Did you know a lifetime of HIV care can cost half a million dollars?
HIV care has come a long way since the 1980s, and with the right treatment someone diagnosed today can now live just as long as an HIV-negative person. But who pays for this care, and what does it involve?
We’ve dived into the data to find some surprising statistics on the costs of HIV treatment and prevention. It turns out treating and preventing HIV isn’t just a good health strategy – it’s a good economic one! Read on to learn more.
The True Financial Impact of an HIV Diagnosis
The estimated lifetime cost of an HIV diagnosis in the United States is $510k.*
This number is an average, because someone’s HIV care costs can vary. This is because someone’s health can be affected by everything from where they live to their income level. For example, living in poverty may mean being exposed to higher levels of pollution and having less access to nutritious, affordable food.
How quickly you start HIV treatment after becoming HIV-positive can also affect health costs. We know that starting treatment as soon as possible is better for your long-term health, which means lower costs in the long run.
The longer someone goes without being diagnosed or starting treatment, the more damage HIV can do to the body. Even though treatment can eventually get HIV under control, this initial damage can raise the risk of other health conditions further down the line. This can add to their overall health costs.
* In 2021, researchers estimated it at $420k – we’ve adjusted this for inflation.
What Drives the High Cost of HIV Healthcare?
The total cost of HIV healthcare is high because it includes all healthcare expenses that come with an HIV diagnosis. The biggest cost in HIV healthcare is antiretroviral medication.
HIV can’t be cured, but it can be effectively managed with treatment. However, someone must be on medication for life. These medications can also be expensive, especially newer drugs that do not have cheaper generic versions.
There are also other health costs that go into this total. For example, someone might need to prevent or treat related health conditions or have routine tests. They might also need emergency room visits and inpatient or outpatient care.
One study estimated lifetime HIV healthcare costs to be 60% for antiretroviral medications, 15% for other medications, and 25% non-drug costs.
Who Pays the Costs of HIV?
HIV care can be expensive. But who pays for it?
As with most healthcare in the United States, this depends on health insurance. These costs can be covered by private insurance and public programs.
Private Insurance
If you have private insurance, then your insurer pays towards healthcare costs. How much you pay on top of this will vary depending on your insurance plan.
Most insurance plans have a deductible, which is an amount the patient has to pay first before their insurance kicks in. This is usually an annual amount. Some plans have separate deductibles for prescription drugs.
A co-pay is the amount someone has to pay towards each expense their insurance covers. Your premium is the fee you pay for having coverage, usually monthly.
An example:
If your annual deductible is $1000, then you must pay $1000 of your healthcare expenses before your insurance kicks in. For example, if you hadn’t used any healthcare services in the year and you had a routine doctor's visit that costs $200, then you would pay $200.
If your first healthcare expense of the year is an emergency room visit that costs $3000, then you would pay $1000 towards it before your insurance is activated. If you had a co-pay of 20%, then you would pay 20% of your remaining balance.
20% of $2000 is $400, so your total expenses for the emergency room visit would be $1400 and your insurance covers $1600.
If you have already met your annual deductible, then you would only need to pay the co-pay on your remaining expenses. In this example of a $3000 emergency room visit, you would pay $600 if you had a co-pay of 20%.
Public Programs
Some people don’t have private health insurance. For low-income Americans, public programs can help cover the cost of healthcare.
Medicaid programs are public insurance plans funded and run by states and the federal government together. States decide how much to charge for fees like insurance premiums, co-pays and deductibles.
Another public program called Medicare is designed for people over 65 and people with long-term disabilities. Medicare is a federal program, so the federal government sets its fees.
Being HIV-positive itself doesn’t automatically count as a disability, because modern treatment can keep you healthy. However, complications or related conditions from HIV could qualify someone. As people living with HIV get older, more of them are qualifying for Medicare through their age.
There is also a public program to help fund HIV-related healthcare costs for low-income Americans. The Ryan White HIV/AIDS Program (RWAP) is a federal program that provides grants to states, counties, cities and community groups to fund HIV prevention, care and support.
How many people have health coverage?
In 2023, 99% of Americans living with HIV had some type of health coverage. The different types of coverage are they had are:
- Ryan White AIDS Program (RWAP): 47%
- Medicaid: 45%
- Private insurance: 43%
- Medicare: 30%
These percentages total more than 100 because some people qualify for more than one program. Data provided by the CDC.
How much does HIV care cost the government?
The federal government spent a total of $29 billion on HIV-related healthcare in the financial year 2022 (data compiled by KFF). Most of the federal government’s budget is funded by taxes. State budgets, which support programs like Medicaid, are also funded through taxes.
Regional Disparities: The Cost of New HIV Cases Across the U.S.
The amount of money being spent on HIV care varies by state, because some states have more people living with HIV. States with bigger populations will have more people living with HIV in them, but the proportion of people living with HIV is not the same across states.
Some states have a higher rate of people living with HIV than others. For example, in California there are 462 people living with HIV out of every 100,000 people. There are only a few states and territories with rates above 600: Florida, D.C., Georgia, Louisiana, Maryland, New York and Puerto Rico.
The CDC estimates how many people in each state are living with HIV, both diagnosed and undiagnosed. Using the most recent data from 2022, we’ve calculated the total lifetime cost of HIV care in each state:
Prevention Pays Off: The Cost-Effectiveness of HIV Prevention
Preventing new cases of HIV is good economics. A lifetime of HIV care is expensive, and this is often funded by government programs using tax dollars. But preventing HIV also requires spending money.
When the money spent on something is less than it would cost the alternative without it, we say it’s cost-effective. Someone (in this case, a government) is still spending money – they’re just spending less than they would be. Because HIV care is so expensive, HIV prevention programs cost less money than governments would spend treating the cases of HIV they prevent.
HIV prevention isn’t a one-size-fits-all, though. There are many ways to prevent HIV, and many different communities affected by it. This means that some programs are even more cost-effective than others. Let’s explore them!
PrEP: How Cost-Effective Is It?
PrEP is a medication that helps prevent HIV transmission through sex when taken as prescribed by HIV-negative people. It involves taking medications that are also used as part of HIV treatment.
Putting someone on PrEP costs less than HIV care because they might only be on PrEP for a fixed period of time (unlike HIV treatment, which is lifelong). There are generic versions of PrEP medication available, which lowers costs for patients and their insurance providers. An HIV-negative person also won’t have the other health costs that can come with being HIV-positive. This means that PrEP programs are cost-effective.
The cost-effectiveness of PrEP programs can vary by location. In places and communities where large numbers of people have access to PrEP and HIV treatment, there is a lower chance that someone on PrEP might have a potential HIV exposure (in other words, they are more likely to be having sex with HIV-negative people).
In places and communities with less access to healthcare, there is a higher chance that someone on PrEP might have a potential HIV exposure. Dollars spent on PrEP programs in these communities with less health equity are more likely to be preventing HIV cases. This makes these PrEP programs even more cost-effective.
One study modelled the cost-effectiveness of PrEP programs in different cities. It found that scaling up PrEP programs in cities like Atlanta and Miami would be the most cost-effective.
Treatment as Prevention: A Cost-Effective Solution?
Research suggests that focusing prevention programs on people who are living with HIV is even more cost-effective than PrEP. This all comes down to probability - in other words, how likely each prevention dollar spent will prevent a new case of HIV.
If someone living with HIV is on treatment and reaches an undetectable viral load then they can’t transmit HIV through sex. This means we know there is a very high chance we are preventing new cases of HIV – for example, if any of their future sex partners are HIV-negative and not on PrEP.
Targeting HIV Treatment
But there’s more! An HIV treatment program can be even more cost-effective depending on the community it targets. Again, this comes down to probability.
Some communities have a higher burden of HIV along with less access to PrEP, like African-American men who have sex with men in the South. This is because structural factors like racism and poverty mean this group has less access to healthcare. If someone in this community is living with HIV, there is a higher chance that their sex partners are not already protected with PrEP.
In this community, connecting someone with HIV treatment and helping them reach undetectable has an even higher probability of preventing new HIV cases. This makes it more cost-effective. The same principle works for any community that is affected by HIV but has less access to healthcare than others.
The Untapped Potential of HIV Testing
Different factors go into calculating how cost-effective an HIV prevention program is. One of these, as we’ve shown above, is the probability of preventing new HIV cases. The higher the number of likely prevented cases is, the more costs it’s helping avoid. This boosts its cost-effectiveness.
Another factor is the cost of programs themselves. PrEP and HIV treatment can be expensive prevention tools because medications can cost a lot of money (although this is still less than treating new HIV cases). But the cheapest of all these tools is an unexpected one – HIV testing.
HIV testing is important because diagnosing cases of HIV is the first step to connecting someone with care and getting them to undetectable. By testing for and diagnosing cases of HIV, we can prevent onward transmissions. This is important because someone is most likely to transmit HIV when they don’t know they have it, as the level of virus in their blood (their “viral load”) can be high.
HIV testing is the most cost-effective prevention tool because it’s so inexpensive. Rapid tests are relatively cheap, easy to use, can be performed almost anywhere, and do not require specialized clinical staff to do them.
Important: HIV testing is very cost-effective as a prevention program, but it’s not a highly effective prevention method by itself. For HIV-negative people, regular testing should be used in addition to effective prevention tools like condoms or PrEP.
Taking Action: Why Investing in HIV Care Is a Must
So, what does the data show?
HIV care keeps people, communities and economies healthy. The prevention strategies above are great on their own, but they’re even better when used together. By scaling up PrEP access, increasing testing and then helping people start and stay on HIV treatment, we can reduce future HIV cases and avoid the expenses that come with HIV care.
Across the United States, Freddie partners with community organizations to provide our PrEP care. These groups have been fighting to achieve health equity for HIV-affected communities for decades, and we’re proud to work alongside them. Some of their programs are also great examples of targeted, cost-effective HIV prevention initiatives.
For example, Freddie’s California partner, The Wall Las Memorias in Los Angeles, has been serving LGBTQ2S+ and Latino communities since 1993. By tailoring their programs towards these groups and having community members deliver these services, they can reach their target audience better to communicate health information. And since Latino communities face higher rates of HIV and more barriers to healthcare, these HIV prevention programs are especially cost-effective.
Another Freddie partner, RipplePHX, delivers targeted, cost-effective outreach programs to Latino and LGBTQ2S+ communities in Arizona. But organizations like these rely on external funding like donations and grants in order to do their work. We don’t think it should be this way!
We know that HIV treatment and prevention programs make good economic sense. They should be properly funded by all levels of government, especially when it comes to delivering care for communities at highest risk. We’re not there yet though – until we are, Freddie partners with community organizations to raise money for them through every PrEP prescription in our operating states.
Want to do your part to help prevent HIV? Why not donate or volunteer at your local HIV organization!
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