OK: you’ve just heard the nurse say, Yes, you’re HIV-positive. You’re leaving the place where you were tested feeling numb – it hasn’t sunk in yet. What are the first things you need to know?
First, testing positive is not a death sentence any more. Your life will change, and you will have to work hard with your doctor, but you can look forward to a pretty normal way of life and length of life.
Second, lots of other people have already gone through this, and there are a lot of support networks out there. You can visit sites like TheBody to find hotlines and read advice from others who have been where you are now. See our USEFUL LINKS AND HELP NEAR YOU! for links where you can find answers to a lot of the questions you are going to have.
So take a deep breath, and take a little time to be nice to yourself, before you start working on specifics like finding the right doctor. Unless, of course, getting to work is how you deal with news you really didn’t want, in which case, dive right in! But most people need a little time. If you do, take it.
If we’re closed, click HERE to find a hotline near you.
IF YOU THINK YOU’RE LOSING CONTROL, CALL 911!
Think you may have been exposed to HIV in the last 24 hours? Click HERE.
Never needed to have a regular doctor before? You do now – even if you’re doing well, you’ll need to check in with your doctor every few months for the rest of your life.
Do you have a regular doctor, but he or she doesn’t deal with HIV very often? Time for a new doctor – the new drugs are good, but using them takes skill, and there’s lots an HIV doctor has to know about beside the drugs.
Is your doctor out of touch or hard to talk to? You need to talk with him or her about the problem, and if things don’t get better, maybe you need to change doctors. Of course you need someone with the right medical skills, but you also need someone who will meet you as a whole person who happens to have a medical condition, not as a passive someone who’s broken and needs to be fixed.
If you need a doctor and you’re near a city, you may want to check out individual doctors who see a lot of HIV patients or large, multi-specialty group practices affiliated with teaching hospitals. If you don’t have insurance, you may be able to get excellent and affordable care at a community health center (CHC). If you’re not near a city, finding the right doctor may be a challenge. Whether you live in the city or the country, you may need help to find a doctor who’s right for you. HIV service organizations can help you look. Click HERE for a list of HIV/AIDS service organizations in your state.
Always remember, you are in charge and your doctor works for you. When your doctor wants to begin or end a treatment, ask why. If you don’t understand something he or she tells you, insist on an explanation – you’re always free to say, “I refuse to pretend I understand what you just said.” If your doctor isn’t communicating with you, find someone else.
This is a highly personal decision, and your doctor and you need to make it together.
Many doctors advise starting treatment with “cocktail” drugs when counts of CD4+ cells (one type of white blood cell in your immune system) fall below a certain threshold. Some doctors set the threshold at 350 CD4+ cells per mL (about one-fifth of a teaspoon). Others prefer to start treatment when the count falls below 500.
Other doctors urge their patients to start treatment as soon as they are diagnosed, even if their CD4+ cell counts are still in the normal range (800-1200 per unit). Even during the long period between infection and first major symptoms, HIV is at work disabling your immune system and causing inflammatory disorders, so there is a good argument for hitting the virus as hard and as early as possible.
The argument against starting treatment immediately is that the drugs themselves can have side effects. Early “cocktail” drugs were rough on the system, and many doctors decided it was better to postpone using them until CD4+ counts showed that the virus was doing real damage. There are many more drugs available now, and many of them are significantly kinder to your body. If your doctor knows what she or he is doing (one more reason to choose the right doctor!), you may be able to find a combination of drugs that controls the virus completely with few side effects or none at all.
If you are in a relationship with an HIV-negative partner, you have another reason to consider starting treatment immediately. When the drugs keep the virus from reproducing, there is virtually no live virus in your blood and other body fluids. It is the live virus in the blood and other body fluids (semen, vaginal and anal fluids, breast milk), that infects others. If you are taking your drug “cocktail” faithfully and have no detectable live virus in your blood, it is not impossible for you to infect your partner, but it is much less likely.
HIV drugs can cost from $15,000 to $40,000 a year, and the doctor visits aren't cheap, either.
If you are working and have commercial health insurance through your employer, the insurer will pay for your drugs and visits. You may spend a hundred dollars or so every month in prescription and office visit copays, but that’s a lot better than paying full price.
If you are not working, or your employer does not offer health coverage and your income is below a certain limit (the limit varies by state), both you and your dependents may qualify for Medicaid. Your drugs and visits will be paid for by Medicaid, often without any copays. Having Medicaid paying your health care bills can make it harder, though, to find a doctor you like. Medicaid does not pay doctors and other providers as generously as commercial insurers and Medicare do, and many medical practices won’t take Medicaid patients.
If you don’t have coverage through your employer and your income is too high for Medicaid, you may have to buy individual non-group health insurance. Until 2014, commercial insurers in many states will not insure us or will not cover the expensive drugs we need to stay healthy. Until then, your best option may be to turn to your state’s Pre-existing Condition Insurance Plan (PCIP). You may qualify for PCIP coverage if you have been uninsured for at least six months, you have a pre-existing condition, and you have been denied coverage (or offered insurance without coverage of the pre-existing condition) by a private insurance company.
If you don’t quite qualify for PCIP coverage, you may be able to get commercial insurance for everything but the HIV drugs, and get your drugs from your state’s AIDS Drugs Assistance Program (ADAP). The ADAP program may also help you with your insurance premiums. Each state administers its own ADAP program and has its own eligibility rules. Your HIV doctor or case manager should be able to help you navigate the system to get the drugs you need.
For more information on what’s available in your state, visit http://www.healthcare.gov/.
Living with HIV is stressful. Ask yourself what else is causing stress in your life, and see what you can do to get your stress levels down. Identify damaging stress-reduction behaviors – smoking, recreational drugs, more than very limited alcohol use – and find better ways to cope. Exercise can be surprisingly helpful in reducing stress.
Living with HIV can also be lonely. Especially if you are still digesting the news that you are positive, you may want to find a formal or informal support group, where you can talk about it with people who are in the same boat with you. You can ask your medical provider or local HIV services organization to help you find one. If you prefer to do your own research online, the HIV support and information site TheBody keeps a list of service organizations and the services they offer, at http://www.asofinder.com/.
Yes! We at NAPWA follow the Denver Principles on this. People living with HIV have just as much right to emotionally and physically satisfying sex lives as everyone else.
That doesn’t mean you don’t need to be careful. Once you know you’re positive, you also know it’s just not right for you to pass the virus on to someone else. For safe(r) sex basics, see Safer sex, safer drug sharing, and more.
Your HIV is your business. Only you can decide who to tell and who not to.
If you are in a relationship, your partner has a right to know, but you have to decide when and how to break the news. If you are having more casual sex, you should know that several states now have laws against exposing another person to the virus without first disclosing your positive status – and even if there were no laws like that, it’s good practice to share your status before the clothes come off. For more, see Talking straight with your partner or date.
Beyond that, it’s your call. You don’t need to tell your employer. Your parents may be too old to deal with it. Your kids may be too young. Don’t force the issue – HIV isn’t a death sentence anymore, and if you take care of yourself, you’re likely to be with them all for a long time to come. Deciding whether or not to tell friends or your faith community can be especially hard; they may not be very supportive at first, but maybe they need to know they know someone living with the virus.
Where can you get reliable medical information? How do you meet and talk to other people living with the virus? If you are too sick to go out, how can you get meals on wheels? If stable housing is an issue, how can you find housing you can afford? If you are using drugs or have other behavioral health issues, where do you find care?
If you are newly diagnosed, start with your doctors. If they know what they are doing in HIV medicine, they also know at least some of the HIV service organizations in your area. (If they don’t, it’s time for a new doctor.) Once you find your area’s service organizations, get to know them – especially the ones that offer more comprehensive services. If HIV is only one of several major problems in your life, you may need a case manager, and the more comprehensive service providers may be more able to get you one.
If you need to talk to someone right now – nothing unusual for the newly diagnosed – you can call a hotline. TheBody.com keeps a list of hotlines at http://www.thebody.com/index/hotlines/other.html. You can also look for hotlines at www.ASOfinder.com. If you’re calling to find support services, you should call one in your area. If you’re calling for other information, like how to have sex (more) safely, it couldn’t matter less where the hotline is located – just call!
WHY GIVE TO NAPWA?
Because your gift makes you a member!
Because you want to know where to turn
for information and help.
Because you want to know what's happening
in HIV research, services, and public policy.
Because we know now we can end the epidemic –
and you want to be part of it.
And because your membership helps fund
everything we do!
Make a difference! Click HERE to give to NAPWA.