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Talking Things Out

Part Three of Three in Project Inform's "Considering Treatment and Your Health Care" Booklet

July 2011

Getting Your Health Care Covered

In the US, nearly 4 out of 5 people with HIV rely on public programs for their health care. And while you may never need to file for disability, for simplicity we present these options in terms of pre- and post-disability. Disability is a formal claim that must be made with your doctor and approved by Social Security. To find programs you may be eligible for, it's important to consult local resources such as benefits counselors, case managers, social workers or attorneys as programs differ greatly from state to state.

If You Haven't Filed for Disability ...

Group Insurance Through Your Employer

If your employer provides health insurance, the insurance company must cover you even if you have a pre-existing condition like HIV. There are three general types of plans: fee-for-service, preferred provider organizations (PPOs), and health maintenance organizations (HMOs). Plans vary in the services they offer, their fees and your choice of doctors. Choose a plan that is best for you. Check your plan for HIV-experienced doctors.


If you leave work due to a layoff and had insurance, then you should be offered a continuation policy called COBRA, which is meant to sustain you until you get other insurance. See below for other details.

Individual Private Insurance

Individual plans are also an option, but few people with HIV can purchase them due to high cost and restrictions on pre-existing conditions. If you had coverage before your HIV diagnosis, it's likely that most or everything you need will be covered. However, your out-of-pocket expenses may be high.

High Risk Insurance Pools

This program covers people who can't get insurance due to pre-existing conditions and operates in most states. In addition, the federal government is setting up a new program that will operate in all states and DC until 2014 when health care reform is more fully enacted.

Federal Ryan White Program

Ryan White funds a broad array of HIV services in states and localities, depending on their unique needs. It is intended to help under- or uninsured people. If you have insurance, you may be able to get help with premiums or other out-of-pocket costs. If you don't have insurance, your state program may help you purchase it. You may also get free or very low cost care through HIV clinics and the AIDS Drug Assistance Program (ADAP). Ryan White may also fund dental and vision care. Check with your state AIDS program or ASO to see if a Ryan White program can help you.

If You Have an Approved Disability Claim ...


If you leave work due to disability and had insurance, you'll be offered COBRA until you can get other insurance like Medicare. Coverage is often expensive. Check with a local ASO or state AIDS office for programs to help with out-of-pocket costs.


Most people with HIV enter Medicaid through its disability category, although some women with children can qualify through a different program. Nearly all states require a disability claim, income and assets below a certain level to qualify. Several states offer Medicaid to all childless adults (AZ, DE, HI, MA, NY and VT), while several others offer some benefits. States vary greatly in what benefits they cover and who can qualify.


If you have held a job, you'll likely qualify for Medicare. However, you must wait 29 months after your disability claim, during which you may be able to get your health care covered through COBRA, Ryan White or Medicaid.

Other Possible Sources of Help ...

Patient Assistance Programs (PAPs)

PAPs are run by HIV drug makers to supply meds to people who under- or uninsured. They differ widely in eligibility. These are not ideal for long-term coverage but have helped many in the short-term or in an emergency.

Veterans Administration (VA)

If you're a veteran or family member, you're eligible for care through the VA. VA sites are only found in some areas and vary in their ability to provide HIV care. As a veteran, you can access Ryan White programs, but if your VA facility is accessible and offers quality HIV care, it may be a good option.

Be Flexible With Your Decision Making

Talking Things Out

As you begin making decisions about your health and how to treat HIV, understand that decisions may need to change over time. What you decided to do two years ago may not be the best option today. Treatment information changes over time, your health may be different, and your feelings and opinions may have changed.

Giving yourself permission to change your mind can help you be more responsive to new developments in your health and in treatment and care options. For example, you may develop an unexpected infection that causes you to re-evaluate an earlier treatment decision. Or perhaps you start thinking you want to have a baby. Being flexible rather than rigid with your decisions could ease your worries. The new decisions you're making today, though they may feel contrary to earlier ones, can be appropriate at this time.

Getting Opinions From Others

Talking Things Out

Most people have concerns and fears about starting therapies, be they HIV meds or complementary therapies. Learning about other people's experiences can help inform your own decisions. Talk to friends or people in support groups and others who live with HIV. Ask them about what kinds of treatments they take. Why did they choose them, how are they benefitting from them, and what concerns do they have?

However, be careful when using the experiences of others as your only source of information. What works for one person may not work for you, as treatment is a very individual decision. The most reliable picture of how you'll do will usually come from well designed clinical studies, since they look at many people taking the same regimen.

HIV treatment guidelines are not meant to be a cookbook, to be applied the same way to everyone. Ask your health providers about their experiences or opinions. Has s/he followed other people using the same medicine(s)? Be open with your doctor about options and the information you read in newsletters and websites.

Important Questions to Ask Others

For Your Doctor

  • Do you start every patient on treatment at the same time, or on the same regimen? Why or why not?
  • Should I be concerned about HIV meds interacting with other drugs or herbs that I'm taking?
  • Should I be concerned about drug resistance, and how do I keep ahead of it?
  • What tests or prescriptions are covered by my insurance (public or private)?
  • How do blood tests inform my decision to start treatment?
  • What vaccines do you recommend I get? Why?
  • What if I'm not ready to start treatment?
  • Are there are any other tests that I should take before starting an HIV regimen?

For Others

  • Have you started on HIV meds? Why or why not?
  • What was important for you to understand to help you make a decision about starting meds?
  • When did you know it was the right time to start?
  • What other ways do you keep yourself healthy?
  • Do you know of support groups or agencies that help people talk about these decisions?
  • How do you make sure you take every dose of your meds every day?
  • How did your blood work inform your decision to start?
  • Did other things affect your treatment decision?
  • What HIV treatment information do you rely on? Why?

Checklist for Getting Started

  • I am ready to start taking medicines, and understand the reasons why I want to start.
  • I am not ready to start taking medicines, and understand the reasons why I don't want to start.
  • My CD4 count is _______. The trend is __ stable, __ increasing, __ decreasing.
  • My viral load is _______. The trend is __ stable; __ increasing; __ decreasing.
  • I understand my goals for taking HIV treatment.
  • I understand what signs indicate a weakening immune system.
  • I have a good understanding of the risks and benefits of starting treatment according to my individual needs.
  • I have thought about how HIV treatment may impact my life.
  • I've considered the issues around taking HIV meds and oral birth control, or pregnancy.
  • I've considered the issues around taking HIV meds and other conditions, like hepatitis C or bone loss.
  • I have private or public insurance or another way to cover the cost of my doctor visits, medicines and blood work.
  • I know where to go to get other types of support, like mental health or housing services, that will help me stay healthy.
  • If I have questions and my doctor's not available, I can call __________________ or ___________________.

Online Resources That May Help

For HIV Care   For Women
Project Inform The Well Project
California AIDS Infoline Three Poz Gals
CDC NPIN Women Alive
Poz ASO Directory  
AAHIVM Dr Directory Connecting With Positives
GLMA Dr Directory HIV+ Bulletin Boards
HealthHIV Strength In Numbers
HIVMA Dr Directory Yahoo Support Groups
State AIDS Hotlines  
Insurance Programs People of Color
Centers for Medicaid & Medicare Services Asian/Pacific Islander Wellness Project
The Access Project Black AIDS Institute
Health Latino Commission on AIDS
  National Native American AIDS Prevention Center

This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
See Also
"Considering Treatment and Your Health Care": Table of Contents
Part One: Learning How to Treat HIV Disease
Part Two: Consider How HIV Treatment Fits Into Your Life

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