Taking HIV medicines correctly (adherence)

Updated 7/21/14

What is adherence?

"Medication adherence may be defined as the extent to which a patient takes a medication in the way intended by the health care provider." HIV InSite, University of California San Francisco. Out of all the sections you will read on this website, there is no topic more important than this. Adherence will determine whether you live a long healthy life, or whether your life will be cut short due to AIDS.  

So, taking your medicine correctly, as it is recommended to be taken,  is called adherence.  Taking your medicine incorrectly is called “non-adherence.” Nearly all medical providers use these terms to describe their particular patient’s habit of taking their medicines correctly or incorrectly.  In HIV clinics, adherence, or non-adherence, is the most important word in your medical chart.

Why is adherence important?

Adherence to the HIV medicines predicts your future success in suppressing the virus and repairing your immune system.  An undetectable viral load of less than 50 is what is needed to keep the virus from multiplying and to replace your CD4 cell count.  Remember, you want your CD4 to be above 400.  Experts think that patients must be around 95% adherent to their daily medicine regimen in order to stop HIV from making new virus.  That means that you can miss no more than 1 dose a month of a once a day medicine combination (usually 3 drugs) and no more than 3 doses a month of a medicine combination that you take twice a day.   Missing more doses will lead to your particular medicines “failing” (see “resistance” in the next chapter) and you will have to switch your medicines to a new combination.  

The average rate of adherence is around 70%.  Not 95%.  That's missing around 9 out of 30 doses of once daily medicine every month.  

No one really knows the amount of medicine you can “safely” miss and keep the virus from multiplying.  This depends on the particular drug combination, your medicine “cocktail,” so to speak.  Just like the bar tender that puts lots of tequila in your margarita,  some cocktails are stronger than others.  Also, everyone handles their cocktail differently--some people can feel drunk on two drinks and some need six for a good buzz.  Likewise, your body may not handle your cocktail like someone else who is taking the exact same cocktail.  

Adherence tends to decrease over time.  It is not unusual for the person that starts taking their new HIV drug cocktail with lots of enthusiasm and never missing a medicine dose, to later become lax about missing a dose now and then.  It’s just human nature.  However, given the life or death consequences of a relaxed attitude about taking your medicine cocktail, I would urge you to have a plan in place so that you never let your guard down.  Your enemy, the virus, is just waiting for you to give it a break from the medicine.  

This is not your Grandma’s medication.

Perhaps your grandmother takes a blood pressure pill.   Grandma is famous for forgetting to take her pill.  One day, you are visiting her and she complains she has a headache.  No, she hasn’t taken her blood pressure pill in a week or so, and can’t even find the pills.   You gently remind her that she’s headed for a stroke and you tear the house apart looking for the pills, and later find them deep down in the sofa seat cushions.  Grandma gives you a big hug and takes her medicine.   Within an hour, Grandma’s blood pressure is normal, her headache is gone, and she is smiling and happy as she serves you a big slice of her homemade chocolate cake she baked just for you.  Ah, another disaster prevented. 

The reason for the above story is to warn you that the HIV medicines are not like blood pressure pills, or diabetes pills, or any other pills you have heard of.  The HIV medicines must be taken faithfully every day.  Unlike Grandma’s blood pressure pill, if you continuously miss doses of your HIV medicines, the medicines may stop working.  

Anything less than 95% adherence to the HIV medicine cocktail will lead to virus “resistance”.  Even with taking the medicines correctly 80 to 90% of the time, the virus  will learn how to “go around” the medicine, and the virus will mutate, or change it’s form.  In this case, you are better off not taking the medicine at all.  What?  Why, isn’t it better to take a little bit of medicine than none at all?  No, for the reasons I just gave you, if you can’t take the medicine right, do not take it at all.  Not only that, you can give this HIV medicine resistance to your sex partner.  If your partner gets infected with HIV from you and you have virus resistance, you will give him/her your resistance.  HIV providers see this all the time--a person with HIV, who has never taken medicines, already has resistance, through no fault of his/her own.  The reason for this is that they got the resistance from the person who gave them the virus.  

The strange thing is, the person who takes the drugs correctly just 20-30% of the time is better off, in terms of getting resistance, than the person that takes it right 80-90% of the time.  This is very important for you to grasp.  In other words, a person with good adherence 80-90% is doing him/herself more harm than a person with poor adherence, say 20 to 30%. 

Factors that affect adherence

Experts believe that these are the factors that affect whether or not a person takes their medicines correctly:

• How hard the medicines are to take--How many pills? How many times of day do I have to take them?  Do I need to eat with the medicines?
• A substance abuse problem--alcohol, street drugs, or addictive prescription medicines like Xanax, Vicodin, Lorcet, sleeping pills, etc.
• Untreated psychiatric disorders, like depression, anxiety, bipolar disorder, ADHD, personality disorder, etc.
• Side effects, like diarrhea, nausea, headache, drowsiness, bad dreams, etc.
• Not liking or trusting your doctor, nurse practitioner, or physician assistant. 
• A busy life with no set schedule for meals, bedtime, waking, etc.
• Not knowing or understanding how HIV affects you.
• “Cognition” problems, or problems with awareness, perception, reasoning, and judgement; however, in my experience, I have taken care of several HIV positive people with mental disabilities.  All of them were excellent at taking their medicines and did quite well.  
• Are you keeping your HIV a secret?  If so, keeping the virus a secret will have an impact on your health.  People need social support--either friends or family to share their thoughts and feelings with.  
• Embarrassment about their diagnosis.  Sadly, there is still lots of social stigma out there, regarding this disease.  One patient, a 68 year old grandmother, has only told one of her daughters about her diagnosis, and absolutely will not tell any of her church group friends that she has HIV.  This is not good because the other elderly women out there need to know that they are all vulnerable to HIV and without hearing from their friend about her HIV, they will continue to think they are not at risk for getting HIV.

As interesting as these factors are, they are nothing compared to the excuses I hear, on a daily basis.   Here are the most common excuses:

1. “Those medicines are toxic.”  I wish I had a nickel for every time I heard this one.  Interestingly, the person never thinks of the virus as toxic. 
2. “There are too many pills.”  Most HIV cocktails contain anywhere from one pill a day to as many as 10 to 12 pills a day.  The people taking the most pills are those people who did not take their medicines correctly in the past.  In other words, they were non-adherent.  
3. “I feel better off the medicines than when I take the medicine.”  Sadly, this is true in some cases.  I have seen some patients with a CD4 of 1 or 2 and they feel great--no symptoms at all.  Then they start the medicine and they have an upset stomach or another symptom.  They are not willing to give themselves some time to get used to the medicine so they stop it. 
4. “I gained weight on the medicine.”  This is very common.  Wasting down to skin and bones is common with advanced HIV disease (AIDS).  Once the person starts taking the medicine, this wasting reverses and the patient regains their weight.  In some cases, young women who were once obese (or fat), now have advanced AIDS and look great.  For the first time in their young lives, they have a good figure and they are getting attention from men.  They start the HIV medicines and up goes their weight.  You guessed it.  They stop the HIV medicines.  Several years ago, I remember hearing on a TV show that a survey had been taken and most people would rather be hit by a truck than to be obese.  I guess not taking your HIV medicine can be compared to being hit by a truck.  
5. “I forgot.”
6. “I went out of town.”
7. “I got locked up in jail.”  I work in a large city so I hear this one all the time.  
8. “My wife locked me out of the house and my medicines are in the house.”
9. “I fell asleep.”  
10. “My car got broken into (or stolen) and the medicines were in the car.
11. “I left my HIV medicines in the hot car and one of them melted.”  One of the HIV medicines must be kept in the fridge or at least room temperature.  If the medicine gets warm, it will melt together into one big useless lump.  (I don't hear this excuse any more because this medicine is now in a pill form.)
12. “I got robbed on the bus and they took my medicines.”  Where is your police report?
13. “The pharmacy refused to give me my refills.”
14. “I had no refills and you refused to give me any more.”  That’s true.  If patients continuously miss their appointments, I sometimes make a decision to not give them any refills until I see them in the clinic. 
15. “The pharmacy wanted a co-pay and I didn’t have it.”
16. “The pharmacy was closed on the weekend when I needed my refill.”
17. “I usually take my medicines at 10 o’clock but I was out all day so I just had to skip that day’s dose.”
18. “I was out of the country.”
19. “They got lost in the mail.”
20. “I thought you told me to stop taking it.”
21. “I ran out of one medicine, so I stopped them all, just like you said.”  That is true--you should always take all the drugs that make up your cocktail.  However, why did you run out of just one medicine??
22. “I don’t think I need the pills.”
23. “I was staying with my relatives and I didn’t want them to see me taking pills; so, I left the pills at home.”
24. “I was too busy.”
25. “My ________ died.”  
26. “I ate and I had to take the pills on an empty stomach, so I couldn’t take the pills.
27. “I was out drinking with my buddies and I didn’t want to mix alcohol with the pills, so I skipped the pills.”  No one ever skips the alcohol.
28. “I was confused about how you said to take the pills.”  
29. "I was sick."  Surprisingly, I hear this one a lot.  By sick, the patient usually means a respiratory infection, like a cold or sinus infection, and not nausea or vomiting. 

Most of these seem like pretty good excuses until you really begin to examine them.  Whenever I hear one of these excuses, I confront the patient.  I usually do not accept the excuse at face value. I ask the patient to think about why they missed and take steps to prevent this same thing from happening again.  Sometimes, the solution is just to buy a pill box, or a key chain where you can keep one to two day's stash of medicine, or setting a reminder on your cell phone.

However, many times, these excuses are not real excuses.  They seem legitimate, but if you really question the patient, you may get to the root of the problem.  Some patients have a love-hate relationship with their HIV medicines.  Deep down, they hate taking the medicine, and they have never made peace with this fact. Once you help the patient see this, the patient has a new level of awareness of how they are sabotaging their health, and most will change their behavior.  

The HIV medicines are life-saving.  Without the medicine, you most likely will die years (even decades) sooner than if you take the medicines.  Since this is a life-or-death situation, your once daily decisions about taking your medicine are the most important decisions you will make in your entire life.  It’s a matter of putting your medicines at the top of your daily to-do list, rather than at the bottom, as many people do.  

Even though many patients tell me their medicines are their highest priority, their actions tell me otherwise.  If you call in your refill on the day you have one pill left, this tells me that your medicines are a low priority.  If you take a trip out of town without thinking about your medicine refills, your medicines are a low priority.  If you are not guarding your medicines while you are on the bus, your medicines are a low priority.  If drinking beer comes before your medicines, your medicines are a low priority.  Need I say more?

How to Measure Adherence

There’s no perfect way to measure adherence.  The best way is to ask the patient, “Are you missing any doses of your medicines?”  Surprisingly, many patients who, as a general rule, are honest human beings, become like little children when asked this question.  Being afraid that I may start to scream at them, beat them up, frown at them, or hurt them in other ways, the patient says, “No, I’m not missing my medications.  Or maybe just once....”  

It’s not unusual for patients to swear up and down that they are taking their medicines correctly, even though their CD4 count is dropping, and their viral load is up in the hundreds of thousands.   I will go in the exam room with the pharmacy records showing that the patient is picking up their medicine every three months, instead of every month, like they should.     Even while looking at the records, the patient will insist that this is not correct.  They are picking the medicine up every month, they say.  They may say they have a “stash built up”, or their HIV positive friend died and left them their stash (I don’t hear this one too much now that the HIV drugs work well and there are very few patient deaths), or that the pharmacy records are incorrect.  The end result is that the patient never wants admits to non-adherence.  

The patient’s downright refusal to admit they are missing their medicines in the face of overwhelming evidence that they are, has led me to only one explanation: the Christian biblical parable of the loaves of bread and the fish.  Christians will remember the story that one day, God’s son, Jesus, wished to feed his hungry crowd of followers, but his disciples were only able to gather up 7 loaves of bread and 2 fish to feed more than 5,000 men!  Miraculously, Jesus was able to feed the entire crowd with this amount of food.  After everyone ate their fill, there were 12 baskets of food left over.   Ah, so it is with my patients.  They are able somehow, to make a bottle of 30 pills last for 90 days!  A miracle, truly.

Other ways providers measure adherence include looking at the pill bottles and counting the pills, reviewing pharmacy records, both of which are subject to error if the patient doesn’t bring the pill bottles. (They usually don’t)

Adherence Levels Necessary to Achieve Undetectable Virus
Percent Adherence	Doses Missed--Once Daily Regimen	Doses Missed--Twice Daily Regimen
95-100	1	3
90	3	6
80	6	12
70	9	18
60	12	24
50	15	30
40	18	36
30	21	42
20	24	48
10	27	54

Green levels of taking medicine are best; yellow levels are not as good; red levels are downright bad. 
Notice that the most harm is done with around 50% adherence levels. Better not to take medicine at all than to take it at 
these levels.