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Making Decisions About Treatment

January 2011

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Table of Contents

Making Decisions About Treatment


Introduction

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.
  • 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.
Making Decisions About Treatment


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.

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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.

Making Decisions About Treatment


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.

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This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
 

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