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ADHERENCE:
                             KEEPING UP
                              WITH YOUR MEDS                                                                                                   PUBLISHED BY


                                                                            

                                       ideas on how to keep up with
                                          taking your medications
                                                                                                                                                 MAY 2008
                        Staying on a treatment regimen is difficult under the best of conditions. Even doc-
                        tors and nurses find it difficult to take a simple course of antibiotics as directed.
                        Taking HIV therapy sometimes requires a person to take a dozen or more pills
                        a day, with specific timing and diet restrictions. Then, when a person also uses
                        drugs for other infections, the total daily pill count can soar. Keeping up with your
                        meds alone becomes a major activity. So it’s little wonder that people have trouble
                        keeping up with the program. Therefore, adhering to your HIV therapy means
                        taking an honest and objective view of your life and daily activities.




  things to consider before you start therapy
  Taking on complex, long-term treatment doesn’t feel                                and how you might manage side effects will be helpful.
  natural to most people. However, this challenge is not                             Some people try a “dry run” before beginning therapy,
  unique to people with HIV. Millions have learned to                                like taking empty gel caps, or small candies like M&Ms,
  cope with diseases that require long-term management,                              on the prescribed schedule while sticking to any diet
  including diabetes, mental illness and heart disease,                              requirements. While this doesn’t prepare one for possi-
  among others.                                                                      ble side effects, it can help you find times when remem-
     Whether or not you feel you’re able to adhere to a                              bering to take therapy might be more of a challenge.
  new regimen may be one thing to consider — along with                                 Perhaps the first and most important aspect of
  your lab results and overall general health — in decid-                            adherence lies in choosing the right therapy for you in
  ing the right time to begin HIV therapy. Your readiness,                           the first place. Drugs can differ in many ways including:
  or ability to commit to the demands of therapy, is an                              › whether or not they can be taken with food,
  important consideration to discuss with your doctor.
     Why adhering to all your HIV drugs is important is
                                                                                     › whether they are taken by mouth or by injection,
  because not taking them as prescribed every day will                               › how many times a day they must be taken,
  lead to inadequate levels of the drugs in your blood. This                         › how many pills per day are needed,
  can result in many things, including no real therapeutic                           › what other drugs or complementary therapies they can
  benefit, possible disease progression, development of                                and cannot be used with,
  resistance, and unnecessary side effects.
     Giving careful thought to what benefits you hope
                                                                                     › their side effects and how they make a person feel, and
  to get from treatment, how you’ll evaluate the benefit,                            › some require refrigeration or other special handling.

© PROJECT INFORM 1375 MISSION STREET   SAN FRANCISCO, CA 94103-2621   415-558-8669    FAX 415-558-0684   SUPPORT@PROJECTINFORM.ORG   WWW.PROJECTINFORM.ORG
Similarly, people differ widely in their habits and needs.
                                                                A few examples include:
                                                                                                                                            Adherence is more than
                                                                › Some people are bound to rigid work schedules, such                       just taking pills ...
                                                                  as hourly workers.
                                                                › Some have constantly changing schedules, or they                          Properly adhering to your medicines involves
                                                                                                                                            sticking to an entire regimen:
                                                                  routinely move in and out of different time zones, like
                                                                  airline workers or truck drivers.                                         • taking the full dose as prescribed,
                                                                › Some people are unable to work and their schedules                        • taking your pills at the prescribed times
                                                                  are dictated by a seemingly endless string of medical
                                                                                                                                              every time,
                                                                  appointments.
                                                                › Some also have children, parents or partners to care                      • obeying any food restrictions, and
                                                                  for.                                                                      • obeying interactions with other medicines,
                                                                › Some have people around to help remind them of                              herbs and supplements.
                                                                  their drug schedules, while others are alone and must
                                                                  rely on timers, pill boxes or other devices.
                                                                › Some people have wasting syndrome or infections that
                                                                  might make eating difficult; others have no dietary
                                                                  problems but don’t eat regularly.
                                                                › Finally, some people have to deal with other challenges
                                                                  like substance abuse, homelessness or mental illness.

                                                                To find a treatment regimen you can live with, it’s nec-
                                                                essary to settle two sets of requirements: yours and the
                                                                drug’s. People who lead busy but largely unstructured
                                                                lives might prefer drugs that can be taken easily with
                2                                               or without food. This may make it easier to fit therapy
                                                                into changing routines. Others, whose time is tightly
KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM




                                                                structured by work, might find it easier to go on more
                                                                demanding regimens. These people can select a regimen
                                                                purely on the basis of its potency.
                                                                   People who have trouble eating or who struggle with
                                                                                                                                            One study suggests that about 12% of people
                                                                weight loss may wish to avoid drugs that can’t be taken
                                                                                                                                            miss one dose in the past day, and 11% the day
                                                                with foods or even conversely, those requiring that
                                                                                                                                            before that. Other studies report that nearly
                                                                they be taken with food. Others who take many other
                                                                                                                                            all who failed to achieve and sustain a viral
                                                                drugs for opportunistic infections or other health con-
                                                                                                                                            load below the limit of detection had greatly
                                                                ditions might avoid HIV drugs that have many drug
                                                                                                                                            changed from their prescribed regimens for a
                                                                interactions. They might even avoid creating regimens
                                                                                                                                            month or more.
                                                                that require taking many more pills. Also, the more
                                                                                                                                               There are many reasons for failing to stay
                                                                HIV drugs you’ve already used, often the fewer choices
                                                                                                                                            on your treatment regimen. One study showed
                                                                you have about what to use next. Thus, often in more
                                                                                                                                            that of those who missed one or more doses:
                                                                advanced disease, your drug history tends to dictate
                                                                                                                                                40% simply forgot
                                                                what can and can’t be taken.
                                                                                                                                                37% slept through a dose
                                                                   There may not be any perfect regimen for you, but
                                                                                                                                                34% were away from home
                                                                there are options that are more and less easy to adapt
                                                                                                                                                27% changed their therapy routine
                                                                to your life. The goal is to select a regimen you can live
                                                                                                                                                22% were busy
                                                                with — one that fits with who you are and how you live.
                                                                                                                                                13% were sick
                                                                Once you select a regimen, sticking to it requires plan-
                                                                                                                                                10% experienced side effects
                                                                ning, support and commitment.
                                                                                                                                                 9% were depressed




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




                                                                                                                                                                KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM
                                                                                                              Many things can get
Stable access to drugs is critical                  People differ in their abilities to                       in the way of taking
for their effective use. People can-            adhere to their regimens and this                             your meds properly:
not stay on a regimen if they don’t             is influenced by lifestyle and other                             taking care of children or
have constant access to their drugs.            factors. People dealing with major                               other family members
While it may sound obvious, many                life problems like active drug use                               feeling good
people taking HIV meds sometimes                or homelessness face difficult chal-
find themselves running short of                lenges with adherence. But that                                  forget to take the pills
one or another drug for a variety               doesn’t mean adherence is impos-                                 Saturday and Sunday
of reasons. This is often because               sible. People with depression are                                schedules
of poor planning. Skipping doses                also more likely to have difficulty                              vacations
because you’ve run out of a drug is             with adherence. If you suffer from
                                                                                                                 not refilling on time
still skipping doses.                           depression or mental illness and are
    Some drugs have different stor-             considering treatment, consult a                                 no side effects present
age requirements than others, so                mental health expert as well as your                             laziness
your planning must also address                 regular doctor.
                                                                                                                 depression
these storage needs. This is pri-                   In reality, only you can decide
marily true of Norvir (ritonavir)               whether you’re ready and commit-                                 language barriers
and Kaletra (lopinavir + ritonavir),            ted enough to maintain a steady                                  job concerns
which for storage over one or two               course of treatment. If you are not                              moving
months respectively need refrigera-             ready or not in a position to make a
tion. Once storage is addressed, it’s           serious effort at adherence, you may                             hospital stays
helpful to put aside a full week’s              be better off delaying treatment.                                drinking or doing drugs
                                                                                                                                                                          3
supply, in an accessible place, right           This doesn’t jeopardize your ability                             sleeping a lot
after getting your drugs, and then              to use effective treatment later. In
                                                                                                                 fear of the medicines
start using the rest of that supply.            contrast, misusing your drugs can
This creates an emergency stash                 jeopardize your future options by
should unforeseen circumstances                 encouraging drug resistance. This
cause your basic supply to run                  can affect entire classes of HIV
short. Your stash should be rotated             therapy.
or replaced once a month to keep it
fresh. Some people use a small con-
tainer attached to their key chains
for a daily backup.
    Keeping a steady supply of meds
requires you to work closely with
your doctor and pharmacist. And,
when using AIDS Drug Assistance
Programs or pharmaceutical com-
pany patient assistance programs,
even more of the burden falls on you
to make sure you order supplies as
the program requires and still have a
safety net for unforeseen situations.
The main point is to always stay at
least a week ahead of your needs.


    © PROJECT INFORM 1375 MISSION STREET   SAN FRANCISCO, CA 94103-2621   415-558-8669   FAX 415-558-0684   SUPPORT@PROJECTINFORM.ORG   WWW.PROJECTINFORM.ORG
{
                                                                strategies for adherence

                4                                                                                                                      › Integrate your regimen into your daily routines.
                                                                                                                                          Most people find it easier to fit medicines into their
                                                                                                                                          lives, rather than scheduling their lives around their
KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM




                                                                                                                                          medicine. Use a daily activity, one that you do every
                                                                                                                                          day without fail like brushing your teeth, to prompt
                                                                                                                                          you to take your meds. Take them before the activity;
                                                                                                                                          it’s easier to remember.


                                                                        some of the
                                                                                                                                       › Count out all your meds in daily doses for a week at
                                                                                                                                          a time. Use a pillbox, Mediset or nail organizer from
                                                                following strategies                                                      a hardware store to hold each dose. Setting up a weekly
                                                                                                                                          pillbox also needs to become routine. Meds can also
                                                                     and tools have                                                       be divided daily by dose and put in separate bags or
                                                                   worked for many                                                        canisters marked with the dosage times — some use
                                                                                                                                          film canisters. Some people put each canister near the
                                                                      people taking                                                       place they’ll take a dose. For example, put the morn-
                                                                        HIV therapy.                                                      ing dose by the coffee pot, and evening dose by the TV.

                                                                                                                                       › Keep a checklist or diary for doses that you’ve taken
                                                                                                                                          with a space to note how you’re feeling.

                                                                                                                                       › Use an electronic pillbox or beeping alarm to
                                                                                                                                          remind you when to take your meds. The downside
                                                                                                                                          of these mechanisms is that the electronic pillboxes
                                                                                                                                          are too small and the alarms may be very obvious.


                                                        TOLL-FREE NATIONAL HIV/AIDS TREATMENT HOTLINE   1-800-822-7422   LOCAL AND INTERNATIONAL   415-558-9051   MONDAY–FRIDAY 10–4   PACIFIC TIME
KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM
Adherence strategies may not work for everyone. Because of cultural, gender and socio-eco-
nomic differences, these suggestions are more appropriate for some people than others.
Different issues are more important in some settings than others.
    For example, some people have a great need for privacy around their HIV status and
taking medicines. This places greater emphasis on planning ahead for moments of privacy
each day. For people struggling with lack of housing, active drug use or untreated mental
health conditions, adherence strategies will often go beyond what we cover here. Still,
even in the most challenging situations, people have daily routines that can be used as
triggers for taking meds.
    Adherence strategies can and must vary from person to person. The best way to ensure
success is your motivation and commitment to your regimen. It may help to know that
many people have accommodated long-term treatment in their lives. People with chronic
illnesses have long shown that it can be done. It may take a few tries before you find the
approach that works best for you.




› Use a daily planner, especially at the start of a new                    › Keep all your meds with you when you travel. Bag-                                            5
  regimen. Inserting your dosing requirements into a                          gage can be lost or delayed.
  planner, as if they were appointments, can be a use-
  ful reminder. Others use hand-held computers or                          › Plan ahead for privacy if you need to hide the fact
  electronic organizers to remind them of daily doses.                        that you’re taking meds. In this situation, try to find
  These kinds of devices can be bought for under $50.                         at least one person with a similar problem with
                                                                              whom you can discuss strategy. You could adjust
› Evaluate your regimen about two weeks after you                             your lunch or break schedule to ensure privacy or keep
  start it. It may take a few weeks of experimenting                          water in your bedroom at all times.
  to figure out how to best schedule your meds with
  other events in your life. For this reason it may be                     › Keep a diary. Include whatever is important to you:
  useful to start a dry run of therapy with small candies,                    when you took treatment, reason for missed doses,
  allowing time to adjust your routines before actually                       how you feel, etc. Keeping a record like this reminds
  taking the drugs.                                                           you how well, or poorly, you’re doing with adherence.

› Plan ahead for weekends, vacations or moves. People › Use your support network to remind you of your
  often miss doses when they’re away from home. For                           medication needs. Some people have a treatment
  most, weekends are different from normal weekday                            buddy who can make daily reminder phone calls.
  routines, so it’s important to plan ahead. Take into
  account the changed environment. Will you feel                            › Set up a support network for your emotional needs.
  comfortable with your normal routine or will you                            It’s hard to take treatment and also deal with daily
  need other strategies?                                                      stress, whether it’s taking care of children, working
                                                                              or dealing with illness.




    © PROJECT INFORM 1375 MISSION STREET   SAN FRANCISCO, CA 94103-2621   415-558-8669   FAX 415-558-0684   SUPPORT@PROJECTINFORM.ORG   WWW.PROJECTINFORM.ORG
building a support network for yourself
                                                                Setting up a good relationship with your doctor is                           Similarly, the requirements for Viracept (nelfinavir)
                                                                critical for maintaining your adherence. Your doctor                      are often thought to mean that it must be taken with
                                                                should know the current standards of care for treating                    food. In fact, the label says only that it should be taken
                                                                HIV. He or she should spend time with you to fully                        with food. In some cases, there’s a genuine medical
                                                                explain the benefits and the challenges of treatment.                     need to take a drug with or without food. In other
                                                                   If you decide to start treatment, it’s important to                    cases, like for Videx (didanosine, ddI), taking it with
                                                                clarify your regimen with your doctor. Knowing what                       food is recommended only to lessen its side effects or




                                 (                                                       )
                                                                                                  drugs you’re taking                     unpleasant aftertaste.
                                                                                                  and why will help you                      Some researchers note that people who foster friendly
                                                              A USEFUL WAY TO                     better understand the                   and supportive relationships with medical office staff
                                                        UNDERSTAND YOUR TREATMENT
                                                                                                  importance of adher-                    get better service from them. Bringing another person
                                                          REGIMEN IS WRITING DOWN
                                                        INSTRUCTIONS AND REPEATING                ence. One survey                        — a family member, friend or advocate — to appoint-
                                                         THEM BACK TO YOUR DOCTOR.                showed that the vast                    ments ensures that two people can ask questions and
                                                                                                  majority of people                      get information.
                                                                                                  were unclear of their                      Ask your doctor to be clear about side effects how
                                                                                                  regimens only ten                       to manage them. Being mentally prepared for side
                                                                minutes after talking with their doctors. Some under-                     effects can make them easier to manage if they occur.
                                                                stood the dose but were confused about diet restric-                      Make a plan with your doctor around what to do if you
                6
                                                                tions. Others were unclear on the correct doses or the                    experience a difficult side effect. Knowing that you will
                                                                timing of them.                                                           have timely contact with a doctor may reassure you that
KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM




                                                                   A useful way to understand your treatment regimen                      side effects will be managed well.
                                                                is writing down instructions and repeating them back                         It is also important to find out what to do if you miss
                                                                to your doctor. You can check them again with your                        a dose. If you do miss one, ask your doctor how you
                                                                pharmacist when you pick up or order the drugs. Use                       should handle it — if you should make it up or just take
                                                                the team approach. Your doctor, nurse, pharmacist                         the next scheduled one at the usual time. Also, note the
                                                                and other providers can help you start and maintain                       missed dose and the reason for missing it. There may
                                                                effective therapy.                                                        be a strategy you can use to avoid missing a future dose.
                                                                   Since adjusting your diet can be difficult at first, it’s                 If you’re unable to take all the drugs in your regi-
                                                                important to know what and when you can and cannot                        men, don’t take a partial dose. Contact your doctor
                                                                eat. Just as important, try to understand exactly what                    immediately if you can’t take your full dose for what-
                                                                is meant by the drug’s diet requirements. For example,                    ever reason. In this situation it might be necessary for
                                                                many people interpret them for Crixivan (indinavir)                       you to stop all of your HIV drugs until you’re able to
                                                                to mean that it should not be taken with food, which                      take a complete dose in the regimen again.
                                                                can be difficult for many people. The actual require-
                                                                ment is that it shouldn’t be taken with fatty foods. Light
                                                                snacks and non-fat foods can be taken with the drug
                                                                without concern.




                                                          TOLL-FREE NATIONAL HIV/AIDS TREATMENT HOTLINE   1-800-822-7422   LOCAL AND INTERNATIONAL   415-558-9051   MONDAY–FRIDAY 10–4   PACIFIC TIME
KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM
committing to staying on your therapy
Resistance is another reason to adhere to your regimen.                    resistance becomes a threat. There are no data telling
Today’s potent combination therapy has brought new                         us exactly when resistance begins. There is, however,
hope and new challenges to people living with HIV.                         plenty of evidence that people who are adherent have
However, if therapy is not used properly (like skip-                       better and more sustained anti-HIV responses. While
ping doses, taking lower than prescribed doses or not                      no single episode of a skipped or late dose is likely —
taking them on time), drug resistance will probably                        by itself — to trigger resistance, the more often they
develop faster. In this case, the potential benefits of                    occur, the more likely it is to develop drug resistance.
therapy can be lost.
   In order to prevent drug resistance, it’s important
to keep enough drug in your bloodstream 24 hours a
day. Each time you miss a dose, the drug blood level
falls below the minimum necessary level for several
hours. This creates an opportunity for HIV to develop
resistance to the drug(s).
   Moreover, resistance to one drug may result in
resistance to other drugs of the same class, called cross-
resistance. This is particularly true about NNRTIs.
High level resistance to one of the protease inhibitors
                                                                                                                                                                          7
almost certainly passes on some degree of resistance
to almost all the others.
   There’s little debate about it being difficult to always
adhere to today’s complex regimens. It is somewhat
less clear how much non-adherence is tolerable before




                                                                                    www.projectinform.org
                                                        i        Go online around the clock and get connected to treatment
                                                                 information in the privacy of your own home!




    © PROJECT INFORM 1375 MISSION STREET   SAN FRANCISCO, CA 94103-2621   415-558-8669   FAX 415-558-0684   SUPPORT@PROJECTINFORM.ORG   WWW.PROJECTINFORM.ORG
a final thought on
                                                                keeping up with your meds
                                                                Perhaps the greatest way that adherence to HIV
                                                                treatments differs from adherence in other chronic
                                                                illnesses is the lack of immediate symptoms or con-
                                                                sequences when adherence fails. This lack of a rapid
                                                                response places more of the burden for adherence on
                                                                the mind and less on the immediate reaction of the
                                                                body. A person living with HIV must take a long-
                                                                term view in order to have a long-term future.
                                                                    Adherence also challenges many of the support
                                                                systems for people living with HIV. Some doctors
                                                                have less time to spend educating their patients. As
                                                                well, most doctors have little or no training in the
                                                                tools that might help people stay on their treatment                         effects and drug interactions, and maintain more con-
                                                                regimens. Sometimes, in order to be fully supported,                         sistent drug levels in blood. This work is underway for
                                                                people may need to seek help from others, like treat-                        some treatments that may require only once-a-day or
                                                                ment support groups, case managers or treatment                              even once-a-week dosing.
                                                                buddies.                                                                        In the meantime, there are many ideas for what
                                                                    The best long-term solutions for treating HIV —                          you can do to make the most out of your treatment
                                                                outside of a cure — must focus on making better and                          regimen. Consider the ones presented here or come
                8                                               longer-lasting therapies. These include ones that are                        up with your own solutions that make the most sense
                                                                easier to use, more easily absorbed, have fewer side                         for your life.
KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM




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Adherence 110914180412 Phpapp02

  • 1. ADHERENCE: KEEPING UP WITH YOUR MEDS PUBLISHED BY  ideas on how to keep up with taking your medications MAY 2008 Staying on a treatment regimen is difficult under the best of conditions. Even doc- tors and nurses find it difficult to take a simple course of antibiotics as directed. Taking HIV therapy sometimes requires a person to take a dozen or more pills a day, with specific timing and diet restrictions. Then, when a person also uses drugs for other infections, the total daily pill count can soar. Keeping up with your meds alone becomes a major activity. So it’s little wonder that people have trouble keeping up with the program. Therefore, adhering to your HIV therapy means taking an honest and objective view of your life and daily activities. things to consider before you start therapy Taking on complex, long-term treatment doesn’t feel and how you might manage side effects will be helpful. natural to most people. However, this challenge is not Some people try a “dry run” before beginning therapy, unique to people with HIV. Millions have learned to like taking empty gel caps, or small candies like M&Ms, cope with diseases that require long-term management, on the prescribed schedule while sticking to any diet including diabetes, mental illness and heart disease, requirements. While this doesn’t prepare one for possi- among others. ble side effects, it can help you find times when remem- Whether or not you feel you’re able to adhere to a bering to take therapy might be more of a challenge. new regimen may be one thing to consider — along with Perhaps the first and most important aspect of your lab results and overall general health — in decid- adherence lies in choosing the right therapy for you in ing the right time to begin HIV therapy. Your readiness, the first place. Drugs can differ in many ways including: or ability to commit to the demands of therapy, is an › whether or not they can be taken with food, important consideration to discuss with your doctor. Why adhering to all your HIV drugs is important is › whether they are taken by mouth or by injection, because not taking them as prescribed every day will › how many times a day they must be taken, lead to inadequate levels of the drugs in your blood. This › how many pills per day are needed, can result in many things, including no real therapeutic › what other drugs or complementary therapies they can benefit, possible disease progression, development of and cannot be used with, resistance, and unnecessary side effects. Giving careful thought to what benefits you hope › their side effects and how they make a person feel, and to get from treatment, how you’ll evaluate the benefit, › some require refrigeration or other special handling. © PROJECT INFORM 1375 MISSION STREET SAN FRANCISCO, CA 94103-2621 415-558-8669 FAX 415-558-0684 SUPPORT@PROJECTINFORM.ORG WWW.PROJECTINFORM.ORG
  • 2. Similarly, people differ widely in their habits and needs. A few examples include: Adherence is more than › Some people are bound to rigid work schedules, such just taking pills ... as hourly workers. › Some have constantly changing schedules, or they Properly adhering to your medicines involves sticking to an entire regimen: routinely move in and out of different time zones, like airline workers or truck drivers. • taking the full dose as prescribed, › Some people are unable to work and their schedules • taking your pills at the prescribed times are dictated by a seemingly endless string of medical every time, appointments. › Some also have children, parents or partners to care • obeying any food restrictions, and for. • obeying interactions with other medicines, › Some have people around to help remind them of herbs and supplements. their drug schedules, while others are alone and must rely on timers, pill boxes or other devices. › Some people have wasting syndrome or infections that might make eating difficult; others have no dietary problems but don’t eat regularly. › Finally, some people have to deal with other challenges like substance abuse, homelessness or mental illness. To find a treatment regimen you can live with, it’s nec- essary to settle two sets of requirements: yours and the drug’s. People who lead busy but largely unstructured lives might prefer drugs that can be taken easily with 2 or without food. This may make it easier to fit therapy into changing routines. Others, whose time is tightly KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM structured by work, might find it easier to go on more demanding regimens. These people can select a regimen purely on the basis of its potency. People who have trouble eating or who struggle with One study suggests that about 12% of people weight loss may wish to avoid drugs that can’t be taken miss one dose in the past day, and 11% the day with foods or even conversely, those requiring that before that. Other studies report that nearly they be taken with food. Others who take many other all who failed to achieve and sustain a viral drugs for opportunistic infections or other health con- load below the limit of detection had greatly ditions might avoid HIV drugs that have many drug changed from their prescribed regimens for a interactions. They might even avoid creating regimens month or more. that require taking many more pills. Also, the more There are many reasons for failing to stay HIV drugs you’ve already used, often the fewer choices on your treatment regimen. One study showed you have about what to use next. Thus, often in more that of those who missed one or more doses: advanced disease, your drug history tends to dictate 40% simply forgot what can and can’t be taken. 37% slept through a dose There may not be any perfect regimen for you, but 34% were away from home there are options that are more and less easy to adapt 27% changed their therapy routine to your life. The goal is to select a regimen you can live 22% were busy with — one that fits with who you are and how you live. 13% were sick Once you select a regimen, sticking to it requires plan- 10% experienced side effects ning, support and commitment. 9% were depressed TOLL-FREE NATIONAL HIV/AIDS TREATMENT HOTLINE 1-800-822-7422 LOCAL AND INTERNATIONAL 415-558-9051 MONDAY–FRIDAY 10–4 PACIFIC TIME
  • 3. planning KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM Many things can get Stable access to drugs is critical People differ in their abilities to in the way of taking for their effective use. People can- adhere to their regimens and this your meds properly: not stay on a regimen if they don’t is influenced by lifestyle and other taking care of children or have constant access to their drugs. factors. People dealing with major other family members While it may sound obvious, many life problems like active drug use feeling good people taking HIV meds sometimes or homelessness face difficult chal- find themselves running short of lenges with adherence. But that forget to take the pills one or another drug for a variety doesn’t mean adherence is impos- Saturday and Sunday of reasons. This is often because sible. People with depression are schedules of poor planning. Skipping doses also more likely to have difficulty vacations because you’ve run out of a drug is with adherence. If you suffer from not refilling on time still skipping doses. depression or mental illness and are Some drugs have different stor- considering treatment, consult a no side effects present age requirements than others, so mental health expert as well as your laziness your planning must also address regular doctor. depression these storage needs. This is pri- In reality, only you can decide marily true of Norvir (ritonavir) whether you’re ready and commit- language barriers and Kaletra (lopinavir + ritonavir), ted enough to maintain a steady job concerns which for storage over one or two course of treatment. If you are not moving months respectively need refrigera- ready or not in a position to make a tion. Once storage is addressed, it’s serious effort at adherence, you may hospital stays helpful to put aside a full week’s be better off delaying treatment. drinking or doing drugs 3 supply, in an accessible place, right This doesn’t jeopardize your ability sleeping a lot after getting your drugs, and then to use effective treatment later. In fear of the medicines start using the rest of that supply. contrast, misusing your drugs can This creates an emergency stash jeopardize your future options by should unforeseen circumstances encouraging drug resistance. This cause your basic supply to run can affect entire classes of HIV short. Your stash should be rotated therapy. or replaced once a month to keep it fresh. Some people use a small con- tainer attached to their key chains for a daily backup. Keeping a steady supply of meds requires you to work closely with your doctor and pharmacist. And, when using AIDS Drug Assistance Programs or pharmaceutical com- pany patient assistance programs, even more of the burden falls on you to make sure you order supplies as the program requires and still have a safety net for unforeseen situations. The main point is to always stay at least a week ahead of your needs. © PROJECT INFORM 1375 MISSION STREET SAN FRANCISCO, CA 94103-2621 415-558-8669 FAX 415-558-0684 SUPPORT@PROJECTINFORM.ORG WWW.PROJECTINFORM.ORG
  • 4. { strategies for adherence 4 › Integrate your regimen into your daily routines. Most people find it easier to fit medicines into their lives, rather than scheduling their lives around their KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM medicine. Use a daily activity, one that you do every day without fail like brushing your teeth, to prompt you to take your meds. Take them before the activity; it’s easier to remember. some of the › Count out all your meds in daily doses for a week at a time. Use a pillbox, Mediset or nail organizer from following strategies a hardware store to hold each dose. Setting up a weekly pillbox also needs to become routine. Meds can also and tools have be divided daily by dose and put in separate bags or worked for many canisters marked with the dosage times — some use film canisters. Some people put each canister near the people taking place they’ll take a dose. For example, put the morn- HIV therapy. ing dose by the coffee pot, and evening dose by the TV. › Keep a checklist or diary for doses that you’ve taken with a space to note how you’re feeling. › Use an electronic pillbox or beeping alarm to remind you when to take your meds. The downside of these mechanisms is that the electronic pillboxes are too small and the alarms may be very obvious. TOLL-FREE NATIONAL HIV/AIDS TREATMENT HOTLINE 1-800-822-7422 LOCAL AND INTERNATIONAL 415-558-9051 MONDAY–FRIDAY 10–4 PACIFIC TIME
  • 5. KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM Adherence strategies may not work for everyone. Because of cultural, gender and socio-eco- nomic differences, these suggestions are more appropriate for some people than others. Different issues are more important in some settings than others. For example, some people have a great need for privacy around their HIV status and taking medicines. This places greater emphasis on planning ahead for moments of privacy each day. For people struggling with lack of housing, active drug use or untreated mental health conditions, adherence strategies will often go beyond what we cover here. Still, even in the most challenging situations, people have daily routines that can be used as triggers for taking meds. Adherence strategies can and must vary from person to person. The best way to ensure success is your motivation and commitment to your regimen. It may help to know that many people have accommodated long-term treatment in their lives. People with chronic illnesses have long shown that it can be done. It may take a few tries before you find the approach that works best for you. › Use a daily planner, especially at the start of a new › Keep all your meds with you when you travel. Bag- 5 regimen. Inserting your dosing requirements into a gage can be lost or delayed. planner, as if they were appointments, can be a use- ful reminder. Others use hand-held computers or › Plan ahead for privacy if you need to hide the fact electronic organizers to remind them of daily doses. that you’re taking meds. In this situation, try to find These kinds of devices can be bought for under $50. at least one person with a similar problem with whom you can discuss strategy. You could adjust › Evaluate your regimen about two weeks after you your lunch or break schedule to ensure privacy or keep start it. It may take a few weeks of experimenting water in your bedroom at all times. to figure out how to best schedule your meds with other events in your life. For this reason it may be › Keep a diary. Include whatever is important to you: useful to start a dry run of therapy with small candies, when you took treatment, reason for missed doses, allowing time to adjust your routines before actually how you feel, etc. Keeping a record like this reminds taking the drugs. you how well, or poorly, you’re doing with adherence. › Plan ahead for weekends, vacations or moves. People › Use your support network to remind you of your often miss doses when they’re away from home. For medication needs. Some people have a treatment most, weekends are different from normal weekday buddy who can make daily reminder phone calls. routines, so it’s important to plan ahead. Take into account the changed environment. Will you feel › Set up a support network for your emotional needs. comfortable with your normal routine or will you It’s hard to take treatment and also deal with daily need other strategies? stress, whether it’s taking care of children, working or dealing with illness. © PROJECT INFORM 1375 MISSION STREET SAN FRANCISCO, CA 94103-2621 415-558-8669 FAX 415-558-0684 SUPPORT@PROJECTINFORM.ORG WWW.PROJECTINFORM.ORG
  • 6. building a support network for yourself Setting up a good relationship with your doctor is Similarly, the requirements for Viracept (nelfinavir) critical for maintaining your adherence. Your doctor are often thought to mean that it must be taken with should know the current standards of care for treating food. In fact, the label says only that it should be taken HIV. He or she should spend time with you to fully with food. In some cases, there’s a genuine medical explain the benefits and the challenges of treatment. need to take a drug with or without food. In other If you decide to start treatment, it’s important to cases, like for Videx (didanosine, ddI), taking it with clarify your regimen with your doctor. Knowing what food is recommended only to lessen its side effects or ( ) drugs you’re taking unpleasant aftertaste. and why will help you Some researchers note that people who foster friendly A USEFUL WAY TO better understand the and supportive relationships with medical office staff UNDERSTAND YOUR TREATMENT importance of adher- get better service from them. Bringing another person REGIMEN IS WRITING DOWN INSTRUCTIONS AND REPEATING ence. One survey — a family member, friend or advocate — to appoint- THEM BACK TO YOUR DOCTOR. showed that the vast ments ensures that two people can ask questions and majority of people get information. were unclear of their Ask your doctor to be clear about side effects how regimens only ten to manage them. Being mentally prepared for side minutes after talking with their doctors. Some under- effects can make them easier to manage if they occur. stood the dose but were confused about diet restric- Make a plan with your doctor around what to do if you 6 tions. Others were unclear on the correct doses or the experience a difficult side effect. Knowing that you will timing of them. have timely contact with a doctor may reassure you that KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM A useful way to understand your treatment regimen side effects will be managed well. is writing down instructions and repeating them back It is also important to find out what to do if you miss to your doctor. You can check them again with your a dose. If you do miss one, ask your doctor how you pharmacist when you pick up or order the drugs. Use should handle it — if you should make it up or just take the team approach. Your doctor, nurse, pharmacist the next scheduled one at the usual time. Also, note the and other providers can help you start and maintain missed dose and the reason for missing it. There may effective therapy. be a strategy you can use to avoid missing a future dose. Since adjusting your diet can be difficult at first, it’s If you’re unable to take all the drugs in your regi- important to know what and when you can and cannot men, don’t take a partial dose. Contact your doctor eat. Just as important, try to understand exactly what immediately if you can’t take your full dose for what- is meant by the drug’s diet requirements. For example, ever reason. In this situation it might be necessary for many people interpret them for Crixivan (indinavir) you to stop all of your HIV drugs until you’re able to to mean that it should not be taken with food, which take a complete dose in the regimen again. can be difficult for many people. The actual require- ment is that it shouldn’t be taken with fatty foods. Light snacks and non-fat foods can be taken with the drug without concern. TOLL-FREE NATIONAL HIV/AIDS TREATMENT HOTLINE 1-800-822-7422 LOCAL AND INTERNATIONAL 415-558-9051 MONDAY–FRIDAY 10–4 PACIFIC TIME
  • 7. KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM committing to staying on your therapy Resistance is another reason to adhere to your regimen. resistance becomes a threat. There are no data telling Today’s potent combination therapy has brought new us exactly when resistance begins. There is, however, hope and new challenges to people living with HIV. plenty of evidence that people who are adherent have However, if therapy is not used properly (like skip- better and more sustained anti-HIV responses. While ping doses, taking lower than prescribed doses or not no single episode of a skipped or late dose is likely — taking them on time), drug resistance will probably by itself — to trigger resistance, the more often they develop faster. In this case, the potential benefits of occur, the more likely it is to develop drug resistance. therapy can be lost. In order to prevent drug resistance, it’s important to keep enough drug in your bloodstream 24 hours a day. Each time you miss a dose, the drug blood level falls below the minimum necessary level for several hours. This creates an opportunity for HIV to develop resistance to the drug(s). Moreover, resistance to one drug may result in resistance to other drugs of the same class, called cross- resistance. This is particularly true about NNRTIs. High level resistance to one of the protease inhibitors 7 almost certainly passes on some degree of resistance to almost all the others. There’s little debate about it being difficult to always adhere to today’s complex regimens. It is somewhat less clear how much non-adherence is tolerable before www.projectinform.org i Go online around the clock and get connected to treatment information in the privacy of your own home! © PROJECT INFORM 1375 MISSION STREET SAN FRANCISCO, CA 94103-2621 415-558-8669 FAX 415-558-0684 SUPPORT@PROJECTINFORM.ORG WWW.PROJECTINFORM.ORG
  • 8. a final thought on keeping up with your meds Perhaps the greatest way that adherence to HIV treatments differs from adherence in other chronic illnesses is the lack of immediate symptoms or con- sequences when adherence fails. This lack of a rapid response places more of the burden for adherence on the mind and less on the immediate reaction of the body. A person living with HIV must take a long- term view in order to have a long-term future. Adherence also challenges many of the support systems for people living with HIV. Some doctors have less time to spend educating their patients. As well, most doctors have little or no training in the tools that might help people stay on their treatment effects and drug interactions, and maintain more con- regimens. Sometimes, in order to be fully supported, sistent drug levels in blood. This work is underway for people may need to seek help from others, like treat- some treatments that may require only once-a-day or ment support groups, case managers or treatment even once-a-week dosing. buddies. In the meantime, there are many ideas for what The best long-term solutions for treating HIV — you can do to make the most out of your treatment outside of a cure — must focus on making better and regimen. Consider the ones presented here or come 8 longer-lasting therapies. These include ones that are up with your own solutions that make the most sense easier to use, more easily absorbed, have fewer side for your life. KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM Yes, I want to help Project Inform remain at the forefront of HIV treatment information!  Enclosed is my donation of:  $50  $100  $250  $500  $1,000  Other $__________  Enclosed is my pledge of: $_____ per month for _____ months.  (circle one) In Honor of / In Memory of: _________________________________________________________  Please send me information on making a bequest or planned gift.  I want to help even more by covering the 3% credit card processing fee (we will add this to your total). ADDRESS PAYMENT Circle One: CHECK AMEX MC VISA DISCOVER Dr./Mr. / Ms. / Mrs.  This is a new address. Credit Card # Exp. Date Address City State Zip Print Name Shown on Card Day Phone Email Phone Signature FACT TOLL-FREE NATIONAL HIV/AIDS TREATMENT HOTLINE 1-800-822-7422 LOCAL AND INTERNATIONAL 415-558-9051 MONDAY–FRIDAY 10–4 PACIFIC TIME