be anywhere from 500-1,500 cells/microliter. When an individual has late-stage HIV, also called AIDS (acquired immunodeficiency syndrome), their CD4 count is below 200 cells/microliter (also referred to as a CD4 count of 200) or they have an AIDS-defining condition. An individual’s CD4 count can predict how active their HIV is and their overall prognosis.2,3
  • HIV viral load: A viral load is a measure of how much HIV is in the body. It measures how many copies of HIV are found in one milliliter of blood. Well-controlled HIV is considered to be around 200 copies per milliliter or less. Someone without HIV will have zero copies of the virus per milliliter. Eventually, a person’s viral load can become “undetectable” meaning that the amount of HIV in the blood is so low, the virus is not detected when tested. This typically happens around 50 copies per milliliter or less. Controlling viral load is essential for those with HIV to lead a longer life with fewer HIV-related complications. Viral load is typically monitored more frequently than CD4 count, as it predicts how well an individual is responding to treatment.2,3
  • HIV drug resistance testing: Some strains of HIV may be resistant, or not respond to, common HIV medications. Additionally, HIV has the potential to mutate as it’s replicating inside the body and gain resistance to a medication that used to be able to treat it. Mutations can be prevented by starting treatment as soon as possible after diagnosis, and taking ART exactly as prescribed. When an individual skips doses or is not adherent to their medications, the amount of medication in their system will decrease, allowing HIV to replicate and mutate, and potentially, become resistant to the medication they’re taking. In order to determine if your HIV is resistant to certain medications, your healthcare provider will perform drug resistance testing.3,4

Starting HIV treatment

Current clinical guidelines indicate that ART should be started as soon as possible after an individual is diagnosed with HIV.4,5 Some clinics may even start treatment the same day as diagnosis. HIV research in recent years has shown that the earlier treatment with ART is started, the better an individual’s overall health outcomes, ability to suppress the virus, and long-term CD4 counts will be.6-9

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Starting ART as soon as possible and successfully suppressing the virus can also decrease the risk of further HIV transmission. Your healthcare provider will monitor your laboratory tests closely to determine how well you’re responding and if new treatment is needed. The best way to prevent treatment from failing is to take it as directed every day. This keeps the virus suppressed in your body and prevents it from mutating. When the virus mutates, it can gain resistance against a drug and the drug becomes less effective.

Other laboratory tests aside from CD4 count, HIV viral load, and HIV drug resistance testing that your provider may order before or during treatment to understand your overall health include, but are not limited to:

  • Hepatitis screening
  • Tuberculosis (TB) testing
  • Testing for other sexually transmitted infections (including chlamydia, gonorrhea, and syphilis, among others)
  • Liver function tests
  • Kidney function tests
  • Complete blood counts (CBC)
  • Glucose levels (blood sugar testing)
  • Urine analysis
  • Pregnancy testing (if you’re a female of reproductive age who is sexually active)
  • Pap smear (if female)3,4

Immunization

Immunizations (vaccines) expose the immune system to a potential future threat in order to “train” it to respond strongly later on. Since vaccines require an active, healthy immune system to train, individuals with a weakened immune system (such as individuals with HIV) may not have as strong of a response to vaccines or may have an adverse reaction to certain vaccines if their immune system is too weak. However, as long as an HIV-positive individual has a relatively high CD4 count and/or is taking ART to keep counts high, they should not have a problem getting the vaccines recommended to the general public. Many of these include:

  • Influenza (flu)
  • TdaP (tetanus, diphtheria, and pertussis)
  • HPV (human papillomavirus—before age 26)
  • HBV (hepatitis B)
  • Meningococcal
  • Pneumococcal
  • Measles, mumps, rubella (MMR—if CD4 count is greater than 200)
  • Varicella (chickenpox—if CD4 count is greater than 200)3,10

HIV care during pregnancy

HIV can travel across the placenta (the tissue that provides blood and nutrients to the baby from its mother, and takes its waste away) during pregnancy and infect an unborn baby. A newborn baby can also get HIV during childbirth, when it is exposed to its mother’s blood or other HIV-containing bodily fluids. HIV may also be transmitted through breastfeeding. If a pregnant woman who is HIV-positive was unable to prevent HIV transmission, such as taking medications, there is about a 15-45 percent chance that she will pass the virus to her baby.

However, with appropriate management, this number can become 5 percent or less across the world, and less than 1 percent in the United States. Pregnant women will receive HIV testing when they first find out they are pregnant, as part of their routine prenatal care. If they are found to be HIV-positive, they will be started on ART as soon as possible and monitored accordingly.11-15

If a pregnant woman is HIV-negative but is at an increased risk of getting the virus, she may be tested again later on in her pregnancy. HIV generally does not impact the method of delivery, however, in some cases, a very high viral load may require a woman to undergo a cesarean delivery (C-section). If a woman’s HIV status and viral load are not known at the time she begins labor, she will most likely be tested before delivery.12,14,15