If you’re living with HIV, the decision to start treatment may be the most important one you make for your well-being. And in one sense, starting HIV medications is really easy: You get a prescription, you pop open a pill bottle, and bam, you’re taking a tablet every day, no big deal.
But for plenty of people, starting HIV treatment is a big deal. And you may have a ton of questions that need answering: When’s the best time to start? What are the best meds to start with? Do I really need to be on meds at all?
We’re here to answer those questions and put your mind at ease. So let’s get started!
When Do People Living With HIV Need to Start Treatment?
The short answer is: As soon as possible after you’re diagnosed.
The longer answer is: The earlier, the better—because the less time there is between when you become HIV positive and when you begin taking HIV meds, the better off your health will be in the long run.
Research has shown that today’s HIV medications are extremely good at:
Stopping HIV from multiplying inside a person’s body.
Making it impossible to transmit HIV to sexual partners.
Preventing HIV from ever developing into AIDS.
Lowering the risk of other long-term health issues that HIV can cause, including cancer and heart problems.
We've got you covered on the most important info regarding HIV medications, finding mental/social support, working with a health care team, using natural/complementary therapies, and the search for an HIV cure.
Is There Such a Thing as Starting HIV Treatment Too Early?
The short answer is: No.
The longer answer is: We used to think so, back when HIV medications were less effective and more toxic than they are now. But today? There are very few reasons to wait, because HIV treatment is very good for your immune system. In fact, U.S. guidelines recommend that people start HIV treatment immediately—including the same day a person is diagnosed, if possible.
Until the past 15 years or so, experts used to recommend starting HIV treatment only when a person’s immune health dropped to a certain level. This is because many of the HIV meds developed in the 1980s and 1990s had a lot of side effects, required taking a lot of pills, and were less effective than the meds we have today. So doctors would have to balance the risks of prescribing HIV treatment alongside the risks of letting HIV go untreated.
But not anymore. We’ve learned an awful lot about HIV since the ’80s and ’90s, and everything we’ve learned tells us that there’s no such thing as starting treatment "too early"—at least, not when it comes to keeping HIV at bay. Thankfully, the HIV medications that are prescribed to people today are also very easy to take—usually one pill, taken once a day, with no specific food or timing requirements.
There’s also another huge reason why experts now recommend starting treatment ASAP: By doing so, you can eliminate your risk of passing HIV to someone else during sex. We call this U=U, which is short for undetectable equals untransmittable. Today’s HIV meds, when taken as prescribed, usually reduce the amount of virus in your body to levels so low that they can’t even be detected. And when your viral load gets that low, research has proven that HIV can’t be transmitted to sexual partners, regardless of whether you and your partner use a condom.
Now, there are plenty of mental and emotional reasons why you might not be ready to start HIV treatment, and we’ll talk more about those in a little bit. But physically, there are only a few reasons why it may be a good idea to hold off a little while on HIV treatment, including these:
You already have a very weak immune system because you’ve been living with HIV for several years. (Your provider may want to take extra precautions first—which may include prescribing additional meds—to ensure your immune system doesn’t overreact when HIV treatment kick-starts it.)
You haven’t yet been tested for hepatitis B or hepatitis C. (Living with either of these viruses can change the specific HIV medications you take.)
You’re taking other medications already, and your provider wants to double-check to ensure they prescribe you HIV treatment that won’t interact.
Regardless, the decision about whether to start HIV meds is one that you’ll want to make with your health care providers. Generally speaking, the quicker you can begin taking HIV treatment, the better.
Is It Ever Too Late to Start HIV Treatment?
The short answer is: No.
The longer answer is: The more a person waits before starting HIV meds, the greater their risk of having long-term health problems as a result of their HIV. But HIV meds are very powerful, and have helped people recover even when their immune systems are in extremely bad shape.
In a person who’s living with HIV, we usually measure immune health by looking at CD4 count—that’s the amount of a certain type of immune cell, called a CD4 T-cell, in your blood. CD4 cells fight off infections in your body, so the lower your CD4 count, the harder it is for your body to beat back those invaders.
A healthy CD4 count can be anywhere between 450 and 1,100. But in people who are living with HIV and not taking HIV meds, CD4 count will often begin to drop after a few years. If a person’s CD4 count falls below 200, they’re diagnosed with AIDS. That’s because research has shown that people with a low CD4 count are much more likely to get sick, and potentially die, from a whole host of infections and diseases that a healthy immune system would normally be able to fight off on its own.
Aside from the immune damage that HIV can cause, there’s also a lot of evidence that the virus can harm other parts of your body if left unchecked. Long-term HIV infection has been tied to the rise of heart problems, cancers, and even brain-related issues like memory and eye-hand coordination. Successful HIV treatment reduces the risks of all of these problems. (Unfortunately, it's less effective against another type of HIV-related issue, chronic inflammation, which can also lead to similar health issues down the road.)
All that having been said, it’s never too late to start taking treatment—just as it’s never too late to quit smoking, or to take any number of other steps to improve your health. There are plenty of cases where people have started HIV treatment with a super-low CD4 count—we’re talking single digits!—and have recovered, although in these people CD4 count is much less likely to rebound to "normal" levels.
Research also shows that, the higher a person’s CD4 count is at the time they start taking HIV meds, the less likely they are to develop health issues down the road. So the bottom line is: Starting HIV treatment is a very good thing, but if for whatever reason you begin treatment very late in the course of your infection, you can still improve and recover your health.
What If I’m Not Ready to Start HIV Treatment?
The short answer is: It’s OK. Find support. Talk it out.
The longer answer is: The mountain of reasons to start taking HIV meds is very high. But starting treatment is also a deeply personal choice, and it’s the beginning of a lifelong commitment. That can bring up a lot of emotions that are hard to navigate, and it can lead some people to want to delay treatment—maybe by a few days, or a few weeks, or as long as possible. Other people may not trust HIV medications or health care providers enough to be comfortable starting treatment, at least not just yet. And still others may be worried about the costs of HIV care, especially if they have limited or no health insurance.
These sorts of feelings and concerns are normal. They’re also very much worth sharing—which is one of the many reasons why it’s so important to have people you can turn to for support and wisdom. Thanks to both the internet and a nationwide community of HIV service organizations and support groups, you’re never truly alone in working through your concerns about treatment.
Doctors, nurses, pharmacists, therapists, peer counselors, other people living with HIV—there's so many people out there with valuable insight to share, and there's no such thing as talking to too many people. HIV treatment doesn't work exactly the same way for everyone, and the way your body responds to meds may differ from others. The more you understand about the possibilities, the more you'll be prepared to handle them.
So use those resources. Educate yourself. When you’re ready, effective HIV treatment will be here for you.
What Medications Should I Start HIV Treatment With?
We have dozens of different medications to treat HIV. How the heck is anyone supposed to figure out which are the right drugs for them?
Here’s the good news: Despite the huge number of HIV treatment options that exist today, we know a lot about each of them. Thanks to years of rigorous scientific research, we have a solid understanding of how well each HIV medication works, what sorts of side effects it can cause (and how often), and what interactions it might have with other medications.
We also know a great deal about which combinations of HIV meds will work best together as a treatment regimen—as well as which regimens might be the best option for specific groups of people, such as people who are pregnant or people with certain chronic health conditions (e.g., heart problems, hepatitis, or mental illness).
Still, the fact is there are a whole lot of HIV medications to choose from, and figuring which meds are best can feel overwhelming. That’s where HIV treatment guidelines and knowledgeable HIV care providers come in: Both are your partners in finding a regimen that works best for you.
What HIV Treatment Regimens Are Recommended in the U.S.?
In the U.S., our most reputable source of HIV treatment recommendations comes from the U.S. Department of Health and Human Services (HHS). The department convenes a panel of HIV treatment experts—a group of people that includes many of the top HIV care providers and community advocates in the country—who review recommendations regularly and tend to update them at least once every year.
The HHS expert panel gives its highest recommendation to these specific regimens based on research showing that they give most people the best possible chance to keep HIV at bay. They’re powerful, they’re not likely to cause serious side effects, and they’re easy to use—meaning they don’t involve taking a lot of pills, they’re easy to store, they don’t interact with most other drugs, and they don’t come with any rules around taking them with or without food (either is fine).
This list helps narrow your options down, but it still leaves plenty of questions. How do you choose between these six recommended regimens? What if you have a health condition or some other issue that might prevent one or more of those regimens from working correctly? What else do you need to know about how to make sure your first HIV treatment regimen is successful and continues to work indefinitely?
That’s where a knowledgeable HIV care provider comes in extremely handy.
How Can My HIV Care Provider Help Me Choose What to Start HIV Treatment With?
The person who prescribes your HIV meds (whether they're a physician, a physician's assistant, or a nurse practitioner) is your health care partner. The same goes for the team of professionals around them, including other nurses, pharmacists, lab technicians, case managers, and many more—as the saying goes, it takes a village, and that’s as true for HIV treatment as anything else.
It’s the job of a good HIV care provider to stay up to date on the HHS guidelines and other information they may need to help you make decisions about your health. When it comes to choosing your first HIV treatment regimen, they’ll help whittle down your potential options by:
Asking you about your preferences, hopes, and fears.
Testing your blood for any signs of HIV drug resistance or HIV medication allergies.
Checking your key HIV labs to measure the health of your immune system.
Determining whether you have any health conditions that might result in a change in which HIV meds are best for you.