The Business of AIDS
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FRED DE SAM LAZARO: In the gay community, Bill T. Jones is an icon, an artist who has remained at the peak of his career, even enhanced it, after becoming infected with HIV. The 43- year-old dancer and choreographer routinely plays to sell-out audiences, gay and straight.
BILL T. JONES, Dancer/Choreographer: Being the responsible artist that I am, rather than take my agony and become an alcoholic or have huge ulcers, I began to make work which examining how do I live with this, with this pain, and I call it survival, life hurts.
FRED DE SAM LAZARO: Jones earns enough money to support himself comfortably, but others have found multimillion dollar opportunities meeting the needs of HIV-affected people. “Poz” Magazine, which recently featured Jones, is targeted precisely at this group. It was founded a year and a half ago by Sean O’Brien Strub, an activist in the gay community, also suffering from AIDS.
SEAN O’BRIEN STRUB, Strubco, Inc. The overarching big picture objective with “Poz” is to change how we view AIDS, that the idea that AIDS is a death sentence, and it’s a terminal illness and it’s inevitably fatal has been drilled into us again and again and again and again. And I am living proof that that is not true. It certainly is true for many people. But for thousands, and a very significant percentage, they live many, many years.
FRED DE SAM LAZARO: “Poz” Magazine is just one component of what has grown into a $10 million a year enterprise. The chief source of revenue for the company called Strubco is a mail order pharmacy managed by Stephen Gendin.
STEPHEN GENDIN, Pharmacy Manager: Most of our customers are taking a lot of medication and even managing the process of getting their drugs is very complicated, so we try to make it as easy as possible by keeping track of when people need their prescriptions by filling out their insurance paper work for them so they don’t have to do that, by shipping it directly to their house so they don’t have to worry about going back and forth between the pharmacy.
SEAN O’BRIEN STRUB: And we become their advocate. And we fight with the insurance company. If the insurance company says they won’t cover something, we’re the ones that go to them and say, oh, yeah, why not, you know, you covered it for this person, or you covered it for that person. I mean, the companies that are just totally–it’s just the bottom line dollar and nothing else matters, I think we’re the other end of that spectrum.
FRED DE SAM LAZARO: For the most part, businesses like Strubco, run by and for people affected by HIV, have not drawn criticism. However, controversial enterprises have also sprung up, run by people with no emotional ties to the AIDS market. One of the most lucrative is so-called viatical settlements, the purchase of life insurance policies from AIDS patients. Meir Eliav heads Legacy Benefits, one of the largest viatical companies.
MEIR ELIAV, Legacy Benefits Corporation: There is very little public information, and we can only rely on informal data that being circulated according to different sources we are talking about $500 annual market right now, and it’s expected to grow substantially over the next few years.
FRED DE SAM LAZARO: Businesses like Eliav’s, some financed by banks, others representing wealthy individuals, pay AIDS patients a percentage of the face value of their life insurance policies, usually 60 to 80 percent, depending on their life expectancy. In exchange, the buyer becomes the policy’s beneficiary. For many AIDS patients like Jim Fielding, facing unemployment and large medical bills, life insurance policies are often the only major financial asset.
JIM FIELDING: What I wasn’t counting on was losing my job, umm, and at that point I was in a state where I had, I had no money. I was recovering from the financial difficulties of the loss of my lover. Umm, I had medical bills to pay from a hospitalization, and, umm, I needed to, umm, to take on some responsibilities to get my life back in order. Umm, it was at that point that I decided to, umm, contact these places that buy your life insurance.
FRED DE SAM LAZARO: Fielding sold his $74,000 policy for $52,000 after weeks of negotiating and shopping several companies to bid up the price. He and other critics say many AIDS patients lack this savvy for what is an emotionally difficult business.
JIM FIELDING: And that’s a lot for a lot of people to psychologically swallow because they’re going to see paper work that has their life expectancy on it that they have to sign; they’re going to see their medical records that they have to sign and turn over. If you’re not really emotionally– handle–have a handle on it, it can be devastating, especially if you’re in a situation where you’re in a crisis.
FRED DE SAM LAZARO: The viatical industry has been plagued by complaints of unscrupulous sales tactics and low settlements. Few critics want to see the trade outlawed, but many are repelled by what they call death futures. John Arras is a medical ethicist.
JOHN ARRAS, Ethicist, University of Virginia: I, I think that, you know, some people might be tempted to say that this is an incredibly exploitative operation, you know, that these companies are like buzzards, you know, circling, waiting for people, you know, to die and recoup the money from their insurance policies, and that they’re dealing with people by and large who are poor, sick, desperate, you know, people who are not in a very strong bargaining position.
FRED DE SAM LAZARO: Eliav says regulations passed in many states requiring background checks of investors and better disclosure to clients have ended abuses. He insists viatical companies rescue many desperate people, rather than exploit them.
MEIR ELIAV: You have to understand that in many, many cases people did not have the money to pay the premiums, so what is happening, there was a life insurance policy for $100,000, the insured did not have the funds to pay the premiums. The policy would expire. Nobody would have gotten the money. In this case, we come into the picture, we have advance 70, 75 percent of, of the policy funds to an individual, 70 on the $100,000 policy has $75,000. That’s a lot of money that changes the quality of life for many, many people.
FRED DE SAM LAZARO: Including investors like Eliav. With returns of 20 to 25 percent, many larger companies have entered the viatical business and begun to target terminal cancer patients who far outnumber those with AIDS. Handsome as those returns seem, they are dwarfed by another AIDS-driven market, home infusion. Like many AIDS patients, Kent Dillon takes his medications through a catheter attached directly into a vein. Although occasionally monitored by a nurse like Lanny Ballard, Dillon is able to administer the medicines, himself.
LANNY BALLARD, Nurse: (talking to Dillon) Draw a little bit of blood back.
FRED DE SAM LAZARO: Home infusion, perhaps more than any single service in health care, has seen meteoric growth. It accounts for about 2/3 of all medical expenses incurred by AIDS patients. Kent Dillon says it is money well spent in his case.
KENT DILLON: I told the woman at the place where I work, I said, you know, I’m just freaked, like $10,000 a month for the rest of my life, that’s so much money. And she said, well, now wait a minute, you know, like you’re still able to be productive and move and, and walk.
LANNY BALLARD: Not only has these different technologies extended the–extended or improved the quantity of life, we’ve also improved the quality of life as well, so, you know, patients are able to live a normal life, and live with the AIDS virus.
KENT DILLON: I don’t know if it’s normal, but it’s–no, it’s a life.
LANNY BALLARD: It’s better than if you were in the hospital.
KENT DILLION: I’ll tell you–yeah.
FRED DE SAM LAZARO: Although well worth it to Dillon–and most of his costs are borne by a private insurer, ethicist Arras says home infusion prices are grossly inflated.
JOHN ARRAS: When Mark Green was the commissioner of consumer affairs for New York, uh, he published a very revealing document that, that, you know, demonstrated mark-ups of a pretty amazing magnitude. Green figured that this is costing the companies maybe something like $2,000 a month. The charges to customers and insurance companies comes to something like $16,000.
FRED DE SAM LAZARO: The home therapy industry is tight-lipped about profit margins, but Anthony Esposito, vice president of New York-based The Care Group, says insurers have historically not quibbled over price since they viewed home infusion as a saving.
ANTHONY ESPOSITO, The Care Group: Beginning in the 80′s, we saw actual profit margins that extended to 2,000 percent. At that point, it was mainly non-regulated. The insurance companies, the payer sources, were not as familiar with the home care entity of infusion. They saw it as a saving from a hospital environment, and in many cases, it was, because in the hospital environment, you’re paying for the hospital day, the bed, the full service of the hospital staff, the nurses, the physicians. In the home, it was cheaper because you’re not paying for all the service provision and the actual hospital costs.
FRED DE SAM LAZARO: Health economist and author Peter Arno worries not just about prices but also fraud in the home infusion business, especially when it comes to debatable practices like nutrition therapy that’s supposed to be for terminal patients unable to swallow and digest.
PETER ARNO, Health Economist: The relationship between cost and, and price is very, very distorted because people are desperate and they’re, they’re victim to, uh, to, uh, fraudulent activities not only of their home care companies but home care companies in collusion with physicians, where kickbacks have been made between the doctors and the companies to get more and more patients hooked on some of these therapies. And the signs show that they have very limited efficacy at all.
FRED DE SAM LAZARO: Arno says patient advocates have managed to get new laws passed in many states to curb fraud in the AIDS market, but to their discouragement, that market promises to continue growing. That’s because the rate of new HIV infections among gay males, after flattening out, even declining in the late 80′s, has begun once again to rise.