The Lifetime Cost of HIV

Balancing the Relationship Between Cost and Quality Care

Human immunodeficiency virus (HIV) affects around 1.2 million people in the United States. Great strides have been made to improve their life expectancy, especially when the virus is diagnosed early. However, there is no cure. A lifetime of doctor's appointments, testing, and treatments are needed to manage HIV. And aside from them being vital, they are expensive.

This article discusses the relationship between the cost and the effectiveness of HIV treatment. It also examines how lifetime cost varies depending on when treatment begins.

Hand holding HIV pills

YakubovAlim / Getty Images

What Is Lifetime Cost?

Lifetime cost is the total cost of healthcare and treatment spent between the time a person is diagnosed with an illness until their death.

HIV Care Expenses

HIV is a virus that attacks the immune system. Left unmanaged, it will advance through all three of the following stages without exception:

  1. Acute HIV infection: The virus begins to attack the immune system, causing flu-like symptoms between two and four weeks after a person is infected.
  2. Chronic HIV infection: The virus multiplies in the body, but there are often no symptoms. This stage may last for a decade or more.
  3. Acquired immune deficiency syndrome (AIDS): HIV has severely damaged the immune system, making it very difficult for a person to fight off infections or AIDS-related cancers. Without treatment, a person diagnosed with AIDS survives an average of three years.

HIV treatment begins as soon as the diagnosis is made. It's also from this point that HIV care-related costs begin.

Your lifetime cost for HIV care is the total amount you can expect to pay for the following:

  1. Lab tests: Close, routine monitoring to determine your treatment and assess how well it is working
  2. Antiretroviral therapy (ART): A combination of medications you will take consistently to slow the progression of HIV
  3. Medical care: Including any medical bills from doctor's appointments or visits to the ER

Your bills may vary from year to year, depending on how stable your condition is, how often your doctor orders tests, what your insurance covers, and more.

Lab Tests

There are two types of lab tests that you will need to take regularly: a test that measures your CD4 count, and a test that measures your viral load.

HIV weakens the immune system by destroying CD4s—white blood cells that play a critical role in your body's immune response. Your CD4 count will be monitored regularly to see how far the infection has advanced and if treatment is working to protect your CD4s.

In the first two years after your diagnosis, your CD4 count will be measured every three to six months with a simple blood test. After that, it may be measured every six to 12 months.

HIV viral load tests are blood tests that measure how many HIV particles are in an HIV-positive person's blood. Viral load is generally tested every three to four months.

A good sign that HIV treatment is working is when CD4 count is high and viral load is low.

Estimated costs for lab tests: Expect to pay around $45 per CD4 count test and $107 per viral load test.

Medication

HIV is treated with antiretroviral therapy (ART)—a combination of three or more drugs that stops the virus from multiplying and destroying CD4 cells.

You will be prescribed ART medication shortly after your diagnosis. In most cases, ART is taken every day.

This regimen may be altered or added to based on your specific needs. For example, your ART regimen may be changed if you become pregnant, or if your health insurance does not cover the cost of your medications.

Estimated cost for ART: $36,000 a year

Most insured people pay between 9% and 14% of this out of pocket, while insurance pays up to 24%. The rest may be covered by Medicare and discounts provided by ART manufacturers.

Medical Care

Because HIV damages the immune system, people with HIV are more vulnerable to AIDS-related cancers, pneumonia, HIV-wasting syndrome, and more. These illnesses are known as opportunistic infections.

Each time you visit your doctor, you and/or your insurance provider will be billed. In addition to regular doctor's appointments for lab tests and HIV-related checkups, you may incur more medical bills if you develop an opportunistic infection.

For this reason, the total cost of your medical bills can vary quite a bit from year to year.

Estimated cost for medical care: Between $80,000 and $113,000 after insurance or other financial aid

Recap

HIV medication makes up the bulk of lifetime care expenses. Lab tests and medical visits can add up, though.

Total Lifetime Cost

Research shows that, while early HIV diagnosis and treatment improves health outcomes and life expectancy, it also comes with a higher lifetime cost.

To investigate this, researchers separated 10,000 HIV-positive people into four groups based on the CD4 counts they had when first diagnosed.

The following chart compares each group's CD4 count, life expectancy, and lifetime cost after insurance and other financial aid:

CD4 Count at Diagnosis Additional Life Expectancy Lifetime Cost
200 or less 30.73 years after HIV diagnosis $253,222
201-350 36.57 years after HIV diagnosis $326,705
351-500 37.94 years after HIV diagnosis $372,344
501-900 38.08 years after HIV diagnosis $402,238

Note: A person is diagnosed with AIDS when their CD4 count drops below 200 CD4 cells per cubic millimeter of blood (200 cells/mm). For comparison, a healthy CD4 count for an HIV-negative person ranges between 500 and 1600 cells/mm.

At the end of the study, researchers made several conclusions:

  • Life expectancy: People who were diagnosed with HIV in an early stage of infection lived 24% longer than people who were diagnosed in a later stage.
  • AIDS diagnosis: HIV progressed to AIDS twice as fast in people who received treatment late compared to people who began treatment early.
  • Quality of life: People who began treatment early had a 44% higher quality of life score than people who began treatment late.
  • HIV transmission: People who began treatment early passed HIV along to 50% less people than those who began treatment late.
  • Lifetime cost: People who began ART early had a 60% higher lifetime cost than people who began ART after their HIV infection was advanced.

The results show that people diagnosed with HIV at an early stage—and who begin ART promptly—live longer and have better health outcomes. However, their lifetime cost is significantly higher because they spend more years taking ART.

In another study, the average lifetime cost of healthcare and treatment was $291,000 after insurance and financial aid, with ART accounting for 68% of the total cost.

Many people live with HIV for several years before they are diagnosed. In fact, an estimated 13% of people with HIV do not know they have it.

While undiagnosed people with HIV obviously don't have ART expenses, the study found that they pay nearly as much for doctor's appointments and emergency medical care as those who are diagnosed.

Recap

All in all, the lifetime cost of HIV-related care is higher for a person who begins ART early. Undiagnosed people don't have the burden of ART expenses, but their lifetime medical bills are still high and their health outcomes are poorer.

Early Treatment, Better Outcomes

The effectiveness of healthcare and ART for an HIV-positive person depends on three main factors:

  • How advanced the infection is when they are diagnosed: Unfortunately, the fact that HIV symptoms often disappear for a long duration leads many people to delay being evaluated.
  • The quality of the initial healthcare they receive
  • How soon they begin ART and how effective the therapy is

According to Anthony Fauci, MD, Director of the National Institute of Allergy and Infectious Diseases, "We now have clear-cut proof that it is of significantly greater health benefit to an HIV-infected person to start antiretroviral therapy sooner rather than later."

So while early diagnosis and treatment comes with greater care financial costs, the benefits are undeniable. Dr. Fauci's statement is supported by numerous studies.

In one, researchers followed 4,685 HIV-positive adults, all of whom began the study with a normal CD4 count above 500 cells/mm. The adults were placed in two groups: one began ART immediately, while the other group delayed ART until their CD4 counts dropped below 350 cells/mm.

After three years, researchers found that the adults who began ART immediately were 72% less likely to develop serious AIDS-related events and 57% less likely to die as a result of them.

Cost-Saving Strategies

Since 2012, the cost of ART has increased by at least 30%. This made an already expensive regimen that much more so.

People who cannot afford ART are far less likely to stick with it, according to the Department of Health and Human Services (DHHS). The agency urges clinicians to "minimize patients’ out-of-pocket drug-related expenses whenever possible."

If you are finding it difficult to keep up with the cost of your HIV-related healthcare, talk to your doctor about the following options.

Generic Drug Options

Taking generic ART drugs rather than name brand drugs may lower your lifetime cost by thousands of dollars.

One team of researchers looked at the price difference between generic and brand name ART drugs. They found that taking generic drugs could lower the lifetime cost by an estimated 20%.

The U.S. Food and Drug Administration (FDA) has approved multiple generic options for each class of ART drugs. They cost less than their brand name counterparts and are equally as effective.

The full list of generic drug options is available on the official National Health Institute website for HIV.

In some cases, switching to a generic ART regimen may increase the number of pills you have to take in one sitting. But it should not increase how many times per day you need to take those pills.

When discussing a generic ART regimen with your doctor, be sure to mention if having to take more pills would make it difficult for you to stick with your treatment. If so, a single-tablet ART may be a better option, so long as it fits your needs.

Single-Tablet ART Regimens

A single-tablet regimen (STR) combines multiple drugs into one tablet. STRs allow people with HIV to take fewer pills each time they dose, making it easier and simpler to maintain their ART regimen long-term.

There is always a chance that a drug will be temporarily or permanently discontinued from the market. Or, prescriptions for each drug in an ART regimen may not be refilled at the same time. STRs solve these problems, as there is only one tablet to keep track of.

In 2021, the FDA also approved Cabenuva, a complete ART regimen that is taken via injection once per month. It combines the drugs cabotegravir and rilpivirine into one treatment, allowing it to replace a multiple-pill ART regimen.

Fewer Lab Tests

To reduce lifetime cost, the DHHS recommends that doctors limit CD4 tests for people who have been on ART at least two years and have undetectable viral loads.

They state that viral load testing should be considered the primary measure of treatment success, and it should be tested every three to four months to confirm it stays undetected.

For people with an undetectable viral load, the DHHS also recommends that:

  • CD4 count should be tested every 12 months for people with CD4 counts between 300 and 500 cells/mm
  • CD4 monitoring should be optional for people with CD4 counts over 500 cells/mm

If you are getting tested more frequently than this and you're not sure why, talk to your doctor. Ultimately, how often you get tested is a decision that must be made with them.

Even when your CD4 count and viral load are considered stable, you should see your doctor any time you develop a new or worsening symptom.

AIDS Drug Assistance Programs

If you are a U.S. citizen and you do not have insurance, or your insurance does not cover your HIV care, you may qualify for the Ryan White HIV/AIDS program. This AIDS drug assistance program (ADAP) funds free or low-cost medications, healthcare, and support services for low-income people affected by the disease.

Over half of Americans with HIV are covered by Ryan White. Since the program began in 1990, its coverage has helped millions of people slow the progression of their disease. One study even found that people covered by Ryan White have significantly better health outcomes than people covered by private insurance, medicaid, or medicare.

You can find out if you are eligible by calling your state's Ryan White program hotline. An agent will point you toward healthcare providers in your area who participate. Upon receiving care at one of those facilities, you will be assigned a case worker who will work with you to apply for coverage.

You can also find Ryan White healthcare providers in your area by using an online locator hosted by the Health Resources and Services Administration.

Patient Assistance Programs

If you are not eligible for medicare, medicaid, or ADAPs like Ryan White, you may apply for patient assistance programs (PAPs).

PAPs are programs funded by pharmaceutical companies that help uninsured and under-insured people with HIV get low-cost or free ART medications.

Different PAPs have different eligibility requirements, but it usually depends on your income level. To apply for a PAP, you and your healthcare provider will each fill out separate paperwork, then a case worker will mail your application to the pharmaceutical company for consideration.

A common patient assistance program form for HIV is available, and many PAP programs may accept it. Individual manufacturers may also have their own forms, so it's worth checking their websites.

Clinical Trials

The search for ways to prevent, treat, and cure HIV is ongoing. To evaluate the safety and effectiveness of new medical approaches, drug manufacturers and researchers conduct clinical trials.

Depending on the trial, you may be able to participate. Clinical trials often offer free medication and medical care in exchange for your time and help. You may also receive money or gift cards, or be reimbursed for meals and transportation.

If you are interested in participating in clinical trials, you can contact the National Institute of Health at 1-800-448-0440, or email ContactUs@HIVinfo.NIH.gov to learn more.

Know that participating in a clinical trial may require you to take new and experimental drugs or participate in tests that can be uncomfortable. Understand going in that there may be risks involved, including unpleasant side effects. Discuss the prospect of enrolling with your doctor.

Integrative HIV Care

Research shows that HIV-positive people who receive supportive care for mental health, substance use disorders, and sexual health may have better health outcomes and lower lifetime cost. Care programs like these are known as integrative HIV services.

Integrative care is available for HIV-positive people with substance use disorders, transgender people with HIV, older adults with HIV, and more. These services can help remove barriers to HIV care and treatment through financial assistance, counseling, and other means of support.

If you are interested in an integrative care service, talk to your doctor. Integrative care teams are put together by healthcare providers. Your doctor may also be able to point you toward an integrated HIV care clinic in your community.

Recap

HIV care is expensive and out of reach for most people without some assistance. There are a variety of cost-saving programs and strategies that can help you reduce your lifetime cost. You may be eligible for more than you might expect, so they are worth exploring.

Summary

The total lifetime cost for HIV care includes doctor's appointments, lab tests, and ART. The bulk of the cost comes from ART, but starting ART early can increase your life expectancy and improve your quality of life.

If you are concerned about the cost of your HIV treatment, talk to your doctor. With their OK, you may be able to lower your lifetime cost by prescribing generic medications, recommending a clinical trial, or offering other money-saving strategies.

A Word From Verywell

Living with HIV can be isolating at times, but there is no need to feel alone. Chances are there is an HIV support group online or in your community that you can join. Support groups provide opportunities to connect with people who understand what it's like to live with HIV—from overcoming stigma to managing symptoms and dealing with money matters.

These judgment-free zones are a great place to express your concerns (financial or otherwise), ask for advice, and learn how to cope with HIV.

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