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Self-Advocacy: Learning to Support Yourself

Part Three of Three in Project Inform's "After You've Tested Positive" Booklet

January 2013

How Do You Get Into Health Care?

Getting Into Health Care

Some people have few problems getting the cost of their health care covered by private insurance, which is generally funded by your current or former employer. However, many people with HIV rely on public health care programs or coverage funded by federal and state governments (Medicaid, Medicare, Ryan White, and AIDS Drug Assistance Programs).

You can probably find health care that you can afford or that's free of charge. The difficult part can be locating these resources and putting together affordable care by combining several services. Read pages 19-21 in Project Inform's publication, "Considering Treatment and Your Health Care."

A qualified benefits counselor can help you figure out a way through this maze, as can some case managers and social workers. Check with your local AIDS service organization, or go online to

Main Points to Remember

  • Most HIV-positive people rely upon public programs for their health care, and usually you can find coverage.
  • A benefits counselor, case manager or social worker can help find ways to cover your health care.

Helpful Resources

Medicaid & Medicare
Pre-existing Conditions Insurance Plans:,
HIV Health Reform

Telling Others About Your HIV Status

Disclosure: Telling Others About Your HIV Status

Telling others about your status can feel scary, but it may also help you cope. People who share this news may enjoy better health, probably due in part to relieving the stress from keeping it a secret. Being open about your status with your medical providers can help ensure you get the best care.

You don't have to tell everyone -- or even anyone -- and you don't have to do it all at once. Choose carefully who you want to tell and who you think will respond well to the news. Think about what you would do if it doesn't go well and be prepared for various reactions, even from doctors and nurses.

Telling others could also mean facing the risk of abandonment or even violence. If you fear telling those close to you, find a support group, a therapist or a domestic violence assistance group to work through those relationship issues.

Main Points to Remember

  • Telling others who can support you can keep you healthy.
  • If you do disclose, plan ahead and decide who you tell.
  • Plan ahead of time what to do if someone doesn't react well.

Helpful Resources

Telling Others About Your HIV
To Tell or Not to Tell

Laws Regarding Disclosure and Discrimination

Telling your co-workers or employers about your HIV status is a different type of disclosure and should be considered carefully before making decisions. Investigate your options with legal experts before disclosing your status at work.

The Americans with Disabilities Act (ADA) state that employers do not have the right to ask about a disability or your health before hiring you. People with HIV are protected by the ADA, which means your employer can't discriminate against you and must reasonably accommodate your physical needs at work. If you need accommodations, you will need a letter from your doctor, which can state you have a chronic condition as opposed to having HIV or AIDS.

Important federal and state laws prohibit both the disclosure of medical information and discrimination against HIV-positive people. The laws are not perfect and are interpreted differently in each state, so it's important to understand the limits of the laws in your area.

Some states and foreign countries have laws that make it a crime to knowingly transmit HIV to someone else or even to fail to disclose your status to your sex partners. While these laws are clearly meant for people who try to infect another person, they have been used -- especially in some states -- to threaten or prosecute others. In fact, some laws state that transmission doesn't have to happen for possible prosecution. It's important to know the laws where you live.

Helpful Resource

Americans with Disabilities Act Q&A

Lining Up Support

Lining Up Support

Although many services exist for people with HIV -- such as medical care, support groups, peer mentors, and referrals to housing and other resources -- it's up to you to engage with them and decide if they're right for you. You may have to keep working at it because the first contact may not be the right fit.

Many people seek peer and other types of support during the first few months or years after their diagnosis. This can be a helpful way to get used to the new "surroundings," so to speak. Many find this is a temporary but important way to seek help until they feel secure about what is needed. You may even find someone who becomes a friend or confidante.

Case Manager/Social Worker/Benefits Counselor

Many community agencies have case managers or social workers who can help you find local resources. Talking to them may solve some of the practical issues you face, like finding transportation, housing or ways to cover your health care costs. Some agencies offer these services for free. Dial "211" for local service referrals, or use the Resource Finders below.

Support Groups/Friends

Support groups are one way to find a safe space to talk about your life. Studies show that people who participate in support groups enjoy better health and quality of life. It may take time to find one that suits you. Some people have even started their own groups. Check local community based organizations for referrals. You can also dial "211" to get local referrals.

Chat Rooms, Blogs and "Ask the Experts"

Several HIV-related websites offer support anonymously. Thousands of people have used this type of support for ongoing help or even a quick answer to a nagging question. But be aware that there's a lot of misinformation on the Internet.

Helpful Resources

Resource Finders
National Prevention Information Network
ASO Finder
ASO Directory
State AIDS Hotlines

Community Support Resources
Ask the Experts
AIDS Meds/Poz Community Forums
Yahoo support groups for HIV+ people
HIV+ Bulletin Boards
The Well Project (for women)

Checklist for Getting Started

  • I've found support people, such as a social worker or benefits counselor, who can help me find local services or care.
  • I've found a doctor who's experienced in treating HIV.
  • I know a doctor to go to for my first appointment.
  • I've made my first appointment.
  • I've found other providers, like a dentist or gynecologist, who understand how to treat people with HIV.
  • I've written a list of questions for my first doctor visit.
  • I've considered telling others about my status and have made a plan for how to do it.
  • I've considered my emotional support needs and will seek help.
  • I know how I'll pay for my health care, meds and tests.
  • I talked to my doctor about the vaccines that I may need.
  • I've talked to my doctor about the screenings I should get, such as hepatitis B and C, cervical and anal Pap smears.
  • My first results are: ____ CD4s, ____ viral load.
  • My second results are: ____ CD4s, ____ viral load.
  • I know what these results mean.
  • I've talked to people I trust about how to treat HIV.
  • I know what I need to do to get ready for making decisions about treatment.
  • If I have questions and my doctor's not available, I can call ________________ or _______________.

Online Resources That May Help

Resources for HIV Care

Project Inform

Directories for ASOs (in CA)

Directories for HIV Providers (ReferralLink on right) (click FIND PROVIDER at top) (click FIND PROVIDER at top)

State AIDS Hotlines

Insurance Programs, Help With Health Costs

Centers for Medicaid/Medicare
HIV Health Reform
Pre-existing Conditions Plans:,

For People of Color

Asian/Pacific Islander Wellness
Black AIDS Institute
Latino Commission on AIDS
Nat'l Minority AIDS Coalition
Native Prevention Center

For Women

The Well Project
Women Alive

Connecting With Others

HIV+ Bulletin Boards
National Association of PWAs
Poz Community Forums
Yahoo Support Groups

Related Stories

"After You've Tested Positive": Table of Contents
Knowledge: Getting Informed About HIV
Health: Getting Involved in Your Well-Being

This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.

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