nies are caught in a dilemma. Should they pay disability benefits to people being diagnosed with the controversial syndrome? They want to know if it's a real disease and how much it's going to cost them if large numbers of people become afflicted. As assistant medical director at Mutual Life of Canada, which has the greatest group health claims experience in the country, Proschek is well placed to track diseases affecting large populations. In a review of 20 000 claims submitted last year, only 88 people were found to have claimed CFS-related disability benefits, and he concluded that the elusive illness has hardly reached epidemic proportions. Although no established clinical criteria or laboratory tests exist to diagnose CFS, the Centers
for Disease Control in Atlanta has drafted general guidelines for research purposes. A presumptive diagnosis can be made when a patient has a profound disabling fatigue that reduces the usual level of activity by 50% for at least 6 months. Fatigue is generally accompanied by other symptoms that range from depression and muscle and joint pain to headache and flu. The Epstein-Barr virus (EBV) is the suspected culprit. The problem, though, is that most of the general population has antibodies to the ubiquitous bug, making it difficult for researchers to show a cause-effect link in CFS. "After reviewing all the files it came as a surprise to us that this difficult diagnosis of exclusion was made predominantly by
the family practitioner - in 76% of the cases", Proschek said. "Our study clearly shows that chronic fatigue syndrome is still a poorly understood condition. The medical information provided to us varied from benign and vague symptoms to clear physical impairments. No specific clinical pattern could be found in these claims except that all suffered from chronic fatigue." Fifty-eight per cent of the claims involved one or more secondary medical condition known to produce fatigue. Most common were heart conditions, hypothyroidism and infections, including mononucleosis. Laboratory tests were not helpful in pinning down any abnormality to support physical impairment related to CFS. Twothirds of the cases involved either
Insurance MDs want to make informed consent about HIV screening more informed The life insurance industry is about to respond to critics of
its human immunodeficiency virus (HIV) screening policy (see Can Med Assoc J 1990; 142: 379-380). Opponents charge that the information about HIV screening is hidden in fine print on consent forms and is easy to miss. Thus, it is likely that an applicant not only will be uninformed about testing, but also will not have given informed consent when the blood sample is drawn. Dr. Guy Tremblay of Quebec City, the new president of the Canadian Life Insurance Medical Officers Association (CLIMOA), said the association is now working on a pamphlet that will make "informed consent more informed". It will contain specific information on the nature and implications of 414
CAN MED ASSOC J 1990; 143 (5)
numerous tests that are likely to be conducted, including HIV screening, and will be distributed to all prospective clients. It is expected to become "the gold standard" for all Canadian insurance companies. While a positive HIV test in an asymptomatic person is traumatic, it is not the only test that can have a profound impact on a person's life, Tremblay noted. 'A positive HIV test is terrible. There's no treatment, we don't know what to say about prognosis, but at least the person can be counselled about protecting other people. "But the results of Qther tests can be devastating, too. If a person is positive for hepatitis B, he won't be able to get certain types of work. If a pilot has a bad ECG, he'll lose his job. People have to know these
-things so the>v- -eali understand. what's involved in applying fb1 a policy and hov 1v might affeL1l their lives. Dr. Douglas McFaddei. codirector of the Toronto Western Hospital's AIDS c.linR:. said" "Itfs ne0-Urobein i.porn to make sure thai i ndividuats are not just informed. in counselled. M.ost ofthe peopIC who are HIV pos)`Uive aund find. out through an insurance con-pany are asymptomatic. It was the last thing on earth thex were thinking of when they had the test done?" McFadden ri also concerned about qualt' control in HIV screening. yIf you test a large number of peo ple at random in a Jow-risk population, you're going t.o get a large numbe!.:)of false pos'. tives." Tremblax- sai.d. that while the issue of true positives
normal laboratory findings or results that were positively related to secondary medical conditions. Surprisingly, EBV antibody testing was not done in 13% of -the cases. When tests were conducted, results were positive in 90% of cases. This did not impress Proschek - he said the testing techniques used were so inconsistent that the results were virtually meaningless. Proschek said less emotion and more scientific scrutiny are needed. "There is certainly a lot of debate and a lot of doubt among those of us in the insurance industry. But we must look at the facts. Even though physicians can be their own worst enemies, we are also the strength and the source of the answer to all this. Until this is proven or disproven scientifically, we're faced
only with opinions. But as benefit providers we have to know exactly what we're paying for if we're going to pay." Proschek told CMAJ that there is general hostility in the insurance industry towards a CFS diagnosis, and his company evaluates claims on a case-by-case basis. "The client is the hostage in this controversy. Many of our claimants did not feel well, mostly because -they had another medical condition that would account for their problems. It's not fair to reject these claims outright when the family physicians have not done their homework." He's also concerned that if physicians are making diagnoses using slim evidence, they are not treating the real medical problems many of these patients have. The
asymptomatic people is delicate, false positives present an even stickier problem. That's why he opposes a cost-saving move afoot in the industry the use of urine instead of blood for HIV screening. "The high risk for false positives is not worth any money we might save by using urine instead of doing venipuncture", he said. The bottom line, though, is that the "gold standard" tests used to determine HIV infection - the Western Blot and enzyme-linked immunosorbent assay - might not be identifying all infected people. Dr. Peter Newman of the Retroviral Laboratory at the Federal Centre for AIDS presented early evidence that the new, supersophisticated polymerase chain reaction gene amplification technique appears able to pick up signs of latent infection
before a person becomes antibody positive. McFadden also described preliminary results of work that looked at anti-idiotype - antibody directed towards the antibody that binds to the HIV coat protein GP120 - in a small group of homosexual men who had had unprotected sex with AIDS patients. These patients were anti-idiotype positive but antibody negative, suggesting that antiidiotype positivity might be a marker for latent infection. It's too early to know what to make of these provocative suggestions, but they might turn out to be what Dr. Tom Porter, CLIMOA's past president, called a "bombshell", an undetermined but possibly large pool of people infected with HIV but who can't be detected with current testing methods.
only treatment for CFS is bed rest. Proschek does not think CFS is the refuge of malingerers. "Most people are honest. They would rather work than collect disability insurance." He urged scientists to keep an open mind, citing AIDS as an example of a significant disease that had many sceptics when the first cases of Kaposi's sarcoma were being reported. "CFS could turn out to be the biggest hoax of the century, but it could also turn out to be the biggest breakthrough in neuroimmunology." Historically, chronically ill children have been considered uninsurable because of their extremely high morbidity and mortality. Now, some insurance companies provide policies to help defray the enormous costs of their care. Unfortunately, physicians providing the care cah't help if they don't know the types of assistance available. Dr. Robert Hilliard, chief of the division of general pediatrics at Toronto's Hospital for Sick Children, wants the insurance industry to clarify its various assistance programs. "It's not always clear to the physician who's covered, what's covered and where the family can get help." Because of recent advances in medical care many chronically ill children are surviving in greater numbers for longer periods and Hilliard thinks this poses a huge challenge for society and physicians. For instance, he said that when pediatricians and family physicians are trained the focus is on acute illness and little time is spent on the long-term care of chronically ill children. The way doctors and society respond is important, he said, because from the pediatrician's point of view "the mreasure of society is how it treats its children, especially the disadvantaged and handicapped".CAN MED ASSOC J 1990; 143 (5)
415
for Disease Control in Atlanta has drafted general guidelines for research purposes. A presumptive diagnosis can be made when a patient has a profound disabling fatigue that reduces the usual level of activity by 50% for at least 6 months. Fatigue is generally accompanied by other symptoms that range from depression and muscle and joint pain to headache and flu. The Epstein-Barr virus (EBV) is the suspected culprit. The problem, though, is that most of the general population has antibodies to the ubiquitous bug, making it difficult for researchers to show a cause-effect link in CFS. "After reviewing all the files it came as a surprise to us that this difficult diagnosis of exclusion was made predominantly by
the family practitioner - in 76% of the cases", Proschek said. "Our study clearly shows that chronic fatigue syndrome is still a poorly understood condition. The medical information provided to us varied from benign and vague symptoms to clear physical impairments. No specific clinical pattern could be found in these claims except that all suffered from chronic fatigue." Fifty-eight per cent of the claims involved one or more secondary medical condition known to produce fatigue. Most common were heart conditions, hypothyroidism and infections, including mononucleosis. Laboratory tests were not helpful in pinning down any abnormality to support physical impairment related to CFS. Twothirds of the cases involved either
Insurance MDs want to make informed consent about HIV screening more informed The life insurance industry is about to respond to critics of
its human immunodeficiency virus (HIV) screening policy (see Can Med Assoc J 1990; 142: 379-380). Opponents charge that the information about HIV screening is hidden in fine print on consent forms and is easy to miss. Thus, it is likely that an applicant not only will be uninformed about testing, but also will not have given informed consent when the blood sample is drawn. Dr. Guy Tremblay of Quebec City, the new president of the Canadian Life Insurance Medical Officers Association (CLIMOA), said the association is now working on a pamphlet that will make "informed consent more informed". It will contain specific information on the nature and implications of 414
CAN MED ASSOC J 1990; 143 (5)
numerous tests that are likely to be conducted, including HIV screening, and will be distributed to all prospective clients. It is expected to become "the gold standard" for all Canadian insurance companies. While a positive HIV test in an asymptomatic person is traumatic, it is not the only test that can have a profound impact on a person's life, Tremblay noted. 'A positive HIV test is terrible. There's no treatment, we don't know what to say about prognosis, but at least the person can be counselled about protecting other people. "But the results of Qther tests can be devastating, too. If a person is positive for hepatitis B, he won't be able to get certain types of work. If a pilot has a bad ECG, he'll lose his job. People have to know these
-things so the>v- -eali understand. what's involved in applying fb1 a policy and hov 1v might affeL1l their lives. Dr. Douglas McFaddei. codirector of the Toronto Western Hospital's AIDS c.linR:. said" "Itfs ne0-Urobein i.porn to make sure thai i ndividuats are not just informed. in counselled. M.ost ofthe peopIC who are HIV pos)`Uive aund find. out through an insurance con-pany are asymptomatic. It was the last thing on earth thex were thinking of when they had the test done?" McFadden ri also concerned about qualt' control in HIV screening. yIf you test a large number of peo ple at random in a Jow-risk population, you're going t.o get a large numbe!.:)of false pos'. tives." Tremblax- sai.d. that while the issue of true positives
normal laboratory findings or results that were positively related to secondary medical conditions. Surprisingly, EBV antibody testing was not done in 13% of -the cases. When tests were conducted, results were positive in 90% of cases. This did not impress Proschek - he said the testing techniques used were so inconsistent that the results were virtually meaningless. Proschek said less emotion and more scientific scrutiny are needed. "There is certainly a lot of debate and a lot of doubt among those of us in the insurance industry. But we must look at the facts. Even though physicians can be their own worst enemies, we are also the strength and the source of the answer to all this. Until this is proven or disproven scientifically, we're faced
only with opinions. But as benefit providers we have to know exactly what we're paying for if we're going to pay." Proschek told CMAJ that there is general hostility in the insurance industry towards a CFS diagnosis, and his company evaluates claims on a case-by-case basis. "The client is the hostage in this controversy. Many of our claimants did not feel well, mostly because -they had another medical condition that would account for their problems. It's not fair to reject these claims outright when the family physicians have not done their homework." He's also concerned that if physicians are making diagnoses using slim evidence, they are not treating the real medical problems many of these patients have. The
asymptomatic people is delicate, false positives present an even stickier problem. That's why he opposes a cost-saving move afoot in the industry the use of urine instead of blood for HIV screening. "The high risk for false positives is not worth any money we might save by using urine instead of doing venipuncture", he said. The bottom line, though, is that the "gold standard" tests used to determine HIV infection - the Western Blot and enzyme-linked immunosorbent assay - might not be identifying all infected people. Dr. Peter Newman of the Retroviral Laboratory at the Federal Centre for AIDS presented early evidence that the new, supersophisticated polymerase chain reaction gene amplification technique appears able to pick up signs of latent infection
before a person becomes antibody positive. McFadden also described preliminary results of work that looked at anti-idiotype - antibody directed towards the antibody that binds to the HIV coat protein GP120 - in a small group of homosexual men who had had unprotected sex with AIDS patients. These patients were anti-idiotype positive but antibody negative, suggesting that antiidiotype positivity might be a marker for latent infection. It's too early to know what to make of these provocative suggestions, but they might turn out to be what Dr. Tom Porter, CLIMOA's past president, called a "bombshell", an undetermined but possibly large pool of people infected with HIV but who can't be detected with current testing methods.
only treatment for CFS is bed rest. Proschek does not think CFS is the refuge of malingerers. "Most people are honest. They would rather work than collect disability insurance." He urged scientists to keep an open mind, citing AIDS as an example of a significant disease that had many sceptics when the first cases of Kaposi's sarcoma were being reported. "CFS could turn out to be the biggest hoax of the century, but it could also turn out to be the biggest breakthrough in neuroimmunology." Historically, chronically ill children have been considered uninsurable because of their extremely high morbidity and mortality. Now, some insurance companies provide policies to help defray the enormous costs of their care. Unfortunately, physicians providing the care cah't help if they don't know the types of assistance available. Dr. Robert Hilliard, chief of the division of general pediatrics at Toronto's Hospital for Sick Children, wants the insurance industry to clarify its various assistance programs. "It's not always clear to the physician who's covered, what's covered and where the family can get help." Because of recent advances in medical care many chronically ill children are surviving in greater numbers for longer periods and Hilliard thinks this poses a huge challenge for society and physicians. For instance, he said that when pediatricians and family physicians are trained the focus is on acute illness and little time is spent on the long-term care of chronically ill children. The way doctors and society respond is important, he said, because from the pediatrician's point of view "the mreasure of society is how it treats its children, especially the disadvantaged and handicapped".CAN MED ASSOC J 1990; 143 (5)
415
