Content Overview 
- Summary
- Be a person living with HIV - not one dying of it.
- Commit yourself to doing everything you can to keep the virus in check.
- Look for a doctor who is a specialist with a large HIV practice who is connected with a quality hospital. Learn how to maximize your time with doctors.
- HIV. Basics
- If lab or other tests are unexpectedly bad or good, ask for them to be done again - preferably by a different lab.
- Decide whether to start treatment. If so, choose a treatment that fits your life.
- Once you choose a treatment, follow the prescribed regimen. 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. If needed, cutting edge treatments are available through clinical trials.
- Decide who to tell about your HIV status, and when.
- Tell every doctor and other medical professional about your HIV status and drugs.
- Think of family and friends as part of your health care team. Ask for help when you need it. Family roles may change as your needs change.
- Share your emotions. Seek someone who is going through the same thing you are. Consider joining a support group.
- Examine 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 insurance, do what you can to get it. You still can.
- Pay attention to your financial basics. Start improving your financial resources. Do what you can to get rid of or minimize existing debt. Refine your investment strategy. Keep track of medical expenses.
- When debt is under control, start working on your goals.
- If you work: Learn how to navigate the potential mine field.
- If you are not able to work, learn the best way to apply for disability income benefits. If you receive a disability benefit, learn how to keep it.
- If you are returning to work or changing jobs, a new employer cannot ask about your health condition.
- Self employed and business owners
- Be sure your legal affairs are in order, including Advance Care Directives. HIV only makes this need more urgent. It will help you feel in control.
- Learn about the HIV resources in your community.
- Drugs do not work in a vacuum. Live a healthy lifestyle. It helps make drugs and other treatments most effective.
- If you have a pet, learn how to live with it safely. If you don't have a pet, consider getting one. A pet is good for your health.
- 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.
- Watch for depression. Depression, and all other side effects, can be treated.
- Learn About Other Diseases That Can Show Up When Living With HIV, How To Help Prevent Them And Symptoms To Watch For.
Living With HIV
Examine 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 insurance, do what you can to 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.
- If you don't get what you want from your insurer:
- 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 that 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. (We tell you how to frame your story to get press attention in the document listed in "To Learn More.")
If you don't have health insurance
- Do what you can to try to get it.
- There are still ways to access health care. Keep in mind that all medical bills are negotiable.
- If you have too many assets or income to qualify for Medicaid (Medi-cal in California), it may still be possible to qualify.
- 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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