Rather than miss his first day of college three years ago, John Delmonte Jr., a cancer patient from Methuen, Mass., arranged to have his final round of chemotherapy administered at home by a private provider. The $6,540 tab -- more than 10 times what Boston's Beth Israel Hospital had charged for each previous infusion -- enraged the family. "I can understand an extra $500 or $1,000, because they had to come to my house," fumes Delmonte's father, John, who withheld the insurance check to the firm for a year hoping to prompt an investigation. "We're talking about a rip-off."
Price gouging is just one of the nasty surprises in the burgeoning and virtually unregulated field of intravenous drug and nutrition services known as home-infusion therapy. Without careful monitoring, patients can develop adverse reactions to the drugs; as in a hospital, catheter sites can become infected. Nor is home infusion free of fraud: Federal investigators have unearthed dozens of schemes involving kickbacks by home-infusion companies to physicians for referrals, as well as false Medicare claims. At least six criminal grand-jury investigations are underway.
Few dispute the medical merits of home infusion. Propelled by the advent of small, programmable pumps in the 1980s, outpatient IV therapy has grown from a cottage industry providing "tube" feeding for people with digestive disorders to a $4 billion-a- year business serving half a million patients with ailments as diverse as AIDS and Lyme disease. Providers range from local pharmacies to international chains like Northbrook, Ill.-based Caremark International that provide 24-hour nursing services and patient billing assistance. All told, more than 20 different treatments, from pain control for cancer patients to infusions that thwart premature labor, are now available in-home -- often at substantial savings over hospital or even out-patient care. Health reform promises to further fuel the industry's expansion as patients get discharged "quicker and sicker."
Home sooner. The growth of infusion therapy is hardly surprising. Properly administered, it offers substantial lifestyle advantages. Antibiotic therapy has enabled people with heart infections to go home in a few days rather than languish, essentially healthy, for two weeks in a hospital. For scleroderma patients like Kathryn Posey, 48, a former legal secretary from Reston, Va., whose intestines no longer can absorb food, home infusion allows her to resume such daily routines as fixing breakfast for her teenage son. Beyond that, it allows her to live. "It's this or starvation," she says, pointing to a plastic bag of milky nutritional formula and the catheter that slowly drips it directly into her chest. Indeed, at one point Posey, a petite 5 foot 3, was down to 75 pounds. Thrice-weekly infusions from a backpack-size device -- and weekly blood monitoring by a Caremark nurse -- now keep her above 100 pounds. In addition, Posey has learned to infuse herself with antibiotics for painful finger infections as well as inject herself twice a day with drugs to reduce bloating. "I was really intimidated at first," she says. "But if this is what I have to do to live, I'd rather live."
The price, however, is very high. As Health and Human Services Principal Deputy Inspector General Michael Mangano puts it: "The technology opened the door and then the bucks followed. This is a wonderfully well-paid service." Indeed, insurers like BlueCross BlueShield of the National Capital Area, based in Washington, D.C., have seen home-care and infusion charges double annually; today's $50 million represents some 3.3 percent of total claims - - propelled in part by drug markups as high as 2,000 percent.
Patients, too, have been hit by sticker shock -- particularly people with AIDS, who find home infusion a boon for administering the drugs needed to treat infections that plague people with impaired immune systems. While working in Seattle, musicologist Mike Seyfrit's bill for 45 days of medication to ward off blindness and infections came to $47,000 -- some 27 percent higher than the average cost of a whole year's dose and easily three times more than he paid at home in Oregon. His insurer shelled out $14,000 and now is dickering with the infusion service for Seyfrit. In a 1991 investigation, New York City's consumer affairs department found "Pentagon-style" markups as high as 1,200 percent; one home-care company charged $9.84 for sterile water that cost $2 at a pharmacy. "There are a lot of AIDS profiteers out there," says Henry Chang, director of research and development at Shared Medical Research Foundation, an AIDS clinical-trial group in Los Angeles. "I call it a major opportunistic infection," he grimly jokes. Indeed, AIDS treatments account for a quarter or more of the revenues at some infusion firms.
Equally lucrative, though medically far more controversial, are long-term antibiotic infusions for Lyme disease. Some doctors have put patients on IV therapy for three or four years in an effort to combat the debilitating joint pain, paralyzing headaches and lethargy associated with chronic Lyme, with home- infusion companies eager to accommodate. Trouble is, few Lyme experts believe that more than a month or two of infusions helps. And the potential complications can be significant. A dozen New Jersey youngsters with Lyme disease lost their gallbladders after lengthy infusions of Rocephin, an antibiotic commonly prescribed in 1990 and 1991. Physicians detected the problem and switched medications, and all recovered. However, such complications and cost concerns prompted the American College of Rheumatology to issue guidelines last fall limiting all antibiotic infusions for Lyme disease -- a recommendation many insurers have adopted.
Caught in the crossfire are Lyme sufferers like the Galambos family of Piscataway, N.J., who discovered only belatedly that their coverage for home-IV benefits was limited and who are now suing their insurer for curtailing payments. Jim, a postal worker, has had numerous infusions over the years to combat pain and memory lapses so severe he has difficulty sorting mail. Daughter Dawn, 14, consulted several experts in 1991 and 1992 for complaints from a swollen knee to debilitating headaches only to be told she was depressed. Hospitalized last year for seizures, the once athletic teenager, by then on crutches and getting tutored at home, was finally diagnosed with Lyme disease and put on nine months of antibiotic infusions. "You've got to come up with something," says her pediatrician Dorothy Pietrucha of the Jersey Shore Medical Center in Neptune, N.J. "I take care of a lot of Lyme patients, and they are back to school and functioning. I call that a success."
Dawn returned to class, but specialist visits and infusion bills as high as $5,000 a week quickly depleted the Galamboses' savings account and credit card limits. Now, the family is going to court over $12,000 owed to infusion companies that insurance refused to cover. If it does not win, Dawn cannot resume treatment her physician says she still needs. "People with tuberculosis or acne get medication for years, and nobody asks any questions," complains mother Bonnie. "With Lyme disease, the red flag goes up."
The controversy hasn't hindered marketers of home-IV services. Physicians note with concern the spread of toll-free numbers that purport to be Lyme disease information hotlines but actually are fronts for infusion firms, some of which sponsor Lyme disease support groups. Federal investigators say some companies have paid physicians for referrals, often disguising the kickbacks as consulting fees, stock options or research grants. In New Jersey, the state board of medical examiners has temporarily suspended physician Vithaldis Shah's license for allegedly reckless treatment of 22 patients indiscriminately diagnosed with Lyme disease, then put on long-term IV antibiotics and narcotics. Two died. Moreover, Shah had referred them to infusion companies that reportedly paid him $150 a week per p
