Now That You’ve Started Treatment (Additional PLUS Reading Materials)

BOOKLET 3 OF 3

HIV HEALTH & WELLNESS

Now that you’ve
started treatment

JANUARY 2013

your life matters

Table of contents

Using this booklet ... 2

SECTION ONE: What everyone should know
Be flexible with your decisions 4
Make the most of your pills and blood work 5–7
Keep up with your health care 8–9
When to switch HIV meds 10–11
Taking a break from your HIV meds 12–13
Changes in body shape 14–15
Herbs, prescriptions and HIV meds 16
When will you see a cure for HIV? 17

SECTION TWO: Special situations
If your sex partner(s) is HIV-negative 19–21
If you are under 25 22
If you are over 50 23–25
If you want to have a family 26–28
If you are an HIV-positive woman 29–31
If you drink alcohol regularly or
use recreational drugs 32–33
If you smoke tobacco 34
If you have other conditions 35–37

HIV Health & Wellness: Now that you’ve started treatment 1

Using this booklet ...

Some time ago you found
out you have HIV. You went
to a doctor’s office and got
blood work done. Then you
started meds. You’ve been
taking them as directed ever since.
So now what?
Well, simply put, your life matters.
You may think that HIV is not the
most important or urgent thing in
your life. Many people do. But to live
well with HIV you’ll need to find a balance between taking
care of your own health and taking care of the other things
and people in your life.
Caring for HIV means more than just taking pills,
although that’s a big chunk of it. It’s about eating well
throughout your life, dealing with stress, staying involved
with friends and family, exercising, getting sound sleep, and
keeping your eye on changes in your health.
Don’t think you’ll encounter everything in this booklet.
We simply want you to be aware that these things are pos-
sible—but not necessarily probable—for you.
The first section contains information on things that
everyone should know. The second describes areas of HIV
that may or may not apply to you, such as family planning.
In a lot ways, this booklet is about prevention. By know-
ing ahead of time what things could happen, you have
some control over how your health develops over the next
decades of your life.

2 HIV Health & Wellness: Now that you’ve started treatment

SECTION ONE:
What everyone
should know

Be flexible with your decisions

Because your life and health
change over time, the decisions
that you make about your regi-
men and general health may
need to as well. What worked
for you when you started treat-
ment may not be the best fit
a few years later. Treatment
information changes over time;
you may find you have another
condition like hepatitis C; and your feelings and opinions
may change.
Give yourself permission to change your mind. This can
help you respond to these new developments. For example,
you may want to eat less sugar and lose weight in order
to reverse a pre-diabetic condition. Or perhaps you start
thinking you want to have a baby. Being flexible rather than
rigid with your decisions can help you work better with
your doctor and can help ease your worries.

_______ MAIN POINTS TO REMEMBER _______

your life, such as pregnancy, a new insurance plan or a new
doctor.
-
mation, so your decisions may change as well.


Make the most of your pills
and blood work

Yes, we seem to talk a lot
about pills and blood work in
these booklets. But these are
the things that you’ll deal with
most. They’re also the things
that can help you stay healthy
over many decades. At one
time or another, most people
who are on treatment will face
the issues listed below.

“BLIPS” ON VIRAL LOAD
It’s common for people to have a low, detectable result on
their viral load tests every now and then (called a blip).
Several things can cause it: you’ve had another infection
like the flu, the test gets mishandled in the lab, or you get a
vaccination. Blips are usually nothing to worry about. Fol-
low up with another test to see if it’s back to undetectable.

CLUES TO GENERAL HEALTH
People often focus on their HIV blood work. But it’s just
as important to review your other test results, such as liver
and kidney proteins, blood sugar, cholesterol and Pap
smears. If these results change over time, you could develop
certain conditions like diabetes or cancer. Learning what all
your test results mean—not just the ones about HIV—can
help you feel the best you can.
... continued next page


and blood work

MAKE SURE YOUR MEDS GET ABSORBED
HIV meds can do their job only if your body has a chance
to absorb them. Getting them into the bloodstream where
they control HIV has a lot to do with what you eat and
drink. Talk to your provider about ways to deal with these:

food to work well; others are taken on an empty stomach.

stomach acid so it doesn’t break down meds as well.

from absorbing meds. Taking them at different times
doesn’t stop the interaction.

Vomiting can too. Talk to your doctor about these issues.

MISSING A DOSE
Most people skip a dose of their meds from time to time.
This shouldn’t be a problem if it only happens once every
month or two. If you’re missing 2 or 3 doses each month,
losing track of when you take them, or going whole week-
ends without them, then this is when resistance can start.
Ideally, you should take 95% of your meds. If you take
meds once a day this means missing no more than a couple
of doses each month and hopefully not all in a row.
If you miss your dose and remember it within a few hours,
then take that dose and stay on your normal schedule. If
you don’t remember you missed one until much closer to
your next scheduled dose, then wait and take the next dose.
Do not double-dose. Ask your doctor for advice on this.


and blood work

WHEN YOU’RE SICK
It’s very important to keep taking
your HIV meds even when you don’t
feel well … have a cold or flu or feel
depressed. Even during most medi-
cal procedures or surgeries, you
will probably still take your HIV
meds. Be sure to tell doctors and
nurses what you take.

PILL AND HIV STATUS FATIGUE
You’ve probably heard or read about adherence. But what
often isn’t talked about is the “fatigue” that some people
can feel from having to take meds ... keeping them handy,
taking them every day, paying for them, etc. People also
just get tired of being HIV-positive. For a lot of people, this
fatigue comes from living with a long-term condition.
The first part of dealing with fatigue is noticing that it’s
there. For some people it may be easy to re-commit to
taking pills. For others, ask for help. Talking to other HIV-
positive people about how they’ve dealt with these issues
can show you new ways to deal with yours.
In the long run, it’s much safer to work through pill
fatigue than to consider taking a break from your meds
(pages 12-13). Pill fatigue could also be a sign of depres-
sion, so if your feelings persist then let your health care
provider know.


Keep up with your health care

Many Americans take their
health care for granted. They
don’t think ahead about how they
get their meds or what changes
can happen to their insurance.
Whether you like it or not,
health care reform is here and it
may change how and where you
get your medical care. Overall,
the care that HIV-positive people
get after 2014 should be more secure and complete.

STABLE HEALTH CARE
As health care reform moves forward, you may see some
changes that could affect how you see your doctor, get lab
work, fill prescriptions, or pay for co-pays and premiums.
People who now use either private insurance, Medicaid
or Medicare for their health care probably won’t see big
changes. Those who use Ryan White services will likely see
more, and these changes will vary from state to state.
The most important thing you can do right now is to
understand how your care is covered. Get up to speed
about your current benefits. Then begin to learn the facts
about health care reform because a tremendous amount of
misinformation is being put out by people who oppose it.
Consult www.hivhealthreform.org for facts and new state
laws. Your doctor, your clinic and even support groups may
also be helpful places to ask.



Keep up with your health care

STABLE SUPPLY OF MEDS
It’s not uncommon for people to run out of one or more of
their meds on occasion, but having a steady supply should
be a priority rather than waiting until the last moment to
get your prescriptions filled. Work closely with your doctor,
pharmacist and even insurance managers.
Plan ahead for weekends, vacations, moves or other times
when your regular routine is disrupted. Auto-refills or mail
order refills can help with this, and sometimes can be done
for 2 or 3 months at a time. Use cell phone or online calen-
dars to remind you about your refills.
Work with your doctor to establish about a week’s over-
lap so you always have seven or more days of backup in
case of emergency. Refresh your emergency supply to avoid
expired pills.
If you rely upon a public insurance program like ADAP,
make sure you know when you need to re-apply. Be sure to
keep up with enrollment requirements and any premiums
or out-of-pocket expenses. Make sure you read, act on and
file papers sent to you by these programs.


who use Ryan White services may see their health care
change.

you have a continued supply of meds.

your pills on time.


When to switch HIV meds

Most people who take
HIV meds will face a
time when they have
to switch one or more
of their meds for some
reason. Although
people can feel anxious
over this, we know a lot about how to do it safely.
It’s important to know the reason(s) why you want or
need to switch (see below). Work with your doctor about
how changing one or more of your meds today might affect
your choices over time.

SIDE EFFECTS
You may have a hard time dealing with a short-term side
effect after starting meds (such as constant diarrhea or
rash) or a long-term side effect (such as diabetes). If side
effects intrude on your quality of life or get worse over time,
you may want to consider switching if the HIV drugs are
causing them.

CD4 COUNT DOESN’T INCREASE
It’s reasonable for you to expect a gain of 100 CD4s or more
within your first year on meds. This may take longer for
some people; for example, if you had a very low CD4 count
before starting. If your CD4 count doesn’t noticeably im-
prove or even goes down, then you may need to switch.



When to switch HIV meds

MEDS NO LONGER CONTROL HIV
One of the main reasons why people switch a drug or even
their full regimen is because of treatment failure. This is
when one or more of your meds no longer control HIV.
When this happens, HIV has changed its genes enough
(mutated) to avoid the meds. As a result, viral load goes up.
Treatment failure is a serious situation. Major mutations
mean the drug probably can’t be used again. Minor muta-
tions mean it may or may not be used again. Mutations can
also lead to a whole class of drugs not being used. Getting
a genotypic resistance test done (see below) will tell you
about the kinds of mutations you have.

SIMPLER REGIMEN,
NEW DRUGS AVAILABLE
If you take several pills each day, and espe-
cially if you take them twice a day, you may
be able to find a simpler regimen. Also, new
drugs will probably come to market over the next ten years
that give you a chance to simplify your regimen.

GENOTYPIC RESISTANCE TESTS
If your viral load becomes detectable over two or more
tests, then a genotypic resistance test should be done. This
is best done when viral load is 1,000 or more. The test will
show which drug(s) HIV has become resistant to.
Make sure these test results are written down in your
medical file. This way, you and your doctor can review
them and make better decisions about which drugs to
avoid and which to try again if possible.


Taking a break from your HIV meds

Although today’s meds are much easier to take and toler-
ate, sometimes people just want to take a break from them.
Scientists have studied how to stop and re-start HIV meds
safely. Unfortunately, the studies show that this is generally
unsafe because of serious health risks over time. These
include a lower CD4 count that doesn’t return to the earlier
level, detectable viral load, disease progression, heart disease,
cancer and death, among many others. The best thing to do
is to find ways to take your meds every day as prescribed.

“DRUG HOLIDAYS”
Some people take a
few days off from their
meds every now and
then. Doing this once
may not cause long-
term problems. How-
ever, the more often this
happens, the more chances HIV has to become resistant to
your meds.

SHORT-TERM INTERRUPTIONS
If you have to stop your meds for a few days due to surgery
or an illness that makes it hard to swallow pills, then work
with your doctor on how to do this safely.



Taking a break from your HIV meds

LONG-TERM INTERRUPTIONS
The only people who may be able to take a break somewhat
safely are those who started HIV meds when their CD4
count was above 500. However, it’s still not recommended
because the risks outweigh the benefits. Your CD4 count
can drop quite rapidly while you’re off meds, and could
quickly put you in a serious situation.
It may seem that taking a long-term break every now and
then shouldn’t be too much of a problem. However, as we
saw in these clinical studies, stopping and then restarting
HIV meds can actually be more difficult. Many people dealt
with more side effects, had a harder time with adherence,
and saw their CD4 counts never return to normal.
If you want to consider a break, it should be done under
expert supervision such as in a clinical study (clinicaltrials.
gov). For instance, stopping Viread, Emtriva, Epivir or their
combo pills may cause a flare-up in people with hepatitis B.
The bottom line: Do not attempt a break on your own.


health problems.

your liver.


Changes in body shape

Some people are concerned how their bodies may change
from taking HIV meds. In the 80s and 90s, many saw their
bodies change shape quite drastically. Things like a large
belly, a hump on the neck, enlarged breasts, sunken cheeks
or thinning arms and legs were uncomfortable to deal with
… both physically and emotionally.
These tend to occur much less often today. When they do
occur (rarely) they usually take a longer time to develop and
are more subtle. We cannot predict who will or won’t develop
them, or which ones will appear and to what degree. What
we do know is that both HIV and HIV meds can contribute
in different ways to these changes, called lipodystrophy.
The main reason why this happens is due to a certain
kind of damage in fat cells. In the case of HIV and lipodys-
trophy, what is written below refers to changes in fats and
sugars, both as physical weight and in the blood.

GAINING BODY FAT (lipohypertrophy)
If people gain fat, they usually see it around their stomachs
as visceral fat (a buildup beneath the muscles). It can also
happen around the breasts or neck and shoulders. This
kind of belly fat is linked to bone loss and heart and other
organ diseases, among other conditions.

LOSING BODY FAT (lipoatrophy)
If people lose fat, they usually see this in their face, arms,
legs or butt. It is most often caused by taking Zerit (d4T)
and/or Retrovir (AZT) for more than 6 months. Other HIV
meds may cause this to a smaller degree.


Changes in body shape

CHANGES IN BLOOD FATS (dyslipidemia)
In HIV, changes in blood fats (lipids) refer to cholesterol
and triglycerides. As you age, higher levels of these lipids
can increase the risk of heart and pancreas disease, but
certain HIV meds can also increase lipids.

CHANGES IN BLOOD SUGAR (hyperglycemia)
Diabetes is common in HIV-positive people. High amounts
of sugar in the blood can lead to the condition, and some of
the older HIV meds can raise blood sugar levels.

PREVENTING THESE CONDITIONS
Keep HIV under control: Since HIV infection on its
own has been linked to heart disease and perhaps blood
sugar problems, keeping HIV undetectable for as long as
possible is one key way to help prevent these conditions.
Blood work: Reviewing your routine blood work can
alert you to things before they become a problem.
Diet and exercise: You probably hear this over and over,
but low-fat and low-sugar meals and routine exercise help
the body avoid the buildup of fat and sugar over time.
Change certain HIV meds: Generally speaking, newer
HIV meds tend not to cause these conditions as much as
the earlier meds do. If you change meds due to lipodys-
trophy, consult an experienced doctor.
Medications: Sometimes people need to take meds for
diabetes or cholesterol, and are common as people age.
Genetics: Your genes play a role in lipodystrophy. How-
ever, living a healthier life may offset how severe these
conditions may become despite your genes.


Herbs, prescriptions and HIV meds

Using HIV meds with some herbal
products and supplements can some-
times cause serious interactions. It’s
wise to understand this issue and
discuss it with your doctors. Much
of what we know about these inter-
actions comes from people talking
to their doctors, from cases seen in
emergency rooms, and occasionally from clinical studies.
A few supplements are known to affect the blood levels
of HIV meds. For example, St. John’s Wort and perhaps
milk thistle may cause your regimen not to work as well as
it could. Ask your doctor, pharmacist or a trained nutri-
tionist on ways to avoid unwanted interactions.
Sometimes more of a good thing isn’t good after all.
Large doses, or mega-doses, of some supplements can
actually damage the liver. Before taking mega-doses of any
supplement, discuss it with your doctor or pharmacist.
Other prescription meds like drugs used for erections
(Cialis, Levitra, Viagra) can cause severe low blood pressure
and death when taken with protease inhibitors. Talk to your
medical provider about drug interactions.


cause some HIV drugs not work as well as they could.

sometimes life-threatening interactions.


When will you see a cure for HIV?

When HIV was first identified in 1983, the United States
announced (very prematurely) that a vaccine was right
around the corner. Well, it’s 30 years later and a vaccine still
hasn’t been found, nor has a cure.
Today’s treatments have radically reduced the profound
illness that most people with HIV used to have. People are
now living quite healthfully with near-normal life spans.
Still, many people are not satisfied with thinking that
lifelong treatment is the best we can do.
Despite the various scientific disappointments along the
way, many people now believe that curing HIV is within
our reach. We’re seeing a concentrated amount of new cure
research being done. Much of this has come about from a
single case of curing the “Berlin patient” in 2007.
You may have heard about Timothy Brown, an HIV-pos-
itive American who had become sick from leukemia while
living in Germany. His illness gave his doctors a chance to
experiment with a unique but risky procedure to cure not
only his leukemia but his HIV. And it seems to have worked.
This procedure has opened the eyes of researchers to new
ideas for curing HIV. Many hope this research will lead to
either a sterilizing cure (completely getting rid of HIV) or
a functional cure (keeping HIV so low that the immune
system controls it on its own).
We’re still early in our search for the cure, but this is an
exceptional start to the research. Many people are hoping
that, within your lifetime, you will see a cure for HIV.


SECTION TWO:
Special situations
The first section described situations that
everyone living with HIV should know
about because most people will face them
at one time or another. However, our needs
change over time and they can differ from
person to person. Some people may be
concerned about passing HIV on to sex
partners. Others are more concerned about
how to improve their health and wellness.
In this next section, we talk more about
those situations. For example, maybe
you’re in your 50s or 60s now or you want
to get pregnant. You’re entitled to live a full
life with HIV, including having a family
and loving relationships. Read those topics
that apply to you.

If your sex partner(s) is HIV-negative

Despite what it felt like when
you first tested positive, that
shouldn’t mean the end of
sex and romance. Telling
your status to partners is
more tricky and risky for
people living with HIV, but
you can still have a fulfilling
sexual and romantic life.
Most people with HIV
want to protect their HIV-negative partners from becom-
ing infected, and most people do. The easiest and cheapest
way to do this is to either refrain from high-risk sex (such
as anal or vaginal sex without condoms) or always use a
condom. Some people also choose only to have sex with or
date other people who are HIV-positive. Below you’ll find
other things to consider when protecting your partners.

PrEP (Pre-Exposure Prophylaxis)
PrEP is a daily HIV pill that an HIV-negative person takes
to prevent transmission (along with using condoms). Taking
it as directed can reduce transmission by up to 90%. This
is true in both women and men and for both vaginal and
anal sex. PrEP is approved by the FDA and should only be
done with the help of a doctor. If you have an HIV-negative
sex partner, PrEP may be something to explore. For more
information, read Project Inform’s publications at www.
projectinform.org/prep.



GENITAL INFECTIONS
There’s more of a chance of passing HIV if you have sex
when a sexually transmitted disease like chlamydia or
syphilis is present in either partner. Even if symptoms aren’t
present, active genital infections can still raise the risk. Have
your doctor regularly screen for and treat STDs.

UNDETECTABLE VIRAL LOAD
The chance for passing HIV is much less
likely when the positive partner takes
HIV meds and stays undetectable over
time. Undetectable viral load in the
blood is linked to lower and perhaps
undetectable viral load in vaginal and
anal fluids and semen. However, several things can briefly
raise viral load in genital fluids and blood: sexually trans-
mitted infections, other infections that challenge the immune
system like hepatitis B or C, or even a recent vaccination.

FORESKIN VS. NO FORESKIN
Having a foreskin increases the risk because HIV aims for
the immune cells found within the foreskin. For straight
men during vaginal sex, there’s about a 60% lower risk of
transmission when he is cut. As for anal sex (straight or
gay), it’s not as clear how much more protection there is for
the man who’s cut.

“SERO-ADAPTIVE” BEHAVIORS
Sometimes HIV-positive people change their unprotected
sex to lower the risk of passing HIV to others: by sero-sorting,



or having sex with someone they think is also HIV-positive;
and by sero-positioning, or “bottoming” for an HIV-nega-
tive partner.
Sero-sorting with another HIV-positive person increases
the risk for super-infection, or getting another strain of HIV
which may make it harder to control. This most often occurs
during the first months after infection. However, there are
probably fewer serious concerns if both partners are on
HIV meds and stay undetectable.
Sero-positioning may somewhat reduce the risk for
passing HIV, but the HIV-negative top (insertive) can still
get HIV through unprotected vaginal and anal sex. This is
especially true if breaks in the skin or infections are present,
if viral load is detectable, or if the top is uncut.
Since these sero-adaptive behaviors imply unprotected
sex, you can still get other sexual infections such as chla-
mydia, herpes and syphilis, as well as diseases that people
don’t often think of in terms of sex, like hepatitis C. Recent
mini-epidemics of both syphilis and hepatitis C have been
seen in HIV-positive gay and bisexual men. Both have a
faster progression and are harder to treat in people with HIV.

HIV CRIMINALIZATION
Some states make it a crime to have sex with an HIV-nega-
tive person if you don’t disclose you have HIV—even if you
use a condom, take HIV meds, and have an undetectable
viral load. In some states, notably in the Midwest and the
South, prosecutions are increasing for those people who
don’t disclose. To learn more about this and how to protect
yourself, visit www.seroproject.com.


If you are under 25

HIV meds allow most everyone
to live a longer, healthier life. It’s
also true that making this hap-
pen takes seeing a doctor and
getting regular blood work done.
However, younger people—
especially those under 25 years
old—more often aren’t in regular
medical care. This is especially
true of young gay and bisexual
men and young African Ameri-
can and Latino men and women.
It’s also true that younger people tend to struggle with
keeping up with their meds. This probably has to do with
having an active social life and other distractions—like
juggling school, working, sports, volunteering and other
responsibilities.
These are real issues, but they aren’t insurmountable. If
you don’t have steady health care, consider getting onto
your parents’ insurance if you can. The Affordable Care Act
now allows children up to the age of 26 to be on their par-
ents’ plans.
If this doesn’t work for you (you may not have told your
parents about your HIV), then talk to a case manager about
other insurance options. As well, ask someone in your doc-
tor’s office or your case manager or pharmacist about ways
to remember taking your pills and keeping up with medical
appointments.


If you are over 50

Today, many more people in their 50s and 60s and even 70s
are finding out they have HIV. Many HIV-positive people are
also growing into older age. The US Guidelines recommend
that all people over 50 be on HIV meds. And although older
adults tend to respond a little slower to HIV meds, they can
nevertheless improve their health and wellness.

AGING AND HIV
The older you get, the more important it
is to keep up with a healthy lifestyle and
notice medical issues as they develop.
The health changes that people typically
see as they get older—diabetes, bone loss,
heart and other organ disease, cognitive
problems and cancer—sometimes show
up sooner in HIV-positive people.
It may be more difficult to assess your
health, because these conditions could
be from aging, HIV, HIV meds, other
meds, or a combination of them. Be
alert on how your health changes and be diligent about re-
porting them to your doctor and following treatment plans.
What also can help you stay healthy—and what you can
control—is staying active and challenging your mind. Talk
often with friends. Read or fill out puzzles. Take walks or
exercise within your limits. These all can help maintain your
bone, brain and heart health.


If you are over 50

HIV MEDS AND OLDER ADULTS
If you started HIV meds as an older adult, it may take a
little longer to see your CD4 count increase compared to
someone in their 20s or 30s. However, it’s very likely you’ll
continue to see these improve over time, which is one of
the main goals of treatment. In fact, older adults seem to do
better with taking HIV meds. The downside of that, however,
is that people over 50 tend to have more side effects and
drug interactions.
It’s common for older adults to take a lot of prescriptions,
so your HIV regimen may be just one of several doses of
pills you have to remember every day. How many medicines
do you take? Which are taken or not taken with food? Has
forgetfulness or depression become an issue?
Don’t feel embarrassed to ask for help from your nurse
or doctor around ways to take your pills on time. Also,
every now and then review all the meds you take with your
pharmacist or doctor to make sure drug interactions aren’t
overlooked so that all the meds you take are working as
well as they can.

SEX AND TRANSMISSION
Protecting sex partners from getting HIV is an issue that
people over 50 are dealing with more today. In some ways,
unprotected sex seems like a natural thing to do after 50
since pregnancy becomes less of an issue. For others, they
may stop using condoms because they’re mentally fatigued
from a lifetime of safer sex. Sometimes, people just don’t
see themselves at risk.


If you are over 50

As more men use erection drugs later in life, there’s been
a marked increase in sexually transmitted infections in
people over 50. This may be due, in part, to subtle changes
in the moist areas of sex organs as people age that can make
transmission easier. For all of these reasons, it’s important
to continue protecting sex partners from getting HIV.

VACCINES AND OTHER PREVENTION
As you get older, several serious illnesses can be prevented
by getting routine vaccines. The yearly flu vaccine and the
one for pneumococcal pneumonia are safe to get, as are
those used to prevent hepatitis A and B. Don’t forget your
booster tetanus shots. As well, recent information shows
that the shingles vaccine is safe for HIV-positive people.
As you probably know, aspirin can help with heart disease
and perhaps other inflammatory conditions. So discuss this
with your provider if you have hypertension. Make sure you
get routinely screened for various cancers as well, such as
cancers of the mouth, throat, lung, cervix, anus, liver and skin.


HIV meds.

manage. Talk to a pharmacist about all the meds you take.

Protect your partners from getting HIV and other STDs.

prevent other conditions.


If you want to have a family

HIV meds have helped
people go back to work,
volunteer, travel and
continue loving rela-
tionships. For some
couples where one is
negative and the other
is positive (mixed status), they also want to raise families. It’s
very possible for couples to conceive while greatly lowering
the chance of passing HIV to the negative partner during sex.
Couples should consider the emotional effects of trying
to conceive. If both partners are not fully informed or able
to speak up for themselves as they make decisions, then it
might be better to wait for another time to try.

GETTING EXPERT MEDICAL HELP
Before you start, get informed medical support from friendly
doctors and nurses. This may not be easy, as some do not
agree with mixed status couples trying to conceive. You may
need to keep looking, use the resources at http://hiv.ucsf.edu/
care/perinatal.html, or find HIV-experienced doctors. Doing
this on your own could increase the risk of transmission.

STAYING ON A STABLE HIV REGIMEN
Keeping viral load undetectable can reduce transmission by
up to 96%. Therefore, the HIV-positive partner should be
taking HIV meds as prescribed every day and getting more
regular viral load tests done.



HAVING TIMED INTERCOURSE
Conception doesn’t happen every time sex does. Therefore,
to reduce the risk of HIV as much as possible, restrict sex
only to when there are no genital infections present and only
to her most fertile days. A doctor can help determine this.

TAKING PrEP
(PRE-EXPOSURE PROPHYLAXIS)
PrEP is when an HIV-negative person
takes an HIV pill daily to prevent HIV,
which reduces this risk by up to 90%
when used with condoms. PrEP can
also be used by couples who are trying
to conceive, but there may be unknown
risks for the baby if the woman takes PrEP. Talk to your
doctor about PrEP as part of all family planning decisions.

DOING SELF-INSEMINATION
If he is negative, the woman could use a plastic baby’s
syringe (found in drug stores or doctor’s office) to insert
his semen near her cervix. To collect the semen, he should
ejaculate into a plain condom or clean container. Read
“Home Insemination” at http://hiv.ucsf.edu/care/perinatal/
resources.html.

HAVING A FORESKIN VS. NONE
During unprotected sex, having a foreskin can make it
easier for the man to get HIV. There’s about a 60% lower
risk of transmission when the male partner is cut.



OTHER METHODS
Though assisted reproduction services are quite expensive—
and not available everywhere—some people turn to fertility
specialists who can help them with in-vitro fertilization (IVF)
and sperm washing, which are often used together. Sperm
washing is a process that “cleans” HIV away from sperm.
Couples may also want to consider other choices, such
as adoption or donor sperm. These may be appropriate for
certain couples wanting to raise children.

OTHER THINGS TO CONSIDER
Even if the positive partner is on stable HIV meds, genital
infections and other infections like the flu could temporarily
increase viral load in genital fluids and blood, perhaps to
an infectious level. Getting a vaccination can do the same.
Avoid unprotected sex during or shortly after these times.

Options that reduce the risk for transmission
HIV+ HIV- HIV- HIV+
woman man woman man
Expert medical support
HIV treatment adherence
Effective HIV treatment
STD prevention, treatment
Timed intercourse
PrEP
No foreskin
Self-insemination
Assisted reproduction
Donor sperm
Adoption


If you are an HIV-positive woman

Not all HIV meds have been studied
as well in women. For instance, it’s not
always well understood how female
hormones interact with HIV meds.
Despite this, treating HIV is pretty
much the same for women and men,
aside from the areas described below.
However, what often isn’t talked
about in a doctor’s office are the things
that can get in the way of women taking good care of their
HIV and general health. Many women look after other
people first before doing those key things that keep them
healthy. This includes taking meds, getting to regular doctor
visits, eating well, getting good sleep, and keeping active
with hobbies.
If this sounds like your life, then it opens you up to some
of the issues detailed in other parts of this booklet. The bot-
tom line: your health matters. And if you’re taking the best
care of yourself as you possibly can, then you’re also prob-
ably doing the best for others in your life.

CONTRACEPTIVES
Many HIV meds, mostly protease inhibitors and NNRTIs,
can interact with hormonal birth control pills (those with
ethinyl estradiol, norethindrone). These interactions can
change how well the birth control pill or HIV meds do
their jobs. In this case, women may consider other HIV
meds or use another form of birth control instead of, or in
addition to, the pill.



PERIODS AND MENOPAUSE
Heavy, painful or irregular periods may occur with some
HIV meds, including some protease inhibitors. Report any
changes you notice to your doctor.
Women can lose about 5% of their bone mass during
menopause. Combine that with the bone loss that can
happen from taking HIV meds, from aging or from being
inactive, and this can lead to fractures and broken bones.
Talk to your provider about your options for prescriptions
that help maintain bone health.
Some studies show that women with more advanced
HIV disease may go through menopause at an earlier age,
although other studies do not.

PREGNANCY
We know a great deal about how to safely
prevent HIV being passed during preg-
nancy and birth. The topics below should
be considered and discussed with your
doctor when taking HIV meds leading up
to and during pregnancy.
Ensuring the mother’s health:

positive pregnant women be on treatment,
regardless of CD4 count or viral load.




Protecting the baby:

disease not start treatment during their first trimester, when
the baby’s organs are developing.

trying to get pregnant and after getting pregnant, due to a
risk of birth defects. If a woman has to use Sustiva, it’s best
to wait until the second trimester to start.
Choosing meds:

seen during pregnancy, such as diabetes.

increased during the third trimester.

are above 250.
-
less the woman develops severe side effects, or is resistant to it.

BREAST-FEEDING
Whether or not the woman is taking HIV
meds, the virus can be found in breast
milk and may be passed to the child dur-
ing breast-feeding. HIV meds may also
be passed. Therefore, the US Guidelines
recommend that mothers use formula to
feed newborns. Women should consult
experienced maternity doctors to figure out their options.
Accredited national or local breast milk banks may also
help and may meet the infant’s need for breast milk.


use recreational drugs

It’s not uncommon for
people to drink or use
recreational drugs. For
some, this isn’t an issue
for them socially or
medically. However,
drinking or using drugs
can change how well your
HIV meds work.
Most health care providers recommend that the average
man should have no more than two drinks per day. Women
should have no more than one.
People who drink more than that—or who binge (4 drinks
for women and 5 for men within 2 hours)—are at a higher
risk for accidents, STDs, mental health problems, and
diseases of the liver, heart and brain. As for recreational
drugs such as ecstasy and ketamine, they can cause severe
reactions with HIV meds, including heart attacks, hepatitis,
paranoia and death.
That all probably sounds alarming, but we’ve mentioned
it because it’s a real issue for some people. As well, there are
other reasons why it’s important for HIV-positive people to
drink responsibly and to limit their drug use, which includes
what’s below.


use recreational drugs

ADHERENCE
If you drink regularly or use drugs, you will probably have
a harder time remembering to take your meds. As we’ve
mentioned often in these booklets, not taking your HIV meds
as prescribed can cause them to stop working and limit your
treatment options.

LIVER DISEASE
On its own, HIV can be hard on the liver. And 1 out of 4
HIV-positive people also have hepatitis C, which can
greatly hurt liver health as well. Adding alcohol or certain
recreational drugs can make things even worse. You can
help your liver stay healthier longer by not using drugs or
not drinking too much or any alcohol.
If you’re not successful with cutting down or cutting out
your alcohol or drug intake on your own, ask your health
care provider or case manager for help. There are many
kinds of programs that can support you while you stop
drinking or drugging.


you forget to take your meds on time.
-
tions with HIV meds.


If you smoke tobacco

On its own, HIV can worsen some
common diseases, like heart and
lung disease, bone loss and various
cancers. Nearly twice the number
of HIV-positive people smoke
compared to HIV-negative people. So when you add smok-
ing tobacco (or marijuana)—and to a smaller extent chew-
ing tobacco—to HIV infection, then these diseases actually
have a chance to develop at a faster rate. This is especially
true for heart disease and for head, neck and anal cancers.
Almost all doctors would agree that stopping smoking is
the number one thing you can do to significantly improve
your health. Although it can be a frustrating and difficult
process to go through—and most people have to try it
more than once—the bottom line is that you can greatly
reduce your risk of these health hazards even within one
year of stopping. By the time you’re ten years away from
your last cigarette your risk for many of these diseases is
about the same as people who never smoked.
There are many different types of stop-smoking pro-
grams and products that may work. On the one hand, some
people try stopping on their own with products bought
over the counter, like nicotine gum, patches and lozenges.
Your doctor can also write a prescription for you, such as
Chantix or Wellbutrin. On the other hand, some people
prefer to talk with others who are going through the same
process and find that support groups or programs at com-
munity agencies are more successful for them.
For more info, a good website is www.mayoclinic.com/
health/quit-smoking-products/MY00781.


If you have other conditions

DENTAL HEALTH
An often overlooked way to keep good general health is by
visiting your dentist regularly. Poor oral health, like untreated
gum disease, can contribute to other conditions like stomach,
heart or lung disease. Why? Because the inflammation and
bacterial infections in the mouth can spread down into the
upper chest. See your dentist every six months, and if you
feel comfortable with it disclose your HIV status.

OVERWEIGHT
While HIV meds have certainly extended
people’s lives, unfortunately we’ve also
seen many more HIV-positive people b
ecome overweight or obese. This can lead
to diabetes, hypertension, and heart and
kidney disease—conditions already more
common in HIV-positive people and in
African Americans and Latinos. For older
adults with HIV, being physically active
may be even more important to help
from becoming frail.
If you’re able, consider joining a gym.
If you can’t, then taking brisk 20-minute walks a few times
a week can help a great deal. At-home exercise routines are
available through DVDs, TV and gaming stations. Use on-
line sources or find healthy eating programs through your
local health department or community organizations. Ask
for help when you don’t know where or how to start.



HEPATITIS C (HCV)
About 1 out of 4 Americans with HIV also have hepatitis C,
but many don’t know it. If you haven’t been tested, ask for
a HCV antibody test. If that comes back positive, then get
an RNA test done to see if you have chronic hepatitis C. If
you do, get your health assessed by someone who is experi-
enced in making decisions about treating both.
HIV infection can make hepatitis C worse. It’s unclear
whether hepatitis C makes HIV worse. Newer HCV meds
can cure hepatitis C in about 3 out of 4 co-infected people.
For more info, call 877-HELP-4-HEP (877-435-7443).

HEPATITIS B
Before starting HIV meds, you should have been tested for
hep B. If you were negative, then get the hep B vaccine.
If you have chronic hep B, then your current HIV regimen
should include one of these meds because they’re also used
to treat hep B: Viread (Atripla, Truvada), Emtriva (Atripla,
Truvada), or Epivir (Combivir, Epzicom, Trizivir).
HIV can make hep B worse, including cirrhosis and
end-stage liver disease. It’s unclear whether hep B makes
HIV worse. It’s rare for co-infected people to clear hep B, so
treating it is more about keeping it less active over time to
reduce damage. Seek doctors experienced in treating both.

ANAL AND OTHER HPV CANCERS
The human papillomavirus (HPV) can cause abnormal cells
to grow (dysplasia), which sometimes can turn into cancer.



These include cancers of the mouth, throat, cervix and anus.
(HPV also causes the common wart which isn’t cancerous.)
HIV-positive men who have sex with men are at a much
higher risk than normal for anal cancer. HIV-positive women
are also at a higher risk whether or not they have anal sex,
and are at higher risk for cervical cancer than HIV-negative
women. Work with your doctors about how best to prevent
these conditions by routine screening.

DIABETES
Type 2 diabetes is usually seen as people age. It is more
common among HIV-positive people, but many don’t know
their risk and go undiagnosed. Some HIV meds, such as
protease inhibitors, can contribute to diabetes to some
degree. It’s still possible to manage both diabetes and HIV,
given the various medicines used for both.

BONE LOSS
Many HIV-positive people have lower than normal bone
mass, perhaps due to HIV and ongoing inflammation. Cer-
tain HIV meds, such as Viread, can also cause bone loss.
Having this bone loss may mean there’s a higher risk for
fractures or breaks.
Some studies find that this loss levels out within a year or
two of starting meds, but other studies show continued loss
over time. Bone density screenings are helpful for finding
bone loss. Vitamin D and calcium supplements may help
prevent bone problems, as well as prescription medicines.


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