Providing HIV Care at Home


Being an at-home HIV caregiver means taking care of finances, paperwork, and health concerns. It also means protecting your loved one from illness.

Being a full-time caregiver of a person with HIV or AIDS requires additional responsibility and constant attention to situations that could pose a danger to someone with HIV. When HIV develops into AIDS, and AIDS progresses, caregiving can become even more difficult. Before things get too overwhelming, it’s important to think ahead and prepare for the care that your loved one will need.

Progression of AIDS and HIV
While HIV can advance to acquired immune deficiency syndrome (AIDS), not everyone with HIV will go on to develop AIDS. People who do develop AIDS frequently experience severe complications from the virus, and in most cases, AIDS is ultimately the cause of their deaths.

“Now that we can diagnose HIV earlier and we’ve got medicines to treat it, not all of these people with HIV go on to develop AIDS. They could potentially live a full life,” says Jennifer A. Shuford, MD, MPH, director of applied science at the Medical Institute for Sexual Health in Austin, Tex.

But in cases where HIV does progress to AIDS, perhaps because of resistance to medication or lack of access to treatment because of location or finances, it’s important for patients to have someone to rely on when complications arise. Eventually, the person’s physical deterioration becomes more severe and caregiving responsibilities increase.

“People become very debilitated as their immune system fails, and this is often accompanied by extreme weakness and dementia,” says Dr. Shuford. Life-threatening infections and cancer are also common in AIDS patients, as the immune system can no longer fend off bacteria and viruses that cause illness.

As the disease progresses and your loved one becomes weaker, you may need to help with toileting, bathing, and feeding responsibilities. You’ll also need to be able to recognize an AIDS-related emergency and call for emergency medical help when it’s needed.

HIV Caregiver Responsibilities
People with HIV will have many different needs throughout the course of their disease — some that you can provide, and some that you can’t. An HIV caregiver can help by:

  • Monitoring medications. Make sure your loved one is taking his or her HIV medications as prescribed.
  • Reducing the risk of transmission. If your loved one has a cut or a wound, begins bleeding, or vomits blood, you’ll need to carefully (wearing gloves) clean up the blood to prevent transmission to another individual in the home.
  • Getting a flu shot. You don’t want to bring home the flu, which can be extremely dangerous for an individual with an immune system weakened by HIV or AIDS. So protect your loved one — and yourself — by getting a flu shot.
  • Not allowing sick people to visit. Since people with HIV have compromised immune systems, they can easily pick up minor infections, which can quickly become serious. Keep anyone who is sick or sniffling away from your loved one.
  • Washing your hands. Limit your loved one’s exposure to germs by keeping your hands clean and always wash before you touch or feed your loved one.

HIV Caregiving: Making the Home Environment Safe and Comfortable
The most important changes a caregiver can make at home are those that keep your loved one safe and comfortable. This means preparing your home for a wheelchair if necessary, says Shuford, and taking precautions to protect an HIV patient who has developed dementia. Make sure that they can’t wander or fall down stairs, and put away any sharp objects or other hazards so they can’t cut themselves in the bathroom or kitchen.

HIV Caregiving: When It’s Time for Help
End-of-life planning is another responsibility of an HIV caregiver. While it’s difficult to think about, it’s one of the best things you can do to help your loved one and yourself if the disease advances quickly.

“The primary care physician or the HIV caregiver should be able to say when the patient is in the end stage,” says Shuford. “If they have six months or less to live, it’s appropriate to contact hospice care. Hospice care is very important and a huge boon for people who are in their end stages of life.”

Shuford notes that it’s the caregiver’s responsibility to talk to the doctor about the appropriate time for hospice care, rather than waiting for the doctor to suggest it. “It’s very important to contact [hospice care] before the patient thinks they need help rather than after. The [hospice professionals] are the ones trained at dealing with end of life care,” notes Shuford.

It’s impossible to predict how your loved one’s HIV disease will progress, what complications might arise, and what help you might need to provide. “Caregivers need to be open to whatever course it takes,” says Shuford. And in the meantime, you can take steps to keep your loved one comfortable, happy, and safe.

Formulating Your HIV Treatment Plan


HIV treatment doesn’t always begin immediately after diagnosis. Your doctor will run additional tests and consider several factors before prescribing HIV medication.

As if the news that you have HIV is not shocking enough, you may be amazed to walk out of your doctor’s office without HIV medications in hand. Yet during this period of “watchful waiting,” you still have a job to do in order to take care of yourself.

When Michael Kolber, MD, a professor of medicine and director of the Comprehensive AIDS Program and Adult HIV Services at University of Miami Miller School of Medicine in Florida begins a treatment plan with a patient, he first orders tests to:

  • Confirm the presence of HIV
  • Get a CD4 count (a measure of the healthy immune system cells being targeted by HIV)
  • Find out about viral load (how much active virus is in your body)
  • Identify the genotype of the HIV virus (a lab study of your HIV virus’s genetic makeup)

“The genotype of the virus tells us right off the bat if the patient has a drug-resistant strain,” said Dr. Kolber. This may not be an immediate concern, but it can limit your HIV medication options in the future.

Your Role in HIV Treatment

The success of your HIV treatment plan is dependent on your active participation.

“We encourage patients to get involved in their own care,” said Kolber. “The physician’s role is to educate them.”

There are many ways in which you should be actively involved in your care:

  • Take charge of your overall health by eating right, exercising, and getting enough sleep.
  • Use latex condoms when having sex (even if your partner also has HIV).
  • Learn about important HIV-related terms, such as CD4 count and viral load.
  • Visit your doctor and get appropriate lab work done on schedule.
  • Take the HIV medications you’re prescribed just as your doctor instructs.
  • Talk with your doctor about any HIV medication side effects you’re experiencing.

The HIV Treatment Plan

“If the patient’s CD4 count is 350 or above, that’s a person we’ll just watch,” he said. But once your CD4 count dips below 349, it’s time to talk about HIV medications. At this point, said Kolber, your willingness to take HIV medications can be a deciding factor. However, he noted, most patients are quite willing.

Research data are emerging that suggest that it may be beneficial to start HIV medications even earlier, when CD4 counts are above 350 — maybe even as high as 500 (“normal” CD4 counts range from 500-1600). A study indicated that starting antiretroviral therapy (ART) when CD4 counts are greater than 500 may improve HIV survival rates by as much as 94 percent. And a study published in 2011 in the Journal of Infectious Diseases reported more benefit with immediate versus deferred ART in people with early HIV infection. The concern doctors have, however, is that while ART is beneficial, the drugs also have many potential side effects. Experts say that more research is needed before a broad recommendation can be made to treat HIV earlier.

Current treatment guidelines help doctors develop an HIV medication plan based on your overall health and the type of HIV you have. You will likely be prescribed a combination of antiretroviral therapies called highly active antiretroviral therapy (HAART). This approach uses drugs from at least two of the different HIV medication types.

Then you and your doctor will continually monitor your CD4 count, viral load, and any side effects to find out whether the HIV medication is working. If it is working, CD4 counts will come up, viral load will go down, you will not have any disabling side effects, and you will probably stay on that drug combination for as long as possible.

If the regimen fails — which means that your CD4 counts go down and your viral load goes up — your doctor will try another combination of drugs until the numbers move in the right direction.

HIV medications can fail for a variety of reasons, but one of the biggest is that patients develop “medication fatigue” and stop taking their HIV drugs as prescribed.

You may also have to switch antiviral drugs if you experience severe side effects that can’t be dealt with any other way, said Kolber.

After that, you and your doctor will continue to watch your CD4 counts. If they dip below 200, you may be prescribed antibiotics in addition to HAART to prevent bacterial infections. Constant monitoring of your blood work and communication with your doctor are the keys to successfully keeping HIV under control.

HIV: Sooner Is Better for Treatment


Trials confirm that immediate intervention is crucial upon detection of HIV infection.

FRIDAY, Dec. 16, 2011 (MedPage Today) — For people with early HIV infection, immediate antiretroviral therapy appears to be more beneficial than deferring treatment until patients meet clinical guidelines, researchers reported.

In a trial of immediate versus deferred treatment, half of all patients who had treatment deferred needed therapy on medical grounds within 18 months, according to Christine Hogan, MD, of the Medical College of Wisconsin in Milwaukee, and colleagues.

In contrast, just 10% of those who had started therapy immediately and had a planned interruption after nine months needed to re-start treatment during the remaining nine months, Hogan and colleagues reported in the January issue of the Journal of Infectious Diseases.

The study was aimed at learning the effect of a period of immediate treatment versus delayed therapy on the point at which the amount of HIV in the blood levels off in the absence of medication. The set point is thought to be related to the severity of disease.

But the study was halted early, Hogan and colleagues reported, because the unexpectedly high rate of progression of the disease in the deferred-treatment arm made it impossible to evaluate the difference in set points between the groups.

“The rate of progression in the deferred treatment arm was surprising to us,” Hogan told MedPage Today in an email. “We had designed the study expecting fewer people to need treatment before the end of the study.”

“Unfortunately, the more rapid than expected progression prevented us from actually answering the question of whether or not earlier treatment lowered the virologic setpoint,” she added.

On the other hand, the high rate of progression is a “compelling” finding that adds to the evidence in favor of earlier treatment at least in this population of people early in the course of infection, Hogan and colleagues argued.

The study enrolled 130 of a planned 150 participants with early, but not acute, HIV infection, defined as occurring within six months of diagnosis. Volunteers were randomly assigned to get 36 weeks of triple-drug therapy, followed by 36 weeks off medication, or to treatment deferred until it was medically indicated.

“What we can say is that, in this study population of persons likely to have been infected within the past six months, progression to meeting criteria for treatment occurred rather rapidly,” Hogan said.

That fact may be useful, she said, to “patients and providers who are grappling with the decision of whether or not to initiate treatment immediately during primary HIV infection.”

The observation of rapid rate of progression after diagnosis should help inform patient-physician discussions, according to Harout Tossonian, MD, PhD, and Brian Conway, MD, both of the University of British Columbia in Vancouver.

In an accompanying editorial, they noted that “it is often not possible or medically indicated to start taking medications at first presentation. But the discussion can now be framed in an evidence-informed manner.”

Even if the decision is to delay therapy, they argued, “it is likely to be needed within the next 18 months, so the approach should be to actively plan for it … from the very beginning.”

While immediate treatment appears now to have individual benefits, including a delay in progression, it may also have wider importance in the light of the recent HPTN 052 trial, which showed that HIV therapy dramatically cuts transmission in heterosexual pairs.

In that study, treating the HIV-infected partner of a heterosexual couple reduced the risk of transmitting the virus by approximately 96%, so “the case could be made for antiretroviral therapy as a public health intervention,” Tossonian and Conway argued.

Questions to Ask Your Doctor About HIV/AIDS


Print this handy list of questions and take it with you to your next doctor’s appointment.

Questions to Ask Your Doctor About HIV/AIDS

  1. What is HIV and how does it cause AIDS?
  2. How is HIV transmitted?
  3. What are the symptoms of HIV and AIDS?
  4. What are the differences among the various HIV and AIDS tests? Which test do you recommend for me and why?
  5. If I know I’ve been exposed to HIV, should I get prophylaxis treatment to prevent infection? What does that involve?
  6. Does a negative test for HIV always mean no infection, or is a repeat test advisable for very recent exposures? How often should I be tested?
  7. Do I need additional diagnostic tests and evaluations for HIV, such as a urinalysis or kidney or liver function tests?

Questions You May Consider Asking After Being Diagnosed With HIV/AIDS

  1. How severe is my HIV or AIDS, and what’s my prognosis?
  2. Is my immune system relatively healthy right now? How will you monitor it?
  3. What treatment or treatments do you recommend?
  4. Will these treatments cure my HIV or AIDS?
  5. How long will I be able to maintain my health with HIV?
  6. What are T-cell (CD4) and viral load counts? What does PCR mean?
  7. How will you monitor my T-cell (CD4) and viral load counts, and how often?
  8. What are the long-term complications of HIV/AIDS?

How HIV Spreads


Knowing how you can become infected with the virus is the first step toward protecting yourself from HIV.

Infection with the human immunodeficiency virus (HIV) is a serious concern, but the risk of transmitting the virus to another person by everyday, non-sexual contact is very low.

HIV lives in a person’s bodily fluids, primarily blood, semen, or vaginal fluids, and a person generally can become infected with HIV in one of three ways:


  • Having sex with an infected person. Anal, vaginal, and oral sex all pose risks for HIV transmission. Men who have sex with other men accounted for about half of the estimated 56,300 adults and teenagers diagnosed with HIV in the United States in 2006, according to the latest estimates from the U.S. Centers for Disease Control and Prevention (CDC). Another third of those diagnosed were infected through high-risk heterosexual contact.
  • Using needles or syringes that have been used by a person with HIV.Injection drug use was responsible for the transmission of about 13 percent of all adult HIV infections in 2006, according to the CDC.
  • Exposure of a fetus or infant to a mother with HIV. HIV positive pregnant women can infect their babies with HIV before birth, during delivery, and after birth while breastfeeding. To prevent babies from becoming infected while they’re still in the womb, doctors can treat a pregnant HIV-positive woman withantiretroviral drugs. A caesarean section performed before labor starts and before a woman’s water breaks can help prevent a baby from getting the virus during the birthing process. Completely avoiding breastfeeding eliminates this third possible method of transmission of the virus from mother to baby.About 6,000 HIV positive women in the United States give birth each year. The combination of antiretroviral drug use, caesarean sections, and avoidance of breastfeeding has helped to reduce the rate of mother-to-baby HIV transmission among HIV-positive women to 1 to 2 percent.

You cannot get infected with HIV from toilet seats or water fountains, or by shaking hands or casual “dry” kissing on the cheek. Although it’s considered low risk, kissing with an open mouth could potentially transmit HIV from one partner to another if there is any blood in the saliva (such as from bleeding gums) or open sores in or around the mouth.

At one time, transmission of HIV through infected blood donations was a significant concern. However, the development of an effective blood test for HIV in the mid-1980s, as well as universal screening of all blood donors, has essentially eliminated this mode of transmission in the United States.

Who Is Hardest Hit by HIV?

Compared to the U.S. population as a whole, people diagnosed with HIV in 2006 were disproportionately African American (49 percent) and young (about one-third were between 35 and 44 years old). Men and women tend to become infected in very different ways: In that year, about two-thirds of the men diagnosed with HIV infection were exposed to the virus through male-to-male sexual contact. By comparison, about 80 percent of the women diagnosed in 2006 were exposed through high-risk heterosexual contact, for example, unprotected sex with a partner who had previously engaged in high-risk behavior and become infected himself.

Urban Myths About HIV Persist

More than 25 years after the first cases of HIV infection were reported, AIDS activists are still fighting “all the urban myths about transmission out there,” says Kali Lindsey, vice president for federal government affairs with the National Association of People with AIDS, an advocacy organization based in Silver Spring, Md. HIV is not spread through casual contact, and although the virus can be found in tears, sweat, and saliva, the CDC has never documented a case in which the disease was transmitted through these body fluids, he says.

To help lower the transmission of HIV, the CDC is advocating broader, more simplified testing guidelines. In making its recommendations, the CDC notes that people with HIV will be more likely to take steps to avoid spread of the disease once they know their HIV status.

How HIV Progresses to AIDS


If you’re HIV positive, you can live for years without the virus progressing to AIDS — if you follow your HIV treatment plan.

Once a person has been infected with the human immunodeficiency virus (HIV), the progress of the disease is influenced by factors both within and outside of the patient’s control. An effective form of HIV treatment, called highly active antiretroviral therapy (HAART), was introduced in 1996 and forever changed HIV disease from an almost certainly fatal condition to a difficult but long-term chronic illness.

Within a month or two after a person is exposed to HIV, he or she may come down with an illness that resembles the flu. Common symptoms of this illness include fever, headache, fatigue, and swelling of the lymph nodes in the neck and groin. Although the flu-like symptoms go away, a person in the early stages of HIV is still very infectious.

After the initial illness, a person may not experience any HIV symptoms for a long time, perhaps 8 to 10 years. However, 5 to 15 percent of people with HIV get sick more quickly than this, and a similar percentage remain symptom-free for longer than 10 years.

Staging HIV

The outward symptoms of HIV disease can look very different from one person to the next, so doctors use precise clinical tests to categorize HIV in one of three stages. The final stage of infection is acquired immune deficiency syndrome, or AIDS.

  • Stage 1: In stage 1, a person does not have any of the diseases associated with severe HIV infection (called an AIDS-defining disease) and a relatively high level of the immune cells that fight infection (called CD4+ T-cells, or simply CD4 cells).
  • Stage 2: In stage 2, there is still no AIDS-defining disease, but the level of CD4 cells has fallen dramatically.
  • Stage 3: In the final stage, AIDS, a person has at least one of the AIDS-defining diseases and a very low level of CD4 cells.

Signature HIV Symptoms

As HIV disease progresses and the CD4 count drops, but before the definition of AIDS is met, many people with HIV infection experience the following symptoms:

  • Sweats
  • Fevers
  • Swollen lymph nodes

When the CD4 count gets very low, the immune system can no longer protect the body against common infectious agents in the environment that would not normally cause illness. Certain cancers may also appear in HIV patients because of the body’s dramatically lowered immunity. When one of these conditions is diagnosed in someone with a CD4 count less than 200, it is said to be an AIDS-defining disease — therefore, the person now meets the U.S. Centers for Disease Control and Prevention’s (CDC’s) definition of having AIDS. The most common aids-defining diseases include:

  • Severe herpes simplex virus infections
  • Pneumocystis carinii pneumonia
  • Cytomegalovirus infection of the eye
  • Active tuberculosis
  • Yeast infection of the esophagus
  • Severe shingles outbreaks
  • Encephalopathy (brain inflammation)
  • Wasting syndrome
  • Cancer of the lymph glands
  • Kaposi’s sarcoma

A person with AIDS has a very weak immune system and frequently will come down with more than one serious, debilitating illness at a time.

Personal Characteristics Can Increase HIV Risk

The rate at which HIV progresses is different for each person, and can be influenced by many factors. Here are some facts:

  • Older people infected with HIV are likely to become sick more quickly than those who are younger.
  • How a person becomes infected with HIV can influence how quickly their HIV progresses. In one study, HIV progressed to AIDS most quickly among men who have sex with men. These men had a high rate of Kaposi’s sarcoma, a type of cancer that is rare among people without HIV. Injection drug users also often progress to AIDS faster than those who do not inject drugs.
  • Both men and women with multiple sex partners progress faster from HIV to AIDS.
  • A person’s immune system and genetics can affect whether they become infected with HIV after exposure and also how fast the HIV progresses.

Not everyone infected with HIV will necessarily progress to AIDS. In a study of the deaths of almost 500 HIV-positive people, only about 10 percent died from a disease strongly linked to AIDS. Frequently, the cause of death was a debilitating disease with a weaker association with HIV or a factor not related to HIV at all.

Between 1995 and 1996, the estimated remaining lifetime for a 25-year-old person with HIV was eight years. For the same person diagnosed between 2000 and 2005, the expected remaining time of life was about four times that, approximately 33 years. Many factors play a part in these dramatic gains in life span, particularly improved therapies and long-term behavior changes among people living with HIV.