Making Decisions About Therapies (Additional PLUS Reading Materials)

MAKING DECISIONS
ABOUT THERAPIES 

issues to consider
when developing your
personal treatment plan
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. is publication focuses on issues
to consider when developing your treatment decision-making plan.

PUBLISHED BY

JANUARY 2007

WHAT’S INSIDE

e basis for making a decision: 2; Choosing a doctor: 3; Learn about HIV disease and your treatment options: 4–5; Information, consider the
source: 5; Once you’ve made a treatment decision, consider ... : 6–7; Choosing the best time to start: 6; e power of the mind: 7; Some nal words
on making decisions: 8.

© PROJECT INFORM 1375 MISSION STREET SAN FRANCISCO, CA 94103 2621 415 558 8669 FAX 415 558 0684 SUPPORT PROJECTINFORM.ORG WWW.PROJECTINFORM.ORG

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

 CHOOSE AN EXPERIENCED PROVIDER.
Choose a healthcare provider or doctor
who is experienced with the treatment of
HIV disease and with the types of therapy
you are interested in pursuing.

 DEVELOP THE RIGHT RELATIONSHIP.
Learn about the di erent types of doctor/
patient relationships; determine how you
want to interact with your doctor and
develop the right relationship. Discuss
your decision-making process style of
relationship with your healthcare provider.

2
 GET INFORMED! Learn about your
health condition(s) and possible treatment
MAKING DECISIONS . JANUARY 2007 . PROJECT INFORM

options:

sources of information that give you objective information about various treatments
and strategies. Project Inform o ers this kind of information free-of-charge through
a toll-free hotline, printed documents, public meetings and website.

 TALK BEFORE YOU START. Talk to your doctor before you start therapy
(regardless of what that therapy is) and come to mutual agreements about:

TOLL FREE NATIONAL HIV/AIDS TREATMENT HOTLINE 1 800 822 7422 LOCAL AND INTERNATIONAL 415 558 9051 MONDAY FRIDAY 10 4 PACIFIC TIME

Choosing a doctor

Finding a doctor who has experience O en, people liv-
treating people living with HIV is very ing with HIV in such
important. Studies have shown that situa-tions play an
people with HIV who see doctors important role in keep-
experienced in treating people with ing their doctors up to
HIV are more likely to be long-term date by bringing them
survivors than those with inexperi- new information, reports tic healers. If you have an interest in
enced doctors. from medical conferences and complimentary or alternative thera-
According to these studies, an resources available from groups like pies, the healthcare provider should
HIV-experienced doctor is someone Project Inform. While doctors may have experience in their use in HIV-
who has ve or more people in their some-times at rst be inclined to positive people, not just experience
practice who are living with HIV, reject information from anyone other with therapies themselves.
though in general, the more experi- than doctors, they o en get over this Some herbs and supplements, for
ence and patients the physician has, prejudice when they realize that, at example, can a ect the way commonly
the better. Consider ve a minimum. least in HIV disease, community used anti-HIV drugs are absorbed
Experienced doctors will usually groups and resources o en have better in the body, so knowledge of both
have more skill in prescribing and access to information, and more time types of therapy is critical. A doctor
monitoring anti-HIV drugs wisely, for reviewing it, than they do. Many or healing practitioner who keeps
and are also more likely to wisely physicians come to welcome the up to date on literature about new 3
prescribed preventative therapies. input their patients can bring them. discov-eries in our understanding
Finally, the general principal of of HIV disease and who has expe-
cological and pregnancy concerns, choosing an HIV-experienced doctor rience treating people living with
choosing an experienced gynecologist applies to practitioners of alternative HIV is an important partner in your
and/or obstetrician is also important. systems of healing as well, like tra- healthcare.
In some cases, choosing a highly ditional Chinese medicine, herbal-
HIV-experienced doctor is not poss- ists, acupuncturists and other holis-
ible. is is especially true in rural
settings where HIV-positive people
may be more isolated than in major
cities. is does not mean that one
need receive less than optimal care.
Even in the most rural settings,
there is usually at least one healthcare
developing a relationship
provider who has worked with HIV- with your doctor
positive people. Some experience is Working with your provider to develop a relationship that you both feel
better than none. However, it may comfortable with is the next step. It’s important to trust your own reac-
mean that the patient and doctor need tions when deciding whether this doctor is the right one for you. But
to be more diligent in learning about you also may want to give the relationship some time to develop. It takes
HIV, keeping up to date on the latest more than one visit for you and your doctor to get to know each other.
in treatment information and nding For more information on developing a relationship with a doctor, call
appropriate resources. Developing an Doctor/Patient Relationship.
open and comfortable relationship
will help this ongoing process.


Get informed!
Learn about HIV disease and ...
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
option 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 o en associated with starting any kind of therapy for the rst 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? Explore, examine and challenge
Getting informed and learning about HIV and your options your beliefs about therapy.
4 and strategies may seem overwhelming at rst. It’s not easy Most people have concerns and fears about starting therapies,
for anyone. Sometimes it’s hard to read about HIV disease be they anti-HIV therapies or complementary herbal ther-
and the information may sometimes seem like it’s written in apies. Learning about that therapy can sometimes lessen

a foreign language ... at rst! your concerns and help you decide whether it’s right for you.
One of the missions of Project Inform is to provide under- Consider how it might impact your lifestyle and whether any
standable information to people living with HIV. e sta dietary restrictions may be a problem. Learn about poten-
at Project Inform spends hundreds of hours annually in tial side e ects and prepare for them, should they occur.
medical libraries, attending medical conferences and ana- In exploring your beliefs about a therapy, you might nd
lyzing studies to learn about the latest advances and what that you have come to a conclusion based on personal fears
they mean. We try our best to put that information together or rumors. Grounding yourself in knowledge, rather than
in a way that people who aren’t scientists or doctors can fears, and challenging where possibly unfounded beliefs might
understand it. be clouding decision-making is critical. Challenging your
Some people think of Project Inform as a sort of Consumer beliefs and seeking their roots is important. Personal experi-
Reports on HIV treatments. ough we do everything we can ence and knowledge about a given therapy is far better infor-
to make it the best source, Project Inform is not the only mation to inform decision-making than fears or conjecture.
place to get information about HIV treatments and strate- With that said, however, if you truly believe that a parti-
gies, however. ere are several newsletters and sources of cular approach may be more harmful to you than its poten-
HIV information, each with its own special bene ts. tial bene ts, you might be better o considering another
For a list of references, call Project Inform’s Hotline and option. You can always revisit that decision at a later time.
ask for Guide to HIV/AIDS Related Resources. e Project Don’t reject what you believe about therapy when it comes
Inform Hotline operates Monday through Friday and vol- to making your decision—it should weigh in with other
- considerations but those beliefs should be explored, exam-
tions you might have and mail you information, free of charge. ined and challenged.

TOLL FREE FREE NATIONAL HIV/AIDS TREATMENT HOTLINE 1 800 822800 822 7422 LOCAL/INTERNATIONAL 415 415 9051 9051
TOLL NATIONAL HIV/AIDS TREATMENT INFORMATION HOTLINE 1 7422 LOCAL AND INTERNATIONAL 558 558 MONDAY FRIDAY FRIDAY 10 4 10 4 PACIFIC TIME
MONDAY 9 5 SATURDAY PACIFIC TIME

your treatment options!

What has been the experience Does your healthcare provider have an opinion
of friends and people you trust? about the therapy option or strategy you’re con-
Learning about other people’s experience with a particular sidering? If so, what is it and what is it based on?
therapy or treatment-decision plan can help inform your Ask your doctor about his or her experience with or opin-
own decisions. Talk to friends, people in support groups ions about the therapies and strategies you are considering.
and others who are experiencing similar health conditions. Does the doctor have advice about whether a particular
Ask them about what kinds of treatments they’re using.
Why did they choose those treatments and what have their
about the di erent options you are hearing about and the
But great caution should also be exercised when using information reported in sources such as newsletters.
the experiences of others as a source of information. e If you nd that your doctor likes to put everyone on
fewer people you ask, the less reliable that information will the same treatment, ask why. HIV treatment information
be. Remember, what works for one person won’t always and guidelines are not meant to be a cookbook, to be used
work for you. Just because someone you know had a bad the same way with everyone. Ask how you might develop
experi-ence—or a good one—with a particular therapy a treat-ment strategy that takes your personal needs and
doesn’t mean that you will. concerns in mind. For more information on developing a
ere are many factors beyond our control that a ect how relationship with your doctor, call Project Inform’s Hotline
each of us responds to a particular treatment strategy. e and ask for Building a Doctor/Patient Relationship.
personal experiences of others should be only a piece of the You can’t make an informed decision about treatments—
pie as you gather information. e most reliable picture of a regardless of what type of treatment you’re considering—if 5
therapy’s actions will usually come from well-designed stud- you’re not informed about all your options. Get as much
ies, but even these cannot predict how you will respond. 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
com-fortable with than a hasty one.

Information: consider the source
As you’re learning about HIV and possible forums and educational materials are being apies, propose to have “cures” for HIV,
treatment approaches, be aware of false paid for with pharmaceutical money. Just cancer and many other life-threatening
and misleading medical information and because a pharmaceutical company sup- diseases. Often they will claim that they
claims about therapies. When you’re ports an educational forum doesn’t auto- have a therapy that is being suppressed,
reading about HIV and HIV treatments, matically mean that the information isn’t shrouded in controversy and government
consider the source of the information. useful; but you have a right to ask questions conspiracy. In reality the vast majority of
Pharmaceutical companies that market about the speaker’s involvement with the all such claims are outright fraud. In nearly
HIV therapies have an interest in selling company—like whether or not they received all cases, individuals prey on the vulner-
products and may not always provide a money from the company. Consider how ability and hopes of people who are fright-
balanced view of their products. Pharma- that might inﬂuence their ability to provide ened and make a pretty penny in doing
ceutical company advertising should be unbiased information. so. For more information, read Project
viewed with skepticism. There are many people who, under the Inform’s How To Identify AIDS Fraud.
Increasingly, community and physician guise of alternative/complementary ther-


Once you’ve made a
treatment decision, consider …
When to start? cell counts, can force people to begin and control over using therapy in your
Starting any ther- using up the limited time that each hands. Making decisions about com-
apy can cause anxi- drug will work, earlier than necessary. plementary therapies are o en more
ety. ere is no one It may also lead to an earlier risk of di cult and complex because there’s
proven “right” time to developing both drug side e ects and a lack of information from studies to
start anti-HIV therapy, drug resistance. ese cannot always be help guide decision-making. (Read
for example, for everyone. corrected so easily. (For more informa- Project Inform’s publication entitled
ere are di ering opinions about tion, call Project Inform’s Hotline and Herbs, Supplements and HIV.)
starting therapy early in the course of ask for Anti-HIV erapy Strategies). For example, you might decide
HIV infection vs. later. Either choice While there are instances where to start an herbal therapy right now,
using anti-HIV therapies have clearly regardless of your CD4+ cell count,
In general, current thinking in the been shown to be bene cial, when to your viral load and your overall gen-
US and Europe is leaning in favor of start therapy remains an individual eral health. Or, you might decide to
delaying treatment until there has been a decision. Most important, it doesn’t start anti-HIV therapy if your CD4+
signi cant decline on CD4+ cell counts. make sense to start therapy until you cell count has a decreasing trend to
e most recent research shows that are ready and committed to it. below 350 and/or your viral load con-
this loss can usually be recovered when Making a decision about what cri- tinues to rise above 50,000 and/or you
people start treatment. teria you will use as a basis for starting begin to experience symptoms associ-
In contrast, starting treatment very therapy (of any kind, anti-HIV therapy, ated with HIV disease. Deciding on
early, before signi cant decline of CD4+ herbal therapy, etc.) puts the decision your own criteria, with the guidance
6 of your doctor, lets you be in control
of your treatment decisions.

How to monitor whether
choosing the best time to start therapy is working for you?
Before you start any kind of therapy, it’s
important to have realistic expectations
The following factors can help you and your provider around what the therapy will do and
when choosing the best time for YOU to start therapy: to determine how you will monitor to
decide if it is working. In terms of anti-
 CD4+ TREND CD4+ cell count trends (consistently decreasing HIV therapy, typically you will look for
CD4+ cell counts, over time, indicate immune health is declining); decreases in viral levels (HIV RNA),
the most recent guidelines suggest that anti-HIV treatment should
increases in measure of immune health
be encouraged when the counts fall consistently below 350 (some
guidelines recommend waiting until 200); (CD4+ cell counts) and improvements
in your overall general health.
 VIRAL LOAD TREND Trends in viral load (consistently increasing Determining whether a complement-
HIV RNA levels, overtime, indicate that the virus is becoming more ary therapy is working, when it doesn’t
active; this may either cause more damage to the immune system or have any direct anti-HIV activity, can
might be a signal that the immune system is failing already);
be di cult. How will you decide if that
 GENERAL HEALTH Overall general health and the presence or
absence of minor symptoms; and you determine if it’s worth your money

 YOUR READINESS TO START: You should begin treatment when
(Remember, just because something is
you’re ready for the demands of treatment. Without a strong basic
commitment, you’re likely develop poor adherence to your therapy. available over-the-counter doesn’t mean
that there are no risks associated with
using it!)


Talk to your doctor and work Talking with your doctor about side the need for a change arises gives you
together to develop realistic ways of e ect before you start a therapy allows time to learn even more about your
determining if the therapy you want you to have realistic expectations and next choice and takes some of the
to start is working. If a er some come up with criteria around when you anxiety away from facing a situation
agreed upon period of time you are might consider stopping or switching where you might need to consider
not achieving your goals, agree to therapies based on side e ects concerns. switching to a new therapy regimen.
revisit the use of the therapy approach You will be able to more fully parti-
you are trying. Have these discussions cipate in monitoring for side e ects When to stop?
before you start taking the therapy. and identifying early signs of side For the same reasons that it’s important
e ects and possibly intervene before to decide when to start therapy, it’s also
How to monitor for (and manage) they become a problem. important to consider when or if it’s
potential side effects? ever appropriate for you to stop, for any
Before you start a given therapy, learn When to switch therapy and what length of time. How do you determine
about potential side e ects, how to you might switch to (if necessary)? when a given therapy or approach just
monitor for them and how to manage In developing a long-term strategy for
them. Recognize that there is almost treating HIV disease and managing you say that the cost or potential risks
no such thing as a drug that doesn’t your health, it’s a good idea to think associated with using the therapy isn’t
have side e ects. Even aspirin can ahead and be prepared. Fortunately, worth the potential bene ts of staying
have potentially fatal side e ects if many people are making strategic
used constantly. Moreover, despite the decisions about therapy that look years you start therapy to develop some
claims of advertisers, many herbs and into the future instead of days or weeks. criteria around this, that you both feel 7
supple-ments can have side e ects, comfortable with, is important.
some of them serious. even more seriously about how the In all of these areas you might come
Many people who start or switch to therapies they start today will a ect to decisions and agreements that change
a new anti-HIV therapy will experi- the options available to them later. overtime. Your expectations of a given
ence some side e ects or symptoms. Consider what you might do in therapy may change as you learn
ese may include headache, nausea, terms of treatment if your rst option more about it and as new information
diarrhea and tension. O en these doesn’t work, causes too many side becomes available. Changing your mind
types of e ects go away within four to e ects or for other reasons doesn’t t and re-thinking your strategies and
six weeks. It’s unclear how much of with your lifestyle. Again, being pre- approach is a healthy and normal part
these types of side e ects are associ- pared and thinking about this before of evolving a decision-making process.
ated with the therapies and the body
adjusting to the medication and how
much they are due to stress and anxi-
ety associated with being on therapy.
Not everyone experiences these
the power of the mind
e ects. Some therapies have poten- Studies show that more than one-third of people who receive a placebo (a sugar pill
tially life-threatening side e ects that with no medicinal value) receive some of the beneﬁts as people taking a real drug.
occur very rarely. Being aware of early This is because they believe that what they are taking is good for them.
signs of these side e ects and what to If you believe that a particular therapy is “poison,” chances are greater that
do if they arise is important. More- you’ll experience side effects and won’t do as well on that therapy. If you believe
over, if you have a very clear under- that something you’re doing is good for you, chances are greater that you’ll experi-
standing of what the potential side ence beneﬁt and have an overall better experience with the therapy (like fewer side
e ects of a given therapy are, you can effects). Do not underestimate the power of the mind in health and healing. It can
prepare to manage them should they really make a difference!
arise. (Read Project Inform’s Drug
Side E ects Chart.)


some ﬁnal words on making decisions

For most people, the idea of having a decision- Studies have shown, however, that people who
making process around healthcare is a new concept. participate in their healthcare decisions and form a
e vast majority of us have done as we we’re told partnership with an HIV-experienced doctor, tend
when it comes to healthcare decisions. If the doctor to do better.
prescribed a pill, we simply took it. (Or we didn’t, While information about HIV and the various
but we probably didn’t tell the doctor!) options for managing HIV disease can at times
Participating with your doctor—in choosing seem overwhelming, developing a decision-making
therapies and monitoring for side e ects and the process around treatment is not a mystery. In fact,
e ectiveness of a therapy—is a new experience for the general principals of decision-making around
most people. It’s not something that all doctors feel your health and treatment choices are the same
comfortable with nor is it something that many principals that you probably already apply in many
people immediately feel comfortable with either. areas of your life.

In essence,

8

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

for bene t), and

Moreover, plan ahead:

is type of decision-making process can be bene ts, but it also takes e ort on your part. e
applied to any kind of therapy approach, be it likelihood of bene ting from therapy increases and
pharmaceutical drugs, complementary therapy or the likelihood of experiencing serious side e ects
alternative systems of healing. Participating as a from therapy decreases when you’re involved in
full partner in your treatment decisions o ers many decision-making and monitoring.


Making Decisions About Therapies (Additional PLUS Reading Materials)

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