Self-Advocacy: Getting Ready to Start

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

Getting Your Health Care Covered

You may never need to file for disability, but 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 covers health care, the insurance company must cover you even if you have a pre-existing condition like HIV. There are three types of plans: fee-for-service, preferred provider organizations (PPOs), and health maintenance organizations (HMOs). Plans vary in what they offer, their fees and your choice of doctors. Choose a plan that is best for you, and 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.
  • Individual private insurance
    Individual plans are an option, but few people with HIV can purchase them due to high cost and restrictions on preexisting conditions. If you had coverage before your HIV diagnosis, it's likely most or everything you need will be covered. However, 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 36 states. In addition, under health care reform each state has a Pre-existing Condition Insurance Program (PCIP) in place until 2014 when the large coverage expansions will occur.
  • Federal Ryan White Program
    Ryan White funds a broad range of HIV services in states and localities, depending on their unique needs. It's intended to help under- or uninsured people. If you have insurance, you may 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.
  • Medicaid
    Most people with HIV qualify for 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 they cover and who qualifies.
  • Medicare (
    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 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 are under- or uninsured. They differ widely in eligibility. These are not ideal for the long-term but can help in the short-term or in an emergency.
  • Veterans Administration (
    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.
Helpful Resources

Is Your Doctor Experienced in Treating HIV?

You will need to find a doctor who's able and willing to treat HIV, ideally one who already has experience with HIV. Depending on how and where you get health care, you may not have many choices.

Experienced doctors usually keep up with recent developments in treating HIV. They also have a better sense of preventive health care. If you can, it's also important to find other doctors like gynecologists, eye doctors and dentists who have HIV experience.

Doctors with less or no HIV experience may need to consult resources that can help them provide the best medical care for you. Resources are available that can help you and your doctor make informed decisions.

The WarmLine (National HIV/AIDS Clinicians' Consultation Center) provides expert clinical advice to medical professionals. It's available Monday-Friday, 8am-8pm, Eastern Time. (See below.)

Helpful Resources

Important Questions

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 (am not) ready to start taking HIV meds, and understand the reasons why I want (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 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 HIV meds and pregnancy.
  • 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.
  • I will ask how to properly take my medicines.
  • I understand how my doctor and I will check to see if my regimen is working.
  • I know what side effects may give me the most problems, like nausea or diarrhea, and which likely get better over time.
  • I'm aware of what I can do to help avoid or lessen side effects.
  • If I want privacy when taking my meds, I've thought abouthow to ensure that.
  • If I have questions and my doctor is not available, I can call __________________ or ___________________.