Considerations Before Starting HIV Treatment
October 2, 2018
Table of Contents
Are you living with HIV (HIV+)? If so, treatment with HIV drugs can improve your quality of life and help you stay healthier longer. But starting treatment is a big decision. To get the most benefit from HIV drugs, they must be used just the way they are prescribed. Taking your treatment correctly is as important as which drugs you and your health care provider choose. So, before you get started, it is important to be prepared and commit to taking your HIV drugs the right way, every day, for your own health. This takes a combination of the right health care provider, enough knowledge about HIV, and a positive attitude.
The results of a recent study (the START trial) have definitively shown that people living with HIV who start treatment earlier, while their CD4 counts are still high, have a much lower risk of illness and death. This includes people living with HIV who feel well. The study showed that taking HIV drugs earlier reduced the likelihood of developing both AIDS-related and non-AIDS related illnesses.
Benefits of Starting Early:
Risks of Starting Late:
Over the past several years, experts have debated the potential benefits and risks of starting HIV treatment while people are relatively healthy (have high CD4 counts and no signs of ill health). The START trial clearly showed that the benefits of starting treatment early outweigh any potential risks.. Consequently, scientific experts and policy makers came together in July 2015 and issued a consensus statement declaring that all people living with HIV should have access to HIV treatment as soon as they are diagnosed. This statement was supported by agencies such as the International AIDS Society, the US President's Emergency Plan for AIDS Relief (PEPFAR), and UNAIDS, among others.
Guidelines for HIV treatment are issued by a variety of global and national agencies. They provide a lot of useful information to help health care providers and people living with HIV decide when to start, what to start, and when to change HIV medications. They also help providers and people living with HIV choose among the many available HIV drugs. Guidelines are written and reviewed regularly by groups of HIV experts, including researchers, healthcare providers, and community activists.
The US Department of Health and Human Services (DHHS) HIV treatment guidelines recommend that all people living with HIV take HIV drugs, no matter their CD4 count.
The World Health Organization (WHO) released new HIV treatment guidelines in September 2015. By October 2015, all internationally-written guidelines agreed for the first time since 2006. The DHHS, WHO, EACS (European AIDS Clinical Society), BHIVA (British HIV Association), and the IAS-USA (International Antiviral Society-USA) all recommend that HIV treatment be offered to all people living with HIV, regardless of their CD4 count.
In an ideal world, you and your health care provider are a team working together to make the best treatment decisions for you. You may want to ask yourself a few questions about your relationship with your health care provider: Can I be totally honest with my provider? Are they available when I have questions? Do they take my concerns seriously? If so, great!
If not, you may want to make some changes. Although it can be difficult, you may want to ask your provider directly if they will be available for questions. If you do not feel fully respected or taken seriously, you may want to talk to your provider. You may want to tell them that you are concerned that your relationship is not as strong as it could be because of how you feel. It may help to write down the questions you would like to ask your health care provider before you go to visits. Finally, it is always important to answer your provider's questions with the truth, not with what you think they want to hear. If these steps still do not work, it may be time to look for another provider.
It is also wise to have a health care provider who is an HIV specialist. Health care providers who spend most of their time on HIV care are best able to manage this condition. Helpful suggestions for HIV specialists near you can come from friends and/or ASOs (AIDS Service Organizations), or by checking with the American Academy of HIV Medicine (AAHIVM). To find an ASO in your area, click here or look at AAHIVM's Referral Link. For services worldwide, please use aidsmap's e-atlas.
HIV is a virus that destroys CD4 cells. CD4 cells are part of the body's immune system. The immune system protects the body from germs such as bacteria, fungi, and viruses. When the immune system loses too many CD4 cells, it becomes weak and can no longer fight off germs, leading to opportunistic infections (OIs) that can cause serious illness or death.
Scientists have developed drugs that stop HIV from making copies of itself (multiplying) in your body. These drugs are grouped into classes. Each class of drugs works to stop HIV at a certain point in its life cycle. There are six classes of drugs:
HIV drugs are always used in combination to attack the virus at different points in its life cycle. This usually means using drugs from at least two different classes. Combining HIV drugs is the best way to reduce the amount of HIV in your blood (viral load). There are also fixed-dose combinations that include more than one HIV drug in the same pill. Our fact sheet HIV Drugs and the HIV Lifecycle has more information about HIV medications.
Baseline Blood Tests
Before you start HIV treatment, your health care provider should have you take a number of blood tests. These are your original, or baseline, tests. Future test results will be compared to your original results to see how you are doing and how well your treatment is working.
Whenever you start treatment, you need to take your drugs on schedule and exactly as prescribed. This is called adherence. To get the most benefit from HIV therapy, good adherence is required. This is because HIV drugs need to stay at a certain level in your body to fight the virus. If the drug level falls, HIV may have a chance to fight back. Skipping doses, not taking the drugs on time, and not following food requirements can all cause your drugs to be less effective or to stop working altogether.
AfAfter starting HIV drugs, you should see your viral load decrease and your CD4 cells increase. Over time, however, some people see their viral load increase, even though they are still taking HIV drugs.
When a drug can no longer fight HIV effectively, the virus has become "resistant" to that drug. If you develop resistance, you will likely have to change some of the drugs in your regimen (the combination of different medications that you are taking). If your viral load goes up while you are still taking your HIV drugs, your health care provider should offer you a resistance test. This test will help your provider find out which drugs are not working and help choose ones that will. For some people with resistance to many HIV drugs, it may be difficult to find a new combination.
The best way to fight resistance is to take your HIV drugs exactly as directed.
When you think about starting treatment, it is important to have a good attitude. It can be helpful to believe that:
It may also help to think about the reason why you are starting treatment -- to keep yourself in good health, whether for your own sake or for the good of your family. Think about it this way: when you have a urinary tract infection, your provider does not wait until it has spread to your kidney or blood stream before treating you. The same is true for acquiring HIV. You need not wait until your immune system is damaged before taking HIV drugs. Newer HIV drugs are much easier on your body and have fewer side effects than the older drugs.
When you think about starting treatment, it is also important not to go it alone. Put together a support system that may include your health care provider, social workers, case managers, family, or friends. You may also consider joining a support group of other people living with HIV. Many people living with HIV find support through online communities. Our global community of women sharing their stories of living with HIV is called A Girl Like Me.
Whatever you decide to do, it is important that you keep going to your health care provider for regular checkups and remain focused on staying healthy.
[Note from TheBody.com: This article was created by The Well Project, who last updated it on Sept. 6, 2018. We have cross-posted it with their permission.]
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This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with TheBody.com to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from TheBody.com or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
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