Filling the Needs of Cancer Patients
“In advocacy work it's important to distinguish between acute and chronic ongoing medical conditions,” Dr. Riccardi explained. lmost by definition, and with few exceptions, cancer is a chronic disease. Patients often become debilitated and compromised, making assistance and guidance a crucial need.
“There are four areas of special concern for patients with cancer and other chronic diseases, where advocates can help,” he said.
''One is that this kind of situation goes on for many months, so that decision-making is drawn out and there is a lot of interaction with the health plan. For another, we can take some of the burden off the shoulders of overworked caregivers, who are often family members.
“A third is that the chronically ill often need various kinds of durable medical equipment, which may take some doing to obtain. And finally, the end stage of chronic illness frequently requires arranging for hospice care. This is something that should be taken into account and arrangements should be started early on.”
Ms. Cooper agreed. “All patients with acute conditions or ongoing illness are emotionally fragile,” she said. “Dealing with issues such as denied claims or incorrect information from providers can only increase the emotional burden. Also, the more claims you file, the greater the percentage that end up being problems. And people who are very ill file a lot of claims.”
What Patients Need to Know
About half of the questions Labyrinth deals with are, not surprisingly, claims related. The next biggest is education and benefit information.
“Patients have great difficulty understanding benefits,” Ms. Cooper said. “This is especially true with defined insurance, new programs with large deductibles that give employees more responsibility for payments. We get a lot of calls asking how to understand the charges.”
The third most popular category of questions concerns prescription drugs. “This is very frustrating to physicians and patients alike, because formulary rules keep changing and are not spelled out,” she said.
Another useful service that health advocates perform is simply to let patients and families know what benefits are available to them.
“For example, it is amazing the number of people with long-term, chronic problems who don't know they can request a case manager to grease the wheels between the health plan, the doctor, and the care givers,” Dr. Riccardi said.
“Many people are also unaware of the opt-out clause that makes it possible to go directly to a specialist,” he said. “They have it, are paying for it, and don't use it. Opt out can save a lot of time and grief, but it is information that plans aren't quick to offer.”
Dr. Riccardi offered an important piece of advice for the growing number of Medicare beneficiaries who live together but aren't married: “When one partner gets sick, the other has no influence over health care decisions unless the patient has executed a durable power of attorney for health care. I have had a number of people call because the medical team won't listen to anything they have to say. I encourage all people living together to have a durable power of attorney.”
What Doctors Should Know
Negotiating the health care maze is not part of the medical school curriculum and few doctors are experts at it. Ms. Cooper suggests they might be better off if they didn't even try. Although her company has no physician clients yet, she hopes to start a pilot program with a medical office.
“Running a medical practice is a business and it may be more effective to outsource certain services rather than trying to do everything within the practice,” she said. ''Health insurance options are becoming more complicated just at a time when more responsibility is being shifted to employees.
“With patients writing more personal checks, doctors should be prepared to answer a greater number of specific questions about what things cost,” Ms. Cooper warned. “What's more, they will often want this information in advance. This can't always be determined, but doctors are going to have to be able to respond in some way.”
The lesson that Dr. Riccardi emphasizes is to stick to your guns. “The most important thing doctors need to know is that if they have the guts to declare that something is medically necessary, it will get done,” he said. “But, they not only have to know what to say, they have to know how to say it.”
He recalled a case in which a woman with breast cancer who had been treated at Stanford Medical Center had recurrent metastases to her eye. Her referring physician wrote a note that said: “Patient wants to go back to Stanford.” The insurance company rejected the referral.
“This kind of wording is a signal for a turndown,” Dr. Riccardi said. “Physicians are in a stronger position than they think. But they need to say things in a straightforward way if they want to get them done.”
A Growth Industry
Both Ms. Cooper and Dr. Riccardi see health care advocacy as a growth industry, although she expects the field to expand more quickly than he does.
“One of the smartest things Federal Express did was to come up with the slogan, ‘when it absolutely, positively has to be there overnight,’” Dr. Riccardi observed. ''People know the value of the service, it's very clearcut. The problem with medical consumer advocacy is that people don't understand its value; they're not sure what they're getting for what they spend.
“Until now, most have been unwilling to pay the money, but that's changing. Like getting an accountant to help you deal with the IRS, more and more people are coming to realize they need help in dealing with the health care system.”
Rasburicase Approved for Managing Plasma Uric Acid Levels in Tumor Lysis Syndrome
The FDA has approved the use of rasburicase for the initial management of plasma uric acid levels in children with leukemia, lymphoma, and solid tumor malignancies who are receiving anticancer therapy expected to result in tumor lysis and subsequent elevation of plasma uric acid. The drug is made by Sanofi-Synthelabo under the trade name Elitek.
The rapid increase of plasma uric acid levels is one of the main elements of tumor lysis syndrome, which may be seen shortly following the initiation of treatment of hematologic malignancies, especially in children.
A major complication of the syndrome is acute renal failure, caused by precipitation of crystals of uric acid in the kidneys. Rasburicase converts uric acid into a soluble byproduct—allantoin—which is readily excreted by the kidneys, thereby permitting optimal treatment of the cancer.
A news release from Sanofi-Synthelab notes that the drug is contraindicated in patients with glucose-6-phosphate dehydrogenase (G6PD) deficiency, since it may cause severe hemolysis. Elitek may also cause severe hypersensitivity reactions including anaphylaxis, and its use has been associated with methemoglobinemia.© 2002 Lippincott Williams & Wilkins, Inc.
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