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Table of Contents
- Strong Drugs to Fight HIV
- The Importance of Adherence
- Starting and Choosing HIV Drugs
- Barriers to Adherence for Women
- Overcoming Barriers
- Adherence Tips
- Finding Support
Advances in HIV treatment since the 1987 approval of the first HIV medication have led to the development of many drugs to fight HIV, including once-a-day combination pills containing two or more HIV drugs, and long-acting injectables. This is a remarkable accomplishment. Most importantly, using these drugs in effective combinations is helping many people control their HIV and live long, healthy lives. Unlike in the past, HIV is no longer a death sentence; instead, it now can be much more like living with a chronic, but manageable, condition that has little effect on life expectancy.
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.
In order for HIV drugs to do their job properly, you need to do yours! It is very important that you take your drugs exactly as they are prescribed. That means taking the correct amount (dose) at the right time(s), and as directed (e.g., with any food or medication restrictions), or getting your next injection on time. This is called adherence.
Despite the improvements in HIV drug treatment (such as fewer side effects, fewer restrictions, and easier dosing), taking HIV drugs is still a lifelong commitment. While this can make adherence challenging for many people living with HIV, the benefits are well worth the effort.
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When you take a drug, it is processed by your body and enters your blood stream. A certain amount of the HIV drug needs to stay in your blood to fight HIV. If the drug level falls too low, there is not enough drug to fight HIV.
When you take your pills or get your injections on schedule, you keep the right amount of the drug in your body. If you do not take your HIV drugs on schedule or miss an injection, drug levels in your blood will drop and HIV will be able to make copies of itself (multiply or reproduce). When HIV multiplies, your viral load increases and your CD4 cell count goes down.
When HIV makes copies of itself, it sometimes makes changes, called mutations. These mutations can help the virus survive, even when you are taking your HIV treatment. This is called resistance. When HIV becomes resistant to a drug you are taking, that drug will stop working. At that point, you will probably have to switch to a different HIV drug.
When you take your pills or get your injections on schedule, you keep the right amount of the drug in your body.
Resistance to one drug can sometimes cause resistance to other drugs you have not taken. This is called cross-resistance. Resistance often develops to other drugs in the same class (type of drug). If you develop resistance to one drug in a class of drugs, you probably will have developed resistance to other drugs in the same class. As a result, resistance can affect your treatment choices in the future because fewer drugs will work well against your virus.
The best way to prevent resistance is to stick closely to your medication schedule. Some studies suggest that taking your HIV drugs exactly as prescribed about 95 percent of the time is necessary to get the most benefit from HIV treatment. That means missing very few doses.
Experts now agree that starting treatment as soon as you are diagnosed, regardless of your CD4 count or current state of health, gives you the best chance of staying healthiest the longest. Nevertheless, starting treatment is a big decision.
Before you get started, it is important to be prepared and commit to taking your HIV drugs the right way, every day, or to get your injections on time, every time, for your own health. If you do not feel ready, talk it over with someone who knows about HIV. Your health care provider or an AIDS service organization (ASO) can answer your questions and address your concerns. Click here to find an ASO in the US.
Your provider will help you choose the HIV drugs to start with. That combination of drugs is called your initial regimen. This choice considers several important factors: which drugs will be most effective in fighting your HIV, side effects, dosing schedule, and possible drug interactions.
Women living with HIV can face numerous challenges to taking their medicine as prescribed. Women often put others’ needs before their own. Other barriers to adherence include:
- A busy lifestyle
- Not having disclosed their HIV status to work colleagues, friends, lovers, or family
- Depression, a leading cause of non-adherence, is more common in women living with HIV than in men living with HIV
- Other life stressors, such as childcare or parenting issues
- Current or past problems with side effects
- Active substance use or problems with alcohol use
- In the US, women who do not have health insurance are less likely to be able to access adequate care and HIV drugs (although programs such as the Ryan White HIV/AIDS Program are available to assist with medications and services for people without insurance)
- Many women living with HIV do not have safe or stable housing; this presents additional barriers to getting treatment
- Past or current experience of violence or trauma. Women who have been abused are much more likely not to take their HIV drugs as prescribed. Globally, violence against women is very common. For more information, see our fact sheets on Violence Against Women and HIV and Trauma and HIV.
- Difficulty swallowing large pills or pills in general
It is important to tell your health care provider about the number of times you have missed doses or did not take your HIV drugs correctly.
Despite the many demands in women’s lives, numerous studies have found that women are just as likely to adhere to their HIV regimens as are men, especially when women have longstanding and trusting relationships with their health care providers.
It is important to tell your health care provider about the number of times you have missed doses or did not take your HIV drugs correctly. He or she may suggest a change in your dosing schedule or a drug regimen that makes adherence easier. Newer HIV drugs require fewer pills per day and have fewer food restrictions, and several are smaller than older medications. There are also new ways to combine older drugs that make them easier to take. Getting an injection every two months instead of taking daily pills may be another option.
- Understand that the drugs will help you fight the virus and stay well. If you do not think they will, you will not bother taking your pills correctly. If you have any doubts, talk to your health care provider or staff at an AIDS service organization (ASO).
- Some women find that connecting their pill-taking with a higher purpose or good intention helps. This intention could be spiritual in nature, or something like staying healthy for the sake of family, friends, or others served by your unique gifts.
- Use a daily activity, one that you do every day without fail (like waking up in the morning, walking your dog, brushing your teeth, or going to bed at night), to remind you to take your pills. When it is time to do that activity, you will know that it is also time to take your pills. If you have children who take medicines or vitamins, you may consider taking your HIV drugs when they take their medicine so the whole family stays healthy together.
- If you do not want others to see you taking your pills, quietly slip away to a private area or the bathroom. If that will not work, say the drugs are for another health problem or that they are vitamins.
- Substance or alcohol use and depression (intense, long-lasting sadness) can make you not take your drugs. If this has happened to you, tell your health care provider or case manager so they can get you help. There are good treatments available.
- Take advantage of tools available from your clinic or pharmacy, such as pillboxes, calendars, diaries, and beepers, to help you remember to take your pills on time
- Try one of the many different smart phone apps that send medication reminders.
- If you remove the labels on your HIV drugs' pill bottles (e.g., to hide what you are taking from others), develop a system to make sure that you know which HIV drugs you need to take when. You may consider marking the pill bottles with different names and recording those new names on a slip of paper that you keep safe for reference. You can also add quick reminders to the bottles (that were originally on the labels), such as "take one every a.m."
- Plan ahead for refills or trips so you do not run out of any drugs
Adherence is hard work and takes a lot of commitment. It helps to have other people on your side. One way to do this is to join or put together a support network. Your health care provider is one of the most important people in your network. Talk openly with him or her about how to fit HIV treatment into your lifestyle.
There are many other sources of information and support available to women who are taking or thinking about taking HIV drugs. If you can, include family, friends, case managers, treatment educators, and counselors in your network. You can also get involved with your local ASO or a support group. These are places where you will be able to ask questions, get tips, and share experiences with others who understand what it is like to live with HIV. When you are feeling discouraged, turn to your network for support and encouragement.
Also, try to remember the big picture. It can be hard to take pills every day, but it may be easier when you know why you are doing it. You want to take your HIV drugs as prescribed to give them the best chance of working to keep you healthy. This will allow you to focus on the things you care about – including the important people in your life, such as your children, partners, family, and friends.