Hiv questions and answers

Contents

HIV and AIDS – Basic facts

General

1) What is HIV?

HIV stands for human immunodeficiency virus. HIV is a retrovirus that infects cells of the human immune system (mainly CD4-positive T-cells and macrophages—key components of the cellular immune system) and destroys or impairs their function. Infection with this virus results in the progressive depletion of the immune system, leading to immunodeficiency.

The immune system is considered deficient when it can no longer fulfil its role of fighting off infection and diseases. People with immunodeficiency are much more vulnerable to a wide range of infections and cancers, most of which are rare among people without immunodeficiency. Diseases associated with severe immunodeficiency are known as opportunistic infections because they take advantage of a weakened immune system.

2) What is AIDS?

AIDS stands for acquired immunodeficiency syndrome and describes the collection of symptoms and infections associated with acquired deficiency of the immune system. Infection with HIV has been established as the underlying cause of AIDS. The level of immunodeficiency or the appearance of certain infections are used as indicators that HIV infection has progressed to AIDS (see question 4).

3) What are the symptoms of HIV?

Most people infected with HIV do not know that they have become infected. Immediately after the infection, some people have a glandular fever-like illness (with fever, rash, joint pains and enlarged lymph nodes), which can occur at the time of seroconversion. Seroconversion refers to the development of antibodies to HIV and usually takes place between one and two months after an infection has occurred (see question 32).

Despite the fact that HIV infection often does not cause any symptoms, a person newly infected with HIV is infectious and can transmit the virus to another person (see question 7). The way to determine whether HIV infection has occurred is by taking an HIV test (see question 31).

HIV infection causes a gradual depletion and weakening of the immune system. This results in an increased susceptibility of the body to infections and cancers and can lead to the development of AIDS (see questions 2 and 4).

4) When does a person have AIDS?

The term AIDS applies to the most advanced stages of HIV infection.

The majority of people infected with HIV, if not treated, develop signs of AIDS within eight to 10 years.

AIDS is identified on the basis of certain infections. Stage 1 HIV disease is asymptomatic and not categorized as AIDS. Stage II (includes minor mucocutaneous manifestations and recurrent upper respiratory tract infections), III (includes unexplained chronic diarrhoea for longer than a month, severe bacterial infections and pulmonary tuberculosis) or IV (includes toxoplasmosis of the brain, candidiasis of the oesophagus, trachea, bronchi or lungs and Kaposi’s sarcoma) HIV disease are used as indicators of AIDS. Most of these conditions are opportunistic infections that can be treated easily in healthy people.

In addition, the United States Centers for Disease Control and Prevention defines AIDS on the basis of a CD4-positive T-cell count of less than 200 per mm3 of blood (see: ). CD4-positive T-cells are critical in mounting an effective immune response to infections.

5) How quickly do people infected with HIV develop AIDS?

The length of time can vary widely between individuals. The time between infection with HIV and becoming ill with AIDS can be 10–15 years, sometimes longer, but sometimes shorter. Antiretroviral therapy can prevent progression to AIDS by decreasing viral load in an infected body (see question 26).

Transmission

6) Where is HIV found?

HIV can be found in body fluids, such as blood, semen, vaginal fluids and breast milk.

7) How can HIV be transmitted?

HIV is transmitted through penetrative (anal or vaginal) sex, blood transfusion, the sharing of contaminated needles in health-care settings and drug injection and between mother and infant during pregnancy, childbirth and breastfeeding.

Sexual transmission

HIV can be transmitted through penetrative sex. HIV is not transmitted very efficiently so the risk of infection through a single act of vaginal sex is low. Transmission through anal sex has been reported to be 10 times higher than by vaginal sex. A person with an untreated sexually transmitted infection, particularly involving ulcers or discharge, is, on average, six to 10 times more likely to pass on or acquire HIV during sex.

Oral sex is regarded as a low-risk sexual activity in terms of HIV transmission.

When a person living with HIV is taking effective antiretroviral therapy and has a suppressed viral load they are no longer infectious.

Transmission through sharing of needles and syringes

Re-using or sharing needles or syringes represents a highly efficient way of transmitting HIV. The risk of transmission can be lowered substantially among people who inject drugs by always using new needles and syringes that are disposable or by properly sterilizing reusable needles/syringes before reuse (see question 19). Transmission in a health-care setting can be lowered by health-care workers adhering to universal precautions (see question 20).

Mother-to-child transmission

HIV can be transmitted to an infant during pregnancy, labour, delivery and breastfeeding. Generally, there is a 15–30% risk of transmission from mother to child before and during delivery. A number of factors influence the risk of infection, particularly the viral load of the mother at birth (the higher the load, the higher the risk). Transmission from mother to child after birth can also occur through breastfeeding (see question 21). The chances of transmission of HIV to a child is very low if the mother is on antiretroviral therapy during pregnancy and when breastfeeding.

Transmission through blood transfusion

There is a high risk (greater than 90%) of acquiring HIV through transfusion of infected blood and blood products. However, the implementation of blood safety standards ensures the provision of safe, adequate and good-quality blood and blood products for all patients requiring transfusion. Blood safety includes screening of all donated blood for HIV and other blood-borne pathogens, as well as appropriate donor selection.

8) What is the risk of transmitting HIV through kissing or deep kissing?

Transmission through kissing on the mouth carries no risk, and no evidence has been found that the virus is spread through saliva by kissing.

9) What is the risk of transmitting HIV through body piercing or tattooing?

A risk of HIV transmission does exist if contaminated instruments are either not sterilized or are shared with others. Instruments that are intended to penetrate the skin should be used once, then disposed of or thoroughly cleaned and sterilized.

10) What is the risk of transmitting HIV through sharing razors with an infected person?

Any kind of cut using an unsterilized object, such as a razor or knife, can transmit HIV. Sharing razors is not advisable unless they are fully sterilized after each use.

11) Is it safe to have sex with a person living with HIV?

Having sex with someone living with HIV is safe if the person’s virus is fully suppressed by treatment. Sex is also safe if a condom is used properly or if you are taking pre-exposure prophylaxis in accordance with your health-care provider’s recommendations.

12) Is it safe for two people living with HIV to engage in unprotected sex exclusively with each other?

It is best for someone living with HIV to avoid becoming infected with a different strain of the virus. Therefore, the advice given in question 11 should be followed, except for the advice about pre-exposure prophylaxis, which is never used by people living with HIV.

Prevention

13) How can HIV infection be prevented?

Sexual transmission of HIV can be prevented by:

  • Monogamous relations between uninfected partners.
  • Non-penetrative sex.
  • Consistent and correct use of male or female condoms
  • Sex between two people when one of them is living with HIV but in taking antiretroviral therapy and has undetectable viral load
  • Pre-exposure prophylaxis taken by people who are not infected with HIV.
  • Voluntary Medical Male Circumcision reduces the chances of men acquiring HIV from women.

Additional ways of avoiding infection:

  • If you are an injecting drug user, always use new needles and syringes that are disposable or needles and syringes that have been properly sterilized before reuse (see question 20) or opt for other prevention measures such as Opioid Substitution therapy.
  • Ensure that blood and blood products are tested for HIV and that blood safety standards are implemented.
  • See questions 19–22.

14) What is safer sex?

Safer sex involves taking precautions that decrease the potential of transmitting or acquiring sexually transmitted infections, including HIV, while having sex. Using condoms correctly and consistently during sex is considered safer sex, as is oral sex and non-penetrative sex or taking pre exposure prophylaxis if you are at risk of HIV infection or having undetectable viral load if you are living with HIV.

15) How effective are condoms in preventing HIV?

Quality-assured condoms are the only products currently available to protect against sexual infection by HIV and other sexually transmitted infections. When used properly, condoms are a proven and effective means of preventing HIV infection among women and men.

In order to achieve the protective effect of condoms, they must be used correctly and consistently. Incorrect use can lead to condom slippage or breakage, thus diminishing their protective effect.

16) How do you use a male condom?
  • Condoms with lubrication are less likely to tear during handling or use. Oil-based lubricants, such as Vaseline, should not be used, as they can damage the condom.
  • Only open the package containing the condom when you are ready to use it. Otherwise, the condom will dry out. Be careful not to tear or damage the condom when you open the package. If it does get torn, throw it away and open a new package.
  • Condoms come rolled up into a flat circle. Place the rolled-up condom, right side up, on the end of the penis. Hold the tip of the condom between your thumb and first finger to squeeze the air out of the tip. This leaves room for the semen to collect after ejaculation. Keep holding the top of the condom with one hand. With the other hand, unroll the condom all the way down the length of the erect penis to the pubic hair.
  • If the condom is not lubricated enough, a water-based lubricant (such as silicone, glycerin or K-Y jelly) can be added. Lubricants made from oil—cooking oil or shortening, mineral or baby oil, petroleum jellies such as Vaseline and most lotions—should never be used because they can damage the condom.

After sex, the condom needs to be removed the right way.

  • Right after the man ejaculates, he must hold onto the condom at the base, to be sure that the condom does not slip off.
  • Then, the man must pull out while the penis is still erect.
  • When the penis is completely withdrawn, remove the condom from the penis and throw away the condom. Do not flush it down the toilet.

If you are going to have sex again, use a new condom and repeat the whole process.

17) What is a female condom?

A female condom is a female-controlled contraceptive barrier method. The female condom is a strong, soft, transparent polyurethane sheath inserted into the vagina before sexual intercourse. It entirely lines the vagina and, therefore, with correct and consistent use, provides protection against both pregnancy and many sexually transmitted infections, including HIV. The female condom has no known side-effects or risks and does not require a prescription or the intervention of a health-care provider.

18) How do you use a female condom?
  • Carefully remove the condom from its protective pouch. Add extra lubricant, if desired, to the inner and outer rings of the condom.
  • To insert the condom, squat down, sit with your knees apart or stand with one foot on a stool or low chair. Hold the condom with the open end hanging down. While holding the top ring of the pouch (the closed end of the condom) squeeze the ring between your thumb and middle finger.
  • Now place your index finger between your thumb and middle fingers. With your fingers in this position, keep the top of the condom squeezed in a flat oval. Use your other hand to spread the lips of your vagina and insert the closed end of the pouch.
  • Once you have inserted the closed end of the pouch, use your index finger to push the pouch the rest of the way up into your vagina. Check to be certain that the top of the pouch is up past your pubic bone, which you can feel by curving your index finger upwards once it is a few inches inside your vagina. You can insert the pouch up to eight hours before your have intercourse.
  • Make sure that the condom is not twisted inside your vagina: if it is, remove it, add a drop or two of lubricant and re-insert. Note: about two centimetres of the open end of the condom will remain outside your body. If your partner inserts his penis underneath or alongside the pouch, ask him to withdraw immediately. Remove the condom, discard it and use a new pouch. Until you and your partner become familiar with the female condom, it will be helpful if you use your hand to guide his penis into your vagina.
  • After your partner ejaculates and withdraws, squeeze and twist the open end of the pouch to keep the sperm inside. Pull out gently. Dispose of the used condom (but do not throw it down the toilet).
  • The re-use of female condoms is not recommended (see http://www.who.int/reproductive-health/rtis/reuse.en.html).

See also: http://www.who.int/reproductive-health/publications/RHR_00_8/RHR_00_8_chapter5.en.html.

19) What is post-exposure preventive treatment?

Post-exposure preventive (PEP) treatment consists of medication, laboratory tests and counselling. PEP treatment must be initiated within hours of possible HIV exposure and must continue for a period of approximately four weeks. Research studies suggest that, if the medication is initiated quickly after possible HIV exposure (ideally within two hours and not later than 72 hours following such exposure), it is beneficial in preventing HIV infection.

For more information, see http://www.who.int/hiv/topics/prophylaxis/en/.

20) How can injecting drug users reduce their risk of contracting HIV?

For injecting drug users, certain steps can be taken to reduce personal and public health risks:

  • Take drugs orally (change from injecting to non-injecting drug use).
  • Never re-use or share syringes, water or drug-preparation equipment.
  • Use a new syringe (obtained from a reliable source, e.g. a chemist or via a needle–syringe programme) to prepare and inject drugs each time.
  • When preparing drugs, use sterile water or clean water from a reliable source.
  • Using a fresh alcohol swab, clean the injection site prior to injection.

21) How can mother-to-child transmission be prevented?

Transmission of HIV from a mother living with HIV to her baby can occur during pregnancy, during labour or after delivery through breastfeeding. In the absence of any intervention, an estimated 15–30% of mothers living with HIV will transmit the infection during pregnancy and delivery. Breastfeeding increases the risk of transmission by 10–15%. This risk depends on clinical factors and may vary according to the pattern and duration of breastfeeding.

Great progress has been made in reducing the number of children born with HIV. The risk of a woman living with HIV passing the virus on to her child can be reduced to 5% or less with effective antiretroviral therapy during pregnancy, delivery and breastfeeding. Primary prevention of new HIV infections among women of childbearing age, coupled with early access to prenatal care and HIV testing, are key to the strategy, with women living with HIV also encouraged to remain on lifelong treatment for their own health (the Option B+ strategy).

Early infant diagnosis is essential to identify the HIV status of infants and to improve prevention and treatment programmes, as peak mortality occurs between six weeks to four months of age for children who have acquired HIV infection.

22) What procedures should health-care workers follow to prevent transmission in health-care settings?

Health-care workers should follow universal precautions. Universal precautions are infection-control guidelines developed to protect health workers and their patients from exposure to diseases spread by blood and certain body fluids.

Universal precautions include:

  • Careful handling and disposal of “sharps” (items that could cause cuts or puncture wounds, including needles, hypodermic needles, scalpels and other blades, knives, infusion sets, saws, broken glass and nails).
  • Hand-washing with soap and water before and after all procedures.
  • Use of protective barriers, such as gloves, gowns, aprons, masks and goggles, when in direct contact with blood and other body fluids.
  • Safe disposal of waste contaminated with blood or other body fluids.
  • Proper disinfection of instruments and other contaminated equipment.
  • Proper handling of soiled linen.

In addition, it is recommended that all health-care workers take precautions to prevent injuries caused by needles, scalpels and other sharp instruments or devices. In accordance with universal precautions, blood and other body fluids from all people are considered as infected with HIV and other possible viruses, regardless of the known or supposed status of the person.

For more information, see http://www.who.int/hiv/topics/precautions/universal/en/.

23) Is there a cure for HIV?

There is no cure for HIV. However, there is effective treatment, which, if started promptly and taken regularly, results in a quality and length of life for someone living with HIV that is similar to that expected in the absence of infection.

24) What treatment is available?

Antiretroviral medicines are used in the treatment of HIV infection. They work against HIV infection by blocking the reproduction of HIV in the body (see question 4). When a person living with HIV is on effective antiretroviral therapy, they are no longer infectious.

25) How do antiretroviral medicines work?

Inside an infected cell, HIV produces new copies of itself, which can then go on to infect other healthy cells within the body. The more cells HIV infects, the greater its impact on the immune system (immunodeficiency). Antiretroviral medicines slow down the replication and, therefore, the spread of the virus within the body by interfering with its replication process in different ways.

Nucleoside reverse transcriptase inhibitors: HIV needs an enzyme called reverse transcriptase to generate new copies of itself. This group of medicines inhibits reverse transcriptase by preventing the process that replicates the virus’s genetic material.

Non-nucleoside reverse transcriptase inhibitors: this group of medicines also interferes with the replication of HIV by binding to the reverse transcriptase enzyme itself. This prevents the enzyme from working and stops the production of new virus particles in the infected cells.

Protease inhibitors: protease is a digestive enzyme that is needed in the replication of HIV to generate new virus particles. It breaks down proteins and enzymes in the infected cells, which can then go on to infect other cells. The protease inhibitors prevent this breakdown of proteins and therefore slows down the production of new virus particles.

Other medicines that inhibit other stages in the virus’s cycle (such as entry of the virus and fusion with an uninfected cell) are currently being tested in clinical trials.

26) Are antiretroviral medicines effective?

The use of antiretroviral medicines in a combination of three medicines has been shown to dramatically reduce AIDS-related illness and death. While not a cure for AIDS, combination antiretroviral therapy has enabled people living with HIV to live longer, healthier, more productive lives by reducing viraemia (the amount of HIV in the blood) and increasing the number of CD4-positive cells (white blood cells that are central to the effective functioning of the immune system).

For antiretroviral treatment to be effective for a long time, different antiretroviral medicines need to be combined. This is what is known as combination therapy. The term highly active antiretroviral therapy (HAART) is used to describe a combination of three or more anti-HIV medicines.

If one medicine is taken on its own, it has been found that, over a period of time, changes in the virus enable it to build up resistance to the medicine. The medicine is then no longer effective and the virus starts to reproduce to the same extent as before. If two or more antiretroviral medicines are taken together, the rate at which resistance develops can be reduced substantially.

Effective antiretroviral therapy also prevents the transmission of HIV. When a person living with HIV is taking effective antiretroviral therapy and has a suppressed viral load HIV can no longer be transmitted through sex.

Antiretroviral medicines should only be taken as prescribed by a health-care professional.

Testing

27) What is an HIV test?

An HIV test is a test that reveals whether a person has been infected with HIV. Commonly used HIV tests detect the antibodies produced by the immune system in response to HIV, as they are much easier (and cheaper) to detect than the virus itself. Antibodies are produced by the immune system in response to an infection.

For most people, it takes a month for these antibodies to develop. Antibodies can be found in blood or oral fluid.

28) How long after possible exposure should I wait to be tested for HIV?

Generally, it is recommended that you wait three months after possible exposure before being tested for HIV. Although HIV antibody tests are very sensitive, there is a window period of up to two months, depending on the specific test being used, which is the period between infection with HIV and the appearance of detectable antibodies to the virus. In the case of the most sensitive anti-HIV tests currently recommended, the window period is about three weeks. This period may be longer if less-sensitive tests are used.

During the window period, people infected with HIV have no antibodies in their blood that can be detected by an HIV test. However, the person may already have high levels of HIV in their body fluids, such as blood, semen, vaginal fluids and breast milk. HIV can be passed on to another person during the window period even though an HIV test may not show that they are infected with HIV.

29) Why should I get an HIV test?

Knowing your HIV status has two vital benefits. Firstly, if you are HIV-infected, you can start treatment promptly, thereby potentially prolonging your life for many years (see question 36). Secondly, if you know you are infected, you can take all the necessary precautions to prevent the spread of HIV to others (see question 13). If you are not infected with HIV, you can learn how to protect yourself from HIV in the future

30) Where can I get tested?

There are many places where you can be tested for HIV: in the offices of a private doctor, a local health department, hospitals, family planning clinics and sites specifically set up for HIV testing. Always try to find testing at a place where counselling is provided about HIV. You can also take an HIV test in privacy by using an HIV self-test kit. However you should go and see your health-care provider in the event of a positive test result for confirmation and seeking appropriate treatment.

31) Are my test results confidential?

All people taking an HIV test must give informed consent prior to being tested. The results of the test must be kept absolutely confidential.

There are different types of testing available:

Confidential HIV test: the medical professionals handling the HIV test keep the result of the test confidential within the medical records. Results cannot be shared with another individual unless written permission is provided by the person tested.

Anonymous HIV test: the tested person’s name is not used in connection with the test. Instead, a code or number is assigned to the test, which allows the individual being tested to receive the results of the test. No records are kept that would link the person to the test.

Shared confidentiality is encouraged and refers to confidentiality that is shared with others, who might include family members, loved ones, caregivers and trusted friends. However, care should be taken when revealing the results as it can lead to discrimination in health-care and professional and social settings. Shared confidentiality is therefore at the discretion of the person who will be tested. Although the result of the HIV test should be kept confidential, other professionals, such as counsellors and health and social service workers, might also need to be aware of the person’s HIV-positive status in order to provide appropriate care.

32) What do I do if I have HIV?

Thanks to new treatments, people living with HIV can now live long, healthy lives. It is very important to make sure you have a doctor who knows how to treat HIV. A health-care professional or trained HIV counsellor can provide counselling and help you to find an appropriate doctor.

33) What does it mean if I test negative for HIV?

A negative test result means that no HIV antibodies were found in your blood at the time of testing. If you are negative, make sure you stay that way: learn the facts about HIV transmission and avoid engaging in unsafe behaviour.

However, there is still a possibility of being infected, since it can take up to three months for your immune system to produce enough antibodies to show infection in a blood test. It is advisable to be retested at a later date and to take appropriate precautions in the meantime. During the window period, a person is highly infectious, and should therefore take measures to prevent any possible transmission.

Myths

34) Are mosquito bites a risk of infection with HIV?

HIV is not spread by mosquitoes or other biting insects. Even if the virus enters a mosquito or another sucking or biting insect, it cannot reproduce in the insect. Since the insect cannot be infected with HIV, it cannot transmit HIV to the next human it feeds on or bites.

35) Should I be concerned about being infected with HIV while playing a sport?

There is no evidence that HIV can be transmitted while playing a sport.

36) Can I get HIV from casual contact (shaking hands, hugging, using a toilet, drinking from the same glass as someone who is living with HIV or being close to an infected person who is sneezing or coughing)?

HIV is not transmitted by day-to-day contact in social settings, schools or the workplace. You cannot be infected by shaking someone’s hand, by hugging someone, by using the same toilet or drinking from the same glass as someone living with HIV or by being exposed to coughing or sneezing by an infected person (see question 7).

37) Does HIV only affect homosexuals and drug users?

No. Anyone who has condom-less sex, shares injecting equipment or has a transfusion with contaminated blood can become infected with HIV. Infants can be infected with HIV from their mothers during pregnancy, during labour or after delivery through breastfeeding.

38) Can you tell if someone has HIV just by looking at them?

You cannot tell if someone has HIV by just looking at them. A person infected with HIV may look healthy and feel good, but they can still pass the virus to you. An HIV test is the only way a person can find out if he or she is infected with HIV.

39) Can I have more than one sexually transmitted infection at a time?

Yes, you can have more than one sexually transmitted infection at the same time. Each infection requires its own treatment. You cannot become immune to sexually transmitted infections. You can catch the same infection over and over again. Many men and women do not see or feel any early symptoms when they first become infected with a sexually transmitted infection; however, they can still infect their sexual partner.

40) When you are on antiretroviral therapy, can you transmit HIV to others?

If the antiretroviral therapy is effective and the virus is fully suppressed, you cannot transmit HIV to others. For this reason, monitoring of the suppression of the viral load is recommended as part of ongoing care for people living with HIV.

What are the main treatments?

If you think you have been exposed to the virus within the last 72 hours (three days), anti-HIV medication may stop you becoming infected. For it to be effective, the medication, called post-exposure prophylaxis or PEP, must be started within 72 hours of coming into contact with the virus.

The quicker PEP is started the better, ideally within hours of coming into contact with HIV. The longer the wait, the less chance of it being effective. PEP has been misleadingly popularised as a “morning-after pill” for HIV. But the description is not accurate. PEP is a month-long treatment, which has serious side effects and is not guaranteed to work. The treatment involves taking the same drugs prescribed to people who have tested positive for HIV.

You should be able to start this treatment at a locla hospital or GUM clinic.

If you’ve tested positive for HIV it is treated with antiretrovirals (ARVs), which work against the HIV infection by slowing down the spread of the virus in the body.

A combination of ARVs is used because HIV can quickly adapt and become resistant to one single ARV.

Patients tend to take three or more types of ARV medication. This is known as combination therapy or antiretroviral therapy (ART).

Some antiretroviral drugs have been combined into one pill, known as a “fixed dose combination”. This means that the most common treatments for people just diagnosed with HIV involve taking just one or two pills a day. Once HIV treatment is started, you will probably need to take the medication for the rest of your life.

Side-effects such as diarrhoea, tingling in the hands and feet and abnormal redistribution of fat (lipodystrophy) are common. Up to 14 tablets a day may need to be taken, and at specific times. Many people find the treatment regime very hard to stick to but for the treatment to be effective, it will need to be taken on time, every time.

How can I help myself?
  • Some people find that complementary therapies or a healthier diet enable them to cope better with the stress of being HIV positive and also with the side-effects of drugs.
  • The support of other people living with HIV and AIDS can also be very helpful.
What’s the outlook?

Increasingly good as treatments become more sophisticated and effective.

We don’t currently post comments online but are always keen to hear your feedback.

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Jen Thomas is a journalist and media strategist based in San Francisco. When she’s not dreaming of new places to visit and photograph, she can be found around the Bay Area struggling to wrangle her blind Jack Russell terrier or looking lost because she insists on walking everywhere. Jen is also a competitive Ultimate Frisbee player, a decent rock climber, a lapsed runner, and an aspiring aerial performer.

Jonathan Blake, 65

Lives in London with his partner. He was one of the first people to be diagnosed with HIV in this country

The only thing that stopped me committing suicide was that I couldn’t bear the thought of someone clearing up my mess. It was 1982, and I’d been to my GP with the kind of swollen glands that hurt when you shook hands with someone. Tests showed I had HTLV3, the original name for HIV. At the time there was all this news filtering in from the US about a mystery illness – that it was terrifying, and terminal. If I can’t kill myself, I thought, I’d better just get on with it.

They wanted to put me on AZT, later revealed to be a failed chemotherapy drug. I refused – I didn’t trust the drug companies; still don’t. But saying no might have saved me. I saw so many people die – of the virus, but also from the drugs. In the back of my mind was always: “It doesn’t matter, I’m going to die soon anyway.” So I got out there and lived my life.

Not long after my diagnosis I met my partner, Nigel, then got involved with LGSM: Lesbians and Gays Support the Miners. I thought we’d take the story of what we did, raising money for the mining families of a town in Wales, to the grave. But a film about it, Pride, came out last year. I like the way my character is portrayed: he’s neither a victim or tragic – HIV is just part of who he is.

I managed with no medication until 1996 and then tried different combinations until I found the one I’m on now. My health is not perfect, but I’m here 30 years later. I don’t know how I survived. The funny thing is, this life I’ve had with HIV, I wouldn’t have missed it for the world. It’s taken me on some amazing adventures.

Lizzie Jordan, 33

Was diagnosed in 2006. She lives with her 10-year-old daughter

‘My only reference point was Mark Fowler in EastEnders’: Lizzie Jordan. Photograph: Antonio Olmos for the Observer

I had been with my partner Benji for four years and our daughter Jaye was just 13 months old. One day Benji came home feeling unwell. We thought it was just a sinus infection, but within four days he was dead.

Postmortem examinations showed that he had something compromising his immune system. That something was HIV. I was tested soon afterwards – as was Jaye, who I was still breastfeeding. Her result was negative. Mine was positive. At that point I was in shock. My only reference point was Mark Fowler in EastEnders. But I’m a mother and I had Jaye to think of, so I just had to keep going.

Although my first thought was to keep my diagnosis a secret, I realised there were women Benji had slept with before me who needed to know. So I decided to be as open as I could. It was hard, though, and his family refused to believe that he’d had Aids. Some of them even blamed me.

That was eight years ago. Today I am happy, healthy and symptomless. I started taking medication last year, and it’s just one pill a day.

Jaye is 10 now and I have told her age-appropriate things. To start with, it was as simple as “Mummy has bugs in her blood.” Now she understands a lot more.

I have never come up against negativity, which I think is partly because I’m open about my situation. I’ve dated other HIV-positive people, but recently I met someone on Twitter who isn’t. It says on my profile that I write for beyondpositive magazine, but I had to check he knew what that meant. He did. It’s a relief when it doesn’t matter to people, but there’s still a lot of work to be done.

Steve Craftman, 58

Lives in Wales. He was diagnosed in 1987

There are three epidemics, in my view: the newly diagnosed, who are going to lead pretty normal lives; those who recovered from the early days – the 80s and 90s; and then there are the people like me, who survived but with a lot of health problems.

‘I’ve done a lot of grieving’: Steve Craftman. Photograph: Antonio Olmos for the Observer

Back then they gave us five years at the most. I made it through, but I’ve got many health problems, mainly due to the medication I took. I have osteopenia in my ankles and hips, which means I feel unsafe riding a motorbike now. The damage to my body is nobody’s fault – the doctors didn’t know what they were dealing with, and the drugs were so strong. You could say I fell out of the side-effect tree and hit every branch on the way down.

I’ve done a lot of grieving, lost a lot of friends and lovers. It’s not easy and it’s often lonely. In America they’ve come up with a name for it: Aids survivor syndrome – a bit like PTSD. I’m still here, though, nearly 30 years on. Am I tough? Not really. I think I’ve just been lucky.

I’ve had my fair share of prejudice over the years. I was living in Bristol 10 years ago with my partner, John. We had abuse and threats shouted at us, and our car was vandalised. The police advised us not to pursue it – they said we’d be better off moving on. We set up home in a tiny village in Wales, where we were more accepted than in the city. John died there, from Aids, in 2007.

I’m open about my situation. At a hospital appointment recently, the doctor asked if I was “out” about the fact that I have Aids. I turned round and showed her the “biohazard” symbol I had tattooed on the back of my neck last year. “I’m guessing that’s a ‘yes’ then,” she said.

Matthew Hodson, 47

Lives in London with his husband. He was diagnosed in 1998

‘If I can’t be upfront about it, who can?’: Matthew Hodson. Photograph: Antonio Olmos for the Observer

I was tested in 1998 after they announced at the International Aids Conference in Vancouver that combination therapy was effective. I suppose I needed to know that there was some treatment that would work first before I wanted to know. Back then, you were told that HIV might take five or 10 years off your life. Now, your life expectancy is the same: they call it “life altering”, not “life limiting”.

I didn’t take it very well and for a while I stopped having sex and felt dirty, diseased. But people go in different directions, and after I’d thought all the worst-case scenario stuff, about not making it to 50, I took control.

Starting new relationships was hard. There are more interesting things about me than the presence of a virus, but I can see that someone would want to know. Thankfully I’m married now, so I don’t need to worry about disclosure. If I wasn’t, I think I’d tell people straightaway. I have a job, I’m secure and I’m comfortably off – if I can’t be upfront about it, who can? In a way, it’s my responsibility.

As part of my job with I’m chief executive of the gay men’s health charity GMFA, so I often speak to recently diagnosed young men. They picture themselves wasting away like Tom Hanks in Philadelphia. We need to remember these images are part of history now – but there’s still a lot of bad information around. It’s because HIV is largely sexually transmitted and it’s often gay men who have it. There are still the remnants of deeply homophobic attitudes in this country. They’re not the prevailing voices any more, but it’s hard to drown them out completely.

It’s frightening to look back. If you were a young gay man in the mid-80s, you would have experienced a loss comparable to someone who survived the First World War. I knew 30 people who died during that period, but many men knew many more.

Jo Josh, 66

Lives in Reigate. Diagnosed in 2008. She has a 25-year-old daughter

‘I’ve become a kind of pin-up for ageing with HIV’: Jo Josh. Photograph: Antonio Olmos for the Observer

HIV infection conjures up an image in people’s minds. Most infection is via unprotected sex and for a lot of people that means there’s something nasty about it. I hate the word “disclosure”. I don’t feel I have to “disclose” if I don’t want to. I didn’t tell my daughter until I’d come to terms with it myself. She was 18 at the time, and I was in shock. It takes a couple of years. To start with you don’t know much about HIV, how much better the medication is these days. Then you start to realise it’s going to be OK.

I “came out” by going on BBC News for Body & Soul, an HIV charity I’m involved with. Afterwards the phone wouldn’t stop ringing. My friends were supportive, but very emotional. A lot of them used the “death voice”, telling me how brave I was. “No, really, I’m fine,” I’d say. There were a few silences though.

I’m just wrong for HIV: female, 60s, middle class. Some people can’t deal with it. I don’t yet need any medication and I feel like a fraud sometimes. I’ve become a kind of pin-up for ageing with HIV. I don’t talk about how I was infected, though. It starts to become a bit of a soap opera, and I’m more interested in being open about life with HIV than how I got it. That’s the only way we’re going to change perceptions.

Becky Mitchell, 40

Diagnosed in 2012. She lives in Bristol

I can’t say I was delighted when I was diagnosed, but I wasn’t totally freaked out. As part of my job with the Environment Agency I saw a lot of our former chairman, Lord Chris Smith, a high-profile HIV-positive man. He always seemed so active. I thought: maybe it’s not so bad these days.

‘There’s no shame. I just crossed paths with someone selfish’: Becky Mitchell. Photograph: Antonio Olmos for the Observer

I’d had a test when I found out my partner was HIV positive. He’d chosen not to tell me, so that was the end of our relationship. I wasn’t showing any symptoms, and I’d actually only been infected about two or three months before. With my CD4 count still at a safe level, I wouldn’t normally take medication at this stage, but I volunteered for a clinical trial where they wanted people with good counts and low levels of the virus. So I’m taking one pill a day.

Because of the medication, and the fact that I look after myself, my health is really good. I’m more careful, too: I used to push myself too hard when I was exercising – now I allow myself recovery time. Being open about my HIV is really important to me. There’s no shame. I’m a normal woman – I didn’t do anything risky; I just crossed paths with someone selfish. That could happen to anyone, and I want people to realise that. The only stigma I’ve ever come up against was actually within the NHS. I’d had a cycling accident and a young doctor asked me, in front of my mother, if I was an intravenous drug user. I was stunned, but it’s just ignorance, a lack of education.

I don’t feel any different physically, but HIV has been a wake-up call. I feel a sense of urgency: life is for living and I don’t want to waste time sweating the small stuff.

6 questions about HIV/AIDS that deserve more attention

AIDS pioneer Jay Levy sorts out medical myths from ideas that hold promise

By Joseph Caputo Posted on 14 April 2015

As HIV investigators work to control and eradicate the virus worldwide, certain myths and misconceptions about the disease have been embraced, while other concepts with merit have been left relatively unexplored, argues American HIV/AIDS pioneer Dr. Jay Levy.

Dr. Levy was one of the first researchers to isolate the AIDS virus and is Director of the Laboratory for Tumor and AIDS Virus Research at the University of California, San Francisco. He shares his views and recommendations in a commentary published today in the journal Trends in Molecular Medicine.

Dr. Levy calls on fellow researchers to continue questioning and not to lose sight of alternative strategies that could ultimately lead to a sustainable, long-term solution to HIV infection.

This paper may be controversial, but people need to know the other side of the story The train left the station and no one is stopping to see whether we did the right thing or not. I’m asking anyone who is involved with HIV/AIDS to pause and focus on some research and clinical areas that need more attention.

He presents six questions dealing with the science of HIV and with well-designed clinical trials that could offer new explanations and approaches for handling HIV/AIDS:

1. Is HIV infection a universally fatal diagnosis?

A small percentage of people with HIV infection have been observed to possess immune systems that keep the virus at bay for at least 10 years, and some for more than 35 years. Although an HIV diagnosis was once considered a “death sentence,” this is evidence that such long-time survivors or non-progressors can live a normal, asymptomatic life without intervention. “Importantly, we can learn a great deal about prevention of disease and infection by studying these exceptional people who have survived without AIDS or have warded off infection,” Dr. Levy writes.

2. Is the body’s innate immune response as important as the adaptive immune response?

Researchers have observed that some people who have been infected for many years do not develop disease. Others have been exposed on many occasions to HIV but do not become infected. In these cases, the innate immune system, the first line of defense against viruses, appears to play an important role. If the innate immune response fails, then adaptive immune activity — reflected by T and B cells — comes into action. Dr. Levy calls for increased attention to the innate immune system and its variety of immune cells and secreted factors. By focusing on this early activity against HIV, researchers have a better chance of discovering ways to prevent infection and disease.

3. How do CD8+ T cells combat HIV?

The immune system is a complex collection of cells with multiple mechanisms for taking down a pathogen. Even with 30+ years of HIV research, how immune cells behave when the virus enters the body is not fully understood. One immune cell of long-time interest to HIV/AIDS scientists is the CD8+ T lymphocyte, which is primarily thought to control HIV infection by killing infected cells. Dr. Levy discusses how this cell can employ an alternative mechanism for controlling HIV infection: it can secrete factors that suppress the virus without killing the cell, and then the infected cell can continue to function but without virus production and cell death. Because this immune response handles all HIV types, it would be important in approaches aimed at enhancing immune antiviral responses and in the development of a vaccine. Importantly, both activities of the CD8+ T cell need to be appreciated.

4. When should antiretroviral therapy be given?

There is no denying the success antiretroviral medications have had in lowering viral loads, reducing transmission, and helping people live a relatively normal life with HIV. Doctors often prescribe these drugs upon diagnosis, but Levy questions whether the long-term side effects, which include kidney and liver disorders, are worth it if a patient is asymptomatic. “Prescribing ART for a lifetime is like giving chemotherapy forever,” he writes. “Future studies may very well indicate that toxicities will eventually result in many treated individuals.”

”Prescribing ART for a lifetime is like giving chemotherapy forever.” — Jay Levy, MD

There also exist concerns regarding the recent trend of “treatment as prevention,” in which healthcare professionals give antiretroviral drugs to HIV-negative people to substantially reduce their odds of infection. This treatment strategy is new, and it is unclear whether a lack of adherence because of drug side effects, including nausea or fatigue, will affect the prevention of transmission. It also could lead to the development of drug-resistant viral strains. While recognizing the important success of ART, Levy calls on his colleagues to give more attention to drug toxicities and the potential emergence of drug-resistant viruses. “It seems misguided to just look at the short-term benefit,” he says.

5. What strategies should be considered for an HIV vaccine?

Dr. Levy argues that one of the greatest weaknesses of existing HIV-vaccine clinical trials — most reporting limited, if any, success — is that they are mainly looking to find a better antibody to neutralize the virus. On the basis of preclinical work, he believes that there are missed opportunities to invest in basic science and study other vaccine strategies, such as enhancing the antiviral responses of immune cells, particularly those of the innate immune system. He also advocates further studies of individuals who have been highly exposed to HIV but are not infected and the evaluation of killed-virus vaccines.

6. What approaches should be encouraged for an HIV cure?

A cure of HIV infection, which is exemplified in the “Berlin patient,” has stimulated approaches to achieving this goal for all infected people. This person received a stem cell transplant from a donor who was genetically resistant to HIV. Dr. Levy argues that some of the directions chosen to effect a cure “are not based on well-established experimental facts,” and eliminating a virus that has integrated itself into the genes of a cell requires a better understanding of the challenge.

Dr. Levy says he appreciates the pilot studies involving genetic editing that could mimic the treatment used for the “Berlin patient” and believes that the most immediate chance of success is one directed at enhancing the anti-HIV response of the immune system. “That strategy,” he explains, “could bring persistent control of HIV as seen in healthy infected long-term survivors. In this case, viral replication and its potential detrimental effects would be avoided — essentially the infected individual would be ‘functionally cured.’”

In his review of these issues in HIV/AIDS, Dr. Levy writes:

Researchers need to examine the basis of their observations and consider whether what they are seeing is really the answer or is part of what’s really there. We have to ask whether we are disregarding or missing what might be a much better answer because we’re grabbing at something that looks good today.

Read the article

Elsevier has made this article freely available until June 30, 2015: Levy, J: “Dispelling myths and focusing on notable concepts in HIV pathogenesis,” Trends in Molecular Medicine (June 2015)

Research studies by the author cited in this article were supported by grants from the National Institutes of Health, the California State University-wide Taskforce on AIDS, the James P. Pendleton Charitable Trust, the Hellman Family Foundation, the Campini Fund and the Campbell Foundation.

Trends in Molecular Medicine, published by Elsevier’s Cell Press, is a monthly review journal that facilitates communication between groups of highly trained professionals who share the common goal of understanding and explaining the molecular basis of disease as it relates to new clinical practice.

Elsevier Connect Contributor

Joseph Caputo (@sciencemetro) is Media Relations Manager for Cell Press (@CellPressNews), based in Cambridge, Massachusetts. He previously served as a science communicator for the Harvard Stem Cell Institute, the Marine Biological Laboratory and Smithsonian Magazine. As Media Relations Manager, he works closely with the media and public information officers to share the scientific breakthroughs published in Cell Press’s 31 journals. He is a graduate of Sarah Lawrence College in New York and received his MS in Science and Medical Journalism from Boston University.

Questions and Answers about HIV and AIDS

1. What is the difference between HIV and AIDS?

HIV (Human Immune Deficiency Virus) is a virus which you can get, mainly through unprotected (no condom) penetrative sex (where the penis is put into the vagina or anus). HIV can also be passed from a mother to her baby in the womb, during birth or by breast feeding. HIV invades, and eventually disables, the body’s natural defense against disease (the immune system), leaving you vulnerable to various infections and diseases that could, eventually cause AIDS.

Acquired Immune Deficiency syndrome means:-

Acquired – Something that you picked up from outside your body

Immune – Your body’s personal army to protect you from disease

Deficiency – Not enough fighting cells in your immune system

Syndrome – a group or collection of illnesses or diseases

Therefore, AIDS is a cluster of symptoms, caused by having HIV. You do not die from AIDS but from one of the diseases that AIDS allows to take hold in your body. As your immune system gets weaker, your body is less capable of fending off the illnesses that a healthy immune system can resist. (‘Know AIDS’, Metropolitan publication).

2. What are the different stages of HIV and when can treatment be started?

HIV infects cells in the immune system and the central nervous system. The main cell HIV infects is called a T helper lymphocyte. The T helper cell is a crucial cell in the immune system. It co-ordinates all other immune cells so any damage or loss of the T helper cell seriously affects the immune system.

HIV infects the T Helper cell because it has the protein CD4 on its surface. HIV needs to use CD4 to enter cells it infects. This is why the T helper cell is referred to as a CD4 lymphocyte. Once inside a T helper cell, HIV takes over the cell and the virus then replicates. In this process (which takes around a couple of days) the infected cell dies. New virus then seeks out new T helper cells to infect.

However, battling against this the immune system is rapidly killing HIV and HIV-infected cells, and replacing the T helper cells that have been lost.

HIV progression can generally be broken down into four distinct stages; primary infection, clinically asymptomatic stage, symptomatic HIV infection, and progression from HIV to AIDS.

Primary HIV Infection – Stage 1

This stage of infection lasts for a few weeks and is often accompanied by a short flu like illness which occurs just after infection. This flu like illness is sometimes referred to as sero-conversion illness. In up to about 20% of people the symptoms are serious enough to consult a doctor, but the diagnosis is frequently missed. Even if an HIV antibody test is done at this time, it may not yet be positive.

During this stage there is a large amount of HIV in the peripheral blood and the immune system begins to respond to the virus by producing HIV antibody and cytotoxic lymphocytes.

Clinically Asymptomatic Stage – Stage 2

This stage lasts for an average of ten years and as its name suggests, is free from any symptoms, although there may be swollen glands. The level of HIV in the peripheral blood drops to very low levels but people remain infectious and HIV antibodies are detectable in the blood.

Recent research has shown that HIV is not dormant during this stage, but is very active in the lymph nodes. Large amounts of T helper cells are infected and die and a large amount of virus is produced.

A new test is now available to measure the small amount of HIV that escapes the lymph nodes. This test which measures HIV RNA (HIV genetic material) is referred to as the viral load test, and it has an increasingly important role in the treatment of HIV infection.

Symptomatic HIV Infection – Stage 3

Over time the immune system loses the struggle to contain HIV. This is for three main reasons:

-The lymph nodes and tissues become damaged or ‘burnt out’ because of the years of activity;
– HIV mutates and becomes more pathogenic, in other words stronger and more varied, leading to more T helper cell destruction;
– The body fails to keep up with replacing the T helper cells that are lost.

As the immune system fails, so symptoms develop. Initially many of the symptoms are mild, but as the immune system deteriorates the symptoms worsen.

Where do opportunistic infections and cancers occur?

Symptomatic HIV infection is mainly caused by the emergence of opportunistic infections and cancers that normally the immune system would prevent. These can occur in almost all the body systems, but common examples are featured in the table below.
As the table below indicates, symptomatic HIV infection is often characterised by multi-system disease. Treatment for the specific infection or cancer is often carried out, but the underlying cause is the action of HIV as it erodes the immune system. Unless HIV itself can be slowed down the symptoms of immune suppression will continue to worsen.

Progression from HIV to AIDS – Stage 4

As the immune system becomes more and more damaged the illnesses that are present become more and more severe leading eventually to an AIDS diagnosis.

(Source: avert.org/hivstages:htm)

In South Africa, organizations, such as Medicines Sans Frontiers in Khayelitsha, have initiated projects to provide antiretroviral treatment to HIV positive individuals. Candidates can start treatment only when they have reached stage 4 or their CD4 count is below 200.

3. Why are women at higher risk for HIV?

The inside of a woman’s vagina is a natural incubator for HIV and is a much larger area than a man’s penis. Therefore, the risk of infection for a woman is much higher than a man. Also, women have been denied sexual rights in many cultures in our country. Many women are therefore disempowered and this is why they are afraid to make their partners wear condoms and practice safer sex. (‘Know AIDS’, Metropolitan publication).

4. Can 2 infected people have unprotected sex?

No, because there is the probability of re-infection or cross-infection. In other words, there are sub-strains of the virus and you can pass these to each other and worsen each other’s health. An HIV+ person, can become re-infected with a different drug-resistant strain (type) of HIV, if he / she does not practice protected sex. (‘Know AIDS’, Metropolitan publication).

5. What are the symptoms of HIV?

There are many different symptoms that can indicate HIV infection. However, many of these symptoms are similar to other common illnesses. The most common symptoms are very similar to the early stages of flu or a cold but without the runny nose.

They include:-
– Fatigue (feeling tired)
– Slight fever that lasts for a few weeks
– Headaches
– Muscular pain
– Not wanting to eat normally
– Feeling sick or nauseous
– Swollen glands in the groin or under your arms or at the back of your neck
– Sometimes a rash that will not go away
– Sometimes a dry cough that is unrelated to smoking
– Woman also tend to have a persistent vaginal thrush that doesn’t heal rapidly

If you have any of these symptoms and they continue for more than a few weeks, get to your doctor or clinic. Remember, early intervention is the key to living longer with HIV. (‘Know AIDS’, Metropolitan publication).

6. What diseases are associated with HIV?

AIDS is a whole bunch of illnesses that come about when your body has been infected with HIV and the body becomes overwhelmed. There are many illnesses associated with AIDS, some of the more common ones are listed below:

(‘Know AIDS’, Metropolitan publication).

7. Why do some people live longer than others?

There is not one scientific reason. What is known, however, is that with some people it’s genetic, while, with others, it’s a will to live. Each person is different and some people have a strong immune system that helps keep the HIV under control, and they become what is called a long-term non-progressor. Researchers are studying these people to find out how they’re able to keep the effects of HIV under control. Also, the people who have lived longer have made specific choices – sometimes unconsciously, which have ensured a longer life. These choices are all about reasons to live and seeing purpose and pleasure in their future. (‘Know AIDS’, Metropolitan publication).

8. Why are some infants born positive but later test negative?

When a child is born, it has the mother’s immune system for the first 12 – 18 months of life. In that same period, the child’s own immune system activates and this is when the child can go from HIV+ to HIV-. (‘Know AIDS’, Metropolitan publication).

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