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Day 1 … After You've Tested Positive
Dated: 5/96
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Introduction
Most testing services provide counseling to help people handle the news. The real work, however, is up to you. Given the right attitude and the right information, HIV infection can be managed like a chronic illness, one which some people seem able to survive for a long, long time. Getting informed and taking charge of your health will surely help you make the best of your situation. This document can help you with the things you need to do:
Reading this Discussion Paper is a good first step. It's a little long, but it's worth the time. It's about saving your life.
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I. HIV and the Immune System
AIDS is the most serious form of an illness caused by a virus called the Human Immunodeficiency Virus (HIV). Although it is well established that HIV is the primary cause of AIDS, it not fully understood how it does it. In general, the virus attacks or disables the body's immune system. Over time, if the immune system become seriously damaged, the body loses the ability to combat a variety of illnesses, called opportunistic infections or conditions. Each new infection further wears down the body's defenses. These infections and cancers, such as pneumocystis pneumonia (PCP) and Kaposi's sarcoma (KS), are the real killers of people with HIV.
This gradual destruction of the immune system, however, doesn't happen the same way in everyone, or at the same pace. In some people, it may not happen at all. In a small percentage of people, infection with HIV leads to destruction of the immune system very rapidly, in just a few years. But others remain well for 10 to 15 years or longer. On average, most people remain well for about 10 years before experiencing the first serious symptoms.
Despite the imperfect picture of how HIV destroys the immune system, a number of things are well established:
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When the epidemic began, we only heard about AIDS. We now realize that HIV infection generally progresses to AIDS, either slowly or quickly. Several long-term studies have researched the rate at which the disease progresses when left untreated. Most such studies conclude that about 50% of HIV infected people progress to AIDS within 10 years of infection, and that about 75% reach AIDS by the 15th year. What all such studies conclude is that HIV is a progressive infection which leads to symptomatic illness in the majority of people over time. Children born with HIV and people infected through blood transfusion seem to get sick more quickly. Studies with women and people living with hemophilia are inconclusive about the rate of progression.
HIV is a "spectrum" illness: all who are infected have the same disease, but there are many stages to it. AIDS is the name for only to the most serious stage of HIV disease. Each stage is defined by certain infections, symptoms, or the lack of them. In the least serious stage, people are seropositive: they have tested positive on the HIV antibody test but have no symptoms. If untreated, those who are infected generally progress along the spectrum of HIV.
Question: At which step do you want
to do want to do something about it?
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II. Monitoring Immune Health
Most of us were trained to wait until a disease shows up before
doing anything about it - "if it ain't broke, don't fix it."
We need to understand that the immune system starts to "break"
at the point of infection with HIV, not just when opportunistic
infections show up. Thus, monitoring the health of the immune
system is critically important. There are two common approaches
for doing this; each with advantages and disadvantages.
This approach waits for active infections and disease to occur.
In HIV, this means watching for such things as thrush, pneumocystis,
KS lesions, and so on.
It is easier to believe and take action when we are faced with
an obvious illness. People who feel sick usually want to treat
the illness as soon as possible.
HIV may progress quite far before symptoms appear. By the time
symptoms appear, options for treating the problem may be less
effective because the body is left with only limited defenses.
Indications of illness show up before illness becomes apparent.
The tests enable patient and doctor to act to prevent serious
infections before they occur.
It is difficult to act on test results, since the patient often
feels fine. People who feel healthy may be less motivated to begin
treatment. Test results are variable, changing for many reasons.
Because HIV infection can be a life-or-death matter, it is
critical to choose the second approach. Taking a preventive approach
makes it possible to:
Some people say they hesitate to act before they are sick because
today's treatments are not perfect, hoping to wait for something
better to come along. However, no one knows when perfect treatments
will become available. It is now well proven that today's treatments
can extend survival time. Although we can't predict the results
in every case, we do know what generally happens without treatment.
The purpose of preventive action is to slow the progress of HIV.
Once infected, you have one chance to manage HIV disease correctly,
so consider your options carefully and learn how to tell if a
therapy is working for you. A preventive approach is the one which
seems to offer the clearest hope.
Measuring CD4+ cells is the most common way of measuring the decline
of the immune system. But such testing produces widely varying
results. Some physicians fear CD4+ cell testing may be so variable
as to be unreliable. There are two kinds of variations which affect
the CD4+ count: real variations which reflect a person's immune
health, and insignificant variations caused by factors unrelated
to immune health. Thus, we need to know what causes these artificial,
misleading variations and how to minimize them to get a more reliable
picture of immune health. The value of CD4+ monitoring can be
improved when you:
No one CD4+ test gives a complete picture of immune health. It
is the overall trend (up or down) that tells which way things
are going. Ideally, CD4+ tests should be taken at least every
3 months, at any stage of infection, although this can be costly.
Early in the day and before eating, fewer CD4+ cells are circulating
in the blood, later in the day more are in circulation. By testing
at the same time of day, the numbers from one test to the next
can be more validly compared.
Different labs use different techniques and machines, producing
different results. Work with your doctor to be sure the test is
done at the same lab each time.
Even minor infections can affect the CD4+ count and give misleading
results. If an active infection is present, either delay the test
or repeat it later to get a more accurate picture.
Acute stress (not everyday stress) can lower CD4+ counts in some
people. This effect is often greatest in periods of loneliness,
depression, or lack of support. Drug use and lack of sleep can
lower CD4+ counts.
The best way to achieve meaningful results in T-cell monitoring
is to create a standard or routine testing climate, to keep variations
affecting the count to a minimum.
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Advantages
Disadvantages
Return to the Treatment Strategy Menu2. Lab studies and blood analysis
Advantages
Disadvantages
Reducing Variability in CD4+ Cell Testing
Look for trends, not numbers
Test at a consistent time of day
Use the same lab for testing each time
Test under normal conditions, avoiding times when you might
have an infection
Avoid acute stress, recreational drugs, and lack of sleep
In recent years, other tests have become available which directly measure the activity of HIV in the blood. Using these tests gives a more accurate picture of the rate of disease progression than is provided by CD4+ cell testing alone. There are two commonly available tests for measuring viral load. One is called "quantitative PCR" (or "Q-PCR"), the other "branched DNA" (or "B-DNA"). Though there are small differences between the two tests, they are for practical purposes one and the same.
PCR or viral load testing measures the amount of new virus being produced and released into the bloodstream. Several studies have shown that higher levels of viral load are associated with more rapid disease progression and a greater risk of death. Lower levels are associated with stability and reduced risk of progression, infection, or death.
Nearly all clinical trials of new drugs use these tests to measure the effect of drugs. A good antiviral drug can quickly reduce the level of virus, and often keep it low for many months, if not years. An antiviral drug which fails to reduce the viral load is generally considered a failure.
HIV infected people and their physicians use these tests to make decisions about when and whether to use antiviral drugs, and to determine whether a drug is working on not. When the virus levels begin to rise again while using a drug, most physicians believe it is time to switch to another drug or combination of drugs.
Because PCR testing is still relatively new, some insurers and government health plans have been reluctant to pay for it. Recent studies have resolved most doubts about the use of these tests and it is likely that reimbursement for them will improve greatly. At the very least, the test provides a rational basis for deciding when or whether to use antiviral drugs, as well as a tool for determining whether or not an antiviral drug is working.
For more information about using PCR test results, read the Project Inform document entitled "Recommendations for Using Viral Load in Disease Management."
No one test gives a total picture of immune health or disease progression, but T-cell testing and viral load taken together are very important. As we learn to manage HIV as a chronic illness, these tests provide rational guidance about what treatments to use, when and when not to use them, and how well they are working. Because some of these tests are new, they may not be as well understood as we'd like, but this is not a reason to discourage their use. It is only by using them that we will come to know them better. Without them, measuring the progression of HIV disease and the activity of the virus is simply guesswork.
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III. Intervention Against HIV
There are several types of intervention
which you can take against HIV. All are useful, but no one of
them alone is sufficient. Unfortunately, some of these approaches
are promoted with religious fervor, to the exclusion of the others.
The best overall approach may be one which is inclusive, combining
the best of each of the five types of intervention.
This means doing all of the things normally recommended for leading
a healthy life: proper nutrition and nutritional support; adequate
rest; avoidance of alcohol, smoking, drugs, and unnecessary stress;
exercise and fresh air. In short, all the things our mothers always
recommended. Taken alone, good health maintenance won't prevent
progression to AIDS or cure it, but it will give each person the
best fighting chance he or she has. A good defense against HIV
builds upon a solid foundation.
This category, sometimes called a holistic approach, can include
various supplementary approaches, such as: stress reduction; massage;
visualization, yoga and relaxation techniques; psychological and
spiritual support; natural medicines; and many others. Many of
these can be helpful in dealing with symptoms of illness, drug
side effects, and keeping one's peace of mind. Taken alone, however,
they won't solve the whole problem. Unfortunately, some practitioners
of complimentary approaches become dogmatic, urging their use
to the exclusion of all others, even the medicines recommended
by physicians. When presented in this manner, this approach may
discourage one from getting necessary medical attention. The best
practitioners see these as complimentary rather than alternative
therapies and work in conjunction with physicians.
HIV attacks and misdirects the immune system. Medicines can help
slow the spread of the virus. The best known antiviral medications
are "nucleoside analogue" drugs like AZT, ddI, ddC,
d4T, 3TC and more recently, "protease inhibitors" like
saquinavir, indinavir, and ritonavir. The most recent of all are
drugs like nevirapine and delavirdine. The challenge of using
these drugs is knowing when and how much to use, and how to combine
them. Like other interventions, antiviral drugs alone may not
solve all the problems of HIV.
A complete description of all the antiviral drugs and their use
is available in the Project Inform Antiviral Fact Sheet.
The goal of immune modulating medications is to increase
the number or function of lost cells, such as CD4+ cells, to restore
the balance of the various components of the immune system, or
to diminish autoimmune activities in which the body attacks its
own cells.
Because the immune system is sometimes suppressed, sometimes overactive,
and sometimes misdirected in HIV, it makes sense to seek out medicines
which might help correct some of these problems. This is easy
to describe but difficult to do. Many researchers feel that we
don't yet know enough about the immune system to try to regulate
it. Some therapies have been shown to influence the immune system
in studies, and similar claims have been made about some natural
products. There is great popular appeal to the notion that we
should help the body naturally regulate itself against HIV, but
there is little evidence that anyone really knows how to do this.
Moreover, the body's natural defenses almost always seem to fail
in the fight against HIV. Perhaps even more than the other types
of intervention, it would be unrealistic to expect this approach
alone to solve the problems of HIV.
The role of immune modulators in managing HIV disease is still
unclear, although increasingly efforts are being made to manipulate
the immune system to boost the body's ability to fight disease,
suppress potentially harmful immune system activation, and restore
immune function. In developing these types of therapies it is
difficult to predict the overall effect because of the highly
interdependent nature of most immune functions. Improving one
area may harm another. At this point, there is no clear or simple
strategy for addressing the defects of the immune system in HIV
infection. Some of the most complete information on immune therapies
is available in Project Inform documents which describe our Project
Immune Restoration.
Once the immune system has failed to a significant degree, it
becomes necessary to try to prevent the occurrence of the most
common opportunistic infections, or prevent their return after
a first occurrence.
OI prevention or "prophylaxis" should be considered
when CD4+ counts are in or nearing a danger zone (for example,
the risk of PCP becomes high at CD4+ count of 300 or below, and
the risk of CMV and MAI increase rapidly when the CD4+ falls below
100).
Careful and timely use of medication can prevent PCP altogether.
As the incidence of tuberculosis (TB) rises among HIV+ people,
testing and possibly preventive treatment is recommended. Similar
preventive treatment is rapidly becoming available for other infections
as well. Using this approach alone, however, would be misguided
because it does nothing to slow or stop the decline of the immune
system. Even though a person may successfully avoid PCP or MAI,
he or she is still at risk for many other HIV-related infections.
In advanced HIV disease, an infected person often must try to
treat or prevent several different opportunistic infections at
the same time. This can lead to difficult choices, since many
of the medications can interact with each other. Four Project
Inform publications can help sort this out:
The key to successful intervention is comprehensive inclusion
- doing all of the things that makes sense in your individual
situation. The biggest mistake we can make is to dogmatically
choose one approach over the others. HIV is not a political debate
or simply a matter of opinion - it is a life threatening illness.
Every decision about treatment has consequences. Each infected
person has little room for mistakes. It makes no sense to bet
your life on any single philosophy of medicine.
The last three types of interventions against HIV are usually
made with pharmaceutical drugs. Increasingly, researchers have
come to expect that HIV will be treated with combinations of these
drugs: combinations of one or more antivirals, antivirals plus
immune modulators, and both plus any needed treatments for infections.
Most studies of antivirals suggest that any one drug used alone
has a relatively short period of usefulness. This can be extended
by using such drugs in rational combinations.
The earliest possible treatment is recommended for just about
every known illness. There is little reason to think that HIV
is any different. In fact, early treatment may be even more important
because of the seriousness of the disease.
Starting points for antiviral, immune modulating, and OI medications
are the subject of disagreement. Many believe that antiviral medication
is appropriate immediately upon learning of the infection, whether
or not the CD4+ count is falling or whether symptoms are evident.
Waiting longer might only let the infection progress as it slowly
damages more and more CD4+-cells and spreads to other parts of
the body. Many researchers now believe that viral load tests (PCR)
may give the best indication of when it is appropriate to begin
treatment.
Others, however, disagree expressing two arguments. Some people
feel that since HIV infection seems fairly invisible for long
periods, during which no major obvious damage occurs, there may
be little point to treating an inactive infection. More recent
evidence, however, shows that the virus is always active and that
damage to the immune system is always taking place, perhaps at
levels too low for current tests to detect. Thus they feel antiviral
medication is appropriate at the earliest possible moment, when
it can perhaps prevent further spread of the virus. They also
note that people who are healthy and have no symptoms of HIV infection
have far less trouble with the side-effects of such drugs as AZT
and ddI.
The other argument against beginning treatment very early is the
fear that it may "use up" the medicines before they
are really needed, or that people may experience long-term toxicity
from the drugs. The only way we will ever get clear answers to
these questions is when additional clinical trials are completed.
Such trials are now underway. In the meantime, the question will
remain a matter of personal choice. For information about starting
treatments based on PCR test results, read the Project Inform
document entitled "Recommendations for Using Viral
Load in Disease Management."
There is no argument about the need to start antivirals when symptoms
are present, the CD4+ count is falling, or the viral load is high.
The starting point for using immune modulators may someday be
based on CD4+ counts or measure of CD4+ cell function. When the
count or level of function is sufficiently high, there are enough
useful CD4+ cells for effective immune response and for replenishing
the immune system. The natural chemicals which sustain the growth
of CD4+ cells, called growth factors, are made by the CD4+ cells
themselves. Thus, when the count or function falls too low, it
is very difficult to get it back up again. In short, you must
have an immune system to rebuild one.
High Range: In general, a CD4+ count above 500 suggests
no immediate danger. The 500 level is often cited as the bottom
of the "normal" range, but this can be misleading. While
an occasional drop to 500 may be normal, a steady or falling count
of 500 or even 600 is not normal and indicates suppressed immunity.
At the very least, dietary counseling, nutritional supplements,
CD4+ cell monitoring, and periodic use of other tests are recommended
in this range, whether or not treatments are used.
Low Range: CD4+ counts in this range generally indicate
decline of the immune system. However, serious symptoms are uncommon
in this range. Many researchers believe this is the optimum time
to begin treatment, especially if the PCR test also indicates
significant viral activity.
Lowest Range: CD4+ counts below 200 indicate the greatest
risk of infections and according to the 1993 definition of AIDS,
a CD4+ count of 200 or less constitutes an AIDS diagnosis. A person
with counts below 200 CD4+ may remain stable for many years, especially
with careful health management. There are exceptions, but even
people in this range who seem healthy have greater difficulty
combating infections when they occur. While some people have
warning signs in the form of symptoms before major infections
occur, this is not always the case. Some progress directly from
apparent health to serious OIs.
It has become common to put people with CD4+ counts below 200
on preventive treatment against PCP (for example, dapsone or Bactrim/Septra),
along with all people who have already suffered an initial bout
of pneumocystis. Prevention strategies for all of the most common
opportunistic infections are described in the Project Inform Guide
to Opportunistic Infections. Regardless of CD4+ cell count, yearly
monitoring for tuberculosis is becoming increasingly important.
Return to the Treatment Strategy Menu1. General Health Maintenance
Return to the Treatment Strategy Menu2. Supportive Therapies
Return to the Treatment Strategy Menu3. Antiviral Strategy
Return to the Treatment Strategy Menu4. Immune Modulating Strategy
Return to the Treatment Strategy Menu5. Opportunistic Infection Strategy
Combination Therapy
The Debate about When to Start Treatment
-----------------------------------------
| Seropositive (Yes / No?) |
-----------------------------------------
|
_______________ ___________|___ ______________
|Physical exam | | Key testing | | Other |
|F. Gyn+Pap. |-----| CD4 trend |---------| blood tests |
---------------- --------------- --------------
|
_______________|__________________
| Maximize health support |
| Consider antiviral treatment |
----------------------------------
|
____________|_______________
| Quarterly CD4 testing |
----------------------------
|
|
-----------------------------------
| | |
__________|____ ________|___________ ____|______________
|Lowest range | | Low range | | High range |
|(under 300) | | (200-500) | | (over 500) |
| add | | Antiviral (combo)| |Monitor quarterly |
| OI prevention| | Immune therapy (?)| |Immune therapy (?)|
---------------- --------------------- --------------------
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IV. Available Treatments
Project Inform provides complete information on the use of the best proven HIV treatments. These and any other treatments should only be used under the care of an experienced physician. We encourage patients and physicians to enter into collaborative relationships with shared responsibility for achieving and maintaining health. Treatment should always be accompanied by monitoring which evaluates the success or failure of treatment. Both patient and physician should be prepared to adjust strategy based on the results of the monitoring process. This model of flexible, monitored treatment used in the context of a collaborative doctor/patient relationship is the key to managing HIV as a chronic illness.
Complete information on treatments currently viewed as helpful is readily available, along with discussion papers on related topics. Just ask for the basic "treatment package." The latest information on these and other important treatment issues is available through the Project Inform hotline. Hotline hours are Monday through Saturday, 10:00 am to 4:00 PM (Pacific time).
From Project Inform, for more information contact the Project Inform Hotline, 800-822-7422.
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