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Access 101: Navigating the Rocky Waters of HIV/AIDS Healthcare

A Guide to Finding Quality Healthcare Services

November/December 2004

Access 101: Navigating the Rocky Waters of HIV/AIDS Healthcare

If you feel lost trying to figure out how to afford and obtain healthcare services, you are not alone. The checklist that follows is designed to help guide people with HIV/AIDS in their search for quality healthcare. Because programs and services vary dramatically state by state, this outline is the beginning of what will likely become a more detailed and specific list of what is available in your state and municipality.

Private Health Insurance

If you have private healthcare coverage, use it wisely and do all you can to hold onto it. Benefits vary dramatically depending on the type of plan you have and the insurance laws in your state. Pay special attention to your plan's prescription drug coverage (what's covered, how to use it, and what it will cost you), participating providers (doctors, hospitals, and healthcare facilities covered by your plan), required co-payments (your cost for each doctor's visit or service), deductibles (what you pay before the plan pays the rest), and lifetime limits (maximum amount the plan will pay).

If your plan is an HMO (health maintenance organization), be sure the physician you select specializes in HIV medicine, and become aware of your plan's "open enrollment" period, which is the time of year beneficiaries may switch to another physician within the plan. While co-workers and the benefits administrator at your place of employment may be helpful, remember that you are under no obligation to disclose your HIV status and you may well benefit from keeping this information private.

Studies show that patients receiving care from HIV specialists live longer than those who don't. Ask around for recommendations, contact an HIV service organization or contact the American Academy of HIV Medicine ( and the HIV Medicine Association (

If you leave your place of employment, work with a benefits counselor or lawyer to carefully plan the transition. Under the federal Consolidated Omnibus Budget Reconciliation Act, better known as COBRA, you have the option to purchase your existing health insurance coverage for up to 18 months after leaving your current place of employment (group health plans sponsored by employers with 20 or more employees), but you must abide by all the rules or risk being dropped from the plan permanently. You will have 60 days from the time you are notified to elect "COBRA continuation" coverage. You must elect continuation coverage in that period and begin paying the monthly premiums on time every month. If you fail to pay within the grace period, your coverage will be revoked. Individuals determined disabled by Social Security may extend COBRA coverage another 11 months at the completion of 18 months but may have to pay higher premiums. You must notify your prior employer within 30 days of Social Security's decision.

Some states offer people with HIV/AIDS or other low-income residents assistance paying COBRA continuation premiums and co-pays. Several states have laws making individual health insurance accessible and affordable for people with chronic conditions. Be sure you can afford the premiums and all the out-of-pocket costs before enrolling.

Beware of fraudulent health plans. Some advertise heavily on TV and are not health insurance at all, but drug discount cards marketed as comprehensive coverage. They may advertise extensive networks, low monthly premiums, and no enrollment exclusions. Read the fine print and contact your state's Office of Insurance if you suspect insurance fraud.

Ryan White CARE Act

The federal Ryan White CARE Act provides funding across the country for an array of HIV-related services, including health services, for people with HIV who are low-income and uninsured or under-insured. Call the National AIDS Hotline at 1-800-342-AIDS (342-2437) for the services near you. Ask the operator for information about local support groups and peer organizations, and request contact information for your state's AIDS Drug Assistance Program (ADAP) and HIV/AIDS case management offered in your area. When you meet with a case manager, ask him or her to assist you in applying for Medicaid and other government assistance programs, and to refer you to free or low-cost clinics. Help advocate for funding increases by joining groups such as Save ADAP. Join online at


Medicaid is a federal/state heath insurance program for low-income people who are blind, disabled, or elderly. You must prove that you are too sick to "sustain gainful employment." This means that a physician will need to attest to the fatigue, lack of concentration, memory problems and other impairments you experience, as a result of your disability, which keep you from working. Medicaid will also review your income and assets. Earned income and most forms of cash assistance, including Social Security Disability Insurance (SSDI), count toward the financial limits. Medicaid can pay for medications and services not available through the CARE Act, including non-HIV-related medications, in-patient services, and treatments for other diseases and conditions. Everyone who is low-income, uninsured and receiving CARE Act services should apply for Medicaid through their state's welfare agency. In most states, low-income pregnant women, low-income children and individuals found eligible for Social Security Income (SSI) are considered for Medicaid on an expedited basis. Positive women should get early screening for breast and cervical cancer, and may qualify if they have precursors for these diseases.

Some states provide conditional eligibility to individuals who meet disability criteria but are found to have too much income to qualify for Medicaid. Earned income and most forms of cash assistance, including Social Security benefits, count toward the financial limits. Certain assets, such as a home and a vehicle used for transportation to and from medical appointments, are exempt from financial limits; personal savings are not exempt. Individuals granted conditional eligibility receive Medicaid coverage once they spend a set amount of their income (know as their "spend-down") on healthcare costs they incur for a period of between a month and six months (differs by state). It is important to know the rules and follow them closely so that you can be sure of continuous medical coverage.

Medicaid recipients may experience other barriers to quality healthcare such as "voluntary" pharmacy co-payments and required prior authorization for certain prescription drugs.


Medicare is a federal health insurance program primarily for retired workers over age 65, although an increasing number of people under 65 with disabilities receive Medicare. People with HIV who have substantial work histories and receive Social Security Disability Insurance (SSDI) benefits qualify for Medicare after a two-year wait period. Because the program is complex and undergoing a significant restructuring, you should consult with a Medicare expert if you think you qualify or will qualify for Medicare in the near future.

Medicare covers in-patient hospital care, skilled nursing facilities, and hospice (some deductibles and co-pays apply). Beneficiaries who pay a monthly premium may also receive coverage for out-patient medical care, home health, laboratory services, and medical supplies under a program know as Part B. People with HIV should always select Part B coverage because the out-patient benefits are better than those available through Medicaid. If your income is below the federal poverty level, the state Medicaid program should pay the premiums for you if you ask for assistance.

Because Medicare has historically not covered outpatient prescription drugs, many seniors supplement their coverage with private Medigap plans, if they can afford them, or Medicaid. Visit

Patient Assistance Programs

Virtually all pharmaceutical companies have programs for low-income patients who need their drugs but cannot afford them or cannot get them through another source.


Medicare Rights Center

HIV Medicine Association

Kaiser Family Foundation

Patient Assistance Programs

Virtually all pharmaceutical companies have programs for low-income patients who need their drugs but cannot afford them or identify another public or private source to pay for them. Eligibility and availability varies widely. Consult the links below for more information about the individual medication you may need.

The Access Project

Pharmaceutical Research and Manufacturers of America (PhRMA)

HIV InSite

National Hotlines

  • National CDC STD/HIV Hotline
    (800) CDC-INFO
    Nationwide test site referrals, counseling, literature (upon request), clinical trials information referrals, and a wide scope of other HIV/AIDS/STD/TB-related resource information. Open 24/7.

State Hotlines

  • Alabama
    AIDS Hotline
    In Alabama : (800) 228-0469
    National: (334) 206-5364

  • Alaska
    AIDS Hotline
    In Alaska : (800) 478-2437
    National: (907) 276-4880

  • Arkansas
    AIDS Hotline
    In Arkansas : (800) 342-2437
    National: (501) 661-2408

  • Arizona
    AIDS Hotline
    In Arizona : (800) 334-1540
    National: (602) 230-5819

  • California
    HIV/AIDS Hotline
    In California: (800) 367-AIDS
    In San Francisco and outside California : (415) 863-2437
    Information available in English, Spanish and Filipino
    TDD for the deaf: 1-888-225-AIDS

  • Colorado
    AIDS Hotline
    Denver only: (303) 782-5186
    In Colorado : (800) 252-2437

  • Delaware
    AIDS Hotline
    In Delaware : (800) 422-0429
    National: (302) 652-6776

  • District of Columbia
    AIDS Information Line
    (202) 332-2437
    In metro DC. & VA: (800) 322-7432

  • Florida
    AIDS Hotline
    In Florida , in English: (800) 352-AIDS
    In Haitian Creole: (800) 243-7101
    In Spanish: (800) 545-SIDA
    TTY: 1-888-503-7118
    National: (850) 681-9131
    Ocala/Marion County Community AIDS Network (OMCCAN): (352)-629-5124

  • Georgia
    AIDS Information Line
    In Georgia : (800) 551-2728
    National: (404) 876-9944

  • Hawaii
    STD/AIDS Hotlines
    In Hawaii : (800) 321-1555
    National: (808) 922-1313

  • Idaho
    AIDS Foundation Hotline
    In Idaho : (800) 926-2588
    National: (208) 321-2777

  • Illinois
    AIDS Hotline
    In Illinois : (800) 243-2437
    In Illinois TTY/TDD: (800) 782-0423
    National: (217) 785-7165

  • Iowa
    AIDS Hotline
    In Iowa : (800) 445-2437
    National: (515) 244-6700

  • Louisiana
    AIDS Hotline
    In Louisiana: (504) 821-6050
    In Louisiana : (800) 99-AIDS-9 (992-4379)
    TDD: (877) 566-9448
    Hours of service 12 pm - 8 pm seven days per week.

  • Maine
    AIDS Hotline
    In Maine : (800) 851-2437
    National: (800) 775-1267

  • Maryland
    AIDS Hotline
    In Maryland (Bilingual): (800) 638-6252
    In Metro DC. & VA: (800) 322-7432
    Hispanic AIDS Hotline: (301) 949-0945
    Baltimore only TTY area: (410) 333-2437
    National: (410) 767-5013

  • Massachusetts
    AIDS Hotline
    In Massachusetts : (800) 235-2331
    National: (617) 536-7733
    TTY/TDD: (617) 437-1672
    Youth Only AIDS Line toll-free at (800) 788-1234,
    TTY: (617) 450-1427
    Monday through Friday, 3:00 p.m. to 9:00 p.m.

  • Michigan
    AIDS Hotline
    In Michigan : (800) 872-2437
    TTY/TDD: (800) 332-0849
    Spanish: (800) 826-SIDA
    Teen Line: (800) 750-TEEN
    Health Care Workers: (800) 522-0399
    National: (313) 446-9800

  • Minnesota
    AIDS Line
    National: (612) 373-2437
    In Minnesota : (800) 248-2437

  • Missouri
    AIDS Information Line
    National: (800) 533-2437

  • Mississippi
    AIDS Hotline
    In Mississippi : (800) 826-2961
    National: (601) 576-7723

  • Montana
    AIDS Hotline
    In Montana : (800) 233-6668
    National: (406) 444-1573

  • Nebraska
    AIDS Hotline
    National: (800) 782-2437

  • Nevada
    AIDS Information Line
    In Nevada : (800) 842-2437

  • New Hampshire
    AIDS Hotline
    In New Hampshire : (800) 752-2437
    National: (603) 271-4502

  • New Jersey
    AIDS Hotline
    In New Jersey: (800) 624-2377 (24 hrs, 7 days)
    TTY/TDD: (201) 926-8008
    National: (973) 926-7443

  • New Mexico
    AIDS Hotline
    In New Mexico : (800) 545-2437
    National: (505) 476-3612

  • New York

    • New York State HIV counseling hotline: (800) 872-2777 (M-F 2-8, S & S 10-6)

    • National: (716) 845-3170

    • New York State information hotline: (800) 541-2437 (information tapes 24 hrs; counselors Mon.-Fri. 8-8, Sat. & Sun. 10-6)

    • New York State Spanish hotline: (800) 233-SIDA

    • New York State counseling hotline for the deaf and hearing impaired: (800) 369-2437 TDD

    • NYC Department of Health AIDS Helpline: 1-800-TALK-HIV (counseling, recorded information, and testing information)

    • AIDS Institute experimental treatment info line: (800) 633-7444

    • GMHC AIDS Hotline: (212) 807-6655 (M-F 10-9, Sat 12-3)

    • GMHC TDD: (212) 645-7470

    • Body Positive Helpline 800-566-6599 ( 2-6pm Mon-Fri)

    • Long Island AIDS Hotline: (516) 385-AIDS (M-F 9-9, tape after hours)

    • AIDS Council of Northeastern New York AIDS Information Hotline: (518) 445-2437 (800) 201-AIDS

  • North Carolina
    AIDS Hotline
    In North Carolina : (800) 342-2437
    National: (919) 733-3039

  • North Dakota
    AIDS Hotline
    In North Dakota : (800) 472-2180
    National: (701) 328-2378

  • Ohio
    AIDS Hotline
    In Ohio : (800) 332-2437
    In Ohio TTY/TDD: (800) 332-3889
    National: (614) 466-6374

  • Oklahoma
    AIDS Hotline
    In Oklahoma : (800) 535-2437
    National: (918) 834-4194

  • Oregon
    AIDS Hotline
    Area codes 503, 206 and 208: (800) 777-2437
    Voice & TTY: (503) 223-2437
    National: (503) 223-2437

  • Pennsylvania
    AIDS Hotline
    In Pennsylvania: (800) 662-6080
    Critical Path Project Hotline: (215) 545-2212
    (215) 463- 7160 (publications orders)
    National: (717) 783-0573

  • Puerto Rico
    Linea de Infor SIDA y Enfermedades de Transmision Sexual
    In Puerto Rico: (800) 981-5721
    National: (809) 765-1010

  • Rhode Island
    AIDS Hotline
    National: (800) 726-3010

  • South Carolina
    AIDS Hotline
    In South Carolina : (800) 322-2437
    National: (803) 898-0749

  • South Dakota
    AIDS Hotline
    In South Dakota : (800) 592-1861
    National: (605) 773-3737

  • Tennessee
    AIDS Hotline
    In Tennessee : (800) 525-AIDS
    National: (615) 741-7500

  • Texas
    In Texas : (800) 299-2437
    National: (572) 490-2500

  • Utah
    AIDS Information Line
    In Utah : (800) 366-2437
    National: (801) 487-2100

  • Vermont
    AIDS Hotline
    In Vermont : (800) 882-2437
    National: (802) 863-7245

  • Virgin Islands
    AIDS Hotline
    (809) 773-2437

  • Virginia
    STD/AIDS Hotline
    In Virginia: (800) 533-4148
    In Virginia Hispanic line: (800) 322-7432
    National: (804) 371-7455

  • Washington
    AIDS Hotline
    In Washington : (800) 272-2437
    National: (360) 236-3466

  • West Virginia
    AIDS Hotline
    In West Virginia : (800) 642-8244
    National: (304) 558-2950

  • Wisconsin
    AIDS Hotline
    In Wisconsin : (800) 334-2437
    National: (414) 273-2437

  • Wyoming
    AIDS Hotline
    National: (800) 327-3577

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This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
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