Access 101: Navigating the Rocky Waters of HIV/AIDS Healthcare
A Guide to Finding Quality Healthcare Services
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.
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.
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 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 www.medicarerights.org.
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.
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