Adherence (Additional PLUS Reading Materials)


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Adherence (Additional PLUS Reading Materials)

  1. 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 di cult under the best of conditions. Even doc- tors and nurses nd it di cult 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 speci c timing and diet restrictions. en, 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. erefore, 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 e ects 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 e ects, it can help you nd 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 rst 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 rst place. Drugs can di er 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. is › how many pills per day are needed, can result in many things, including no real therapeutic › what other drugs or complementary therapies they can bene t, possible disease progression, development of and cannot be used with, resistance, and unnecessary side e ects. Giving careful thought to what bene ts you hope › their side e ects and how they make a person feel, and to get from treatment, how you’ll evaluate the bene t, › 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. 2. Similarly, people di er 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 di erent 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 di cult; 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 nd 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. is may make it easier to t therapy into changing routines. Others, whose time is tightlyKEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM structured by work, might nd it easier to go on more demanding regimens. ese 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. ey 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, o en the fewer choices on your treatment regimen. One study showed you have about what to use next. us, o en 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 ere 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. e goal is to select a regimen you can live 22% were busy with — one that ts 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. 3. planning KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM Many things can getStable access to drugs is critical People di er in their abilities to in the way of takingfor their e ective use. People can- adhere to their regimens and this your meds properly:not stay on a regimen if they don’t is in uenced by lifestyle and other taking care of children orhave constant access to their drugs. factors. People dealing with major other family membersWhile it may sound obvious, many life problems like active drug use feeling goodpeople taking HIV meds sometimes or homelessness face di cult chal- nd themselves running short of lenges with adherence. But that forget to take the pillsone or another drug for a variety doesn’t mean adherence is impos- Saturday and Sundayof reasons. This is often because sible. People with depression are schedulesof poor planning. Skipping doses also more likely to have di culty vacationsbecause you’ve run out of a drug is with adherence. If you su er from not refilling on timestill skipping doses. depression or mental illness and are Some drugs have di erent stor- considering treatment, consult a no side effects presentage requirements than others, so mental health expert as well as your lazinessyour planning must also address regular doctor. depressionthese storage needs. This is pri- In reality, only you can decidemarily true of Norvir (ritonavir) whether you’re ready and commit- language barriersand Kaletra (lopinavir + ritonavir), ted enough to maintain a steady job concernswhich for storage over one or two course of treatment. If you are not movingmonths respectively need refrigera- ready or not in a position to make ation. Once storage is addressed, it’s serious e ort at adherence, you may hospital stayshelpful to put aside a full week’s be better off delaying treatment. drinking or doing drugs 3supply, in an accessible place, right is doesn’t jeopardize your ability sleeping a lota er getting your drugs, and then to use e ective treatment later. In fear of the medicinesstart using the rest of that supply. contrast, misusing your drugs canThis creates an emergency stash jeopardize your future options byshould unforeseen circumstances encouraging drug resistance. iscause your basic supply to run can affect entire classes of HIVshort. Your stash should be rotated therapy.or replaced once a month to keep itfresh. Some people use a small con-tainer attached to their key chainsfor a daily backup. Keeping a steady supply of medsrequires you to work closely withyour doctor and pharmacist. And,when using AIDS Drug AssistancePrograms or pharmaceutical com-pany patient assistance programs,even more of the burden falls on youto make sure you order supplies asthe program requires and still have asafety net for unforeseen situations. e main point is to always stay atleast 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. 4. { strategies for adherence 4 › Integrate your regimen into your daily routines. Most people nd it easier to t medicines into their lives, rather than scheduling their lives around theirKEEPING 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 lm 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 co ee 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. e 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. 5. KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORMAdherence 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 andtaking medicines. This places greater emphasis on planning ahead for moments of privacyeach day. For people struggling with lack of housing, active drug use or untreated mentalhealth 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 astriggers for taking meds. Adherence strategies can and must vary from person to person. The best way to ensuresuccess is your motivation and commitment to your regimen. It may help to know thatmany people have accommodated long-term treatment in their lives. People with chronicillnesses have long shown that it can be done. It may take a few tries before you find theapproach 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 nd ese 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 a er 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 gure 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 o en miss doses when they’re away from home. For medication needs. Some people have a treatment most, weekends are di erent 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. 6. building a support network for yourself Setting up a good relationship with your doctor is Similarly, the requirements for Viracept (nel navir) critical for maintaining your adherence. Your doctor are o en 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 bene ts 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 e ects or ( ) drugs you’re taking unpleasant a ertaste. 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 o ce sta 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 e ects how regimens only ten to manage them. Being mentally prepared for side minutes a er talking with their doctors. Some under- e ects 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 di cult side e ect. Knowing that you will timing of them. have timely contact with a doctor may reassure you thatKEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORM A useful way to understand your treatment regimen side e ects will be managed well. is writing down instructions and repeating them back It is also important to nd 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. ere may e ective therapy. be a strategy you can use to avoid missing a future dose. Since adjusting your diet can be di cult at rst, 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 di cult for many people. e 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. 7. KEEPING UP WITH YOUR MEDS . MAY 2008 . PROJECT INFORMcommitting to staying on your therapyResistance is another reason to adhere to your regimen. resistance becomes a threat. ere are no data tellingToday’s potent combination therapy has brought new us exactly when resistance begins. ere is, however,hope and new challenges to people living with HIV. plenty of evidence that people who are adherent haveHowever, if therapy is not used properly (like skip- better and more sustained anti-HIV responses. Whileping 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 o en theydevelop faster. In this case, the potential bene ts of occur, the more likely it is to develop drug resistance.therapy can be lost. In order to prevent drug resistance, it’s importantto keep enough drug in your bloodstream 24 hours aday. Each time you miss a dose, the drug blood levelfalls below the minimum necessary level for severalhours. is creates an opportunity for HIV to developresistance to the drug(s). Moreover, resistance to one drug may result inresistance to other drugs of the same class, called cross-resistance. is is particularly true about NNRTIs.High level resistance to one of the protease inhibitors 7almost certainly passes on some degree of resistanceto almost all the others. ere’s little debate about it being di cult to alwaysadhere to today’s complex regimens. It is somewhatless clear how much non-adherence is tolerable before 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. 8. a final thought on keeping up with your meds Perhaps the greatest way that adherence to HIV treatments di ers from adherence in other chronic illnesses is the lack of immediate symptoms or con- sequences when adherence fails. is 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 e ects and drug interactions, and maintain more con- regimens. Sometimes, in order to be fully supported, sistent drug levels in blood. is 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 e 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. ese 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 gi .  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