Human Immunodeficiency Virus

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HIV stands for “Human Immunodeficiency Virus.” It’s the virus that causes AIDS (Acquired Immunodeficiency Syndrome).

When it’s not treated, HIV infection causes progressive damage to the immune system. Fortunately, treatment today is highly effective, and deaths from HIV disease are now mostly preventable in countries where therapy is available and affordable.

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FAQs

Your prognosis is excellent! HIV infection is not the progressive, fatal illness it was in the ‘80s and early ‘90s. The memory of those horrible times, together with the stigma that still surrounds HIV infection, can make learning you’re positive harder than it has to be.

With the right treatment, HIV infection is now a chronic, manageable disease. If it didn’t come with so much emotional, social, and historical baggage, people would react to the diagnosis the way they might if they learned that they had diabetes or rheumatoid arthritis. Granted, these aren’t perfect analogies, since you can’t transmit diabetes or rheumatoid arthritis to others. On the other hand, treatment for HIV is now easier and more effective than treatment for either of those diseases.

Antiretroviral therapy (ART) is the term we use to describe the combination drug therapy-sometimes referred to as a “cocktail”-that’s been in use since the mid-90s. It’s also been called highly active antiretroviral therapy (HAART) because it essentially stops the virus from replicating (multiplying or reproducing). This keeps the immune system-the system in the body that fights infections and cancers-from being damaged further and allows it to recover. The development of ART is up there with the discovery of penicillin as one of the most important and effective medical achievements of the twentieth century, and treatment keeps getting better in the twenty-first.

ART has completely changed the outlook for people with HIV infection. There appears to be no time limit to the benefits of the therapy once you start. If you take your medications faithfully, you can keep HIV in check indefinitely, having to change therapy only because of side effects or because better drugs have come along. If you’ve just been diagnosed, you should plan on sticking around for a long time, living long enough to die of old age. Don’t quit your job and max out your credit cards or you may be in a rude awakening!

ART hasn’t been around long enough for me to promise that your lifespan will be exactly the same as it would have been if you weren’t positive, but I do feel comfortable telling my newly diagnosed patients that, together, we can almost eliminate the possibility that they’ll ever die of AIDS.

You can have a normal life… with some adjustments. Compared to someone without any chronic medical conditions, you’ll have more medical visits and will take more medications. However, treatment for HIV infection has become much easier than it was in the past.

Many patients now take just one or two pills once a day and see their physician for 20 minutes, two to four times per year. They’re busy with work or school, are able to travel, to stay physically active, and to maintain relationships.

The biggest adjustments are often the ones that have to do with your relationships with others. Friends and family members may have to be educated before they can treat you like they did before. Sexual relationships present a special challenge. Current partners, if they’re negative, will have to face their own fear of infection, a fear not all relationships survive. Entering into new relationship involves the complex issues of disclosure and the fear of rejection or loss of confidentiality.

It may be hard to believe now, but in time HIV infection may be low on your list of daily concerns, having little impact on the life you lead and the decisions you make. Getting to that point takes time, support, and sometimes counselling. You may not be there yet, but stick with it.

At a time like this, the last thing you may think you need is a “to do” list, but there are some important things you should do sooner rather than later, and keeping busy with constructive activities can help you cope with your new diagnosis.

  1. Notify your contacts. Anyone you might have infected or who might have infected you should be notified immediately.
  2. Find a health care provider.
  3. Get some lab tests. The most important tests to get right away are the CD4 count, viral load, and a resistance test.
  4. Educate yourself. Reading this book is a good start, but don’t stop there. You’ll find more sources of information in the appendix.
  5. Think about money. How are you going to pay for care? Do you insurance? What does it cover? If you’re not sure, talk to a social worker or case manager.
  6. Get support. Seek out the people in your life who you can talk to about HIV infection, and tell them. If there aren’t any, find a good counsellor, therapist, or support group. Don’t go through this alone!

Patient Comments:

Michael’s comment: “After my positive HIV test result, I saw a psychologist. I talked with him for a year before I got up the nerve to tell my family. Now that they know, we get along better, and I see them more often than I did before I was diagnosed. Therapy helped me to become more comfortable with myself. Facing a life-threatening illness brought up all the insecurities I’d ever felt about anything, and having someone outside of my family daily life to talk to helped a lot. As my best friend said, “This way you won’t run off all your friends.”

Telling people about HIV status is a big step, especially when you’ve just found out you’re positive. Some people should be told right away; with others, you have time to think it over.

It’s important to tell people you might have infected or who might have infected you—sex partners or people you’ve shared needles with. They need to find out so they can get tested. Your provider, counsellor, or case manager may also be able to help you inform partners. If those don’t seem like good options, health departments can notify your contacts and advise them to get tested without revealing your name.

Think about telling friends or family members you rely on for emotional support. It’s critical to have a support system when dealing with HIV infection. Think about the important people in your life. Will they be there for you? Will they respect your confidentiality? If so, think about telling them. Family members don’t need to know just because they’re family members. You pose no risk to them, and you may outlive them anyway. You should tell them if they’ll become part of your support network.

If you’re not comfortable telling friends or family members, then you need to look elsewhere. Ask about support groups, counsellors, peer advocates, or therapists in your community. Internet chat groups, while not the best source of reliable medical information, can be helpful places to share your experiences with others HIV-positive people in an anonymous setting.

You should also inform your health care providers including doctors, dentists, counselors, and therapists. They need to know your HIV status to be able to take care of your properly. If you have a provider you don’t feel you can tell, then it may be time to change providers.

You don’t have to tell to your boss, your co-workers, your plumber, or the guy sitting next to you on the bus.

Comments from Patients

Michael’s comment: Sometimes I had to console the people I chose to tell. I found myself having to take on the supportive role, rather than feeling supported. I also found that no one kept my secret. Be prepared.

Rose’s comment: Be careful who you tell, and tell them carefully. When I was first diagnosed 20 years ago, I told my mother and one of my sisters. They gave me a lot of support in the beginning, but they were afraid to let anyone else find out. My sister told people I would be dead from a brain tumor in 6 months. My mom would only invite me and my kids over when no else was around. We had to drink out of paper cups, eat off paper plates, and take out our own garbage. When I didn’t die in 6 months, my sister stating telling people that my daughter and I were positive thinking she was protecting the community.

Things got better for me when I started speaking publicly about HIV. I talked about the discrimination I faced within my mom and family. As my family got educated, they became more supportive. They apologized for the way they treated me, but I still felt angry.

I wound up taking care of my sister when she got cancer. I didn’t show my anger because she was dying and I loved her. I wish I’d been treated the same way.

If you’ve just been diagnosed with HIV infection but are feeling well, you should keep working. You’ve got a long life ahead of you, and you’re going to need the money and insurance, not to mention the opportunity to remain productive and to maintain a sense of purpose.

If you’re sick, you may be disabled. Your disability is likely to be temporary if you haven’t started SRT yet because you’ll probably get a lot better once you start therapy. However, HIV infection can also lead to permanent disability despite treatment, especially in people with advanced disease, or in those who develop severe complications that have long-lasting consequences

You may qualify for temporary or permanent disability payments either through your employer, private disability insurance, Social Security Disability Insurance (SSDI), or Supplemental Security Income (SSI). Talk to your provider, a social worker, or a case manager about what you might qualify for. If you intend to keep working but expect frequent absences due to illness or medical visits, you should consider filing for benefits under the Family Medical Leave Act (FMLA), which will protect your job and benefits. Information on FMLA is available online or through your employer’s human relations department.

Many HIV-positive people are now doing well but qualify for permanent disability because of complications that happened years ago. Some of them aren’t working, while others have chosen to give up their disability and go back to work. This can be a tough decision. It‘s hard to go back to work after years of not working, to explain long gaps in your employment history to a prospective employer, to give up a steady income, and to give up other benefits that often come with being on disability, including Medicaid. On the other hand, disability payments aren’t guaranteed for life. Applications have to be renewed frequently, and unless your medical records indicate that you’re currently disabled, the checks may stop coming someday. If you feel you’re able to return to work after a period of time on disability, there are federal and state transition programs that offer return to work programs and benefits. If you’re wrestling with this decision, talk it over with your provider, social worker, or case manager.

Patient Comments:

Michael’s comment: When I was diagnosed, I was risk enough to get SSDI benefits. SSDI stinks. The pay is bad, for one thing. And wait until you meet a prospective partner who asks, “ so, what do you do?” Medicate doesn’t kick in until you’ve been getting SSDI for 2 years, so I didn’t have insurance, which was worrisome. When my health improved, I returned to work, and I’m glad I did. Work gives me a sense of purpose. It’s fun, and the pay is better. When Mr. Right asked me where I work, I didn’t have to look down at my shoes and mumble.

Rose’s comment: Working makes me feel like I’m making a contribution. I’m a part of society and am living a normal life. Not everyone can work, but for me, it’s part of my therapy and keeps me alive. My work gives me a goal and a purpose. It’s also fun to prove people wrong who told I’d be too sick to work.

Routine HIV testing is now recommended for all adults and adolescents, which means that almost everyone should know his or her HIV status. You could disregard this recommendation if you’ve never had sex or shared needles, but as a society we’d be a lot better off if we stopped worrying about “risk factors” and just tested everybody. We have a simple, cheap, highly accurate test for a disease that’s spread from person to person, is highly treatable, and is fatal if untreated. It’s a crime that so many people don’t get diagnosed until they’re sick with advanced HIV infection.

People sometimes get tested because they’re afraid they might have been infected from a specific event. A negative test 3 months after exposure is highly reassuring. If you need to be 100% sure, get another test at 6 months. Better yet, if you’re sexually active—and especially if you’re having unsafe sex—it makes more sense to get tested every 6 to 12 months rather than try to time the test based on the exposure, which can drive you (and your medical provider) crazy.

Having just recommended that everyone get tested, it may seem redundant to list other reasons for testing, but here goes. Testing is especially recommended for people who’ve had sexually transmitted diseases (STDs), viral hepatitis, tuberculosis, shingles, or problems that could be caused by HIV infection, such as weight loss or chronic diarrhea. All pregnant women should be tested since treatment can prevent transmission to their infants.

HIV stands for “human immunodeficiency virus.” It’s the virus that causes AIDS (acquired immunodeficiency syndrome). HIV is passed from person to person through sexual contact, blood exposure, childbirth, or breastfeeding.

HIV is a retrovirus, a virus that contains enzymes (proteins) that can turn RNA, its genetic material, into DNA. It’s called a retrovirus because this is the converted (transcribed) into RNA. After infection, HIV RNA gets turned into DNA by the reverse transcriptase enzyme. The DNA is then inserted into the DNA of human cells. That DNA can then either be used to create new viruses, which infect new cells, or it can remain latent in long-lived cells, or reservoirs, such as resting CD4 cells. HIV’s ability to remain latent is what allows it to persist for life, even with effective treatment. It’s what has kept us from finding a cure.

When it’s not treated, HIV infection causes progressive damage to the immune system and is almost universally fatal. It is the world’s most serious pandemic (global epidemic), and there are no immediate prospects for either a cure or a preventive vaccine. Fortunately, treatment today is highly effective, and deaths from HIV disease are now mostly preventable in countries where therapy is available and affordable.

Research now shows that HIV-1*, the most common kind of HIV worldwide, first infected humans in sub-Saharan Africa at some point in the first half of the twentieth century. It was transmitted from chimpanzees, probably when people came into contact with chimp’s blood while hunting or butchering. HIV probably remained confined to Africa for many years, in part because travel within and from Africa was uncommon. We have definite proof of human infection with HIV in Africa dating back to 1959.

The virus eventually spread beyond Africa, probably entering the United States in the mid to late 70s. Unusual cases of rare infections and cancers began to be seen in gay and bisexual men between 1979 and 1981, and the AIDS epidemic is said to have begun in 1981, when these reports first appeared in medical journals, making it clear that there was an emerging epidemic. HIV was discovered in 1983, leading to a blood test and eventually to treatment.

The disease was originally reported in gay and bisexual men, but the “risk groups” were later expanded to include injection drug users, haemophiliacs, and Haitians. It eventually became clear that “risk behaviours” were more important than “risk groups”. People could be infected through unprotected sex, exposure to infected blood, or through labor or breast feeding. It’s now estimated that more than 40 million children and adults are infected with HIV worldwide.

HIV causes illness mainly by damaging the immune system. It can infect many human cells, but the most important target is the CD4 lymphocyte (also known as the CD4 cell, T-helper cell, or helper cell). The CD4 cell is a type of white blood cell (WBC) that is responsible for controlling or preventing infection with many common viruses, bacteria, fungi, and parasites, as well as some cancers. HIV infection leads to destruction of CD4 cells. Over time, the number of CD4 cells (the CD4 count) declines. Although it may take years, the CD4 count eventually becomes so low that there aren’t enough cells to fight infection, which allows symptoms or complications to occur. The speed at which the CD4 count falls varies from person to person and depends on a number of factors, including genetic characteristics, characteristics of the viral strain, and the amount of virus in the blood (viral load).

The reason for the loss of CD4 cells still isn’t completely understood. It’s not simply a matter of HIV infecting and directly killing the cells, because the proportion of cells that are infected is small. Scientists now believe that HIV infection may cause a chronic immune activation (stimulation of the immune system) that leads to a gradual reduction in the number of CD4 cells.

In addition to damaging the immune system, HIV can directly affect many of the body’s organ, such as the nervous system and the kidneys. It can also cause weight loss, night sweats, and diarrhea. When deaths due to AIDS were common, it was often said that people didn’t die of HIV itself, but one of its complications, such as a cancer or infection. While that may have been technically true in most cases, HIV infection was still the underlying problem that led to death from AIDS.

Everyone who has AIDS has HIV infection, but not everyone with HIV infection has AIDS. AIDS stands for acquired immunodeficiency syndrome. It’s “acquired” because you only get it by being infected with HIV from someone else who has got it. “Immunodeficiency” means it causes damage to the immune system. It’s called a “syndrome” because in the years before HIV was discovered and identified as the cause of AIDS, we recognized a collection of symptoms and complications, including infections and cancers that occurred in people who had common risk factors.

The term AIDS was coined in 1982. HIV hadn’t been discovered yet, so there was no way to know whether people were sick until they were truly sick. Someone was said to have AIDS if he (and it was mostly men back then) developed one of a long list of opportunistic infections and cancers that don’t occur in people with healthy immune systems. After HIV was discovered and a test became available, being HIV-positive was added to the definition of AIDS. In 1993, the Centers for Disease Control and Prevention (CDC) expanded the definition of AIDS to include people with CD4 counts of less than 200.

Avoid the term “full-blown AIDS”. It’s old-fashioned, unnecessarily scary, and doesn’t mean anything other than AIDS. In fact, the word AIDS isn’t all that useful either. If you’re HIV-positive, the disease you have is HIV infection or HIV disease. AIDS just refers to a more advanced stage of that disease. Treatment can prevent HIV infection from turning into AIDS, and it can restore the health of people with AIDS. In the eyes of organizations and scientists who keep track of the epidemic, once you have AIDS, you’ll always have AIDS. But what matters more to your provider—and should matter more to you—is how you’re doing now.

When people get HIV and don’t receive treatment, they will typically progress through three stages of disease. Medicine to treat HIV, known as antiretroviral therapy (ART), helps people at all stages of the disease if taken the right way, every day. Treatment can slow or prevent progression from one stage to the next. It can also dramatically reduce the chance of transmitting HIV to someone else.

Stage 1: Acute HIV infection

Within 2 to 4 weeks after infection with HIV, people may experience a flu-like illness, which may last for a few weeks. This is the body’s natural response to infection. When people have acute HIV infection, they have a large amount of virus in their blood and are very contagious. But people with acute infection are often unaware that they’re infected because they may not feel sick right away or at all. To know whether someone has acute infection, either a fourth-generation antibody/antigen test or a nucleic acid (NAT) test is necessary. If you think you have been exposed to HIV through sex or drug use and you have flu-like symptoms, seek medical care and ask for a test to diagnose acute infection.

Stage 2: Clinical latency (HIV inactivity or dormancy)

This period is sometimes called asymptomatic HIV infection or chronic HIV infection. During this phase, HIV is still active but reproduces at very low levels. People may not have any symptoms or get sick during this time. For people who aren’t taking medicine to treat HIV, this period can last a decade or longer, but some may progress through this phase faster. People who are taking medicine to treat HIV (ART) the right way, every day may be in this stage for several decades. It’s important to remember that people can still transmit HIV to others during this phase, although people who are on ART and stay virally suppressed (having a very low level of virus in their blood) are much less likely to transmit HIV than those who are not virally suppressed. At the end of this phase, a person’s viral load starts to go up and the CD4 cell count begins to go down. As this happens, the person may begin to have symptoms as the virus levels increase in the body, and the person moves into Stage 3.

Stage 3: Acquired immunodeficiency syndrome (AIDS)

AIDS is the most severe phase of HIV infection. People with AIDS have such badly damaged immune systems that they get an increasing number of severe illnesses, called opportunistic illnesses.

Common symptoms of AIDS include chills, fever, sweats, swollen lymph glands, weakness, and weight loss. People are diagnosed with AIDS when their CD4 cell count drops below 200 cells/mm or if they develop certain opportunistic illnesses. People with AIDS can have a high viral load and be very infectious.

*Information is from the CDC Website www.cdc.gov

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