Making decisions about treatment

January 2011    View PDF    Ask a question    En español

Making decisions about treating your HIV may feel overwhelming. Developing a plan that helps you think about, plan for and make treatment decisions can help. Whether you consider prescription drugs or complementary therapies, it’s important that your plan is one you’re comfortable with and feel empowered by. This publication focuses on issues to consider when deciding your treatment plan.

The basis for making decisions

Regardless of the therapy you consider, the same basic principals for making decisions can be used:

Choose an experienced provider.

  • Choose a care provider or doctor who is experienced with treating HIV disease and with the types of therapy you are interested in pursuing.
  • Learn about the different types of doctor/patient relationships; determine how you want to interact with your doctor and your decision-making process.

Get informed! Learn about your health condition(s) and treatment options:

  • What does the research show? Consider sources of information that give you objective information about various treatments and strategies, including Project Inform’s HIV Health InfoLine (800-822-7422) and website (www.projectinform.org).
  • Explore, examine and challenge your beliefs about therapy.
  • What has been the experience of friends and people you trust?
  • What opinions does your doctor have about particular drugs, regimens or strategies?

Talk before you start. Talk to your doctor before you start therapy and come to mutual agreements about:

  • When to start.
  • What overall strategy you will pursue.
  • How to monitor whether or not a therapy is working.
  • How to monitor and manage side effects.
  • When to switch therapy and how you plan out other therapies.

Choosing a doctor

Finding a doctor who has experience treating people living with HIV is very important. Studies show that people who see doctors experienced in treating those with HIV are more likely to be long-term survivors than those with inexperienced doctors.

An HIV-experienced doctor is considered as someone who has five or more people with HIV in their practice, though in general, the more experience and patients the physician has, the better. Experienced doctors will usually have more skill in prescribing and monitoring HIV drugs wisely, and are also more likely to wisely prescribed preventive therapies. The same is true for other doctors, such as dentists or cardiologists. Because women face unique issues, choosing an experienced gynecologist or obstetrician is also important.

In some cases, choosing an experienced doctor is not possible. This is especially true in rural areas where HIV-positive people may be more isolated than in major cities or for people with limited health coverage. This does not mean that one should receive less than optimal care.

Even in the most rural settings, there’s usually at least one provider who has worked with HIV-positive people. Some experience is better than none. However, it may mean that you and your doctor need to be more diligent in keeping up to date on the latest HIV information and finding appropriate resources. Developing an open and comfortable relationship will help this ongoing process.

In this case, you can play an important role in keeping your doctors up to date by bringing them new information, reports from medical conferences and resources available from groups like Project Inform. While doctors may be inclined to reject information from anyone other than doctors, they may get over this prejudice when they realize that, at least in HIV disease, community groups and resources often have better access to information than they do.

Choosing an HIV-experienced doctor also applies to practitioners of alternative types of healing, like traditional Chinese medicine, herbalists, acupuncturists and other holistic healers. For example, some herbs and supplements can affect the way some HIV drugs are absorbed in the body.

In the end, a doctor or other provider who keeps up to date on HIV treatment becomes an important partner in your care. Developing a relationship that you both feel comfortable with is the next step. It’s important to trust your own reactions when deciding whether this doctor is the right one for you. For more information, read Project Inform’s publication, Building a Doctor/Patient Relationship.

Choosing the best time to start

The following can help you and your provider when choosing the best time for YOU to start therapy:

CD4 trend:
CD4 count trends (consistently decreasing CD4 counts, over time, indicate declining immune health); the most recent US Guidelines suggest that HIV treatment should be encouraged when the count falls below 500;

VIRAL LOAD trend:
Trends in viral load (consistently increasing HIV levels, over time, indicate that the virus is more active, which may cause more damage to the immune system or be a signal that it’s already failing);

General health overall:
general health and whether or not you have minor symptoms; and

Your readiness to start:
You should begin treatment when you’re ready for the demands of treatment. Without a strong basic commitment, you may develop poor adherence to your therapy.

Get informed! Learn about HIV disease and your treatment options

A key to participating in treatment decisions is to get informed about HIV disease, treatment options and overall strategies sooner rather than later. For example, if you wait too long before seeking medical care and then come down with an opportunistic infection, there may be little time to learn about your options since immediate treatment may be needed. People should get informed about their treatment options well before it’s time to start them.

Even if you’re healthy and don’t feel like you want to start therapy immediately, it’s still a good idea to learn about your options and begin talking with your doctor about what to do and when to do it. Making those decisions beforehand can diminish some of the fear that can come with starting any kind of therapy for the first time. For more information about monitoring HIV disease, read Project Inform’s publication, Day One.

What does the research show?

Getting informed and learning about HIV and your options may seem overwhelming at first. It’s not easy for anyone. Sometimes it’s hard to read about HIV disease because the information may seem like it’s written in a foreign language … at first!

One of Project Inform’s goals is to provide understandable information. Our staff spends hundreds of hours annually attending medical conferences and analyzing studies to learn about the latest advances and what they mean. We try our best to put that information together in a way that people who aren’t scientists or doctors can understand.

Some people think of Project Inform as a sort of “Consumer Reports” on HIV treatments. Though we do everything we can to make it the best source, Project Inform is not the only place to get information about HIV. There are many newsletters and sources of HIV information, each with its own special benefits. For more information, read Project Inform’s publication, Guide to HIV/AIDS Related Resources, or call Project Inform’s HIV Health InfoLine at 1-800-822-7422.

Explore, examine and challenge your beliefs about therapy.

Most people have concerns and fears about starting therapies, be they HIV meds or herbal therapies. Learning about that therapy can sometimes lessen your concerns and help you decide whether it’s right for you. Consider how it might impact your lifestyle and whether any diet restrictions may be a problem. Learn about potential side effects and prepare for them, should they occur.

In exploring your beliefs about a therapy, you might find that you have come to a conclusion based on personal fears or rumors. Grounding yourself in knowledge, rather than fears is critical to making good decisions. Personal experience and knowledge about a given therapy is far better information to inform your decisions than fears or conjecture. With that said, however, if you truly believe that a particular medicine may be more harmful to you than its possible benefits, you might be better off considering another option. You can always revisit that decision later.

What has been the experience of friends and people you trust?

Learning about other people’s experiences decision can help inform your own decisions. Talk to friends, or to people in support groups and others who are experiencing similar health conditions. Ask them about what kinds of treatments they take. Why did they choose them and what are their experiences?

However, exercise some caution when using the experiences of others as the sole source of information. Remember, what works for one person may not work for you. Just because someone else had a bad experience — or even a good one — with a specific regimen doesn’t mean that you will. The most reliable picture of how you’ll do on a medicine will usually come from well designed studies.

Does your healthcare provider have an opinion about the medicines you’re considering?

Ask your doctor about his or her experience with or opinions about the therapies or strategies you’re considering. Is there any advice about whether a particular therapy might help you? Has s/he followed other people using the same approach? Talk to your doctor about the options you’re hearing about and the information reported in sources such as newsletters.

If you find that your doctor likes to put everyone on the same treatment, ask why. HIV treatment guidelines are not meant to be a cookbook, to be used the same way with everyone. Ask how you might develop a strategy that takes your personal needs and concerns in mind. It’s better to make an informed decision that you feel very comfortable with than a hasty one.

Information: consider the source

As you learn about HIV treatment, be aware of false and misleading claims about therapies. Whenever you read about HIV and HIV treatments, consider the source of the information.

Drug companies that market HIV therapies have an interest in making money and may not always provide a balanced view of their products. Their advertising should be viewed with skepticism.

Increasingly, community forums and educational materials are being paid for with pharmaceutical money. Just because a company supports an educational forum doesn’t mean that the information isn’t useful; but you have a right to ask questions about the speaker’s involvement with the company — like whether or not they’re getting paid by the company. Consider how that might influence their ability to provide unbiased information.

There are many people who, under the guise of alternative/complementary therapies, say they have “cures” for HIV, cancer or other life-threatening diseases. They often claim their therapy is being suppressed, shrouded in controversy and government conspiracy. In reality, most of these claims are outright fraud and prey on the vulnerability and hopes of people who are frightened. For more information, read Project Inform’s publication, How To Identify AIDS Fraud.

Once you’ve made a treatment decision, consider …

When to start?

Starting any therapy can cause anxiety. There’s no one proven “right” time to start HIV therapy for everyone. There are differing opinions about starting therapy early in the course of HIV infection vs. later. Either choice has different long-term consequences.

In general, current thinking in the US and Europe leans towards delaying treatment until there has been a noticeable decline in CD4 counts, but before they reach below 500 (US) or 350 (Europe). The most recent research shows that this loss can usually be recovered when people start treatment.

In contrast, starting treatment very early, before any decline, may force people to use up the limited time that each drug will work, earlier than necessary. It may also lead to an earlier risk of developing both drug side effects and resistance. These cannot always be corrected so easily.

While there are times when using HIV therapy is clearly beneficial, when to start therapy remains mostly an individual decision. Most important, it doesn’t make sense to start therapy until you are ready and committed to it.

Making a decision about what criteria you will use as a basis for starting any therapy puts the decision and control in your hands. Making decisions about complementary therapies are often more difficult and complex because there’s not much information from proper studies to help guide decision-making. (Read Project Inform’s publication, Herbs, Recreational Drugs and HIV Meds.)

How to monitor whether therapy is working for you?

Before you start any kind of therapy, it’s important to have realistic expectations around what it will do and to determine how you will monitor to see if it’s working. In HIV therapy, typically you will look for lower viral loads (amount of HIV in the blood), higher CD4 counts (measure of immune health) and better general health.

Determining whether a complementary therapy is working can be difficult. How will you decide if that therapy is working? How will you determine if it’s worth your money and the risk of possible side effects? Talk to your doctor beforehand to develop realistic ways of determining if your therapy is working. If after some agreed upon period of time you’re not achieving your goals, revisit the therapy you’re on.

How to monitor for side effects?

Before you start a therapy, learn about its possible side effects, and how to monitor and manage them. Recognize that there’s almost no such thing as a drug that doesn’t have side effects. Even aspirin can have potentially fatal side effects if used constantly. Moreover, despite the claims of advertisers, many herbs and supplements can have their own side effects, some of them serious.

Many people who start or switch to a new HIV drug will experience some side effects or symptoms. These may include headache, nausea, diarrhea and tension. Often these types of effects go away within 4–6 weeks, and often sooner. It’s unclear how much of these are associated with your body adjusting to the drugs and how much they’re due to the stress and anxiety with being on therapy.

Some meds have potentially life-threatening side effects that occur very rarely. Being aware of early signs of these and less serious side effects and what to do if they arise is important.

When to switch therapy and what to switch to if necessary?

In developing a long-term strategy for treating HIV disease, it’s a good idea to think ahead and be prepared. Fortunately, many people are making strategic decisions about therapy that look years ahead instead of days or weeks. To do this, you’ll need to think even more seriously about how the therapies you start today will affect your options later.

Consider what you might do if your first option doesn’t work, causes too many side effects, or for other reasons doesn’t fit with your lifestyle. Again, thinking about this before the need for a change arises gives you time to learn even more about your next choice and takes some of the anxiety away from facing a situation where you might need to consider switching to a new therapy regimen.

When to stop?

For the same reasons that it’s important to decide when to start therapy, it’s also important to consider when or if it’s ever appropriate for you to stop, for any length of time. How do you determine when a given therapy just isn’t working for you? At what point do you say that the cost or risks associated with using the therapy isn’t worth the benefits of staying on it?

In any of these areas you may come to decisions that change over time. Your expectations may change as you learn more about it and as new information becomes available. Changing your mind and re-thinking your strategies are a healthy and normal part of evolving a decision-making process.

The power of the mind

Studies show that more than one-third of people who take a placebo (a sugar pill with no medicinal value) get some of the benefits as people taking a real drug. This is because they believe that what they’re taking is good for them. If you believe that a particular therapy is “poison,” chances are greater that you’ll experience side effects and won’t do as well. If you believe that something you’re doing is good for you, chances are greater that you’ll have an overall better experience with the therapy, like fewer side effects. The power of the mind in health and healing can really make a difference!

Some final words on making decisions

For most people, the idea of making decisions around their care is a new concept. Most of us have done as we’ve been told when it comes to our health. If the doctor prescribed a pill, we simply took it. (Or we didn’t, but we probably didn’t tell the doctor!)

Participating with your doctor — in choosing therapies and monitoring for side effects and the effectiveness of a therapy — is a new experience for most people. It’s not something that all doctors feel comfortable with nor is it something that many people immediately feel comfortable with either. However, studies show that people who participate in their health decisions and see an HIV-experienced doctor tend to do better.

While information about HIV and the various options for managing HIV disease can at times seem overwhelming, developing a decision-making process around treatment is not a mystery. In fact, the general principals of decision-making around your health and treatment choices are the same ones that you probably already apply in many areas of your life. But it also takes effort on your part. Benefiting from therapy increases and experiencing serious side effects decreases when you’re involved in decision-making and monitoring.

In essence,

  • consider how you feel (ultimately how do I feel about all this?);
  • consult people that you trust (what do my friends think about it?); and
  • consider the facts (what does the research show?).

Once you’ve decided what you want to do, next decide:

  • when you’re going to do it (when to start),
  • how you’re going to know if it’s the right thing (monitoring for benefit), and
  • how you’re going to know if it’s hurting you (monitoring for side effects).

Moreover, plan ahead:

  • think about what you might do if it doesn’t work out (when to switch), and
  • under what circumstances you might just decide not to do it anymore (when to stop).