Talking to Your Health Care Provider About HIV Treatment Adherence Issues
A Doctor's Office Discussion Guide
September 1, 2011
Keeping up with your HIV medications is your responsibility, but it's not a burden you have to bear alone. One of the most important allies you can have is your own HIV care provider (HCP) -- the person who prescribes your meds, keeps track of your lab tests and is your go-to person on HIV-related medical issues.
We realize that, if you're doing things that hurt your ability to adhere to your HIV treatment, your HCP won't always feel like the easiest person to confide in. How can you tell your doc that you missed your daily pill because you were out partying way too hard to even remember, much less care enough, to take it? How do you admit to a nurse that you're so embarrassed by a diarrhea side effect that you decided to skip a dose in the hope that you wouldn't have to suddenly run out of an important meeting?
It's often not easy to trust. But if you want your treatment to work, you and your health care team have to work as partners. The more your team knows about any problems you might have with adherence -- all of your problems -- the more likely it is that they can help. You don't have to do this alone.
Here's how you can do your part.
Before Non-Adherence Becomes a Problem:
Come prepared. If you have questions about your treatment, or you have specific issues with your HIV meds, write them down whenever they pop into your head. Then bring that list to your next visit with your HCP and make sure you and your HCP take the time to go through it.
Understand your obstacles. Are you trying to juggle parenthood, a job and your health care? Do you not have a steady place to live? Do you use injection drugs? Are you depressed? Do you travel a lot? Do you work strange hours, or more than one job? Do you really, really hate certain side effects? There are so many potential issues in our lives that can ultimately lead us to miss doses. Make a list of yours and share it with your case manager, counselor, support group or HCP. See if others have advice for how you can ensure that these potential obstacles don't prevent you from sticking to your treatment regimen.
Don't turn obstacles into excuses. Hey, life happens. Sometimes you need to miss a doctor's appointment or reschedule a meeting with your case manager. But even if you work a full-time job, care for your kids and live an hour's drive from your doctor, you can still find a way to make it to those appointments. If you know ahead of time what your obstacles are, you can work with your HCP to find a way around them. Maybe your HCP can help arrange for child care; maybe a local HIV organization can help arrange your travel; maybe your boss will be more understanding when you have to take a day off if you give notice as far ahead of time as possible.
Be aggressive, but respectful. HCPs are often busy people who see many patients, and sometimes it may feel as if there's not enough time in a visit to bring up all the things you would like to discuss. But just because your HCP is busy that doesn't mean your concerns are unimportant. Let it be known that there's more you'd like to talk about; even if your HCP doesn't have time right then, you may be able to talk another time (in person or over the phone), exchange emails, or speak to someone else on your health care team. Be persistent about getting your concerns addressed, but try not to make demands, yell or threaten: Remember that, above all, your HCP wants you to stay healthy just as much as you do.
Don't let your pride get in the way. Your HCP isn't there to judge you; your HCP's job is to keep you healthy. Besides, your HCP has probably already seen it all! Sometimes, you've just gotta take a deep breath and tell it like it is. Maybe the diarrhea caused by your meds interferes with your sex life. Maybe you partied a little too hard and now you have no clue where your meds are. It can be awkward, and it can feel embarrassing, but remember: You and your HCP both want to reach the same goal, and that's to keep you healthy and keep your HIV at bay. Unless you tell your HCP what's going on, neither of you will get to that goal.
Bring a friend. Nobody ever said you have to visit your HCP alone. If you feel your concerns aren't being addressed, if you feel intimidated by your HCP, or if you're just a little shy, consider asking a friend, family member, case manager or someone else you trust to come with you on your next visit. That person can either talk on your behalf or provide you with that extra bit of moral support you need.
Sweat the small stuff. No, you don't want to obsess too much over little things. But little things have a tendency to become big things if we don't deal with them. And besides, how can you know whether it's truly a "little thing" unless you've talked with your HCP about it?
Remember that doctors, nurses and pharmacists are people too. Yes, they have years of medical training under their belt, and they probably know a lot more than you about HIV itself, HIV meds, side effects and other clinical issues. But that doesn't make them perfect: HCPs can make mistakes or fail to notice important issues that may hurt your ability to take your meds. If you think your HCP slipped up, don't be afraid to speak up.
Accept that you won't be perfect. Your HCP sure as heck isn't perfect, so why should you expect yourself to be? Be realistic about what you can and can't do, and don't beat yourself up with guilt if you miss a dose. Just take a moment to understand why it happened, talk to your case manager or your HCP about it, and do what you need to do to reduce the chances that you'll miss another dose for the same reason.
If Your Treatment Fails:
Talk about it. If you develop resistance to an HIV medication and have to switch meds, be prepared for a frank talk with your HCP about whether you missed any doses of your meds -- and why you missed those doses.
Be honest about why you missed doses. If poor adherence caused resistance to occur, then it could cause resistance to occur again with a future regimen -- and it's naive to think that it won't, unless you can openly talk about and deal with the reasons behind your missed doses.
Remember, it's not necessarily your fault. Missed doses aren't the only reason HIV treatment stops working. The failure could be the HCP's: Your HCP may have failed to notice pre-existing drug resistance, potential drug interactions or other important clinical issues that can cause your meds to become less effective. These possibilities should be part of an open discussion with your HCP about why your treatment failed, so you both can be sure your next regimen doesn't falter due to the same problems.
Get ready for the next regimen. It's very important to understand the reasons why your last set of HIV meds stopped working. But ultimately, there's a time to stop feeling guilty over the past and start looking toward the future. Look back over all the tips in this article, reset yourself, and commit yourself to making your next regimen the one that lasts.
If you need to change your HCP, do it. Sometimes you and your HCP can have such an uncomfortable relationship that it's beyond fixing. Or maybe some of your obstacles to adherence are due to your relationship with your HCP -- for instance, something could have happened that caused you to stop trusting your HCP, or maybe you just feel as if you live too far away to get the care you need.
If these are problems you've tried to address by using many of the tips we listed above, but you still don't feel comfortable with your HCP, always remember that you can go elsewhere. Talk to local HIV service organizations and support groups to get recommendations for other nearby HCPs. (Our ASO Finder can help with that.) Use tools such as AAHIVM's provider search to find an accredited HCP near you. Don't settle for a bad doctor-patient relationship if it's just not working out.
Keeping up with your HIV meds is so much easier when you have an HCP you can trust; someone you can be open and honest with about your concerns and your problems. The tips above can help, but above all else, the most important piece of this puzzle is you. HIV treatment is literally a matter of life and death, and you have to be ready for the commitment -- you have to want it to work.
If you're not 100 percent on board with the idea of taking meds every day, talk to someone who can help you get there: your HCP, a case manager, a local HIV support group, someone you can trust. Millions of people successfully take their HIV meds despite facing huge obstacles; you can find a way to make this work.
Myles Helfand is the editorial director of TheBody.com and TheBodyPRO.com.
Ben Young, M.D., Ph.D., is the executive medical director of Rocky Mountain CARES, a comprehensive nonprofit HIV service organization in Denver, Colo. Dr. Young is also a regular contributor in our "Ask the Experts" forum on Choosing Your Meds.
Copyright © 2011 The HealthCentral Network, Inc. All rights reserved.
This article was provided by TheBody.com.
Comment by: Frederick Wright
(Palm Spring Ca)
Wed., Oct. 5, 2011 at 9:41 am EDT
I think all the concepts are great and the honest part with your HCP is most important, however since the science is so focused on taking ones pills as prescribed, then it can make it very hard for some to be honest with their HCP. I have some HCP yell at me and start counting my pills and suggestion that they are going to cut me off from self prescribed compliance of 5 days on and 2 days off or 6 months on and 6 months off. When it comes down to taking ones pills the patient is the one who aproves the health care plan and Doctors need to get over it when a patient tweeks their time frame of pills and healthcare. Doctors must understand that if they want honesty in communication then they must start with a statment of truth like as a Doctor I am practing my art of medicine and I am human and I am expermenting on you for this science of HIV is new and many treatments are unproven. Patients need to be honest and we need the Doctors to be honest about the experimenting. I have been off my pills for 6 months or so and have done this off and on for about 20 years and truly not sure if the science behind mutation or resistance has any value for me. O course ever one is different and then one might ask, Why are most people on fix dose combination; When everone is different?".
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