Content Overview 
- Overview
- Take time to breathe. You are a person living with HIV - not a person dying of it. Whatever happened, happened. There is no use dwelling on it.
- HIV Basics
- Commit yourself to doing everything you can to keep the virus in check. Don't make any major decisions that you don't have to make right now.
- Look for a doctor with a large HIV practice who is connected with a quality hospital, in a different locale if necessary. Learn how to maximize your time with doctors.
- Decide whether to start treatment. If so, choose a treatment that fits your life. If you have any question about which treatment to take, get a second opinion.
- Learn to be wise about purchasing, living with, storing and disposing of drugs. Free drugs may be available.
- Non-Western treatments should be complementary, not instead of Western treatments. Cutting edge treatments are available if needed through clinical trials.
- Decide who to tell about your HIV status, and when. Your answers may be different for family and friends, children and work. If not before, tell your children about your diagnosis if you have symptoms.
- Think of family and friends as part of your health care team. Ask for help when you need it.
- Share your emotions. Seek someone to talk with who is going through the same thing you are. Consider joining a support group.
- Start examining your insurance and financial situation to determine how to pay for medical care and drugs or access them for free if you don't have the resources. If you don't have health coverage, get it. You still can.
- Pay attention to your financial basics such as paying your rent on mortgage on time. Keep track of medical expenses. They may be deductible.
- Don't go on a spending spree.
- If you work, learn about your legal rights and benefits, consider who to tell or not, negotiate an accommodation if you need one. Look for an advisor. If you are unable to work, learn how to apply for SSDI/SSI.
- Start getting your legal affairs in order - not because you're going to die from HIV but because the diagnosis can be a trigger to action. It will help you feel in control and help keep you busy.
- Learn about the HIV resources in your community.
- Drugs do not work in a vacuum. Start to think of the food you eat, the exercise you get, rest/sleep and even proper care of your mouth as steps you can take to make drugs and treatments most effective.
- Although a major source of transmission of HIV is through bodily contact, you can still be physically intimate with people. Learn how to avoid transmitting HIV to other people.
- If you have a pet, learn what you need to know to keep both of you healthy.
- Watch for mental conditions that affect your life. Depression, anxiety and other emotional side effects, can be treated.
Newly Diagnosed With HIV
Start examining your insurance and financial situation to determine how to pay for medical care and drugs or access them for free if you don't have the resources. If you don't have health coverage, get it. You still can.
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If you have health insurance:
- Do whatever is necessary to keep it. Health insurance is vitally important.
- Learn what your health insurance does and does not cover, whether you are restricted to a group of doctors or hospitals or have a broader choice, and what needs prior approval, if anything.
- Learn how to maximize use of your health insurance.
- Keep in mind: if you don't get what you want from your insurer you should look for a source of influence that can help. (For example, the person in HR who negotiated the company's contract, or a caring case manager at the insurer). If you don't have such a source, or if it doesn't work: appeal - and appeal again. Be persistent. If appeals don't work, think about pressure you can apply on the insurer - such as through the state Insurance Commission or through the press.
If you don't have health insurance:
- There are still ways to access health care. Keep in mind that all medical bills are negotiable.
- There are a variety of ways to obtain health insurance even after a diagnosis.
If you have too many assets or income to qualify for Medicaid (Medi-cal in California), it may still be possible to qualify.
You may be able to qualify for free drugs under your state's ADAP program.
If you have to pay for your care, consider traveling outside the U.S. for good quality care at a lower price. This is known as "Medical Tourism."
NOTE:
- Experience indicates that people who take the attitude "I'm going to die, so I'm going to blow through all my money now," generally live to regret it. Even with the most dire diagnosis, someone survives.
- If finances of any type are an issue, Survivorship A to Z provides financial planning information that will help you maximize your resources. We also have tips for dealing with a financial crunch.
For information see:
- Health Insurance
- Finances
- Uninsured
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