After eight months in a graphic-design job he found “stressful and intolerant,” New Yorker Mark Kuebel wasn’t exactly bummed out when he was handed a pink slip. Gliding out the door, he had one main worry: health insurance. “I whored myself,” the 42-year-old cheerfully admits about having remained in a thankless job merely for employer-provided benefits that paid his many medical bills. But now where would his coverage come from?
Thousands of HIVers ask themselves just that when they lose—or consider leaving—their jobs, especially in today’s sluggish market. But job loss doesn’t have to mean insurance loss: Government programs like COBRA, the Ryan White CARE Act and Medicaid provide safety nets that, while differing widely from state to state, help protect HIVers’ access to health-care coverage.
The key is to know the options in your state before you become unemployed. Your local AIDS service organization (ASO) (find it at www.thebody.com/help.html) can fill you in on your rights and choices. “The people most prepared are the ones who call and come in for a conference when they first find out they’re HIV positive, just to know what’s out there if they ever need it,” says Jacques Chambers, an independent benefits counselor in LA. But whether you’re headed for the unemployment line or already there, here’s a handy primer to staying insured until you land your dream job with full benefits.
What should I know to start? The 62-day rule. The insurance industry plays a nasty little trick on consumers called the “pre-existing condition” restriction: It limits—or outright denies—coverage to new applicants who have any one of a number of medical conditions—including, of course, HIV. Thankfully, there’s a federal law called the Health Insurance Portability and Accountability Act (HIPAA) that protects you against such shutouts. (Get hip about HIPAA at 800.998.7542 or www.dol.gov/pwba/faqs/faq_consumer_hipaa.html.) HIPAA’s hitch? “Never let your coverage lapse for more than 62 days,” says Frank Pizzoli, head of Pennsylvania’s Positive Opportunities, which counsels HIVers on their benefits. Once your old plan’s coverage ends, you have 62 days (two months) to find new coverage—or HIPAA won’t protect you. Miss the deadline, and any new employer-sponsored plan can withhold coverage for your HIV care for up to a year. And private insurers can automatically reject you—unless you live in New York, New Jersey, Vermont or Maine, in which case there may still be waiting periods. Bottom line? As soon as you lose that workplace HMO, get covered again—fast!
What if I’m not going straight to another job? Here another federal protection comes in—the Con-solidated Omnibus Budget Reconciliation Act, better known as COBRA. It lets you (and your dependents) continue the insurance plan you had at your old gig for up to 18 months. (There are exceptions, such as California, where you get 36 months. Visit www.cobrainsurance.com for info on your state.) The very second you give or get the boot, get your COBRA application from Joe the Benefits Guy. Why the hurry? Because once you lose benefits, you have 60 days to opt into COBRA, then 45 more to mail your first payment.
Isn’t COBRA exorbitant? Yep. HIVer Anthony, 39, of Palm Springs, California, shells out about $300 a month for coverage while he job-hunts, and it can run higher than that. But take heart, Tony—and get ready for a slew of acronyms: In 37 states, the Ryan White CARE Act’s Health Insurance Premium Payment program, or CARE/HIPP (handled through your state’s AIDS Drug Assistance Program, or ADAP), will pick up an HIVer’s COBRA tab if current annual income falls below a certain level—and yours well may, now that you’re unemployed. Income cutoffs range from $18,000 to $45,000, depending on the state; some states may limit you by total assets (house, car, stocks, etc.), T-cell counts or other medical criteria. Be prepared to cough up bank accounts and other financial, and even medical, documents as proof along with your application. Call your state’s ADAP office (find the number at www.thebody.com/sfaf/drugassist.html) to see if you qualify. But beware: Even when ADAP agrees to pay, bad timing could leave you stuck paying the first month’s premium before you’re reimbursed. If that’s a problem, Chambers usually suggests asking a buddy for a loan (ha!) or seeing if your local ASO has an emergency cash service like the one at LA’s Aid for AIDS (323.656.1107, www.aidforaids.net). Some HIVers have even put that first month’s premium on plastic.
What if I can’t—and my state won’t—cover my COBRA? Take a deep breath and call your state’s ADAP office. If you fall below the income cutoff, ADAP may be able to help with your medical needs (ask if ADAP care will count you as “covered” under HIPAA so that you can get a “real” plan again down the line). Of course, ADAP benefits also vary widely by state: Some provide comprehensive coverage, others only limited medications. And at presstime, Congress was preparing to meet on the Ryan White funding that fuels ADAPs—the results of which could change ADAP resources and eligibility in several states. Stay abreast of the story (and find out how to join the fight to save ADAP in your state) at the ADAP Working Group’s www.tiicann.org.
If ADAP can’t get you what you need, many states allow Medicaid to pick up COBRA or private-plan bills. You once had to be on Supplemental Security Income (SSI) and disabled, blind or over 65 to qualify, in addition to being poor. Now some states grant a “pre-disability waiver” if both your income and assets are really low. Find out more at 877.267.2323 or www.cms.hhs.gov.
What if COBRA runs out and I can’t (or don’t want to) get a new job with benefits? First, start planning for that long before it happens—remember that under HIPAA, you have 62 days after COBRA ends to be covered again, or you’ll fall into the “pre-existing illness” purgatory. Now you gotta get yourself a private plan. (To learn your options, click on your state at www.actorsfund.org/ahirc—yeah, it’s an actors’ site, but it’s got great health-care info for all.) Sit down for the bad news: Those private insurance premiums ain’t cheap—in most states, an insurer will charge you what they think you will cost them. (Exceptions? New York, New Jersey, Vermont and Maine charge the same premium whether you have HIV, ADD or just bad manners.) If you’re in one of the 37 states that pick up eligible HIVers’ COBRA tabs, the CARE/HIPP program will often do the same for private plans. So call your state ADAP to see if it has CARE/HIPP, and if you qualify. Medicaid’s HIPP might pick up your premiums, too.
Still out in the cold? Check out some stopgap options (see "Desperate Measures", below). As for Mark Kuebel, he got New York’s HIPP to cover his COBRA for the next 18 months while he sets up his own acupuncturist/herbalist practice. He says working the safety net “completely changed my outlook on things, and my health and well-being improved.” It can work for you, too. Just know your options well ahead, advocate for yourself (squeak your wheel, dammit!)—and fight alongside your fellow HIV advocates to preserve ADAP funding in your state! In this economy, you never know when you might need it.
Love and marriage. Get covered through your spouse’s plan— or your lover’s, if his or her company offers domestic-partner bennies.
Veterans’ affairs. Whether you fought on the front lines or served as an Army florist, you’re eligible for Veterans Health Administration (VHA) insurance, which provides cutting-edge care...and meds for just $7 a copay! Call 877.222.VETS or visit www.va.gov/health_benefits.
Risky business. High-risk pools (available in 29 states) come with long waiting lists, huge deductibles, caps on lifetime benefits and premiums averaging $3,000 a year (CARE/HIPP or HIPP programs may foot the bill). But they’ll protect you under HIPAA until something better comes along. Find out more at www.cobrahealth.com/statehighriskpools.html.
Nailed to the cross. Blue Cross Blue Shield’s “minimum coverage” or “special care”plans likely won’t pay for all the care you’ll need but will keep you covered under HIPAA. Go to www.bcbs.com for more info.