Making Decisions About Therapies
Table of Contents
Making decisions about treating HIV can sometimes feel overwhelming. Developing a personal plan to help you think about, plan for and make treatment decisions can help. Whether considering pharmaceutical drugs or complementary therapies, it's important that your plan is one you're comfortable with and feel empowered by. This discussion paper focuses on issues to consider when developing your treatment decision-making plan.
Finding a doctor who has experience treating people living with HIV is very important. Studies have shown that people with HIV who see doctors experienced in treating people with HIV are more likely to be long-term survivors than those with inexperienced doctors.
According to these studies, an HIV-experienced doctor is someone who has five or more people in their practice who are living with HIV, though in general, the more experience and patients the physician has, the better. Consider five a minimum. Experienced doctors will usually have more skill in prescribing and monitoring anti-HIV drugs wisely, and are also more likely to wisely prescribe preventative therapies. Because women face unique gynecological and pregnancy concerns, choosing an experienced gynecologist and/or obstetrician is also important.
In some cases, choosing a highly HIV-experienced doctor is not possible. This is especially true in rural settings where HIV-positive people may be more isolated than in major cities. This does not mean that one need receive less than optimal care.
Even in the most rural settings, there is usually at least one healthcare provider who has worked with HIV-positive people. Some experience is better than none. However, it may mean that the patient and doctor need to be more diligent in learning about HIV, keeping up to date on the latest in treatment information and finding appropriate resources. Developing an open and comfortable relationship will help this ongoing process.
Often, people living with HIV in such situations play an important role in keeping their doctors up to date by bringing them new information, reports from medical conferences and resources available from groups like Project Inform. While physicians may sometimes at first be inclined to reject information from anyone other than doctors, they often get over this prejudice when they realize that, at least in HIV disease, community groups and resources often have better access to information, and more time for reviewing it, than they do. Many physicians come to welcome the input their patients can bring them.
Finally, the general principle of choosing an HIV-experienced doctor applies to practitioners of alternative systems of healing as well, like traditional Chinese medicine, herbalists, acupuncturists and other holistic healers. If you have an interest in complimentary or alternative therapies, the healthcare provider should have experience in their use in HIV-positive people, not just experience with therapies themselves.
Some herbs and supplements, for example, can affect the way commonly used anti-HIV drugs are absorbed in the body, so knowledge of both types of therapy is critical. A doctor or healing practitioner who keeps up to date on literature about new discoveries in our understanding of HIV disease and who has experience treating people living with HIV is an important partner in your healthcare.
Working with your provider to develop 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. But you also may want to give the relationship some time to develop. It takes more than one visit for you and your doctor to get to know each other. For more information on developing a relationship with a doctor, read Doctor-Patient Relationship.
A key to participating in treatment decision making is to get informed about HIV disease, treatment options and overall strategies sooner rather than later. If a person waits too long before seeking medical care and has already come down with an opportunistic infection, there may be little time to learn about options since immediate treatment may be needed.
Whenever possible, people should get informed about treatment strategies and options well before it's time to start treatment. For more information about monitoring HIV disease, call Project Inform's Hotline and ask for Day One.
If you're healthy and not feeling like you need or want to start therapy immediately, it's still a good idea to learn about your treatment options and strategies and begin talking with your doctor about what to do and when to do it. Making those decisions before the problem is critical can diminish some of the fear that is often associated with starting any kind of therapy for the first time. Starting these discussions with your doctor is perhaps the best form of "early intervention" and will greatly increase the chances that you will avoid starting therapy either too early or too late.
Getting informed and learning about HIV and your options and strategies may seem overwhelming at first. It's not easy for anyone. Sometimes it's hard to read about HIV disease and the information may sometimes seem like it's written in a foreign language ... at first!
One of the missions of Project Inform is to provide understandable information to people living with HIV. The staff at Project Inform spends hundreds of hours annually in medical libraries, 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 it.
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 treatments and strategies, however. There are several newsletters and sources of HIV information, each with its own special benefits.
For a list of references, consult Resource Guide to HIV/AIDS Related Resources. The Project Inform Hotline operates Monday through Saturday and volunteers are available to talk to you about treatment questions you might have and mail you information, free of charge.
Most people have concerns and fears about starting therapies, be they anti-HIV therapies or complementary 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 dietary 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, and challenging where possibly unfounded beliefs might be clouding decision-making is critical. Challenging your beliefs and seeking their roots is important. Personal experience and knowledge about a given therapy is far better information to inform decision-making than fears or conjecture.
With that said, however, if you truly believe that a particular approach may be more harmful to you than its potential benefits, you might be better off considering another option. You can always revisit that decision at a later time. Don't reject what you believe about therapy when it comes to making your decision -- it should weigh in with other considerations but those beliefs should be explored, examined and challenged.
Learning about other people's experience with a particular therapy or treatment-decision plan can help inform your own decisions. Talk to friends, people in support groups and others who are experiencing similar health conditions. Ask them about what kinds of treatments they're using. Why did they choose those treatments and what have their experiences been?
But great caution should also be exercised when using the experiences of others as a source of information. The fewer people you ask, the less reliable that information will be. Remember, what works for one person won't always work for you. Just because someone you know had a bad experience -- or a good one -- with a particular therapy doesn't mean that you will.
There are many factors beyond our control that affect how each of us responds to a particular treatment strategy. The personal experiences of others should be only a piece of the pie as you gather information. The most reliable picture of a therapy's actions will usually come from well-designed studies, but even these cannot predict how you will respond.
Does Your Healthcare Provider Have an Opinion About the Therapy Option or Strategy You're Considering? If so, What Is It and What Is It Based On?
Ask your doctor about his or her experience with or opinions about the therapies and strategies you are considering. Does the doctor have advice about whether a particular therapy might be helpful for you? Has the doctor followed other people using the same approach? Talk to your doctor about the different options you are 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 information and guidelines are not meant to be a cookbook, to be used the same way with everyone. Ask how you might develop a treatment strategy that takes your personal needs and concerns in mind. For more information on developing a relationship with your doctor, read Building a Doctor/Patient Relationship.
You can't make an informed decision about treatments -- regardless of what type of treatment you're considering -- if you're not informed about all your options. Get as much information as possible, from a variety of credible sources that you trust. Learn about HIV and treatment options. It's better to make an informed decision that you feel very comfortable with than a hasty one.
Starting any therapy can cause anxiety. There is no one proven "right" time to start anti-HIV therapy, for example, for everyone. There are differing opinions about starting therapy early in the course of HIV infection vs. later. Either choice has possible long-term consequences.
In general, current thinking in the U.S. and Europe is leaning in favor of delaying treatment until there has been a significant decline on CD4+ cell counts. The most recent research shows that this loss can usually be recovered when people start treatment.
In contrast, starting treatment very early, before significant decline of CD4+ cell counts, can force people to begin using 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 drug resistance. These cannot always be corrected so easily. (For more information, read Anti-HIV Therapy Strategies.)
While there are instances where using anti-HIV therapies have clearly been shown to be beneficial, when to start therapy remains 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 therapy (of any kind, anti-HIV therapy, herbal therapy, etc.) puts the decision and control over using therapy in your hands. Making decisions about complementary therapies are often more difficult and complex because there's a lack of information from studies to help guide decision-making. (Read Herbs, Supplements and HIV.)
For example, you might decide to start an herbal therapy right now, regardless of your CD4+ cell count, your viral load and your overall general health. Or, you might decide to start anti-HIV therapy if your CD4+ cell count has a decreasing trend to below 350 and/or your viral load continues to rise above 50,000 and/or you begin to experience symptoms associated with HIV disease. Deciding on your own criteria, with the guidance of your doctor, lets you be in control of your treatment decisions.
you start any kind of therapy, it's important to have realistic expectations around what the therapy will do and to determine how you will monitor to decide if it is working. In terms of anti-HIV therapy, typically you will look for decreases in viral levels (HIV RNA), increases in measure of immune health (CD4+ cell counts) and improvements in your overall general health.
Determining whether a complementary therapy is working, when it doesn't have any direct anti-HIV activity, can be difficult. How will you decide if that therapy is working for you? How will you determine if it's worth your money and the risk of potential side effects? (Remember, just because something is available over-the-counter doesn't mean that there are no risks associated with using it!)
Talk to your doctor and work together to develop realistic ways of determining if the therapy you want to start is working. If after some agreed upon period of time you are not achieving your goals, agree to revisit the use of the therapy approach you are trying. Have these discussions before you start taking the therapy.
you start a given therapy, learn about potential side effects, how to monitor for them and how to manage them. Recognize that there is 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 side effects, some of them serious.
Many people who start or switch to a new anti-HIV therapy will experience some side effects or symptoms. These may include headache, nausea, diarrhea and tension. Often these types of effects go away within four to six weeks. It's unclear how much of these types of side effects are associated with the therapies and the body adjusting to the medication and how much they are due to stress and anxiety associated with being on therapy.
Not everyone experiences these effects. Some therapies have potentially life-threatening side effects that occur very rarely. Being aware of early signs of these side effects and what to do if they arise is important. Moreover, if you have a very clear understanding of what the potential side effects of a given therapy are, you can prepare to manage them should they arise. (Read Drug Side Effects Chart.)
Talking with your doctor about side effects before you start a therapy allows you to have realistic expectations and come up with criteria around when you might consider stopping or switching therapies based on side effects concerns. You will be able to more fully participate in monitoring for side effects and identifying early signs of side effects and possibly intervene before they become a problem.
In developing a long-term strategy for treating HIV disease and managing your health, it's a good idea to think ahead and be prepared. Fortunately, many people are making strategic decisions about therapy that look years into the future instead of days or weeks. To do this, it requires a person to think even more seriously about how the therapies they start today will affect the options available to them later.
Consider what you might do in terms of treatment if your first option doesn't work, causes too many side effects or for other reasons doesn't fit with your lifestyle. Again, being prepared and 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.
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 or approach just isn't working for you? At what point do you say that the cost or potential risks associated with using the therapy isn't worth the potential benefits of staying on it? Working with your doctor before you start therapy to develop some criteria around this, that you both feel comfortable with, is important.
In all of these areas you might come to decisions and agreements that change over time. Your expectations of a given therapy may change as you learn more about it and as new information becomes available. Changing your mind and re-thinking your strategies and approach is a healthy and normal part of evolving a decision-making process.
For most people, the idea of having a decision-making process around healthcare is a new concept. The vast majority of us have done as we were told when it comes to healthcare decisions. 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. Studies have shown, however, that people who participate in their healthcare decisions and form a partnership with 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 principles of decision-making around your health and treatment choices are the same principles that you probably already apply in many areas of your life. In essence,
Once you've decided what you want to do, next decide:
This type of decision-making process can be applied to any kind of therapy approach, be it pharmaceutical drugs, complementary therapy or alternative systems of healing. Participating as a full partner in your treatment decisions offers many benefits, but it also takes effort on your part. The likelihood of benefiting from therapy increases and the likelihood of experiencing serious side effects from therapy decreases when you're involved in decision-making and monitoring.
This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.