Making financial decisions is always tricky, but when they affect our health care, they become downright scary: For how long will my disability provider fork over benefits if I need them? Do I make too much to qualify for an AIDS Drug Assistance Program (ADAP)? Can I go back on government assistance if I can’t handle a full-time gig? The answers—often maddeningly complex and full of fine print—vary by person and by state. Worse, in Bush’s second term, everything from the Ryan White CARE Act to Medicaid faces changes or cuts that could limit the treatment and care of up to half of all HIVers. It’s enough to make you stay on the couch watching reruns of The Golden Girls.
Yet deal with these matters we must. So we got up and found three HIVers in typical work/money/health-care jams. One kicked coke, then kicked butt chasing a master’s degree on her way to a vocational makeover. But will a new dream job swallow her disability benefits? Another, in excellent health, refuses to ditch the freedom of temping even at the cost of comprehensive medical coverage. Finally, a buff but beaten-down HIV veteran is sick and tired of having to prove to disability providers that he’s, well, literally sick and tired. We hooked each of them up with experts for first-rate advice.
And not a moment too soon. Michael Van Essen, a benefits and work-services guru at AIDS Project Los Angeles, says people wait far too long to get help, costing themselves untold dollars and heartache. “They just didn’t know it was available,” he adds. Van Essen should know: In 1993, he retired from a demanding job at Boeing due to HIV-related disability, then made a mid-’90s life comeback that began with ASO volunteering and culminated in his current full-time gig. He urges HIVers braving tough work and benefit questions to find an advocate. Easier said than done: Not every AIDS agency has a one-stop expert like him. If you can’t find someone near you, call or e-mail the folks you’ll meet on these pages. Start with Van Essen at firstname.lastname@example.org or 213.201.1616.
Case No. 1: The Job Hunter
Name: Vicki Lynn
Resides: Tampa, FL
Goal: Go back to work
Roadblock: Lynn fears a job could jeopardize her public benefits.
HOW SHE GOT HERE
Vickie Lynn is a comeback kid. When this pretty, soft-spoken Tampa gal found out in 1991 that she’d gotten HIV from a former boyfriend, she toppled from a 9-to-5 office job into cocaine addiction, sporadic homelessness and chronic despair, deepened by her mother’s battle with lung cancer. “At one point,” Lynn, 39, recalls, “my T cells got below 50. I thought it was my last year. I lived on the street for two weeks. I was hearing voices. I had a nervous breakdown.”
Remarkably, she climbed back. After a stint in an AIDS hotel, Lynn took the modest inheritance left her by her mother and put a down payment on a condo, kicked coke and paid for college with Social Security Disability Insurance (SSDI, which all workers pay in to), Pell Grants and housecleaning gigs. This year, she’ll earn a master’s in social work. She’s got a “dreamy” new neggie boyfriend, Brian. She’s in good health. And she’ll soon seek a full-time job, hopefully in a women’s prison, where inmates are “pushed aside and forgotten,” as she was.
Like countless other HIVers itching to work again, Lynn fears that getting a job could mean losing her package of SSDI, Medicare and Medicaid. What if her new gig doesn’t pay her bills or offer health benefits—or HIV-related health complications one day interfere with her ability to work?
Until APLA’s Van Essen rode in, she was just one of many Americans on SSDI or SSI (disability for people who haven’t paid into SSDI) who don’t know about the government’s Ticket to Work (TTW) program. “It isn’t being properly promoted,” he says. TTW lets those on public disability earn up to a certain amount of income while keeping their payments and health benefits for several years—but then return to disability if necessary. “There are protections out there,” Van Essen says, “but you have to understand and navigate them.”
Under TTW, when Lynn starts working, she’ll get nine months to earn as much as possible and still get her monthly SSDI of $775. (Any month that Lynn makes below $590 won’t count as one of the nine.) For three years after those nine months, she can get her SSDI for any month in which she makes less than $830. For five years after that, she can be quickly reconsidered for SSDI if her original disability pulls her off the job. “This is wonderful!” says Lynn. “I didn’t know any of this.”
Once she receives her master’s degree, Lynn should be able to find a job with a good health plan, but should her job lack one, TTW lets her keep her Medicare for about $70 a month for nearly eight years—a great deal. Holding on to Medicaid, which covers Lynn’s meds, isn’t as easy. Some states let you “buy in” to Medicaid at an affordable rate, but not Florida. That may not matter: In 2006, when Lynn will be job hunting, drug coverage for Medicaid/Medicare “dual eligibles” like her will switch from Medicaid to Medicare’s new drug program, which makes users choose from a dizzying array of plans. Even
scarier? At press time, the program did not guarantee coverage of all HIV meds. Advocates still hope to change that.
Van Essen has one other money-saving option: vocational rehab (VR) programs, which subsidize TTWers’ job-training and education expenses (see “Finding Work,” below). “I’ll see if it can reimburse school costs I’ve already paid for,” Lynn says.
For Lynn, another anxiety lingers: For years, she has spoken publicly about her HIV. Should she disclose while job seeking? Van Essen and other experts strongly discourage it, at least until she’s held the job a while—and even then, she should “think nine times” before doing it, says Nancy Breuer of the HIV-savvy consulting firm WorkPositive. Employers have the right to know only that you’re fit for the job. Even if they wrongfully request your health details, you can withhold your HIV status without raising a red flag (see “Finding Work”).
For the moment, the only flag Lynn is concentrating on is the one waving over the starting line of her new life. Eventually, she says, she would like to create a scholarship for HIVers who have had a personal and career rebirth—those, like her, she says, who’ve “planned your life to die,” then, surviving, pursue “hope and goals instead of twiddling your thumbs.”
Ask for help. See if your local AIDS agency understands TTW, Medicaid, Medicare and other benefits. No? Then try your local benefits planner (visit www.vcu-barc.org, or call 804.828.1873), who can lead you to job retraining and explain TTW. If you’re on SSI or SSDI and you take a job, call your Social Security office: They’ll send you a work-activity form. AIDS agencies aiming to improve their benefits counseling should contact instructor (and HIVer) Daniel Fortuno at www.db101.org.
Test the waters. Been out on disability for years? Before working full-time, try part-time or volunteering (try an ASO!). You may lack the stamina for steady work—and that’s OK. Just do more than “have an intimate relationship with the TV remote,” says Breuer.
Protect yourself. Experts advise that you not call attention to your health status when you get a job offer, so ask to see the company’s entire benefits package—not just health and disability (call the health plan directly for details like which meds are covered). If a form asks you to list meds you take or preexisting conditions, leave it blank and attach a doctor’s note verifying that you’re fit for the job. And consider taking the max life insurance—it’s llikely your only hope of getting a substantial amount. Got more questions? Send ‘em to email@example.com.
Mobilize. In many states, ADAPs are woefully underfunded. Plus, there’s a chance that Medicare won’t cover all HIV meds. Contact the AIDS Treatment Activists Coalition at www.atac-usa.org to help change all that.
Case No. 2:
THE Working Girl
Name: Cynthia Walters
Goal: Get health insurance
Roadblock: To get it, this happy freelancer would have to work full-time.
HOW SHE GOT HERE
Cynthia Walters is changing. Though she has been healthy and undetectable since her 1996 diagnosis, this 42-year-old Chicago sistah has been hiding her HIV status for years, too scared even to date. “I went through [having HIV] alone,” she says, “and that’s one of the hardest things to do.” Now she’s “fed up” with the HIV closet. She placed a personal ad in the February/March issue of POZ, just in time for Valentine’s Day. She’s just fabulous at www.personals.poz.com.
But even in tough times, Walters has enjoyed her job validating mortgage loans. “It gives me the satisfaction of helping people own or refinance their home,” she says. She could get a full-time gig but prefers to work through a temp agency. Not only is she sent to different cities for weeks or months at a time but obnoxious bosses are short-lived, and she can take time off between projects. Then there’s the money: Walters brings in up to $50,000 in a good year. And these days, she’s serious about saving, saying, “I’m through with compulsive shopping!” Her long-term goal? A down payment on a condo. “I’m tired of my rent making somebody else rich!” she says.
Walters’ finances are in order, but her health insurance is another story. Like many other temp agencies, hers doesn’t offer coverage, even to loyal employees. Though she gets her HIV care and meds through Ryan White CARE Act funding and ADAP, she has no general health coverage. “If Cynthia gets hit by a truck,” says Anne Fisher, who heads the AIDS Legal Council of Chicago, “she could wind up with $30,000 in hospital bills. The next thing she knows, her paycheck is being garnisheed.” This is a dilemma common to many HIVers who earn more than the maximum allowed by Medicaid—but aren’t covered through their job. The lucky ones, like Walters, live in states with government programs robust enough to cover at least their HIV treatment. The unlucky ones must beg big pharma’s patient-assistance programs for meds and see any doctor they can—and that’s just for their HIV care.
“I’d suggest [Walters] heavily weigh the choice to be a temp against getting a full-time job,” Van Essen reasons. She could get her own health plan through high-risk insurance pools (some 30 states, including Illinois, offer them), which cover those priced out of other private plans due to costly illnesses like HIV. But the coverage doesn’t come cheap: Walters found one such plan for a hefty $587 a month, plus 20 percent of all med costs. With her HIV regimen, Walters would easily smash the $4,000 annual out-of-pocket cap, bringing her health expenses to about $10,000 a year. “I’m not giving nobody that much money!” she huffs. Double bummer for Walters: Though some states’ ADAPs will pick up the tab for private health plans, Illinois is not one of them.
Walters won’t rule out a future full-time job, with its promise of not only health coverage but an HIVer’s rare chance of obtaining substantial life insurance without a medical screening. (Walters says she would make her married daughter the beneficiary.) But she simply won’t trade the freedom of her current lifestyle just for a health plan. Her rationale isn’t too risky, considering that Illinois’ well-funded Ryan White/ADAP programs will likely stay strong, says Fisher. Still, should Walters be hospitalized for an emergency, she’d face a huge bill. “I’ll cross that bridge when I come to it,” she says. She will consider putting a more modest monthly sum—say $300—into a special savings account for health-care emergencies. But for now, Walters is set on putting her extra dollars toward her dream home.
Newly empowered Walters isn’t letting insurance woes hang up her positive attitude. Tired of hearing friends and family bitch about their issues, she’s planning a party where she announces to guests that she’s living—and looking for love—with HIV. It’s all part of what this slowly emerging butterfly calls “my intervention on myself.”
Covering Your Health
Get help. Find a financial/benefits specialist or caseworker at your nearest AIDS agency (visit www.thebody.com/hotlines.html, or call 800-HIV-0440). If there isn’t one, consider “patching” together help. You could e-mail or phone Van Essen (firstname.lastname@example.org or 213-201-1616), or befriend your state’s ADAP director. Remember: Polite persistence pays.
Know your state. ADAPs vary greatly depending on where you live. Some will cover a hefty private plan, while others won’t. Visit www.atdn.org/access/ states to get your state’s ADAP number and find out the details—but again, it’s best to start with someone who knows your state options inside-out.
Stay Covered. The federal Health Insurance Portability and Accountability Act (HIPAA) ensures that individual or workplace health plans can’t deny or postpone coverage for preexisting conditions (like HIV) as long as you’ve not gone without previous coverage for more than 62 days. If you’re coming off a job, it’s worth ponying up the COBRA premiums for 18 months, then going straight onto other coverage, public or private, until your next workplace plan. Only New York, New Jersey, Maine and Vermont guarantee the same rates for a private plan regardless of health status, but about 30 other states offer high-risk pools for folks who are turned away elsewhere. Such options are pricey but they’ll keep you covered. For state-by-state info, visit www.healthinsuranceinfo.net—but you may be able to get your own insurance broker through the National Association of Health Underwriters (703.276.0220 or www.nahu.org).
Beg for drugs. When all else fails, drugmakers offer patient-assistance programs that can get you free meds for HIV and other conditions if you meet income and other requirements. Learn more at www.phrma.org or call 202.835.3400—but you really need a doctor or caseworker to help you navigate this often intricate process. (Translation: Avoid it if you can.)
Case No. 3: The Reitree
Name: Al Benson
Resides: Los Angeles
Goal: Retain his long-term disabilty
Roadblock: His LTD provider is challenging his case.
HOW HE GOT HERE
Benson doesn’t look disabled. The 52-year-old Angeleno, diagnosed with HIV in 1991, is a beefy muscleman, thanks to years of steroids and weightlifting, to which he credits his survival. But his physique belies typical HIVer woes. Only recently, he says, have his T cells risen above 200, due to a salvage regimen of Kaletra, Agenerase and Viread. They’re among his six to eight daily drugs, including, sometimes, tincture of opium for severe diarrhea. “Lately, I haven’t even had energy for the gym,” he says. “I live for days when I feel more human.” These days, he stays busy running errands and keeping house while his partner is at work and offering treatment tips to other HIVers via online news groups.
He has subsisted on SSDI and private long-term disability (LTD) since 1993, when he left a stressful marketing job at Time Warner. “I wasn’t critically ill, but my T cells fell to 132,” he says. “I thought, ‘This workplace is making me sick.’” His long-term disability provider (LTDP) contributes enough to his SSDI to total 65 percent of his 1993 salary, a monthly income of approximately $2,000. He can’t live luxuriously, but it pays for his car and apartment. He says he has no savings after selling some life-insurance policies in 1994 for “a few tens of thousands” of dollars.
Benson is like many HIVers who left work on disability years ago expecting to die but were revived by protease therapy. Now, LTDPs are aggressively challenging Benson’s and many other long-timers’ private disability payments, with tactics like refusing to label fatigue and diarrhea as debilitating. For the past several years, Benson says, his LTDP has done “an annual sweep-through where they ask you for all this info.” Luckily, Benson’s doctor has satisfied them with impeccable records of his ailments, prescriptions and notations of his frequent inability to perform daily tasks. But two years ago, says Benson, his LTDP “upped the ante” by requesting that he submit to so-called functional capacity tests, like lifting objects.
Think that’s bad? Our work and benefits expert Van Essen says that he has heard from HIVers whose LTDPs actually cut them off; some were secretly videotaped running errands or hitting the gym so the LTDP could argue they weren’t disabled. Jacques Chambers, an LA-area benefits advocate who often counsels HIVers, says LTDPs systematically try to shed beneficiaries: “They say, ‘If we terminate 1,000 claims, we know that 872 of them aren’t going to fight, a certain number will try to appeal and then a few will get an attorney’”—at which point, says Chambers, insurers often decide it’s not worth the legal battle to continue denying benefits. That’s why it’s crucial you have an advocate (often, a lawyer) determine if you have a case, then intervene on your behalf. Chambers says that tells the LTDP that you’re not giving up that easily.
No way is Benson giving up. After consulting Chambers, he retained Elizabeth Lishner, an attorney specializing in the Employee Retirement Income Security Act (ERISA), which governs disability benefits. In letters to his LTDP, Lishner objected to their challenge, including the capacity tests, which can be injurious. That was a year ago, says Benson, and he hasn’t heard from his LTDP since: “[Lishner] says that no news is good news. Still, if they really wanted to push it, they could.”
Benson says the prospect of finding work to supplement his income is “frightening.” If his LTDP pushes, that’s the very reason why he and Lishner will push back with their day in court. “I’m not trying to have an easy life on disability,” Benson explains, “but I worked for these benefits. It’s my right to have them.”
Battling for Benefits
Scrutinize your LTD plan. “A few plans will only cover subjective [self-reported] symptoms [like depression, fatigue and pain] for a year or two, or won’t cover them at all,” says Chambers—which is why, when and if the time comes, you’ll want to prove that your symptoms are HIV-related.
Document your disability. If you’re employed, you and Doc need to keep excellent records from the onset of potentially disabling symptoms, including how they disable you (“left work early due to diarrhea” or “must nap during lunch”). Your doctor may want to test functions like your concentration and memory or send you to specialists. Ask your doctor to show you your records—skimpy scrawled notes just won’t do! And once you’re on disability, have Doc notify you whenever the LTDP asks for info. It could be a red flag!
Plan your exit. Give work a doctor’s note saying you need an indefinite sabbatical. Don’t say you’re leaving for good. Try not to disclose your medical details, either. And file your paperwork to ensure (in this order) your short-term disability, COBRA health-benefits extension, long-term disability and SSDI. Keep copies of all of it!
Brace for a challenge. Most LTDPs start scrutinizing you after two years, says Chambers, often forcing you to prove you’re unable to do not just your old job, but any job. If your LTDP starts reviewing your case more than twice annually or offering you a final lump-sum payment, it could signal they’re looking to deny your claim, says Lishner—and you need the help of someone like Chambers (888.739.2595 or www.helpwithbenefits.com). But most LTD experts are ERISA-specializing lawyers like Lishner who charge anywhere from $300 to $500 per hour. Find one at www.harp.org/atty.htm or www.lawyers.com or by calling your local bar association. You must make sure that they have ERISA experience, insists Lishner, who can be reached at 310.399.1344.