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.

 

When to start HIV medicines

The following section needs updated; however, nearly all of the content remains true today; I plan to update this section in the near future.

There’s no mystery about when to start HIV medicines.  Medical providers know exactly when you should start HIV medicines, just by looking at your medical information.  However, there is a bit more to it than that.  If you are not ready, willing, and able to start HIV medicines, all the good medicine in the world will not work.  Also, if your CD4 count is 2, you and your medical provider will have different thoughts and feelings about your beginning medicine than if your CD4 count is 350.  

Are you homeless?  Do you take street drugs or have a drinking problem?  Is your current living situation stable? Do you have major legal or financial problems?  Are you having major relationship difficulties?  Do you have a mental disorder that you are ignoring, like depression, attention deficit hyperactivity disorder, bipolar, or anxiety issues?  If you answer yes to any of these questions and if your CD4 count is more than 200, you may want to address these issues before starting medicines.  Once begun, you must take the HIV medicines faithfully for the rest of your life.   The problems listed above have a way of making it difficult to take the medicine without missing doses so it’s best to take care of these right now.  It may mean that you go to drug or alcohol rehab, see a psychiatrist, find a job, move in with a relative, serve your jail time, break up with an abusive partner, stop drinking, etc., so that these issues will not get in the way of your taking your medicines correctly.  I will write much more about this in the next chapter.  

Must Know

The goal of taking the HIV medicines is continued, daily suppression of the virus so that it is unable to multiply or cause much damage--a viral load of less than 50 is what you are aiming for.  Every day, every medical visit--an undetectable viral load.  One drug company has an ad that says “Detectable is unacceptable.”  That’s a great slogan to remember.  There is only one way to achieve and stay undetectable.  Take the medicines, as directed, every day without missing doses.  

The other goal of taking the HIV medicine is to repair the immune system.  Keeping HIV suppressed will allow your CD4 T-lymphoctes to be replaced and your immune system to be restored to a healthy level.     

The box at the end of this chapter contains the information your provider uses to figure out if you “medically” need to start HIV medicine.  I have placed the list in order of importance--Those conditions at the top of the list are more important than the conditions at the bottom of the list.

Nowadays, there are more HIV medicines to choose from, simpler medicine regimens (most “regimens” contain at least 3 HIV medicines), more effective medicines, and medicines with much less side effects.  I won’t say taking the HIV medications are a breeze, but compared to the choices we had more than ten years ago, these newer HIV medicine combinations are much better, overall. 

HIV can never be cured.  It can only be suppressed. Think of the medicines as giant hand slamming down on top of the millions of virus particles.  As soon as you let up the pressure on your hand and start raising your hand off the table (not taking your medicine), the virus becomes active again, your CD4 count will drop, and your viral load will go from undetectable to detectable.   

The virus will never be your friend, but your enemy.  However, like all enemies, you must have respect for this enemy and learn everything you can to triumph over this tiny organism that wants to take your life from you.

Reasons to start HIV medicine earlier rather than later include:

• Increasing research evidence that HIV causes problems with just about every organ system in the body--heart, blood vessels, nerves, liver, kidneys, skin, etc. 
• A weaker immune system makes it more likely that you may get cancer. 
• You are less likely to transmit the virus to others, if your viral load is undetectable.  However, if you are on medicines, but taking the medicines incorrectly and your virus is not undetectable, you may transmit “resistant” virus to others (see chapter on HIV resistance). 

Reasons to delay starting the HIV medicines include:

• The great effect taking the medicines will have on the rest of your life.
• The inconvenience of taking daily (or twice daily) medicines for the rest of your life.
• Side effects associated with the medicines--not as big a factor as in earlier years.
• Medical problems that arise from taking the medicines--allergic reactions, changes in your body fat, increased problem regulating blood sugar, cholesterol and triglyceride problems, peripheral neuropathy (foot and lower leg pain), etc. 
• HIV medicine “resistance” if you start the medicines and don’t take them correctly.  Development of resistant HIV means you will not have as many HIV medicine choices in your future.  
• Perhaps there are long-term effects of these medicines that scientists do not know about yet. 
• Because these HIV drug combinations (the “cocktails” have been used for only 13 years or so, we don’t yet know if they will continue to work for the next 10 to 20 years.
• Inability to commit to taking medicines for life.  This is a marriage, in every sense of the word.  You must first be attracted to, then fall in love, then commit to these tiny colorful objects for life.  There are some possibilities of a “separation”--side effects, allergies, etc., but you must recommit to another pill/partner immediately, work out your side effects/differences and continue your commitment for life.  “Divorce” is not an option. (There is one exception--see the chapter on pregnancy.  Yes, some pregnant ladies can get a “divorce” from the medicines after they give birth.)  

Vaccines and HIV

The way a vaccine works is: first, a weak, live or dead, virus or bacteria is injected into the body and the body will make “antibodies”--a white blood cell that can fight the foreign virus or bacteria--against this substance.  These antibodies willprotect the person from getting the virus or bacteria in the future.  

In those with HIV, the body is not able to make antibodies as good as it could without HIV.  However, that doesn’t mean one should not receive the vaccine.  Vaccinating those with HIV is perhaps even more important than vaccinating those without the virus, since any extra infections will place an extra demand on the body in addition to the HIV infection.  Vaccinations should be given as soon as possible after HIV is diagnosed.  

In general, giving vaccinations (immunizations) to those with HIV may cause an increase in the amount of virus in the blood.  This may last for up to 6 weeks and is not important.  Only “dead” virus or “dead” bacteria vaccines should be given; “live” weakened virus or bacteria vaccines are not allowed (the only exception is the measles, mumps, and rubella (MMR) vaccine.  The following table contains the names of the vaccines, when they are given, whether “booster” doses are needed, and any comments about the specific vaccine.  

mims.co.uk

Vaccinations in those with HIV
Name of Vaccine	Abbreviation	When given	Booster	Comments
Tetanus/diphtheria	Td	Infant, childhood, adult	Every ten years; if wounded, give after 5 years	Injection drug users at more risk to get tetanus
Pneumococcal	Pneumovax	Childhood or at first visit to HIV clinic	In adults, give one booster 5-6 years after 1st dose; consider re-vaccinating after CD4 moves above 200.
Influenza	Flu shot	Every flu season	Every year
Hepatitis A	Hep A or HAV	Usualy given in infancy or childhood; if not immune, give at first visit, then 6-12months after 1st shot	Can tell if vaccine worked by checking for the Hepatitis A antibody (Hep A Ab) in blood.	Injection drug users, men who have sex with men, international travelers, hemophiliacs at more risk to get Hepatitis A.
Hepatitis B	Hep B or HBV	If not immune, give vaccine at first visit, then in one month, then 6 months after 1st shot	Booster required only if shot not effective--must check Hepatitis B surface Antibody (HBsAb).	If Hepatitis B surface antibody less than 10, must get one or more doses of vaccine
Optional vaccinations that may be given in those with HIV
Measles, Mumps, and Rubella	MMR	At age 1 year or in an adult with no history of getting vaccine	One booster is given 1 month after 1st shot.	Do not give to those with CD4 count less than 200.
Meningococcal	MCV4 or MPSV4	All children age 11-12 or before high school; Adults less than 55 years old; also, children 2-10 in high risk groups	Consider a booster after 5 years if still at high risk	High risk: College students living in dormitories; no spleen; certain diseases; military; certain travelers
Human Papilloma Virus	HPV	females age 11-12--dose #1; dose #2 two months after first dose, then dose #3 six months after first dose.	No
Polio	eIPV (enhanced potency inactivated polio vaccine	Adults 18 or older--2 doses		Give only to those traveling to developing countries or to those who have been exposed to people who have just receive the oral polio vaccine
Varicella Zoster Virus	VZV or shingles			Do not give in those with CD4 less than 200 or in those with a history of chicken pox. Do not come into contact with someone who has VZV or shingles. Contact your health care provider if you do.)

The following vaccines should not be given to someone with HIV:

1. Oral polio vaccine (OPV)
2. Haemophilus influenzae type b conjugate vaccine (HbCV)
3. Varicella Zoster (shingles); this is a “live” virus vaccine
4. Smallpox (Vaccinia): also a “live” virus vaccine
5. Rotavirus: also a “live” virus vaccine
6. Bacillus Calmette-Guerin Vaccine (BCG): a “live”, weakened vaccine
7. Live, attenuated (weakened) cold-adapted vaccine (LAIV, FluMist)

HIV Tests

For whatever reason, you have decided to get an HIV test.  Your friend coaxed you, you’ve been feeling tired lately, you had sex with Bob after just the second date (he's now long gone), or (horrors) you have received notification from the health department that a recent sexual partner has tested positive for a sexually transmitted disease and named you on his sexual contact list.  Perhaps you have had a nagging feeling for a long time that you may be HIV positive but just didn’t want to face it. 

Maybe you were offered a test at your recent annual physical exam.  In 2006, the Center for Disease Control (CDC) recommended routine testing for all adults age 13 to 64.  This is a far cry from the olden days when it was necessary to be counseled both before and after testing and to sign an informed consent.  Now you may be told that an HIV test will be done, unless you decline the test.  Note, some states have been slow in following this CDC recommendation.  

I believe that everyone who is having sexual relations--oral, vaginal, or anal,  should be tested every year or so--everyone.  That includes married people.  I can’t tell you how many times I have met with patients and friends who thought they were in a faithful relationship with their sex partner only to find out their partner was not being loyal to them.

You may have taken your HIV test at home.  I am unsure how often these tests are used as I have yet to see a patient that used one of these tests to find out if they have HIV.  Be aware: the home tests are not approved by the Food and Drug administration and the results may not be accurate.  Many clinics are now using rapid HIV tests--by rapid, I mean that the results are available the same day.  The HIV test may involve a test of these substances: saliva, urine, finger-stick blood, or blood through puncturing a vein.  

Nearly all HIV tests measure special HIV "antibodies" that the body makes upon encountering HIV.  It usually takes the human body 2-8 weeks to develop antibodies against the new HIV in one's body--the average is around 25 days.  Some people (3 out of every 100) can take longer than three months, and up to 6 months, to test positive.  The time between getting the HIV infection and the HIV antibodies showing up in the blood is called the "window period." 

All these rapid tests must be backed up by an ELISA test. The ELISA test is 99% reliable in detecting HIV antibodies.  If the ELISA test is positive, your blood will be sent for a confirmatory test called the Western Blot.  In other words if Elisa says you are positive, she asks “Western Blot,” just to be sure.  

A more expensive test, called the HIV RNA test (or HIV viral load test) may be done.  This test measures the amount of actual virus in the blood.  Still, it takes 9-11 days after the infection for this test to turn positive.  There is no way to determine infection earlier than this.  

Nearly all pregnant women are tested upon first getting OB care, then again further along in the pregnancy.  This is so that the woman may begin treatment immediately if she is HIV positive.  She will continue HIV drugs through her entire pregnancy and during delivery.  Chances are, with treatment, her baby will be born without HIV.  

babyclipart.net

The First HIV Clinic Visit

Before the first visit

After you are diagnosed with HIV, you will be referred to an HIV specialist.  These are infectious disease doctors, many of them who practice only with HIV patients.  This HIV specialist practice may also include nurse practitioners and physician assistants, who work closely with the HIV infectious disease doctors to provide you with the type of health care that you need.   

If you are not referred to an HIV specialist practice, do everything you can to be referred to one.  HIV specialists see large amounts of patients and know the latest HIV research; they know how to diagnose the complications of HIV disease, and have vast experience with the HIV drugs.  It is not possible to keep up with all of this if a physician sees only several HIV+ patients in their practice.  

Before you see the HIV specialist, you may be interviewed by a nurse or a social worker who works with the HIV specialist.  You will be sent for lab work and the results should be ready by the time you see your health care provider.  The following box contains a list of all the blood tests that will be ordered and the explanation for why the tests are needed.

   

Name of test	Reason for test
HIV antibody tests: ELISA and then, if positive, the Western Blot	Verify true HIV infection.  Some providers will insist on their own HIV test and not take an outside record of a positive test.
CD4 T-cell count	Find out the “stage” of your HIV infection.  This test answers the question of whether person has AIDS.
Plasma HIV RNA (Viral Load)	Find out how much HIV (virus) is in your blood.
HIV Genotype	Find out if your particular virus has “resistance” to the HIV medicines.  In other words, will all the medicines work?  If not, which ones won’t work?
Syphilis: RPR or VDRL	There are high rates of syphilis in HIV+ patients. Syphilis must be treated. Syphilis may be much worse in HIV+ person.
CBC (Complete Blood Count)	Find out if you have low red blood cells (anemia), low white blood cells (leukopenia), or low platelets (thrombocytopenia).  All are common in HIV+. The white blood count is needed to find out CD4 count. The HIV drug Zidovudine (also called Retrovir and abbreviated AZT) may cause anemia so you will want to avoid this drug if you have anemia.
Electrolytes	Check sodium (Na) and potassium (K) level
Blood urea nitrogen (BUN); creatinine (Cr); urinalysis (UA)	Check kidney function.  Kidney function can be affected by high blood pressure, cocaine use, diabetes, HIV itself, and some HIV medicines.  Some HIV medications must be adjusted if your kidney function is not good.
Transaminases (liver enzymes)--alanine transaminase (ALT), aspartate transaminase (AST), total bilirubin, and alkaline phosphatase	Find out whether your liver is functioning normal.  If your liver function is not good, some HIV medicines may not be used.  Liver function is mainly affected by alcohol use, medications, and certain diseases (especially Hepatitis B and C). Up to 3 out of 4 patients will have abnormal liver tests at the first visit and 1 out of 5 of these will have very abnormal results.
Fasting Glucose	Determine whether you have diabetes.  Test should be done after no food for at least 8 hours. Some HIV medicines may lead to blood sugar abnormalities.
Lipids (fats): total cholesterol, HDL (good cholesterol) LDL (bad cholesterol) and triglycerides.	Find out the level of unhealthy fats in your blood.

  

Lab Test	Reason for Test
HLA-B* 5701 (this test is not usually needed on the first visit but may be done to prepare for the future)	Determine if you may have a severe reaction to a drug called Abacavir (Ziagen/abbreviated ABC).  If you are HLA-B*5701+, you will want to avoid this drug.
Lipids (fats): total cholesterol; HDL (good cholesterol); LDL (bad cholesterol); and triglycerides.	Check for problems with wax-like fatty particles in the blood; these particles can clog arteries and lead to diseases like stroke and heart attack.
Fasting blood glucose (FBG)	Determine whether you have diabetes.  Test should be done after no food for at least 8 hours.  Some HIV medicines may lead to blood sugar abnormalities.
Hepatitis A total Antibody--(abbreviated Anti-HAV Ab)	Find out if you have immunity to Hepatitis A.  Hepatitis A is a virus that affects your liver.  If you have immunity, you are unable to get this infection, either because you have been vaccinated or you had Hepatitis A in your lifetime.
Hepatitis B surface Antibody--also called HBsAB or Anti-HBs	Find out if you have immunity to Hepatitis B.  Hepatitis B is a virus that affects your liver.  If you have immunity, you are unable to get this infection, either because you have been vaccinated or you had Hepatitis B in your lifetime.  If your number is more than or equal to 10, you are immune.
Hepatitis B core Antibody--abbreviated HBcAb	This will be positive if you ever had Hepatitis B infection.
Hepatitis B surface antigen--or HBsAg	Find out if you have chronic (ongoing) Hepatitis B infection.  In this case, the Hepatitis B may be “active” and affecting your liver.  Hepatitis B is treatable with medications, usually the same medicines you take for HIV.
Hepatitis C Antibody--abbreviated HCV Ab	Find out if you have Hepatitis C.  Hepatitis C is a liver infection.  In HIV negative persons, 2 out of every 100 people will have Hepatis C.  In men who have sex with men, up to 6 out of 100 will have Hepatitis C.  In people who inject (“shoot up”) street drugs like heroin or cocaine, up to 9 out of 10 will test positive for Hepatitis C. Hemophiliacs also have high risk.  If your CD4 count is less than 100, your Hepatitis C test may be negative, even if you have Hepatitis C.
Gonorrhea and Chlamydia--(abbreviated GC/CT) a urine test or culture of fluids from cervix (inside the vagina), throat, rectal area, or tip of penis.	This sexually transmitted infection is common in both men and women and one may not have any symptoms.   If one has gonorrhea or chlamydia, one is more likely to infect others with HIV.  These 2 infections are easily treated.
Pap smear (This test is done during the first or second visit.)	Test for cancer of either the cervix or the anus (rectal area) in both women and men.  Check at first visit, then in 6 months, then every year.   In HIV negative women, up to 11 out of 100 women will have abnormal cervical cells (which may be beginning cancer); in HIV positive women, up to 45 out of 100 will have these abnormal cervical cells.  As CD4 count goes down, the chance for cervical cells to become cancerous goes up.  Human papilloma virus (HPV), causes warts, and is thought to be the cause of cervical or anal cancer.  HPV will be worse with HIV infection. (HPV types 16, 18, 31, 33, and 39 are the types associated with cervical cancer.)

 During the first visit 

The first visit with your doctor, nurse practitioner, or physician’s assistant will usually include: 

1. Questions about any diseases, hospitalizations, mental (psychiatric) illness, or surgeries you have had in the past.  This will include many questions about how and when you think you got HIV infection.  It is also important to know whether you have ever tested positive or were treated for tuberculosis or syphilis.  This is called your past medical history or PMH.
2. Questions about your living situation like: a) whether you rent, own your own home, or are homeless; b) who you share your home with; whether you are married, single, have a significant other, etc.; c) whether your have a job and what type of work it is and what are your normal work hours; d) whether you use street drugs, alcohol, or tobacco; e) whether you have close family and friends you can rely on; f) questions about your sexual identity/behavior--gay, straight, bisexual, transgender, number of sex partners in past year, etc. Your provider will ask you whether you use condoms (or have your partner use a condom). g) whether you have (or are able to get) medical insurance coverage.  All this information is called your “social history” or SH.
3. Questions about diseases that run in your family--called your family history or FH; 
4.   A complete physical exam or PE. This usually involves taking off all your clothing or just moving clothing aside.  The main reason to take off everything is to look for sores or lumps in the genital or rectal area (private parts).  Many patients are embarrassed about these sores, and will not bring them up.  Some patients don’t even know that they may have sores in these private areas.  

A word about females

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In our clinic, we have women come back to the clinic for a separate visit just for her pap smear.  This is a good idea for several reasons.  The pap smear visit focuses on gynecological issues (GYN) and there will be discussion about birth control, future plans for having a baby, sexual partners, etc.  There is usually not enough time in the first visit to talk about all these things so a separate visit is necessary.  Some providers may include the pap smear in the first visit.  

From: Guidelines for the Use of Antiretroviral Agents in HIV-1 Infected Adults and Adolescents, January 10, 2011.  The Role of STD Detection and Treatment in HIV Prevention--CDC Fact Sheet, September 2010.