What to Do If You Have Been Diagnosed

If you don't know what to do or who to go to, the AIDS Council's Client Services Department can assist you in taking the first step towards receiving medical care and treatment. The AIDS Council can also provide referrals to support services and community resources. For more information on Client Services, please click here or call us at 518.434.4686.

You’ve just found out that you have HIV. You’re probably feeling any number of very strong, mixed emotions. There is hope!

New treatments and medications mean longer, healthier lives for people with HIV. The more you know about this chronic illness, the more you’ll be able to work with your health care provider to manage your own health care.

Everyone approaches HIV in a different way, just as everyone has a lot of questions about HIV, what it means, what to do about it, and more. This site is the first step in helping to find the answers to some of those questions, but it should NOT be the last stop. You will need to work very closely with your doctor to decide what is right for you.

The following is a very simple, general overview of HIV information to help you get STARTED, but should NOT be consider medical advice or treatment.

Am I going to die?

With new medications and treatments, people are living longer, healthier lives with HIV and AIDS. Plus, there are new medications coming out all the time and a lot of research into new treatments options. If you work closely with your health care provider, follow your doctor’s treatment recommendations, and do the other things you need to do to keep your body healthy (exercise, eat right, reduce stress, get plenty of rest), your prognosis is good.

What do I do now?

If you haven’t done so already, you would benefit from finding an HIV/AIDS specialist, someone who knows a lot about HIV medications, treatments, and related illnesses. If you prefer to stay with your primary care provider, ask your doctor to work closely with an HIV specialist to ensure the best care possible. Also, since HIV is a chronic illness, you might benefit from talking with someone who can help you through this difficult time. Your primary health care provider can refer you to a counselor, social worker, or other mental health professional to give you support and help, especially as you begin the treatment process. You may also want to connect with a service provider in your area. This agency may be able to provide you with case management services, help with transportation and housing, provide you with support groups or information about the closest support group to help you through this confusing time.

What is HIV?

The Human Immunodeficiency Virus (HIV) is the virus that causes AIDS. The human body responds to viruses by producing antibodies. HIV uses some of these antibodies, in particular the T-Cells, to create an HIV factory and make more of the virus. Slowly, the virus begins to spread and weakens the immune system. This makes it harder for the body to fight off new infections. With proper treatment and care, a person can boost the T-Cell count back into the normal range, and can defeat the AIDS related condition, but the person will still have AIDS. This lets the doctor know how far the patient has progressed in this chronic illness. With proper care and treatment, people can still live a long time with AIDS.

How can I reduce the risk of infecting others with HIV?

There are several things you can do to reduce the risk of infecting others. Abstinence, not only from sex, but also from drugs and alcohol, is the best way of preventing transmission to others.

Use a male or female condom and/or a dental dam each time you engage in anal, vaginal, or oral sex. If stored and used properly whenever you engage in a sexual act, condoms and dental dams can be an effective barrier to HIV and some other STDs. Also, be sure to clean any sex toys you may be sharing to ensure that HIV won’t be transmitted this way.

You can reduce the risk of HIV transmission through sharing needles by never sharing your needles with someone else, and/or participating in the Expanded Syringe Access Program (ESAP) if you live in upstate New York or the Needle Exchange Program if you live in New York City. ESAP allows you to legally purchase up to 10 needles without a prescription from participating pharmacies. For more information about ESAP, you can call 1-800-504-2437 or visit the NYS DOH website. Learning how to clean your works properly (needle, barrel, cooker, cotton) and how to safely dispose of your needles can also reduce the risk of transmitting HIV to someone else. For more information about the ESAP or NEP programs and how to properly clean the works, see HIV/AIDS FAQs.

Try not to mix sex and drugs/alcohol. While drugs and alcohol alone can’t give you HIV or transmit HIV, drug and alcohol use often result in a decrease in inhibitions and poor decision-making abilities. This could result in unprotected sex or sharing needles without practicing risk reduction methods such as using condoms or using a clean needle.

What are T-Cells and why are they so important?

T-Cells, also known as CD4 cells, are an important part of the immune system’s response to disease. The T-Cells are like the “generals” of the antibody army. They send out a chemical message to the immune system that there is an “invader” in the body—a disease, bacteria, virus, etc—and the immune system makes antibodies to fight this invader. HIV uses the T-Cells as a host cell for making new HIV. It takes over the nucleus of the cell, changes the information in it, and directs the nucleus to make more HIV. Over time, this wears down the immune system, making it “deficient”. Doctors keep track of the number of T-Cells as an indication of how well your body is handling this disease and, if you are taking medications, how well the medications are working.

What is AIDS?

AIDS stands for Acquired Immunodeficiency Syndrome. AIDS is a very clinical diagnosis. It is a way that doctors can tell how far you have progressed in this chronic illness caused by HIV. There are essentially two ways that someone gets this diagnosis:

If a person is HIV positive and has less than 200 T-Cells in a sample of blood, that person will get an AIDS diagnosis. A person generally has an average of 1,000 T-Cells in that same amount of blood.
If a person is HIV positive and has one of the many AIDS Defining Illnesses or Opportunistic Infections associated with AIDS, that person would get an AIDS diagnosis. When HIV weakens the body’s immune system, many illnesses and infections take advantage of that poor defense and a person becomes sick.

With proper treatment and care, a person can boost the T-Cell count back into the normal range, and can defeat the AIDS related condition, but the person will still have AIDS. This lets the doctor know how far the patient has progressed in this chronic illness. With proper care and treatment, people can still live a long time with AIDS.

Can I delay the onset of AIDS?

There are a number of things you can do to help delay the onset of AIDS. Here are some ways:

•	Take control of the disease instead of letting the disease control you. Ask your doctor questions and be open and honest with your doctor about symptoms, illnesses, drinking or drug use, and your personal habits. If you are currently using drugs or alcohol and would like to quit, you might want to check out some of the drug/alcohol treatment programs in your area and see if one is right for you. Drugs and alcohol weaken your immune system.
•	Eat a well-balanced diet and don’t skip meals. You may want to meet with a nutritionist to help you plan your meals.
•	Exercise regularly to help reduce stress, improve your immune system, and make your body stronger.
•	Find other ways to reduce your stress (yoga, meditation, counseling) whatever is right for you.
•	Herbal treatments may help to boost your immune system, BUT if you are taking HIV medications, be sure to check with your doctor BEFORE you begin taking any herbal or vitamin treatments. Some herbs, vitamins, and even regular foods like garlic, interfere with the way some HIV medications work and may do more harm than good. Some research suggests that acupuncture is helpful in boosting the immune system. If you think acupuncture might be useful for you, talk with your doctor before beginning treatment.
•	If you are taking medications, take them EXACTLY as prescribed. This is extremely important; missed doses may result in HIV becoming resistant to medications. If you are having a hard time taking your medications or sticking to your regimen, talk with your doctor to see if there is another type of medication that will be easier to take and/or more appropriate to your lifestyle, but equally effective.
•	Educate yourself. Find out all you can about your illness, your medications, treatment options, and ways that you may be able to help keep yourself healthier, longer.

How do I use CD4 and Viral Load Tests to help me decide what to do next?

You will need to work very closely with your doctor to decide how you would like to move forward in your treatment. Along the way, the doctor may order tests to see what your CD4 (T-Cell) count is and to see how much virus is present in a sample of blood. Ask to see this information and have the doctor explain what it means for you. Depending on what your CD4 count and viral load counts are, you may want to start or delay starting on HIV medications, or you may need to change the medications you are currently taking. Ask your doctor a lot of questions, be open and honest about your health habits, tell your doctor what is working and/or not working in your current treatment, and make sure to follow the advice of your doctor.

When should I start on medications?

In the past, as soon as a person found out that he/she was HIV positive, doctors started the patient on HIV medications. Today, doctors have found that it may be better to wait until the CD4 count is at around 350 and there are about 55,000 copies of the virus in the sample before starting on medications. This is a general range, and NOT the exact standard for everyone. Each body is different, and again, you will need to work very closely with your doctor to decide when and if you should take medications.

Which HIV medications should I take?

Currently, there are six types of HIV medications: Entry Inhibitors, Nucleosides, NucleoTides, Non-Nucleosides, Protease Inhibitors, and Integrase Inhibitors. Doctors now recommend that patients take a combination of medications. This drug ‘cocktail” is called Highly Active Anti-Retroviral Treatment (also called HAART or ART). The kind of medications you take depends on your doctor and your specific needs. When discussing medication options, ask your doctor about each of the medications he/she is prescribing; how often you will need to take the medications each day; how to set up a convenient and easy to follow schedule for taking your medication; any possible side-effect from the medications; and what to do if you begin to experience any difficulties in taking the medications. You need to take the medications EXACTLY as prescribed, so working closely with your doctor is very important. You may want to find a support group to help you adhere to your medications. Getting friends and family involved to help you take your medications may also be a good idea. Research shows that the more people you have supporting you and helping you adhere to your medications, the better the results.

Why should I take more than one medication?

HIV gets into the body, takes over the T-Cell’s nucleus (the brains of the cell), and uses the T-Cell to create more HIV. In essence, it makes the T-Cell into an HIV factory. Each of the different types of HIV medications currently available- Entry Inhibitors, Nucleosides, NucleoTides, Non-Nucleosides, Protease Inhibitors, and Integrase Inhibitors- interrupts this factory process at a different stage. That way, if HIV gets past one type of medication, the next type of medication may be able to stop it. When the HIV replication process is interrupted, there is less virus being produced in the body. Less virus means the immune system may be able to rebuild itself and help you to stay healthier longer.

What about the side effects of the HIV medications?

HIV medications are very strong medicines. Sometimes, that means that people get very strong side effects. If you are someone who gets side effects from the medications you are taking, talk with your doctor about ways to manage those side effects and/or changing to a medication that may be less difficult to take. Often, after the introductory period of taking a medication, the side effects go away or subside to a more tolerable level. Regardless, you should talk to your doctor as soon as you begin to experience any side effects from your HIV medications. He/she will be able to work with you to come up with a plan for managing any difficulties you may have.

How can I pay for those medications?

If you live in New York State, you may be eligible for a program called ADAP (AIDS Drug Assistance Program) Plus. This program helps HIV positive people who qualify in a variety of ways, including paying for or helping to pay for:

•	Medications to treat HIV and associated infections & illnesses
•	Medical exams
•	Dental and eye care
•	Most outpatient services
•	Home Health Aides, skilled nursing, and homemakers
•	Medical equipment
•	Health insurance you may already have, or might lose if you lose your job

To find out if you are eligible and to obtain an application, call ADAP Plus on their free hotline: 1 (800) 542-2437 (TDD 518 459-0121/Relay Operator 1 (800) 421-1240). If you live outside of New York, contact your state’s Department of Health to find a similar program.

To receive assistance applying for ADAP contact the Health Insurance Access Program at 518-434-4686. If you live outside of New York State, contact your state’s Department of Health to find a similar program.

Do I have to tell my boss that I’m HIV+?

NO! You don’t have to tell anyone about your HIV status unless you want to. There are no laws requiring any employee to disclose his/her HIV status at work. If you think you may need some accommodations due to your HIV status, you may choose to talk with the Human Resource person at your agency, or to you supervisor. Before you do, you may want to contact a disability advocate to help you decide how, when, where and why you would disclose your HIV status. Change this sentence: In New York State, you can call the Commission on Quality of Care and Advocacy for Persons with Disabilities at 1-800-624-4143, or visit them online. They can answer any questions you may have about disability and the workplace, and they can point you in the right direction for finding and getting help with this matter.

How can I tell my former sexual or needle sharing partner(s) without them knowing I have HIV?

In New York State, there is a health department program called PNAP (PartNer Assistance Program); in New York City, this program is called CNAP (Contact Notification Assistance Program). This program offers a variety of options to help you notify former or current partner(s) - i.e. people who may have been exposed to HIV during sex with you or by sharing needles with you to shoot drugs (even insulin or steroids) or for piercing or tattooing. PNAP can help you to find the best way to notify your current or former partners. A trained counselor will talk with you about the options available, including having the PNAP counselor tell your partners without revealing your identity.

Are there any alternative medications or treatments I might be able to use?

Before starting on any treatment, including herbal remedies and vitamin/mineral supplements, you should always talk with your doctor. Some herbal supplements and foods such as grapefruit, garlic, and milk thistle, may interfere with medications used to fight HIV. As a result, you may end up hurting more than helping to fight HIV. That said, there are a number of alternative treatments that may be able to boost your immune system, thereby helping to fight off HIV. Recent research suggests (although there is no hard evidence to substantiate) that some common herbal remedies such as milk thistle, astralga root, and shitake mushrooms may boost your immune system. Another alternative treatment may be acupuncture, which also appears to help boost the immune system. Any activity that may reduce stress, such as yoga, meditation, and exercise, will also help to boost your immune system. Stress negatively affects the immune system. Check with your doctor before starting an exercise regime to help ensure it is right for you.

Where can I find out more information about HIV/AIDS?

First, you need to be aware that there are a number of unreliable sites on the web, so be careful when you go surfing for information. We did some web surfing for you and put together a list of some of the most reliable sites to help you understand HIV a little better. If you’re interested in reading up on HIV on the web, click here for our helpful links. If you would like to read more about HIV, there are several good books that are easy to read and understand.

Here’s a list of just some of those reliable books:

•	The Guide to Living with HIV Infection: Developed at the Johns Hopkins AIDS Clinic (Johns Hopkins Press Health Book) By John G., M.D. Bartlett, Ann K. Finkbeiner
•	The Amfar AIDS Handbook: The Complete Guide to Understanding HIV and AIDS By Darrell E. Ward, Mathilde Krim

Books for Kids

•	Come Sit by Me By Margaret Merrifield (Grades Pre K-3)
•	What's a Virus Anyway? The Kid's Book About AIDS By David Fassier, M.D. (Grades 1-5)
•	Alex - the Kid with AIDS By Linda Walvoord Giraard (Grades 4-6)