HIV: The Storm

During the next week there were several crisis calls from Sarah as she danced toward, then, away from the idea of HIV testing. In the meantime, her gynecologist, Dr. Marten, had called, leaving several messages at Sarah's home and work to call her. Sarah was irate, focusing many of her feelings on Dr. Marten, rather than on her own fear.

On Tuesday Sarah came to the session. She reported a very stressful week with difficulty sleeping, increased irritability, shortness with her co-workers and snapping at Rebecca. She had several more bad dreams, but did not remember the content.

Finally, she heaved a sigh. "I am just going to do it, to call the test place and get a test. I can't stand the not knowing. I am just going to drive myself crazy if I don't do it!" We discussed the logistics of the test (where she would go; when; etc.) and Sarah left the session committed to being tested for HIV.

On Friday she called to arrange an emergency session. When we met she said she had gone to the testing site on Thursday and had a panic attack. She was in the waiting room, having decided on a number for her anonymous test, when she realized she had chosen Rebecca's birthday. She had gone to the door to flee when the counselor at the test site appeared. Sarah was ushered in and given information on HIV, and then her blood was taken for the test. Sarah would have to wait two weeks and then return. She was confused, as people often are when they are given information when they are in shock. She said the counselor talked about 'ELISA' and 'some kind of blot test' and 'false-positives'.

At our crisis session she was truly scared. She was having a hard time breathing, and reported that all she could think about was how stupid she had been, that she was an idiot, and that if she knew beforehand all the things about HIV that the counselor had told her, that she would never have had sex, ever! She would have had Rebecca by artificial insemination from semen that had been screened for HIV.

She said every time she looked into her daughter's eyes, all that she could imagine was that her daughter would have no mother.

I was going through my own parallel process with Sarah, as we so often do with our clients. I was recalling my own HIV test and all the anxieties and fears which were elicited. Surprisingly, Sarah never once asked my HIV status during the course of treatment. I think, initially, she was afraid of what the answer would be. If I was HIV+, that would be too overwhelming for her. If I wasn't, how could I understand what she was going through? You might want to stop and consider for a moment how you would respond if a client asked you about your HIV status.
I also was remembering an earlier time, before HIV was discovered, when the only decision was to take an AIDS test or not. There was no treatment. If the AIDS test was positive, it was a death sentence. The good news is that if you or your client is HIV positive, there is now treatment available.

Knowing this fact can save lives! People unclear on the window period can have HIV, test negatively, and expose others. Please make sure that you understand it; so you can educate your clients who have a negative test prior to the time period for the antibodies to appear before they go on to expose other partners.

Sarah was increasingly anxious as the time came closer for her HIV test results. She reported "making several deals with God, such as 'I will never lose my temper again with Rebecca if I am OK'" and looking for signs everywhere. "If I saw a hummingbird, that was a good sign. If the light turned red before I got to the intersection, that was a bad sign."

My job was to help Sarah manage her anxiety and to face the unknown. I knew that the uncertainty she was facing around the HIV test results would pale in the face of the uncertainty of a positive HIV diagnosis. Yet, each of us, every day, faces the unknown. Is today the day we die? It is exhausting to live on this edge; so mostly we forget. We go unconscious about the uncertainty of life. It is a great mystery when we die. Sometimes it takes a jolt, a lightning bolt such as an HIV test, to wake us up, to ponder the great mysteries of existence.

Sarah went back two weeks after her test and was told that her first test was positive, but that routinely a second, more accurate test was given to rule out false positives. Sarah again was seen for an emergency session, and began again the dance of denial and dissociation, coupled with great fear.

The first test given is usually the ELISA, or enzyme-linked immunosorbent assay. If this is positive, the Western Blot test is administered. Generally, a person is considered HIV positive only if both tests are positive. This is considered accurate 98% of the time.

Finding a Place to Get Tested for HIV

Your doctor or other healthcare provider can test you for HIV or tell you where you can get tested. Or, the following resources can help you find a testing location:

HIV Testing and Care Locator, locator.aids.gov
Centers for Disease Control and Prevention, 1-800-232-4636 (toll-free) or gettested.cdc.gov
Drugstores sell home testing kits

The only way to know for sure whether you have HIV is to get tested. CDC recommends that everyone between the ages of 13 and 64 get tested for HIV at least once as part of routine health care. Knowing your HIV status gives you powerful information to help you take steps to keep you and your partner healthy. This section answers some of the most common questions related to HIV testing, including the types of tests available, where to get one, and what to expect when you get tested.

Should I get tested for HIV?

CDC recommends that everyone between the ages of 13 and 64 get tested for HIV at least once as part of routine health care. About 1 in 8 people in the United States who have HIV don’t know they have it. People with certain risk factors should get tested more often. If you were HIV-negative the last time you were tested and answer yes to any of the following questions, you should get an HIV test because these things increase your chances of getting HIV:

Are you a man who has had sex with another man?

Have you had sex—anal or vaginal—with an HIV-positive partner?

Have you had more than one sex partner since your last HIV test?

Have you injected drugs and shared needles or works (for example, water or cotton) with others?

Have you exchanged sex for drugs or money?

Have you been diagnosed with or sought treatment for another sexually transmitted disease?

Have you been diagnosed with or treated for hepatitis or tuberculosis (TB)?

Have you had sex with someone who could answer yes to any of the above questions or someone whose sexual history you don’t know?

You should be tested at least once a year if you keep doing any of these things. Sexually active gay and bisexual men may benefit from more frequent testing (for example, every 3 to 6 months). If you’re pregnant, talk to your health care provider about getting tested for HIV and other ways to protect you and your child from getting HIV. Also, anyone who has been sexually assaulted should get an HIV test as soon as possible after the assault and should consider post-exposure prophylaxis (PEP), taking antiretroviral medicines after being potentially exposed to HIV to prevent becoming infected. Before having sex for the first time with a new partner, you and your partner should talk about your sexual and drug-use history, disclose your HIV status, and consider getting tested for HIV and learning the results. Learn more about how to protect yourself, and get information tailored to meet your needs from CDC’s HIV Risk Reduction Tool

How can testing help me?

The only way to know for sure whether you have HIV is to get tested. Knowing your HIV status gives you powerful information to help you take steps to keep you and your partner healthy.

If you test positive, you can take medicine to treat HIV to stay healthy for many years and greatly reduce the chance of transmitting HIV to your sex partner.
If you test negative, you have more prevention tools available today to prevent HIV than ever before.

If you are pregnant, you should be tested for HIV so that you can begin treatment if you’re HIV-positive. If an HIV-positive woman is treated for HIV early in her pregnancy, the risk of transmitting HIV to her baby can be very low.

I don't believe I am at high risk. Why should I get tested?

Some people who test positive for HIV were not aware of their risk. That’s why CDC recommends that everyone between the ages of 13 and 64 get tested for HIV at least once as part of routine health care.

Even if you are in a monogamous relationship (both you and your partner are having sex only with each other), you should find out for sure whether you or your partner has HIV.

See Should I get tested for HIV? to learn more about who is at high risk for HIV and should be tested more often.

I am pregnant. Why should I get tested?

All pregnant women should be tested for HIV so that they can begin treatment if they’re HIV-positive. If a woman is treated for HIV early in her pregnancy, the risk of transmitting HIV to her baby can be very low. Testing pregnant women for HIV infection and treating those who are infected have led to a big decline in the number of children infected with HIV from their mothers.

The treatment is most effective for preventing HIV transmission to babies when started as early as possible during pregnancy. However, there are still great health benefits to beginning preventive treatment even during labor or shortly after the baby is born.

What kinds of tests are available, and how do they work?

There are three broad types of tests available: antibody tests, combination or fourth-generation tests, and nucleic acid tests (NAT). HIV tests may be performed on blood, oral fluid, or urine.

Most HIV tests, including most rapid tests and home tests, are antibody tests. Antibodies are produced by your immune system when you’re exposed to viruses like HIV or bacteria. HIV antibody tests look for these antibodies to HIV in your blood or oral fluid. In general, antibody tests that use blood can detect HIV slightly sooner after infection than tests done with oral fluid.

It can take 3 to 12 weeks (21-84 days) for an HIV-positive person’s body to make enough antibodies for an antibody test to detect HIV infection. This is called the window period. Approximately 97% of people will develop detectable antibodies during this window period. If you get a negative HIV antibody test result during the window period, you should be re-tested 3 months after your possible exposure to HIV.
- With a rapid antibody screening test, results are ready in 30 minutes or less.
- The OraQuick HIV Test, which involves taking an oral swab, provides fast results. You have to swab your mouth for an oral fluid sample and use a kit to test it. Results are available in 20 minutes. The manufacturer provides confidential counseling and referral to follow-up testing sites. Because the level of antibody in oral fluid is lower than it is in blood, blood tests find infection sooner after exposure than oral fluid tests. These tests are available for purchase in stores and online. They may be used at home, or they may be used for testing in some community and clinic testing programs.
- The Home Access HIV-1 Test System is a home collection kit, which involves pricking your finger to collect a blood sample, sending the sample by mail to a licensed laboratory, and then calling in for results as early as the next business day. This test is anonymous. The manufacturer provides confidential counseling and referral to treatment.

If you use any type of antibody test and have a positive result, you will need to take a follow-up test to confirm your results. If your first test is a rapid home test and it’s positive, you will be sent to a health care provider to get follow-up testing. If your first test is done in a testing lab and it’s positive, the lab will conduct the follow-up testing, usually on the same blood sample as the first test.

A combination, or fourth-generation, test looks for both HIV antibodies and antigens. Antigens are foreign substances that cause your immune system to activate. The antigen is part of the virus itself and is present during acute HIV infection (the phase of infection right after people are infected but before they develop antibodies to HIV). If you’re infected with HIV, an antigen called p24 is produced even before antibodies develop. Combination screening tests are now recommended for testing done in labs and are becoming more common in the United States. There is now a rapid combination test available.

It can take 2 to 6 weeks (13 to 42 days) for a person’s body to make enough antigens and antibodies for a combination, or fourth-generation, test to detect HIV. This is called the window period. If you get a negative combination test result during the window period, you should be retested 3 months after your possible exposure.

A nucleic acid test (NAT) looks for HIV in the blood. It looks for the virus and not the antibodies to the virus. The test can give either a positive/negative result or an actual amount of virus present in the blood (known as a viral load test). This test is very expensive and not routinely used for screening individuals unless they recently had a high-risk exposure or a possible exposure with early symptoms of HIV infection.

It can take 7 to 28 days for a NAT to detect HIV. Nucleic acid testing is usually considered accurate during the early stages of infection. However, it is best to get an antibody or combination test at the same time to help the doctor interpret the negative NAT. This is because a small number of people naturally decrease the amount of virus in their blood over time, which can lead to an inaccurate negative NAT result. Taking pre-exposure prophylaxis (PrEP) or post-exposure prophylaxis (PEP) may also reduce the accuracy of NAT if you have HIV.

Talk to your health care provider to see what type of HIV test is right for you. After you get tested, it’s important for you to find out the result of your test so that you can talk to your health care provider about treatment options if you’re HIV-positive. If you’re HIV-negative, continue to take actions to prevent HIV, like using condoms the right way every time you have sex and taking medicines to prevent HIV if you’re at high risk.

How soon after an exposure to HIV can an HIV test detect if I am infected?

No HIV test can detect HIV immediately after infection. If you think you’ve been exposed to HIV, talk to your health care provider as soon as possible. The time between when a person gets HIV and when a test can accurately detect it is called the window period. The window period varies from person to person and also depends upon the type of HIV test.

Most HIV tests are antibody tests. Antibodies are produced by your immune system when you’re exposed to viruses like HIV or bacteria. HIV antibody tests look for these antibodies to HIV in your blood or oral fluid.
The soonest an antibody test will detect infection is 3 weeks. Most (approximately 97%), but not all, people will develop detectable antibodies within 3 to 12 weeks (21 to 84 days) of infection.
A combination, or fourth-generation, test looks for both HIV antibodies and antigens. Antigens are foreign substances that cause your immune system to activate. The antigen is part of the virus itself and is present during acute HIV infection (the phase of infection right after people are infected but before they develop antibodies to HIV).
Most, but not all people, will make enough antigens and antibodies for fourth-generation or combination tests to accurately detect infection 2 to 6 weeks (13 to 42 days) after infection.
A nucleic acid test (NAT) looks for HIV in the blood. It looks for the virus and not the antibodies to the virus. This test is very expensive and not routinely used for screening individuals unless they recently had a high-risk exposure or a possible exposure with early symptoms of HIV infection.
Most, but not all people, will have enough HIV in their blood for a nucleic acid test to detect infection 1 to 4 weeks (7 to 28 days) after infection.

Ask your health care provider about the window period for the test you’re taking. If you’re using a home test, you can get that information from the materials included in the test’s package. If you get an HIV test within 3 months after a potential HIV exposure and the result is negative, get tested again in 3 more months to be sure. If you learned you were HIV-negative the last time you were tested, you can only be sure you’re still negative if you haven’t had a potential HIV exposure since your last test. If you’re sexually active, continue to take actions to prevent HIV, like using condoms the right way every time you have sex and taking medicines to prevent HIV if you’re at high risk. Learn(https://www.cdc.gov/condomeffectiveness/male-condom-use.html) the right way to use a male condom.

Where can I get tested?

You can ask your health care provider for an HIV test. Many medical clinics, substance abuse programs, community health centers, and hospitals offer them too. You can also find a testing site near you by

calling 1-800-CDC-INFO (232-4636),
visiting gettested.cdc.gov, or
texting your ZIP code to KNOW IT (566948).

You can also buy a home testing kit at a pharmacy or online.

What should I expect when I go in for an HIV test?

If you take a test in a health care setting, when it’s time to take the test, a health care provider will take your sample (blood or oral fluid), and you may be able to wait for the results if it’s a rapid HIV test. If the test comes back negative, and you haven’t had an exposure for 3 months, you can be confident you’re not infected with HIV. If your HIV test result is positive, you may need to get a follow-up test to be sure you have HIV. Your health care provider or counselor may talk with you about your risk factors, answer questions about your general health, and discuss next steps with you, especially if your result is positive. See Will other people know my test result?

What does a negative test result mean?

A negative result doesn’t necessarily mean that you don't have HIV. That's because of the window period— the time between when a person gets HIV and when a test can accurately detect it. The window period varies from person to person and is also different depending upon the type of HIV test. (See How soon after an exposure to HIV can an HIV test detect if I am infected?)

If you learned you were HIV-negative the last time you were tested, you can only be sure you’re still negative if you haven’t had a potential HIV exposure since your last test. If you’re sexually active, continue to take actions to prevent HIV, like using condoms the right way every time you have sex and taking medicines to prevent HIV if you’re at high risk. Learn(https://www.cdc.gov/condomeffectiveness/male-condom-use.html) the right way to use a male condom.

If I have a negative result, does that mean that my partner is HIV-negative also?

No. Your HIV test result reveals only your HIV status.

HIV is not necessarily transmitted every time you have sex. Therefore, taking an HIV test is not a way to find out if your partner is infected.

It’s important to be open with your partners and ask them to tell you their HIV status. But keep in mind that your partners may not know or may be wrong about their status, and some may not tell you if they have HIV even if they know they’re infected. Consider getting tested together so you can both know your HIV status and take steps to keep yourselves healthy.

What does a positive result mean?

A follow-up test will be conducted. If the follow-up test is also positive, it means you are HIV-positive.

If you had a rapid screening test, the testing site will arrange a follow-up test to make sure the screening test result was correct. If your blood was tested in a lab, the lab will conduct a follow-up test on the same sample.

It is important that you start medical care and begin HIV treatment as soon as you are diagnosed with HIV. Anti-retroviral therapy or ART (taking medicines to treat HIV infection) is recommended for all people with HIV, regardless of how long they’ve had the virus or how healthy they are. It slows the progression of HIV and helps protect your immune system. ART can keep you healthy for many years and greatly reduces your chance of transmitting HIV to sex partners if taken the right way, every day.

If you have health insurance, your insurer is required to cover some medicines used to treat HIV. If you don’t have health insurance, or you’re unable to afford your co-pay or co-insurance amount, you may be eligible for government programs that can help through Medicaid, Medicare, the Ryan White HIV/AIDS Program, and community health centers. Your health care provider or local public health department can tell you where to get HIV treatment.

To lower your risk of transmitting HIV,

Take medicines to treat HIV (antiretroviral therapy or ART) the right way every day.
Use condoms the right way every time you have sex.
If your partner is HIV-negative, encourage them to talk to their health care provider to see if taking daily medicine to prevent HIV (called pre-exposure prophylaxis, or PrEP) is right for them.
If you think your partner might have been recently exposed to HIV—for example, if the condom breaks during sex and you aren’t virally suppressed—they should talk to a health care provider right away (within 3 days) about taking medicines (called post-exposure prophylaxis, or PEP) to prevent getting HIV.
Get tested and treated for STDs and encourage your partner to do the same.

Receiving a diagnosis of HIV can be a life-changing event. People can feel many emotions—sadness, hopelessness, and even anger. Allied health care providers and social service providers, often available at your health care provider’s office, will have the tools to help you work through the early stages of your diagnosis and begin to manage your HIV.

Talking to others who have HIV may also be helpful. Find a local HIV support group. Learn about how other people living with HIV have handled their diagnosis.

If I test positive for HIV, does that mean I have AIDS?

No. Being HIV-positive does not mean you have AIDS. AIDS is the most advanced stage of HIV disease. HIV can lead to AIDS if not treated.

Will other people know my test result?

If you take an anonymous test, no one but you will know the result. If you take a confidential test, your test result will be part of your medical record, but it is still protected by state and federal privacy laws.

Anonymous testing means that nothing ties your test results to you. When you take an anonymous HIV test, you get a unique identifier that allows you to get your test results.
Confidential testing means that your name and other identifying information will be attached to your test results. The results will go in your medical record and may be shared with your health care providers and your health insurance company. Otherwise, the results are protected by state and federal privacy laws, and they can be released only with your permission.

With confidential testing, if you test positive for HIV, the test result and your name will be reported to the state or local health department to help public health officials get better estimates of the rates of HIV in the state. The state health department will then remove all personal information about you (name, address, etc.) and share the remaining non-identifying information with CDC. CDC does not share this information with anyone else, including insurance companies.

Should I share my positive test result with others?

It’s important to share your status with your sex partners. Whether you disclose your status to others is your decision.

Partners
It’s important to disclose your HIV status to your sex partners even if you’re uncomfortable doing it. Communicating with each other about your HIV status means you can take steps to keep both of you healthy. The more practice you have disclosing your HIV status, the easier it will become.

Many resources can help you learn ways to disclose your status to your partners. For tips on how to start the conversation with your partners, check out CDC’s Start Talking(https://www.cdc.gov/actagainstaids/campaigns/starttalking/index.html) campaign.

If you’re nervous about disclosing your test result, or you have been threatened or injured by your partner, you can ask your doctor or the local health department to tell them that they might have been exposed to HIV. This is called partner notification services. Health departments do not reveal your name to your partners. They will only tell your partners that they have been exposed to HIV and should get tested.

Many states have laws(https://www.cdc.gov/hiv/policies/law/states/exposure.html) that require you to tell your sexual partners if you’re HIV-positive before you have sex (anal, vaginal, or oral) or tell your drug-using partners before you share drugs or needles to inject drugs. In some states, you can be charged with a crime if you don’t tell your partner your HIV status, even if your partner doesn’t become infected.

Family and friends
In most cases, your family and friends will not know your test results or HIV status unless you tell them yourself. While telling your family that you have HIV may seem hard, you should know that disclosure actually has many benefits—studies have shown that people who disclose their HIV status respond better to treatment than those who don’t.

If you are under 18, however, some states allow your health care provider to tell your parent(s) that you received services for HIV if they think doing so is in your best interest. For more information, see the Guttmacher Institute’s State Policies in Brief: Minors’ Access to STI Services.

Employers
In most cases, your employer will not know your HIV status unless you tell them. But your employer does have a right to ask if you have any health conditions that would affect your ability to do your job or pose a serious risk to others. (An example might be a health care professional, like a surgeon, who does procedures where there is a risk of blood or other body fluids being exchanged.)

If you have health insurance through your employer, the insurance company cannot legally tell your employer that you have HIV. But it is possible that your employer could find out if the insurance company provides detailed information to your employer about the benefits it pays or the costs of insurance.

All people with HIV are covered under the Americans with Disabilities Act. This means that your employer cannot discriminate against you because of your HIV status as long as you can do your job. To learn more, see the Department of Justice’s website.

Who will pay for my HIV test?

HIV screening is covered by health insurance without a co-pay, as required by the Affordable Care Act. If you do not have medical insurance, some testing sites may offer free tests. See Where can I get tested? for more information.

Who will pay for my treatment if I am HIV-positive?

See The Affordable Care Act and HIV/AIDS for more information.

Sarah had to deal with external realities in addition to her internal states. Since she didn't know when she contracted HIV, she was very afraid that her daughter Rebecca might also have it. Early in her pregnancy Sarah had been tested for HIV, as part of the routine blood work she received at the clinic where she went for prenatal care. In California, prenatal check-ups regularly include HIV testing, because administration of medication (currently zidovudine- ZDV or AZT) during pregnancy, labor and delivery and for the first six weeks of the infant's life can often prevent mother-to-fetus transmission of the virus. So, while Sarah knew she did not have HIV early in her pregnancy, she did not know if she had been infected during pregnancy.

Sarah was overwhelmed with her grief, her anxiety for her daughter, and with the question of when and how she became infected.

Sarah had been counseled regarding "partner notification" when she received her positive diagnosis, but so far she had been unable to do anything about it. She had the look of shock and horror, the DSM diagnosis of "looking like a deer in the headlights syndrome".

HIV DISCLOSURE POLICIES AND PROCEDURES
If your HIV test is positive, the clinic or other testing site will report the results to your state health department. They do this so that public health officials can monitor what’s happening with the HIV epidemic in your city and state. (It’s important for them to know this, because Federal and state funding for HIV/AIDS services is often targeted to areas where the epidemic is strongest.)

Your state health department will then remove all of your personal information (name, address, etc.) from your test results and send the information to the U.S. Centers for Disease Control and Prevention (CDC). CDC is the Federal agency responsible for tracking national public health trends. CDC does not share this information with anyone else, including insurance companies. For more information, see CDC’s Questions about Privacy, Insurance, and Cost.

DISCLOSURE POLICIES IN CORRECTIONAL FACILITIES
If you are serving time in a jail or prison, your HIV status may be disclosed legally under the Occupational Safety and Health Administration’s (OSHA) Standard for Occupational Exposure to Bloodborne Pathogens. State or local laws may also require that your HIV status be reported to public health authorities, parole officers spouses, or sexual partners.

(Source: https://www.aids.gov/hiv-aids-basics/just-diagnosed-with-hiv-aids/your-legal-rights/legal-disclosure/)

Several states now offer assistance to people newly diagnosed in letting their partners know of their HIV status.

Some places offer Partner Notification Assistance Program or Contact Notification Assistance Program. PNAP/CNAP counselors can assist the client with HIV in one of three ways:

Sarah did not know what to do. "When I think about calling Stan (her ex-husband), I get really scared. I am so afraid that he will try to get custody of Rebecca. When I think about getting Rebecca tested, I feel like dying. And when I think about calling back that witch, Dr. Marten, I shake. I want to kill her. And I am too afraid to call Joe or Alan (the two men she had been involved with since her marriage ended); I just don't know what to do. So, I do nothing. And if Sam finds out, I know he will leave me. I don't know what to do."

What exactly does the Tarasoff legal ruling mandate? In a 1976 case Tarasoff v Regents of the University of California,it was held that "the right to privacy ends where the public peril begins" and that "clear and immediate probability of physical harm" to others allows for the breaking of confidentiality. For a discussion on this, go to "Confidentiality, Privacy, and the 'Right to Know'" By Lawrence O. Gostin, JD, in which he states, "Is there any principled way to reconcile the dual obligations of the right to privacy and the right to know? If
the ethical and legal right to privacy is taken seriously, then it should yield only where absolutely necessary
to avert serious harm. Accordingly, the right to confidentiality should be near absolute in cases in which the
risk of contracting HIV is remote....The strongest claim to a right to know exists where there is an ongoing sexual or needle-sharing relationship. In such cases, the law should give health care professionals a power, not a duty, to disclose if,
in their judgment, it is necessary to avert a significant risk of transmission."
Another article, "Physician's Duties to Patients and Third Parties Further Defined" by Jason F. Kaar, Maj, USAF, JA reviews recent lawsuits arising from the Tarasoff decision and HIV and AIDS diagnoses. It is also advisable to consult with an attorney if you have questions or concerns about your obligation. Many professional organizations have legal counsel available who will not charge for a consultation.

ProPublica at http://projects.propublica.org/tables/penalties states that "At least 35 states have criminal laws that punish HIV-positive people for exposing others to the virus, even if they take precautions such as using a condom. Supporters of these laws say they deter people from spreading the virus and set a standard for disclosure and precautions in an ongoing epidemic. But critics say they thwart public health goals because they stigmatize the disease; undermine trust in health officials, who are sometimes enlisted to assist with criminal prosecutions; and fail to take into account the latest science surrounding HIV transmission.

Please check with your professional associations' legal department to ascertain what the law is in your state.

"I don't know!!"
Tears started rolling down her cheeks.
She had moved from paralysis into her feelings.
She cried for a while hunched over.
Finally, she looked at me.
"I need to do something, don't I?" I nodded yes. Sarah heaved a big sigh. "Okay", she said, "I guess I have the whole rest of my life to figure this out, and to feel all my feelings, but" (and here her voice get shrill and angry) "if I ever figure out how I got this, I will kill him. And if Rebecca has it, he is going to be one sorry dead man!"
Yet, in switching to anger, Sarah could now take action. She realized that she had not been given the choice. Whoever infected her did not let her know he was HIV positive, if he even knew. She did not want to do that to Sam, as she did not want to carry guilt on top of all her other feelings.
Sarah said she would do two things: she would get Rebecca tested, and she would tell Sam. She decided not to invite Sam to a therapy session. She would rather tell him herself. She agreed to call if she needed help.
She also said she would think about what the counselor at the clinic where she got tested had said about her options regarding informing past partners.

Sarah returned the following week in a towering rage. "I feel like I could kill Sam, Joe, Alan, Stan...it is no fair and it is horrible! I keep feeling like a volcano erupting. I can't sleep. I am burning up." She said that she had started to tell Sam, asking if he knew anyone with AIDS or HIV. "We were at home, Rebecca was at her Dad's house. I brought it up, kind of casually. Except I was shaking like a leaf. So I just asked him if he ever knew anyone that had it and he went ballistic! He started ranting and raving. He was totally homophobic, saying horrible things about gay men. I couldn't believe it. I have never seen this side of Sam, ever. He always seemed so tolerant and easy-going. So, I chickened out. I just couldn't tell him. And then I made a big excuse when he wanted to make love. I said I had another yeast infection. And I canceled our next date, saying I didn't feel well. I don't know what to do. I have to tell him. I know I do, but I just can't bear doing it. And I didn't get a blood test for Rebecca either!" Here Sarah crossed her arms over her chest and just glared at me.

What do I do now? Sarah was looking at me very antagonistically and I feared a repeat of the "shoot the messenger syndrome" that Sarah had done with Dr. Marten. I felt like I was walking on eggshells. If I told her what to do, she looked like she would leave therapy and never return. Yet, I also felt that lives were at stake: Sarah's if she didn't get treatment, perhaps Rebecca, if she was HIV positive, and Sam.
I quietly asked Sarah how I could help her.
She burst into tears.

"I was so afraid that you would yell at me or tell me how irresponsible I was being. I feel all these things and mostly really, really stupid for thinking this could never happen to me. The thing I want you to do I know you can't do, which is to make it all go away...Make it be the most horrible nightmare and then wake me up."

I too wished I had that power, but I don't. None of us has.

Sarah continued, "I guess really I am most afraid for Rebecca, that I have killed her life before she ever even had one. What happened is I was going to take her to the clinic, where I went for my anonymous test. We got into the car and she wanted to know where we were going. And I just couldn't do it, taking her to that place with those plastic chairs, and taking a number, and waiting. Then, a stranger would stick her with a needle. So, when she asked me where we were going, I started to cry. And I took her out for ice cream instead. So I guess I just failed everything all week."

We sat silently for a bit.

Then I asked Sarah how she was feeling. She started to cry, slumping into despair. She spoke of sleepless nights and of terrible nightmares when she did slip into sleep. "Can you believe it...instead of Rebecca getting into my bed, like she does sometimes, I wanted to get into her bed!" She was distracted at work and made so many errors that she said she had a bad headache and went home early one day. I raised the possibility of medication for her at this time, asking if she wanted a referral to a psychiatrist for some help with her depression and anxiety. She looked thoughtful and relieved at the possibility, but decided not to pursue it at this time. I think my offer felt like an acknowledgment to her that I sensed how much pain she felt.
"I feel so alone. No one that knows me knows that I have this awful thing, except for you."

We sat in the alone place. I was remembering an illustration from the Visconti Hours:

This image is of David supplicating God. It illustrates David's lament:
Save me, O God: for the waters are come in even unto my soul.
I stick fast in the mire of the deep: and there is no sure standing.
I am come into the depth of the sea: and a tempest hath overwhelmed me.
(Psalm LXVIII)

Jungians call this time the night-sea-journey or the dark night of the soul.

Sarah came in the following session quite depressed. She had a listless, flat quality about her. She had not been sleeping or eating, and had dark circles under her eyes. She reported continued nightmares, a common theme being swept under by huge tidal waves. She acknowledged that doing something was better that doing nothing; yet, she did not know where to start.

I remembered reading about the treatment of depression in people with HIV using a model called 'interpersonal psychotherapy'. This technique emphasizes mourning losses while encouraging patients to find new goals in life. A lot of the focus is on living out one's fantasies and to create as full a life as possible, no matter how much time remains.

I also knew that lives were potentially at stake if I did nothing; so, I became proactive with Sarah. I explained that it seemed there were three really important things she could consider:

1. To explore getting some medical treatment for herself.
2. To have Rebecca tested and
3. To notify Sam, her current boyfriend, and her past lovers of her HIV status.

Sarah looked relieved when I laid out a course of action for her. I supplied her with the name and number of a nearby clinic which specialized in HIV and AIDS treatment, hoping that she would feel less stigmatized there. We called the clinic during our session and made Sarah an appointment.

Sarah had great respect for Rebecca's pediatrician and agreed to tell him of her HIV status and have Rebecca tested by his office. She felt that the idea of Rebecca being tested by strangers would be distressing. She agreed to call his office the next day to set up an appointment.

I was somewhat surprised when Sarah said that she did not want my help in telling Sam or her ex-husband or former boyfriends about her diagnosis. She said that she would go back to the test site, and that she knew already what she was going to do. She was going to have the counselor inform her earlier partners that they had been exposed to HIV, but not identify Sarah. With her ex-husband she was going to tell him, probably at a joint session with the HIV counselor, but she would wait until she knew Rebecca's HIV status. And Sam, the almost fiancé? "I don't know. I have to tell him, but his reaction even to the idea about HIV was so extreme, it scares me." She decided to also have him attend a joint counseling session with the HIV counselor. I asked her why she didn't want to have the joint counseling sessions with me. She said she needed our sessions just for herself. She agreed to sign a release so that I could speak with the HIV counselor and with the staff at the clinic where she was going to seek medical treatment.

If you are in the position to tell someone they have HIV or AIDS or have been exposed, please read:

How to Tell Patients They Have (or Do Not Have) HIV

HIV InSite Knowledge Base Chapter
February 2004

Paul A. Volberding, MD, University of California San Francisco

Introduction

The almost limitless diversity of physician experience and attitudes, as well as variability from patient to patient in prognosis and social setting, makes the title of this chapter seem at first glance hopelessly naive. Yet, despite the obvious complexities, many common underlying themes can guide the physician conveying the diagnosis of HIV infection.

Physicians, for the most part, are members of the dominant culture, whereas HIV-infected patients generally belong to socially and politically isolated and stigmatized groups. While physicians are usually heterosexual, belong to the middle class, and do not use injection drugs, their patients with HIV disease are often homosexual, members of a racial or ethnic minority, or users of injection drugs, or sometimes all of these. Despite their many differences from clinicians, HIV-infected patients as a group often have two things in common: relative youth and the prognosis of a stigmatizing, chronic, disfiguring, transmissible, and potentially fatal disease. Clinicians should keep in mind these shared features and differences when informing patients of a diagnosis of HIV disease. This mind-set and the principles of honesty and practical support should guide the physician in this discussion. Obviously, the stress of conveying and receiving a diagnosis of HIV disease has been substantially reduced, but not eliminated, due to effective current therapy.

Honesty

The first goal in relaying a diagnosis is to empower the patient to participate in subsequent decisions by providing sufficient factual information in terms he or she can understand. This effort takes time, but the reward is increased trust between patient and physician. This trust and the active involvement of the patient can help in making the many difficult decisions that characterize management of HIV disease.

In discussing the diagnosis, first assess the patient's level of information and degree of anxiety. Many people at high risk have friends or acquaintances who are HIV infected or knew someone who died of HIV disease. Thus, they may be quite familiar with the disease, but they still need information pertaining to their specific cases. The physician should relay the needed information with language befitting the estimated level of medical sophistication of the patient, while also remembering that this is a very emotionally charged situation for the patient. The first discussion of the diagnosis should be direct, using lay terms in most cases, and brief. The physician should expect that the patient will not "hear" a detailed description of management options, which should be discussed or reviewed at subsequent visits. These visits should be scheduled promptly if the patient is not hospitalized. If the patient has a close friend or family member, that person should be invited to participate in discussing the diagnosis, because someone not so directly involved can retain more of what is said and thus help inform and support the patient after visiting the physician.

Medical information given to the newly diagnosed patient with an HIV-related opportunistic disease should include the name of the HIV-related diagnosis in medical terms (eg, Pneumocystis carinii pneumonia) as well as a lay description of the disease. The physician should discuss the relationship of any particular diagnosis to HIV infection in explicit terms.

Generally, the patient should be educated about the basics of HIV infection, CD4 cell depletion, and the importance of prolonged suppression of viremia as the cornerstone of HIV management. Again, this does not need to be done at the first visit in most cases. If antiretroviral therapy can be safely deferred, time taken for patient education may well result in improved decision making and medication adherence.

Although the process of patient education obviously must be individualized, it is possible to delineate some common principles.

Expect the diagnosis to be stressful even for the patient who is quite aware of the favorable outcome of current antiretroviral therapy. As mentioned, HIV remains a stigmatizing and serious chronic disease that will change the patient's life, particularly if advanced disease is already established.

Anticipate the patient's access to extensive information in the community--some of which is seriously outdated or simply wrong. Encourage the patient to discuss his or her beliefs, knowledge, and usual sources of information. Guide the patient to trusted individuals, organizations, Web sites, and other publications. Encourage the patient to consider all treatment options, and address misinformation in a supportive and nonjudgmental but direct way.

Anticipate the patient's fear of death. Particularly in the patient already symptomatic with advanced disease at the time of diagnosis, fear of death may be immediate and realistic. Without oversimplifying the situation, it is important to help the patient understand that HIV infection is now quite treatable in almost all cases. Help prepare the patient for the complexity of necessary therapy, after giving a realistic level of reassurance that this disease, once a certain death sentence, is now a manageable chronic disease.

Practical Support

One area of care that the physician can address immediately is the patient's practical needs. A newly diagnosed patient is, in many cases, suffering severe stress and needs to know where to turn for help. Often, this help is simply the availability of someone to talk to about the meanings of the diagnosis. HIV disease often affects people who have a limited array of close friends and family members. Thus, for many HIV-infected patients, help for this immediate need has come from volunteer, nonprofessional counseling organizations that offer opportunities to "talk out" the diagnosis in individual or group meetings. Although these resources are not suitable for all newly diagnosed patients, they are helpful for many; the physician should be aware of them so that patients can be appropriately referred. Additionally, nurses and social workers can provide invaluable assistance to patients throughout this difficult period.

Patients with HIV disease may also need housing, emergency financial help, or food. As with counseling, existing community organizations may meet these needs and, again, it is the physician's responsibility to appropriately refer patients to these agencies.

A final area to address is the assignment of power of attorney. Through this process, a patient empowers another person to participate in clinical management decisions with the physician if the patient is unable to do so. As with medical management options for any serious chronic disease, assignment of power of attorney is best addressed early in the course of HIV disease, before the occurrence of conditions that may affect the patient's ability to express treatment preferences.

Sarah came in the following week and as she started to talk, tears appeared. "I have been like this all week, ever since I called Becca's doctor. I just can't stop crying." The doctor had been very compassionate, meeting first with Sarah, then administering a blood test to Rebecca. "He was just so kind." Sarah sobbed. "He kept saying the important thing was that I take good care of myself. That HIV doesn't mean a death sentence, that there is a lot of new medicines now. But now I have to wait for Rebecca's results."

She continued, "And I went to the clinic that specializes in HIV, and it was really hard. I sat in the waiting room and figured everyone was staring at me, that they knew why I was there. Then I realized that is why they were there too. And all kinds of people, men of course, but also women. And the saddest thing were the teenagers. They really have no life. They probably can't ever have kids or anything."

Sarah is wrong about the ability to have children when one is HIV positive, but she is right about the growing group of adolescents and young adults with HIV.

Any clinician working with adolescents needs to be familiar with the special issues of teenagers and HIV. Please go to Insite's section on Adolescents and Youth

Sarah continued, "They were nice at the clinic. They asked me about depression, told me about the type of medicine that would help, and asked me if I wanted to join a group of people that had HIV. And they had lots of groups to choose from; newly diagnosed, women of color, young adults, all women's groups, men's groups, gay men's groups. They even have one group in Spanish for women who all got HIV from their husbands. It is so sad, but all these groups made me feel less alone."

"And they said to not delay in contacting the HIV counselor, to get help in telling Sam, Joe, Alan and Stan. They were kind of stern about me not yet telling, even though I haven't had sex since I was diagnosed. They said I had to tell or they would. So I called, and the counselor is anonymously notifying my old boyfriends, and Sam and I have an appointment next week. I just told Sam it was for couple's therapy, and he's meeting me after work and we'll go in one car. Actually, maybe we should go in two cars as I am not sure he'll want to ride back with me. And there is no sign on the building, so he won't know what it is about 'til we get there."

"At the clinic I had to fill out this huge questionnaire, of all the stuff I had done. The only "high risk" stuff I have done was unprotected sex. It still seems so unfair that I have this stupid thing. And I guess now that I am taking action, the fear of death is really big. I think all my shock and being overwhelmed, and wondering how to tell, I was just pushing away two really big things. One is where did I get HIV, and the other is death....."(here Sarah's voice got very soft; she sounded like a very little child) "I am so afraid of dying."

Sarah was ready to talk about her greatest fear: death. While HIV is not an immediate death sentence, it is to be expected that she will look at death and feel its presence more acutely. I have had friends and clients with HIV and AIDS who believed that these diagnoses were in fact a "life" sentence", not a death sentence. Alan articulated it very well when he said, "When you live all the time with 'death on your left shoulder', like Don Juan used to say, every moment is much more meaningful. Once I got over the terror of death, I live each day more fully. Each sunrise is somehow more amazing, knowing the ones I see are limited. In fact, that is true of everyone, but not everyone realizes it." Douglas, HIV+, told me "It is a paradox...I am actually healthier now with HIV than I ever was before. I don't do drugs, or smoke or drink anymore. I see a nutritionist and I get regular exercise and try to get enough sleep every night. It is so strange in a way, to have to get so sick in order to get well."

Sarah spoke of fearing death and of the great unknown. She was very upset that she would die when Rebecca was young. "I always imagined I would have other children. Now I am having to imagine Rebecca with no mother, and it breaks my heart."

Sarah was not ready to do it at this point, but over the next few months actively did investigate what kind of death she wanted. She was able to fill out an "advance medical directive" that specified the amount of care she wanted if there was no hope of prolonging her life. She also made out a "living will" and gave copies to her physician. For more information on this, go to

the End of Life Issues section of Getting Started: Basic Skills for Effective Social Work with People with HIV and AIDS by Michael Shernoff, ACSW.

Sarah came in the next week seething. "I went to the session with Sam, and I know I got it from him! I just know it! When the counselor started talking about HIV, Sam again started all that homophobic stuff, then he got up and started to leave. The counselor stopped him by asking what his story was. He got real embarrassed, then said a lot of men who have sex with men aren't gay. Then he left! He just walked out and I haven't seen or heard from him since. I just know he gave me HIV."

In fact, Sarah doesn't know she got it from Sam. She may never know the source of her exposure. Any of her former lovers might have exposed her, having themselves been exposed through sexual contact, either hetero- or homosexual, through drug use, or through blood products. Sam's reaction was telling, however. There are many people who have sex with partners of the same gender who do not identify themselves as gay, lesbian or bisexual. If you are interviewing someone, or assessing HIV risk factors, it is important to ask very specifically about sexual partners.
I also had to assess the Tarasoff implications here, as Sarah had said earlier that if she ever found out who infected her she would kill him. In the session, we explored her feelings of rage and betrayal. She realized that she did not know with certainty that Sam had infected her. She also didn't know really whether any of her lovers had used IV drugs, received blood transfusions, been sexually assaulted or been exposed to HIV in their earlier relationships.
Sarah said that while she felt like killing Sam, that of course, she would not.

Sarah's two previous partners, Joe and Alan, were notified by the counselor at the clinic that they might have been exposed to HIV. The source of their possible exposure, the time and location, would not be disclosed to them. We discussed a bit how painful it must be to receive that kind of call. Sarah felt badly they would hear it from a stranger, but realized her reserves were too low to meet with either man at this point.

Sarah got the wonderful news that Rebecca was not HIV+ from the pediatrician, who continued to encourage Sarah to take care of herself.

She met with Stan, her ex-husband, on her own, afraid that he would react like Sam had done. "I told him, and he was so concerned. He actually started to cry; he was crying for me." Sarah was able to tell him that Rebecca did not have HIV and expressed her fears that he would go for full custody of their daughter. Stan reassured her that the custody arrangements would not change. He actively encouraged Sarah to be proactive in getting medical treatment and offered to go on the Internet to find resources for her. Stan said he did not need an HIV test as he has been tested recently at the request of a woman he was dating. The test was negative, but he said he was so nervous that he vowed to have "no wet sex" (exchanging bodily fluids) with anyone unless they both tested negative initially, then 6 months later, and then only if they were both monogamous.
Stan introduced Sarah to a website called

THE BODY: An AIDS and HIV Information Resource. Sarah read:

Sarah and Stan starting more active 'co-parenting' as a result of their conversations around Sarah's diagnosis. They both made wills, and began to talk about 'disclosure', which is what, when, and how they would tell Rebecca about Sarah's HIV status.

Together they met with Rebecca's pediatrician, who suggested that they wait for Rebecca's questions and then answer only was she was asking. He reminded them that children have different levels of understanding at each developmental level, and for Rebecca to hear now, when Sarah was asymptomatic, that her mom was ill, would be very confusing. He also said that children are egocentric, which is necessary for development, and that Rebecca might blame herself for Sarah's illness. "Wait", he counseled, "and hope that by the time she needs to know, that there is a cure." He did say that when Rebecca was an adolescent to emphasize abstinence and sex education. He said there was a lot of information available now for teenagers. He makes sure all the adolescents in his practice are aware of HIV and how it is transmitted. "With teenagers, you can't really wait for them to ask because by then it might be too late."

Sarah had less success with her parents. Her father and mother both blamed her and kept reminding her that they had never approved of her divorcing Stan. (They seemed to conveniently forget how much they had opposed her marrying Stan as well). They needed to be educated about the transmission of HIV, a fact which Sarah realized when she visited them and they sprayed every surface that she touched with Lysol.

I was remembering my client George and his parents' reaction to his AIDS diagnosis. George was gay and had never come out to his Southern Baptist parents. When it was clear that he was very ill, he contacted them to let them know he had AIDS and was dying. His father went into a rage and never spoke with him again. His mother flew out to his side and was holding him when he died. She later helped his lover make a square for the AIDS Memorial Quilt by contributing some photographs of George as a boy.

The Quilt, or Names Project, was started in San Francisco in 1987. At that time many people who died of AIDS-related causes did not receive funerals, due to both the social stigma of AIDS felt by surviving family members and the outright refusal by many funeral homes and cemeteries to handle the deceased's remains. Lacking a memorial service or grave site, The Quilt was often the only opportunity survivors had to remember and celebrate their loved ones' lives. It now has more than 48,000 panels and 94,000 names; a growing testament to the deadly toll that AIDS has taken on the world. It weighs 54 tons, and is the largest community art project in the world.

Sarah was distressed by her parents' reaction, but got a lot of assistance from the support group she joined at the clinic whose specialty was HIV and AIDS. She chose to join a women's group because initially she was too angry with men to attend a mixed group.

Sarah was very pleased with the medical care she was receiving at the clinic. She never returned to Dr. Marten, the ob-gyn who had first suspected that Sarah was HIV+. It is beyond the scope of this course to discuss her medications as this field is rapidly evolving. She would talk about her T cell count (for medical terms, go to the Glossary of the

JAMA HIV/AIDS Information Center). The fewer T cells in a count the more likely a person will develop opportunistic infections or malignancies. A T cell count of 200 cells or less per cubic millimeter of blood is a diagnostic criteria for AIDS. There are currently 26 opportunistic infections and malignancies, which combined with the presence of HIV, meet the criteria for AIDS. These are called "AIDS indicator illnesses" by the

Center for Disease Control and Prevention.

At the clinic, Sarah began treatment with newly developed drugs for HIV, combined with stress reduction and nutritional counseling. On her own she explored alternative medicine, including homeopathic treatment and work with a naturopathic physician. She has remained quite healthy, after a scare in which she developed a sudden respiratory illness. She panicked and it was only after most of Rebecca's first grade classmates also got sick that she realized it was one of those viruses that spread like wildfire throughout schools. Sarah had a quick recovery, but the incident made her realize how vulnerable she feels about her health. She has had some unpleasant side effects from the medicine she is taking and her support group has been very helpful with sharing their own experiences and suggestions.

I remembered Mike's journey with AIDS. After the first bout of pneumocystis carinii pneumonia (PCP), the sores on his skin (KS, Kaposi's Sarcoma) continued to spread. Mike had many more hospitalizations as one opportunistic infection after another attacked his ravaged immune system. He lost an alarming amount of weight: over 100 pounds. His month was covered in fungal infections. He had numerous fevers and went blind. He developed AIDS Dementia Complex. He died held by his mother and his lover.
Today, there are fewer deaths in America like Mike's, as new medicines are developed. I am so grateful that the 10 years between Mike's death and Sarah's diagnosis have brought so much hope and healing to people with HIV and AIDS. I continue to wish for an end to this disease, not only in industrialized nations, but throughout the world. I wish that no one ever again has to die like Mike died.

Sarah had not told her co-workers about her HIV status because she was frightened of being stigmatized or fired. Through her support group, she became aware that people with HIV/AIDS are often discriminated against in employment, housing, access to health care, etc. (For more information, the ACLU has an

HIV/AIDS website. Another resource is an

on-line manual written by the AIDS Legal Referral Panel of the San Francisco Bay Area .)

As therapists, it is beyond the scope of our practice to offer legal or medical advice. But it can be very helpful to our clients when we are familiar enough with the issues and available resources to make appropriate referrals.

One year after her diagnosis Sarah had not yet begun dating. She felt it was too soon for her, and that she was still grieving what she lost. "I'm not ready, and I may never be ready. I don't know. The funny thing is, I am seeing how before I would just jump into relationships. Now I see the type of guy I used to be with, and I can't imagine being with someone like that. So the paradox is that having HIV has slowed me down. At first I thought looking death in the face would make me feel like living fully, taking big bites out of life. Instead, I am living fully, but in a quiet, inner way."

Sarah began to volunteer at an HIV/AIDS hotline and was able to be compassionate with men as well as women. She said "We're special, we who have HIV and AIDS. It doesn't matter to me anymore how someone got it, through sex or drugs or blood...the fact is, we are all in it together. We share the same experience, and have the same hopes and dreams. And nobody on this planet gets off alive. It is just that some of us have to look at it sooner. And maybe we're wiser, and maybe not, but judging and being judged doesn't help."

AIDS Diagnoses and Deaths

HIV Among People Aged 50 and Over

Testing