In each issue, POZ publishes a different standard of care, a guide by which people with HIV and their care providers can make personal choices about health care regimens. Usually these standards address treatment. Here, we take a new approach -- a standard of care for insurance. HIV positive people are often unaware of all their insurance options, both private and governmental. POZ asked Affording Care, a non-profit provider off financial information to the seriously ill and their financial advisers, to prepare this guide to medical and disability insurance for people with HIV.
Money: We never have enough of it and we often dread dealing with it. The blizzard of arcane paperwork accompanying financial management can seem overwhelming and can tyrannize people into inaction, especially concerning insurance. Yet insurance can be key to survival. The factor most common to long-term HIV survivors is having private medical insurance.
Good private medical insurance and long-term disability income insurance (which provides cash to live on when you can no longer work) are the twin pillars of solidly financing your life with HIV. Without good coverage in both categories, you may be forced into a means-based entitlement program -- Medicaid or Supplemental Security Income (SSI) -- and thus lower-quality care.
Once you are HIV positive, you lose almost all ability to acquire new individual or small group private insurance (but check whether you are eligible for coverage through an open enrollment program, state-run high-risk pool or professional association). So don't let any insurance you have now -- perhaps your most valuable asset -- get away from you.
After you test positive, it may take concerted action to get medical and disability coverage. (But note that falsifying your HIV status constitutes fraud and can lead to denial of claims and cancellation of policies.) When seeking or maintaining a job, employment benefits now become key -- perhaps more important than pay, work satisfaction or career advancement.
The key to getting the most from insurance is acting as early as possible. In fact, good insurance management might help you prevent moving to more advanced illness. This chart is divided into three approximate stages of HIV infection: Asymptomatic (generally good health, stable CD4 count), symptomatic (nonserious health problems, declining CD4 count), and disabled (after first serious health problems leading to disability status). Recommendations are listed under the stage at which they are most helpful or ultimately become crucial.
Consider the alternatives here appropriate to your circumstances; some may be out of reach. Check your state's insurance rules when designing your strategy. Your first step is to carefully read your insurance policies and/or employment benefits book, but you need to understand the lingo. To guide you through this strange land, the chart above can best be used in conjunction with a financial planner, attorney or social worker knowledgeable about HiV insurance issues. Your local AIDS service organization may be able to help. More detailed information, including printed material, is available from Affording Care and the benefit-programs desk at AIDS Project Los Angeles. Also useful is The AIDS Benefits Handbook by Tom McCormick (Yale University Press/New Haven) .