Making decisions about therapies
January 2007 View PDF En
español
Get informed! Learn about HIV disease
and your treatment options!
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, read Project Inform's
publication, 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.
What does the research show?
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. Project Inform's National
HIV/AIDS Treatment Hotline operates Monday–Friday and
volunteers are available to talk to you about treatment questions
you might have and mail you information, free of charge.
Explore, examine and challenge your beliefs
about therapy.
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.
What has been the experience of friends
and people you trust?
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 have 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
Project Inform's publication,
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.
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