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 (www.aahivm.org) and the HIV Medicine Association (www.hivma.org).
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
www.atac-usa.org/adap.html.
Medicaid
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
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 www.medicarerights.org.
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.
| Resources |
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Medicare Rights Center
www.medicarerights.org
HIV Medicine Association
www.hivma.org
Kaiser Family Foundation
www.kff.org
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
http://www.aegis.com/factshts/network/access/pa.html
Pharmaceutical Research and Manufacturers of America (PhRMA)
www.helpingpatients.org
HIV InSite
http://hivinsite.ucsf.edu/InSite?page=md-rr-16
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
AIDSLINE
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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