There was a time when financial planning for HIV positive people seemed utterly beside the point. Historically, if it happened at all, “planning” meant little more than cashing out your life insurance policy so you could live fully before dying comfortably. (POZ’s founder, Sean Strub, used part of his life insurance settlement to start this magazine in 1994.) But the protease inhibitor revolution of 1996, which provided life-prolonging meds to those fortunate enough to access them, erased the “sell by” dates for many living with HIV. (Strub, for instance, is very much alive.) Howard Grossman, MD, former executive director of the American Academy of HIV Medicine, says, “Today, no one knows the life expectancy for people with HIV. Estimates are that many positive people, especially those recently infected with HIV, can expect to have a normal lifespan.” It seems hard to imagine how getting a new lease on life could ever be a bad thing. But for those who’ve adjusted to imminent death, facing a long and healthy future can, arguably, prove just as disruptive. Although having HIV no longer means sacrificing your dreams—going back to school, starting a business, having 2.5 kids, retiring to Boca—it can mean having to figure out how to pay for them, while footing the bill for your health care. Many who’d been only too happy to spend their life’s savings as if there was no tomorrow now face the tab for financial decisions made when they banked only on death.
It seems ironic that we can be so intensely responsible in other parts of our lives—adhering to grueling med regimens, navigating safe sexual behaviors, helping to raise awareness and fight stigma—yet still flail at the ATM. In a recent survey of POZ’s readers, nearly 70% said they worry about money “a lot.” Before we share the secrets to long-term solvency, we’ll confront the attitudes toward money that get people in trouble in the first place (while remembering that people with HIV aren’t necessarily bad bankers; many were merely reacting to extremely taxing circumstances). And trust us: There’s hope. “Anything is fixable,” says Beth Jones, a New York City financial planner with more than 50 HIV positive clients. “I’ve had clients with seemingly impossible financial situations, and there are lots of methods to get out of them.” So read on and discover how to invest in the long life you earn dearly every day.
Boost Your Emotional Profile
For many people, HIV is just one more reason to hit the fiscal snooze button. After her late-stage diagnosis in 2002, Tracey Kelly, now 43, was sure her days were as numbered as the zeros in her savings account balance. So she maxed out her credit cards on fancy meals, electronics and clothes—the virus had “helped” her lose 100 pounds. “Here I am four years later,” she says, “with 382 T cells, a nearly undetectable viral load and guess what. Bad credit.”
For others, the virus proved to be a shrill alarm, a waking nightmare of sorts in which saving for retirement or any other far-off goal seemed forever out of reach. In 1994, having watched two boyfriends die of AIDS, Michael Van Essen, knowing he was positive too, figured he couldn’t have much longer to live either. He went to Europe, drove across the United States, went to Europe again. He bought houses, cars, “anything I wanted,” he says. Today, his CD4-cell count is higher than it’s been in 15 years, and Van Essen, 52, having spent his life’s savings, lives off a modest income in Los Angeles. “I hate it,” he says. “I can do it, but I hate it.”
For still others, HIV has, fortunately, been a true financial wakeup call. When retired financial planner Don Krouse, 55, came down with AIDS-related shingles in 1984, his doc told him to go out and spend his retirement money because he had two years to live. “I said, ‘But what if I do live?’” recalls Krouse. He planned accordingly and now lives in a brand-new two-bedroom home on two and a half acres near Palm Springs, California. “I am by no means wealthy,” he says, “ but I never stopped saving toward the future, and here I am, reaping the rewards of reasonably good behavior.”
While there are those who lived as if there would be plenty of tomorrows, the spending habits of many people with HIV mirror those of Kelly and Van Essen. Why are cases like theirs still so common? Mainly because the reality that AIDS is often no longer a death sentence doesn’t guarantee that people living with AIDS perceive it that way. Van Essen, now a benefits counselor specializing in earned income at AIDS Service Center, in Los Angeles, says that this fatalism is a hangover from the not-so-distant past. “People were told, ‘Spend what you can and play because you have no future.’ Five and ten years ago, everyone said that: physicians, AIDS service organizations [ASOs], anyone involved in HIV. That attitude is still part of the culture today.”
Mel Byrd, 42, who works in information technology for a Texas telephone company, considers himself a pragmatic guy. When he tested positive, in 1997, he “took a minute” to feel sorry for himself, then started treatment on his doctor’s recommendation. But when it came to money, he says, “I just didn’t want to pay attention anymore. I had this sense of ‘I’m not gonna make it for more than ten years, so why make long-term plans?’” Even though Byrd tested positive after triple-combination therapy started definitively saving lives, he was still haunted by the nightmarish scenes of the dying AIDS patients he saw on TV in the ’80s. Today, nearly ten years since he was diagnosed, Byrd says he still spends his money haphazardly and is constantly behind the eight ball because of student loans, car and mortgage payments. “I’m like, ‘Crap—you didn’t plan for anything and you’re still as bad off financially as you were when you were really sick,’” he says.
Jones says she and her clients “look at life expectancy actuarial tables that say they’re gonna live to be 85. But a client will say, ‘I don’t think so.’ And I’ll say, ‘Fine, but if you don’t die we have a new problem: You have no more money; you’re a pauper.’” Adds Jones, “Tough love is a big part of my work.”
Stop Cashing Out
Fatalism isn’t the only reason people with HIV squander their financial futures. There’s also an urge to live for the moment, a notion our consumer-driven culture and the advertising promoting it hardly dispel. “Look at the guys in the AIDS-drug ads,” says Michael Buitrón, 44, an HIV positive vocational counselor in Long Beach, California. “They’re pictured at the beach or having a barbecue, not saving for retirement!” Undetectable since his mid-’90s diagnosis, Buitrón says his initial attitude toward money was “I can’t take it with me so I might as well enjoy it.” He lived like this until 2000, when an experimental cholesterol drug meant to combat his elevated lipids and lipodystrophy landed him in the hospital. You’d think the illness would have only deepened his belief in enjoying the moment to the fullest, but “getting sick made me realize that working isn’t forever—you better have a contingency plan,” he says. Indeed, many with HIV have to face the reality of periods of illness between bouts of health—or
before checking out altogether.
As a result, Buitrón has been saving ever since his hospitalization, amassing $200,000 for retirement and potential illness. Yet even today, he has lingering doubts about his desire to do so: “I’m physically able to visit friends in South America. It’s a once-in-a-lifetime trip, and I could afford it if I put less into my 503b retirement account.” He says, “I’ve seen friends who saved for retirement but who wound up being put on a drug that requires refrigeration. Their opportunity of a lifetime has been lost.”
Settle the Balance
Others are caught in a triangular benefits/credit card/earnings trap. While Tracy Bruce’s two sons lived with her in her suburban Atlanta home, her long-term disability and social security benefits from her deceased husband (a check for her and each child) covered the family’s expenses. If she were to try to put away something for the future, however, the government would cut the amount she received for her children. Now that her youngest son is in college, her social security income has been cut in half.
Despite living with HIV for more than 16 years and surviving bouts of shingles and PCP, Bruce, 46, “would like to die of old age,” but saving for that old age—not to mention continuing to support her son—has become nearly impossible. Despite working part-time (she doesn’t think her health can take the stress of a full-time job), her credit cards are maxed out, and, thanks to Medicare part D, she copays on meds previously covered by ADAP. “I’ve chosen to sell my house—there goes my American dream,” she says. “If I get the asking price, I can pay off the credit cards and car note. But then I still have a problem with my housing situation.”
Running the benefits maze, not to mention staving off the threats of collection agencies, is enough to make HIV positive debtors simply want to give up and play dead. “A lot of our clients hate to open their mail,” says Mary Fox, a senior staff attorney with Gay Men’s Health Crisis in New York City who counsels people on debt management. “It’s depressing! Who wants bad news? It’s scary if you’re being sued by credit card companies. People don’t realize their benefits are protected.”
Krouse does the government paperwork for himself and his positive partner. “He can’t stand it,” Krouse says. “[Applying for benefits] is extremely paperwork intensive. You ask for the social security paperwork, you appeal, you get denied—many people throw up their hands and shut down.” Those who depend on employer benefits fear that tinkering with them could be catastrophic. Byrd wishes he had signed up for a better long-term disability plan with his employer but says, “I’m terrified of drawing attention to myself. Texas isn’t that friendly, and I don’t want to get fired.”
Other HIV factors can affect how you handle your finances: med side effects, stress, depression. Some people fear disclosing their status via employer health plans, so they pay for insurance themselves or don’t get it at all. Or they turn to family for years on end, a source that can dry up and be emotionally draining too. One POZ reader from Florida writes, “Friends and family don’t want to hear about your fears and financial woes. They’ve given so much already. For many of us, our aging parents are strapped themselves.”Are there solutions, you ask? Yes—and here they are:
Put Mind Over Money
1: The first step toward getting your bucks in a row has absolutely nothing to do with money. Before dealing with your financial health, experts insist, you must treat your mental health. “If clients are dealing with big mental health issues,” says Jones, “it’s much harder to make an impact.” Fox recently had a 25-year-old client who had just tested positive and had $25,000 in debt and significant student loans. “He asked ‘What should I do? Should I declare bankruptcy?,’” she says. “The answer depends on where he sees his life going. I told him to come back in a few months if he didn’t need to work right away. He could keep his public assistance and get his mental health in order.” So if you’re feeling lost or battling depression or other mental health issues, get treatment from your doc or local ASO before you try to face big financial decisions. Even if you’re not having mental health issues, Jones emphasizes that you must be emotionally ready for financial planning—which means checking your aforementioned fatalism at the door. “It’s important to take a realistic view. You’re here,” she says. “If you don’t plan, you’re kind of silly.” For those folks who might have gone on postdiagnosis shopping sprees, especially in the ’80s, it also means not beating yourself up for past mistakes. “You have to be committed to move beyond having messed up,” she says. “Acknowledge it, and forgive yourself—otherwise it can become an excuse.”
Get Professional Help
2: Find a planner. As a person with HIV, you know the importance of partnering with medical professionals. Dealing with your finances is no different. Consulting with a financial planner, especially one who has worked with HIV positive people, and/or an ASO benefits counselor can potentially save you money and headaches. Once upon a time, Don Krouse was Michael Van Essen’s financial planner. “I didn’t listen to him,” says Van Essen ruefully. “If you can find a positive planner, do so, and do what he or she says!” You don’t have to be rich to see a financial planner. Jones’ clients “with little or next to no means” simply pay by the hour.
More than half of positive people rely on Medicaid for meds or treatment—if you’re one of them or you get any other kind of government assistance, it’s essential that you consult with a benefits counselor about it not only to make sense of your long-term financial picture, but to make sure you’re getting all the help you can. “Clients think they’re taken care of, but that’s often only 10% true,” says Van Essen. In New York and California, states with the highest numbers of positive people, you can earn up to $44,000 and $50,000 respectively and still qualify for some ADAP benefits. Even millionaires can get help. “One of my clients made millions in the dot-com years. He was having his condo foreclosed because he spent all his money on medical care. It’s tragic. His life was ruined because he didn’t know what he was eligible for,” says Van Essen. A counselor can also tell you how much part-time work you can get without jeopardizing your benefits—and if you can, you should. Says Michael Buitrón, “People who earn even a tiny bit more than those on straight disability, their lives are so much better; it helps erase a lot of life’s little worries.”
Now Start Planning
3: Map a strategy. Unfortunately, there is no one formula that applies to everyone. However, there are some basics that virtually every financial planning book or adviser will want you to be aware of. You may be ready to run out and start picking stocks—but your first task is building a solid network of protections for your assets, your health and your family.
Financial options are more complicated than ever, so you need an expert. The best way to find one is to ask friends of similar age and income for recommendations. (As for the experts in this article, contact Jones at 845.752.2216 or firstname.lastname@example.org. Krouse is retired but is available to POZ readers via email@example.com; reach Van Essen at firstname.lastname@example.org.)
For planners who have experience with people who have HIV, scour the classified ads of your local gay publications; planners who advise the gay community may have had positive clients. Note: Working with a planner should be enjoyable, so ditch those who confuse or intimidate you, and never sign over your power of attorney.
Study Insurance and Long-term Disability
4: Research these building blocks of a solid long-term financial plan. Some experts, like Per Larson, author of the book Gay Money, advise positive people to put “benefits before salary” when you’re on the job market. When you get sick, the only way to avoid spending your own money to pay the bills is medical insurance. That, says Krouse, is simply “protecting what you’re accumulating,” a basic investment rule. Larson estimates that HIV positive people already have $10,000 in yearly unreimbursed medical expenses (like copays, therapy, better food, nutritional supplements and over-the-counter drugs).
Similarly, disability benefits protect your salary because they allow you, in essence, to continue to draw a salary should you become unable to work. Even if you’re HIV negative, your chances of becoming disabled are farily high: One in eight Americans will be disabled for 90 days or longer. Some planners, like Jones, want to see you add on private disability insurance (employer disability benefits usually cover only 60% of your salary), though positive people aren’t always eligible.
Next, master life insurance, which offers financial security for your loved ones. Sometimes, for a higher premium, there are accelerated payment options—if down the road your doctor diagnoses you with one year to live, some policies will pay out a significant amount while you are still alive. If you already have life insurance, Jones urges you to make sure you don’t miss the premium payments because it can be difficult to get once you’ve been diagnosed (it’s easier through an employer).
Krouse is adamant about not passing up medical, disability or life benefits because of the short-term cost, especially when they’re part of your employment package. “I see that constantly. People object to the fact that they need to protect themselves or their accumulations and would rather go out to the movies and play with friends,” he says.
There are many other types of insurance—renter’s, homeowner, car—and Krouse would like to see you get whatever you can afford. Remember, he says, “you accumulate tangible assets, but you protect them through insurance.”
So now you can hit the stock market, right? No way. You must also determine how your finances will hold up if you become seriously ill or die. “You accumulate assets during your lifetime, and you protect them—well, you also have to decide what you want done with them. It’s extremely important for the people you care about,” says Krouse. That means designating a power of attorney to someone you trust and creating a will.
Such measures are especially important for lesbians and gay men who don’t have the same legal protections as heterosexuals. “I’ve seen too many horror stories,” says Jones, “couples that have been together 10, 20 years—the wealthy one dies first, and the family can swoop in and change the locks.” An experienced attorney is the best option, but estate planning needn’t be prohibitive: any lawyer can help you write a will for a reasonable cost, or you can do it yourself (visit www.nolo.com for advice and info).
Set a Budget
5: Once you’ve laid out your insurance and estate safety net, start to create a budget by adding up all of your monthly expenses, everything from dog food to your electric bill to your gym membership, and figuring out what you can reduce or eliminate, so you can start saving. It’s much easier than you think. Van Essen follows David Bach’s book Start Late, Finish Rich. “It’s called the latte factor. Take one thing you purchase daily and could do without. You’d save thousands if you did without a daily latte. I did that with the train, instead of driving to work,” he says.
If you’re a live-for-the-moment type, credit cards are a danger. “We only use money orders and cash now,” says Tracey Kelly. “If it’s not in the bank, you don’t have it.”
Build EmergencyReserves and Retirement Accounts
6: What do you do with the all this money you save? Two things—create emergency cash reserves and retirement accounts for when you no longer can—or no longer wish to—work. Most people are familiar with 401k plans (403b if you work at a nonprofit) and IRAs. These accounts allow you to deposit pretax money, and it accumulates tax free. However, it’s a basic tenet of financial planning that you also have anywhere from three to 12 months worth of emergency reserve in an account—say a savings account—that you can access immediately. “The mortgage, the rent, your health care premiums—if your income stops through job loss, downsizing or you become ill or get in a car accident, you need that emergency reserve,” Krouse says, How much should you save in your 401k or IRA once your emergency reserve is set? It depends on your goals and the restrictions of the account, as well as how late you are to the financial planning party. Many people start with 10% of their income, or any significant amount that might not cramp their style.
If you’re fortunate, you earn enough to get all your insurance and benefit protection in place, set up emergency reserves, save for retirement—and invest. As for the stock market, Jones says the key is “a diversified portfolio that’s actively managed.” Different investments flourish at different times, so having many kinds—say, stocks versus bonds versus gold—lessens risk. Most planners suggest investing systematically over time, so peaks and valleys average out. Frequent rebalancing is also a basic technique: Make sure that regardless of how one or two of your investments performs, the percentage of your total investments, say, in stocks versus bonds, doesn’t change significantly and your portfolio remains diverse.
7: Enjoy the rewards, which may include this surprise: It can be a lot easier to say (and believe) that money isn’t everything when you have a good chunk of it socked away. Tracey Kelly and her girlfriend had a combined income of $130,000, which went a long way in Decatur, Illinois, roughly five years ago. Now, due to HIV, they live off $50,000, have no checking account or credit cards and stay in at night to save money. But Kelly’s life is figuratively as rich as ever. In 2005, she worked with the Red Cross, helping Texas victims of Hurricane Rita file for emergency relief. She works part-time at a pet shelter, and her own six dogs and “thousands of cats” are always there for her “no matter how shitty I feel,” she says.
Because she faced the reality that she was here for the long haul and hitched her dreams accordingly, she will be able to provide for her future security. Kelly, who has health care and a long savings plan, feels freer than she ever did when she was spending, well, freely. “You gotta get on with it,” she says. “It’s not the worst thing in the world not to be able to book hotels online when I want! I have great kids, parents and friends. It could have been worse.” Pass the latte, please.
Additional reporting by Kathleen Reeves