Section Two: Special Situations
Part Two of Three in Project Inform's "What You Should Know About When to Start and What Meds to Use" Booklet
The first section described situations that everyone living with HIV should know about because most people will face them at one time or another. However, our needs change over time and they can differ from person to person. Some people may be concerned about passing HIV on to sex partners. Others are more concerned about how to improve their health and wellness.
In this next section, we talk more about those situations. For example, maybe you're in your 50s or 60s now or you want to get pregnant. You're entitled to live a full life with HIV, including having a family and loving relationships. Read those topics that apply to you.
Despite what it felt like when you first tested positive, that shouldn't mean the end of sex and romance. Telling your status to partners is more tricky and risky for people living with HIV, but you can still have a fulfilling sexual and romantic life.
Most people with HIV want to protect their HIV-negative partners from becoming infected, and most people do. The easiest and cheapest way to do this is to either refrain from high-risk sex (such as anal or vaginal sex without condoms) or always use a condom. Some people also choose only to have sex with or date other people who are HIV-positive. Below you'll find other things to consider when protecting your partners.
PrEP (Pre-Exposure Prophylaxis)
PrEP is a daily HIV pill that an HIV-negative person takes to prevent transmission (along with using condoms). Taking it as directed can reduce transmission by up to 90%. This is true in both women and men and for both vaginal and anal sex. PrEP is approved by the FDA and should only be done with the help of a doctor. If you have an HIV-negative sex partner, PrEP may be something to explore. For more information, read Project Inform's publications at www.projectinform.org/prep.
There's more of a chance of passing HIV if you have sex when a sexually transmitted disease like chlamydia or syphilis is present in either partner. Even if symptoms aren't present, active genital infections can still raise the risk. Have your doctor regularly screen for and treat STDs.
Undetectable Viral Load
The chance for passing HIV is much less likely when the positive partner takes HIV meds and stays undetectable over time. Undetectable viral load in the blood is linked to lower and perhaps undetectable viral load in vaginal and anal fluids and semen. However, several things can briefly raise viral load in genital fluids and blood: sexually transmitted infections, other infections that challenge the immune system like hepatitis B or C, or even a recent vaccination.
Foreskin Vs. No Foreskin
Having a foreskin increases the risk because HIV aims for the immune cells found within the foreskin. For straight men during vaginal sex, there's about a 60% lower risk of transmission when he is cut. As for anal sex (straight or gay), it's not as clear how much more protection there is for the man who's cut.
Sometimes HIV-positive people change their unprotected sex to lower the risk of passing HIV to others: by sero-sorting, or having sex with someone they think is also HIV-positive; and by sero-positioning, or "bottoming" for an HIV-negative partner.
Sero-sorting with another HIV-positive person increases the risk for super-infection, or getting another strain of HIV which may make it harder to control. This most often occurs during the first months after infection. However, there are probably fewer serious concerns if both partners are on HIV meds and stay undetectable.
Sero-positioning may somewhat reduce the risk for passing HIV, but the HIV-negative top (insertive) can still get HIV through unprotected vaginal and anal sex. This is especially true if breaks in the skin or infections are present, if viral load is detectable, or if the top is uncut.
Since these sero-adaptive behaviors imply unprotected sex, you can still get other sexual infections such as chlamydia, herpes and syphilis, as well as diseases that people don't often think of in terms of sex, like hepatitis C. Recent mini-epidemics of both syphilis and hepatitis C have been seen in HIV-positive gay and bisexual men. Both have a faster progression and are harder to treat in people with HIV.
Some states make it a crime to have sex with an HIV-negative person if you don't disclose you have HIV -- even if you use a condom, take HIV meds, and have an undetectable viral load. In some states, notably in the Midwest and the South, prosecutions are increasing for those people who don't disclose. To learn more about this and how to protect yourself, visit www.seroproject.com.
HIV meds allow most everyone to live a longer, healthier life. It's also true that making this happen takes seeing a doctor and getting regular blood work done. However, younger people -- especially those under 25 years old -- more often aren't in regular medical care. This is especially true of young gay and bisexual men and young African American and Latino men and women.
It's also true that younger people tend to struggle with keeping up with their meds. This probably has to do with having an active social life and other distractions -- like juggling school, working, sports, volunteering and other responsibilities.
These are real issues, but they aren't insurmountable. If you don't have steady health care, consider getting onto your parents' insurance if you can. The Affordable Care Act now allows children up to the age of 26 to be on their parents' plans.
If this doesn't work for you (you may not have told your parents about your HIV), then talk to a case manager about other insurance options. As well, ask someone in your doctor's office or your case manager or pharmacist about ways to remember taking your pills and keeping up with medical appointments.
Today, many more people in their 50s and 60s and even 70s are finding out they have HIV. Many HIV-positive people are also growing into older age. The US Guidelines recommend that all people over 50 be on HIV meds. And although older adults tend to respond a little slower to HIV meds, they can nevertheless improve their health and wellness.
Aging and HIV
The older you get, the more important it is to keep up with a healthy lifestyle and notice medical issues as they develop. The health changes that people typically see as they get older -- diabetes, bone loss, heart and other organ disease, cognitive problems and cancer -- sometimes show up sooner in HIV-positive people.
It may be more difficult to assess your health, because these conditions could be from aging, HIV, HIV meds, other meds, or a combination of them. Be alert on how your health changes and be diligent about reporting them to your doctor and following treatment plans.
What also can help you stay healthy -- and what you can control -- is staying active and challenging your mind. Talk often with friends. Read or fill out puzzles. Take walks or exercise within your limits. These all can help maintain your bone, brain and heart health.
HIV Meds and Older Adults
If you started HIV meds as an older adult, it may take a little longer to see your CD4 count increase compared to someone in their 20s or 30s. However, it's very likely you'll continue to see these improve over time, which is one of the main goals of treatment. In fact, older adults seem to do better with taking HIV meds. The downside of that, however, is that people over 50 tend to have more side effects and drug interactions.
It's common for older adults to take a lot of prescriptions, so your HIV regimen may be just one of several doses of pills you have to remember every day. How many medicines do you take? Which are taken or not taken with food? Has forgetfulness or depression become an issue?
Don't feel embarrassed to ask for help from your nurse or doctor around ways to take your pills on time. Also, every now and then review all the meds you take with your pharmacist or doctor to make sure drug interactions aren't overlooked so that all the meds you take are working as well as they can.
Sex and Transmision
Protecting sex partners from getting HIV is an issue that people over 50 are dealing with more today. In some ways, unprotected sex seems like a natural thing to do after 50 since pregnancy becomes less of an issue. For others, they may stop using condoms because they're mentally fatigued from a lifetime of safer sex. Sometimes, people just don't see themselves at risk.
As more men use erection drugs later in life, there's been a marked increase in sexually transmitted infections in people over 50. This may be due, in part, to subtle changes in the moist areas of sex organs as people age that can make transmission easier. For all of these reasons, it's important to continue protecting sex partners from getting HIV.
Vaccines and Other Prevention
As you get older, several serious illnesses can be prevented by getting routine vaccines. The yearly flu vaccine and the one for pneumococcal pneumonia are safe to get, as are those used to prevent hepatitis A and B. Don't forget your booster tetanus shots. As well, recent information shows that the shingles vaccine is safe for HIV-positive people.
As you probably know, aspirin can help with heart disease and perhaps other inflammatory conditions. So discuss this with your provider if you have hypertension. Make sure you get routinely screened for various cancers as well, such as cancers of the mouth, throat, lung, cervix, anus, liver and skin.
Main Points to Remember
- Older adults can improve and maintain their health with HIV meds.
- Drug interactions with other prescriptions can be hard to manage. Talk to a pharmacist about all the meds you take.
- STDs are becoming more common among older adults. Protect your partners from getting HIV and other STDs.
- Talk to your doctor about which vaccines could help you prevent other conditions.
HIV meds have helped people go back to work, volunteer, travel and continue loving relationships. For some couples where one is negative and the other is positive (mixed status), they also want to raise families. It's very possible for couples to conceive while greatly lowering the chance of passing HIV to the negative partner during sex.
Couples should consider the emotional effects of trying to conceive. If both partners are not fully informed or able to speak up for themselves as they make decisions, then it might be better to wait for another time to try.
Getting Expert Medical Help
Before you start, get informed medical support from friendly doctors and nurses. This may not be easy, as some do not agree with mixed status couples trying to conceive. You may need to keep looking, use the resources at http://hiv.ucsf.edu/care/perinatal.html, or find HIV-experienced doctors. Doing this on your own could increase the risk of transmission.
Staying on a Stable HIV Regimen
Keeping viral load undetectable can reduce transmission by up to 96%. Therefore, the HIV-positive partner should be taking HIV meds as prescribed every day and getting more regular viral load tests done.
Having Timed Intercourse
Conception doesn't happen every time sex does. Therefore, to reduce the risk of HIV as much as possible, restrict sex only to when there are no genital infections present and only to her most fertile days. A doctor can help determine this.
Taking PrEP (Pre-Exposure Prophylaxis)
PrEP is when an HIV-negative person takes an HIV pill daily to prevent HIV, which reduces this risk by up to 90% when used with condoms. PrEP can also be used by couples who are trying to conceive, but there may be unknown risks for the baby if the woman takes PrEP. Talk to your doctor about PrEP as part of all family planning decisions.
If he is negative, the woman could use a plastic baby's syringe (found in drug stores or doctor's office) to insert his semen near her cervix. To collect the semen, he should ejaculate into a plain condom or clean container. Read "Home Insemination" at http://hiv.ucsf.edu/care/perinatal/resources.html.
Having a Foreskin Vs. None
During unprotected sex, having a foreskin can make it easier for the man to get HIV. There's about a 60% lower risk of transmission when the male partner is cut.
Though assisted reproduction services are quite expensive -- and not available everywhere -- some people turn to fertility specialists who can help them with in-vitro fertilization (IVF) and sperm washing, which are often used together. Sperm washing is a process that "cleans" HIV away from sperm.
Couples may also want to consider other choices, such as adoption or donor sperm. These may be appropriate for certain couples wanting to raise children.
Other Things to Consider
Even if the positive partner is on stable HIV meds, genital infections and other infections like the flu could temporarily increase viral load in genital fluids and blood, perhaps to an infectious level. Getting a vaccination can do the same. Avoid unprotected sex during or shortly after these times.
|Options That Reduce the Risk for Transmission|
|HIV+ Woman||HIV- Man||HIV- Woman||HIV+ Man|
|Expert medical support||X||X||X||X|
|HIV treatment adherence||X||X|
|Effective HIV treatment||X||X|
|STD prevention, treatment||X||X||X||X|
Not all HIV meds have been studied as well in women. For instance, it's not always well understood how female hormones interact with HIV meds. Despite this, treating HIV is pretty much the same for women and men, aside from the areas described below.
However, what often isn't talked about in a doctor's office are the things that can get in the way of women taking good care of their HIV and general health. Many women look after other people first before doing those key things that keep them healthy. This includes taking meds, getting to regular doctor visits, eating well, getting good sleep, and keeping active with hobbies.
If this sounds like your life, then it opens you up to some of the issues detailed in other parts of this booklet. The bottom line: your health matters. And if you're taking the best care of yourself as you possibly can, then you're also probably doing the best for others in your life.
Many HIV meds, mostly protease inhibitors and NNRTIs, can interact with hormonal birth control pills (those with ethinyl estradiol, norethindrone). These interactions can change how well the birth control pill or HIV meds do their jobs. In this case, women may consider other HIV meds or use another form of birth control instead of, or in addition to, the pill.
Periods and Menopause
Heavy, painful or irregular periods may occur with some HIV meds, including some protease inhibitors. Report any changes you notice to your doctor.
Women can lose about 5% of their bone mass during menopause. Combine that with the bone loss that can happen from taking HIV meds, from aging or from being inactive, and this can lead to fractures and broken bones. Talk to your provider about your options for prescriptions that help maintain bone health.
Some studies show that women with more advanced HIV disease may go through menopause at an earlier age, although other studies do not.
We know a great deal about how to safely prevent HIV being passed during pregnancy and birth. The topics below should be considered and discussed with your doctor when taking HIV meds leading up to and during pregnancy.
Ensuring the mother's health:
- The US Guidelines recommend all HIVpositive pregnant women be on treatment, regardless of CD4 count or viral load.
- Find a doctor who is experienced with HIV and pregnancy.
Protecting the baby:
- Some doctors recommend that women with early HIV disease not start treatment during their first trimester, when the baby's organs are developing.
- Sustiva (Atripla) should not be used while the woman is trying to get pregnant and after getting pregnant, due to a risk of birth defects. If a woman has to use Sustiva, it's best to wait until the second trimester to start.
- Some HIV meds may worsen conditions that are commonly seen during pregnancy, such as diabetes.
- If protease inhibitors are used, their dose may need to be increased during the third trimester.
- Starting Viramune may cause severe liver disease when CD4s are above 250.
- Retrovir is normally used to help prevent transmission, unless the woman develops severe side effects, or is resistant to it.
- Retrovir+Zerit and Videx+Zerit should not be used.
Whether or not the woman is taking HIV meds, the virus can be found in breast milk and may be passed to the child during breast-feeding. HIV meds may also be passed. Therefore, the US Guidelines recommend that mothers use formula to feed newborns. Women should consult experienced maternity doctors to figure out their options. Accredited national or local breast milk banks may also help and may meet the infant's need for breast milk.
It's not uncommon for people to drink or use recreational drugs. For some, this isn't an issue for them socially or medically. However, drinking or using drugs can change how well your HIV meds work.
Most health care providers recommend that the average man should have no more than two drinks per day. Women should have no more than one.
People who drink more than that -- or who binge (4 drinks for women and 5 for men within 2 hours) -- are at a higher risk for accidents, STDs, mental health problems, and diseases of the liver, heart and brain. As for recreational drugs such as ecstasy and ketamine, they can cause severe reactions with HIV meds, including heart attacks, hepatitis, paranoia and death.
That all probably sounds alarming, but we've mentioned it because it's a real issue for some people. As well, there are other reasons why it's important for HIV-positive people to drink responsibly and to limit their drug use, which includes what's below.
If you drink regularly or use drugs, you will probably have a harder time remembering to take your meds. As we've mentioned often in these booklets, not taking your HIV meds as prescribed can cause them to stop working and limit your treatment options.
On its own, HIV can be hard on the liver. And 1 out of 4 HIV-positive people also have hepatitis C, which can greatly hurt liver health as well. Adding alcohol or certain recreational drugs can make things even worse. You can help your liver stay healthier longer by not using drugs or not drinking too much or any alcohol.
If you're not successful with cutting down or cutting out your alcohol or drug intake on your own, ask your health care provider or case manager for help. There are many kinds of programs that can support you while you stop drinking or drugging.
Main Points to Remember
- Drinking alcohol or doing recreational drugs can make you forget to take your meds on time.
- Some recreational drugs can cause very harmful interactions with HIV meds.
- Alcohol and street drugs can be very hard on the liver.
- Seek support programs to quit drinking or doing drugs.
On its own, HIV can worsen some common diseases, like heart and lung disease, bone loss and various cancers. Nearly twice the number of HIV-positive people smoke compared to HIV-negative people. So when you add smoking tobacco (or marijuana) -- and to a smaller extent chewing tobacco -- to HIV infection, then these diseases actually have a chance to develop at a faster rate. This is especially true for heart disease and for head, neck and anal cancers.
Almost all doctors would agree that stopping smoking is the number one thing you can do to significantly improve your health. Although it can be a frustrating and difficult process to go through -- and most people have to try it more than once -- the bottom line is that you can greatly reduce your risk of these health hazards even within one year of stopping. By the time you're ten years away from your last cigarette your risk for many of these diseases is about the same as people who never smoked.
There are many different types of stop-smoking programs and products that may work. On the one hand, some people try stopping on their own with products bought over the counter, like nicotine gum, patches and lozenges. Your doctor can also write a prescription for you, such as Chantix or Wellbutrin. On the other hand, some people prefer to talk with others who are going through the same process and find that support groups or programs at community agencies are more successful for them.
For more info, a good website is www.mayoclinic.com/health/quit-smoking-products/MY00781.
An often overlooked way to keep good general health is by visiting your dentist regularly. Poor oral health, like untreated gum disease, can contribute to other conditions like stomach, heart or lung disease. Why? Because the inflammation and bacterial infections in the mouth can spread down into the upper chest. See your dentist every six months, and if you feel comfortable with it disclose your HIV status.
While HIV meds have certainly extended people's lives, unfortunately we've also seen many more HIV-positive people b ecome overweight or obese. This can lead to diabetes, hypertension, and heart and kidney disease -- conditions already more common in HIV-positive people and in African Americans and Latinos. For older adults with HIV, being physically active may be even more important to help from becoming frail.
If you're able, consider joining a gym. If you can't, then taking brisk 20-minute walks a few times a week can help a great deal. At-home exercise routines are available through DVDs, TV and gaming stations. Use online sources or find healthy eating programs through your local health department or community organizations. Ask for help when you don't know where or how to start.
Hepatitis C (HCV)
About 1 out of 4 Americans with HIV also have hepatitis C, but many don't know it. If you haven't been tested, ask for a HCV antibody test. If that comes back positive, then get an RNA test done to see if you have chronic hepatitis C. If you do, get your health assessed by someone who is experienced in making decisions about treating both.
HIV infection can make hepatitis C worse. It's unclear whether hepatitis C makes HIV worse. Newer HCV meds can cure hepatitis C in about 3 out of 4 co-infected people. For more info, call 877-HELP-4-HEP (877-435-7443).
Before starting HIV meds, you should have been tested for hep B. If you were negative, then get the hep B vaccine.
If you have chronic hep B, then your current HIV regimen should include one of these meds because they're also used to treat hep B: Viread (Atripla, Truvada), Emtriva (Atripla, Truvada), or Epivir (Combivir, Epzicom, Trizivir).
HIV can make hep B worse, including cirrhosis and end-stage liver disease. It's unclear whether hep B makes HIV worse. It's rare for co-infected people to clear hep B, so treating it is more about keeping it less active over time to reduce damage. Seek doctors experienced in treating both.
Anal and Other HPV Cancers
The human papillomavirus (HPV) can cause abnormal cells to grow (dysplasia), which sometimes can turn into cancer. These include cancers of the mouth, throat, cervix and anus. (HPV also causes the common wart which isn't cancerous.)
HIV-positive men who have sex with men are at a much higher risk than normal for anal cancer. HIV-positive women are also at a higher risk whether or not they have anal sex, and are at higher risk for cervical cancer than HIV-negative women. Work with your doctors about how best to prevent these conditions by routine screening.
Type 2 diabetes is usually seen as people age. It is more common among HIV-positive people, but many don't know their risk and go undiagnosed. Some HIV meds, such as protease inhibitors, can contribute to diabetes to some degree. It's still possible to manage both diabetes and HIV, given the various medicines used for both.
Many HIV-positive people have lower than normal bone mass, perhaps due to HIV and ongoing inflammation. Certain HIV meds, such as Viread, can also cause bone loss. Having this bone loss may mean there's a higher risk for fractures or breaks.
Some studies find that this loss levels out within a year or two of starting meds, but other studies show continued loss over time. Bone density screenings are helpful for finding bone loss. Vitamin D and calcium supplements may help prevent bone problems, as well as prescription medicines.