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Ethics committees
Stevenson R, Ranjadayalan K, Wilkinson P, Roberts R, Timmis AD. Short and long term prognosis of acute myocardial infarction since introduction of thrombolysis. BMJ 1993; 307: 349-53. 4 Pantridge JF. The effect of early therapy on the hospital mortality from acute myocardial infarction. Q J Med 1970; 39: 621-22. 5 The Acute Infarction Ramipril Efficacy (AIRE) Study Investigators. Effect of ramipril on mortality and morbidity of survivors of acute myocardial infarction with clinical evidence of heart failure. Lancet 1993; 342: 821-28. 3
Haemophilia challenges
treatment centres: old and
SiR-Before 1982, the primary
new
bleeding, independently
and
as
co-morbidities, continue to Moreover, the legacy of
pose substantial unresolved issues.
HIV is a permanent fear with respect to transfusion safety, with treatment decisions based on a "never again" mentality. Nonetheless, despite the challenges of HIV disease in haemophilia, the newborn baby and his family face a hopeful era with safer products. Haemophilia treatment centres should now refocus their energies on the many issues facing the newly diagnosed case, including reassurance about treatment
safety.
*Suzanne Gaynor, Louis Aledort, Margaret Hilgartner, Richard Lipton, Parvin Saidi, Joyce Strazzabosco, Prad Pratok
of death among patients with haemophilia was spontaneous bleeding. With the onset of HIV infection, this causality began to change. Because most HIV-infected haemophiliacs remain within the treatment centre network, the progression of that illness has been well documented. However, little has been recorded as to other causes of morbidity or mortality. Eyster and coworkers’ reported that between 1976 and 1991 deaths from bleeding fell from 19% to 10% whereas AIDS mortality rose to 43%. The ravages of the hepatitis C virus and liver disease, especially in combination with HIV, have led to an important cause of mortality for this group of patients.2 Region II health and human services haemophilia diagnostic and treatment centres in New York, New Jersey, and Puerto Rico have been collecting data on morbidity and mortality since 1985, adding all new births in 1986. This region is one of the largest in North America, with 2177 registered patients from a population base of over 35 million. Since 1985 there have been 364 deaths, 259 (71%) of them from AIDS. Many of these patients also had liver disease. In the 105 deaths that were not attributed directly to AIDS, both HIV-positive and HIV-negative patients are included: 6 (6%) were suicides, and 9 (9%) were the result of malignant disease, 22 (21%) liver disease, and 34 (32%) excessive bleeding. The remaining 34 were deaths from all other causes, including 16 in which the cause was unknown. Although the focus has been on AIDS-related mortality, we have recorded 232 births over the past 9 years. Since haemophilia is not always diagnosed at birth, we expect that these data are not complete. Nonetheless, we see 2 births for every 3 deaths per year. Surviving HIV-positive patients are tracked with the revised Centers for Disease Control and Prevention (CDC) classification for HIV. Of the 401 patients identified as HIV positive, 75 (19%) have AIDS indicator conditions, and another 34 (9%) have symptoms with CD4 cell counts under 200. On the other hand, 241 (59%) patients remain symptom free, although 52 of them have CD4 counts of less than 200 (table). We conclude that AIDS is overwhelmingly, the main cause of mortality in haemophilia patients. Liver disease and cause
*Mount Sinai Medical Center, Box 1078, New York, NY 10029, USA; Cornell Medical Center, New York Hospital; Long Island Jewish Medical Center; UMDNJ, Robert Wood Johnson Medical Center; and Mary M Gooley Hemophilia Center
1
2
Eyster ME, Schaeffer JH, Ragni MV, et al. Changing causes of death in Pennsylvania’s hemophiliac 1976 to 1991: impact of liver disease and acquired immunodeficiency syndrome. Blood 1992; 71: 2494-95. Eyster ME, Diamondstone LS, Lien JM, Ehman C, Quan S, Goedert JJ. The natural history of hepatitis C virus (HCV) infection in multitransfused hemophiliacs: effect of coinfection with human immunodeficiency virus (HIV). J Acq Immunodef Dis 1993; 1: 602-10.
Ethics committees to all chairmen of local medical ethics behalf of hard-pressed clinicians who wish to committees, continue to participate in high quality national trials such as that reported by Chessels and colleagues (Jan 21, p 143) but are frustrated by the current cumbersome and highly wasteful system of local ethics committee approval. This system demands that these trials go through the full local application process up and down the nation. Much of the cost in time, effort, and paper could be avoided by the use of national ethics committees, but local ethics committees rightly continue to guard their powers of approval. A suitable compromise might be achieved through the use of a nationally standardised application form. In the case of multicentre trials this form would be completed chiefly by the central trials organiser with suitable information added by the local investigator and submitted for local ethics committee approval. This procedure would improve the consistency of information given to local ethics committees, save much unnecessary duplication of work by the local applicants, to help expedite applications (which can take several months), and help to standardise the evaluation of applications. It might also avoid the bizarre occurrence of a national trial being ethically acceptable to one district but not to its immediate neighbour.
SIR-I make
a
plea
on
G Robbins Department of Haematology, St Luke’s Hospital, Guildford GU1 3NT. UK
Ethics of executed person
on
Internet
SIR-Roeggla and colleagues (Jan 28, p 260) suggest that publishing medical images of a condemned man on the Internet is unethical. Surely this is absurd? Clearly the death penalty itself is unethical under any circumstances, as is any participation in such penalties. However, in the present instance, the individual concerned clearly made it a personal wish that his body be used in this way, and to override his wishes is unjustifiably paternalistic. To say that helping to carry out the wishes of a dying person is unethical is ludicrous; PGL=persistent generalised lymphadenopathy; HHS=Health and Human Services. Table: Revised CDC classification for HIV; HHS region II haemophiliacs, January to June, 1994
to
R
one
well argue that it would be unethical last meal if he claimed to be hungry.
as
may
supply him with
a
Glynn Owens
Health Studies Research
Division, University of Wales, Bangor, Gwynedd LL57 2EF, UK
653
Haemophilia challenges
treatment centres: old and
SiR-Before 1982, the primary
new
bleeding, independently
and
as
co-morbidities, continue to Moreover, the legacy of
pose substantial unresolved issues.
HIV is a permanent fear with respect to transfusion safety, with treatment decisions based on a "never again" mentality. Nonetheless, despite the challenges of HIV disease in haemophilia, the newborn baby and his family face a hopeful era with safer products. Haemophilia treatment centres should now refocus their energies on the many issues facing the newly diagnosed case, including reassurance about treatment
safety.
*Suzanne Gaynor, Louis Aledort, Margaret Hilgartner, Richard Lipton, Parvin Saidi, Joyce Strazzabosco, Prad Pratok
of death among patients with haemophilia was spontaneous bleeding. With the onset of HIV infection, this causality began to change. Because most HIV-infected haemophiliacs remain within the treatment centre network, the progression of that illness has been well documented. However, little has been recorded as to other causes of morbidity or mortality. Eyster and coworkers’ reported that between 1976 and 1991 deaths from bleeding fell from 19% to 10% whereas AIDS mortality rose to 43%. The ravages of the hepatitis C virus and liver disease, especially in combination with HIV, have led to an important cause of mortality for this group of patients.2 Region II health and human services haemophilia diagnostic and treatment centres in New York, New Jersey, and Puerto Rico have been collecting data on morbidity and mortality since 1985, adding all new births in 1986. This region is one of the largest in North America, with 2177 registered patients from a population base of over 35 million. Since 1985 there have been 364 deaths, 259 (71%) of them from AIDS. Many of these patients also had liver disease. In the 105 deaths that were not attributed directly to AIDS, both HIV-positive and HIV-negative patients are included: 6 (6%) were suicides, and 9 (9%) were the result of malignant disease, 22 (21%) liver disease, and 34 (32%) excessive bleeding. The remaining 34 were deaths from all other causes, including 16 in which the cause was unknown. Although the focus has been on AIDS-related mortality, we have recorded 232 births over the past 9 years. Since haemophilia is not always diagnosed at birth, we expect that these data are not complete. Nonetheless, we see 2 births for every 3 deaths per year. Surviving HIV-positive patients are tracked with the revised Centers for Disease Control and Prevention (CDC) classification for HIV. Of the 401 patients identified as HIV positive, 75 (19%) have AIDS indicator conditions, and another 34 (9%) have symptoms with CD4 cell counts under 200. On the other hand, 241 (59%) patients remain symptom free, although 52 of them have CD4 counts of less than 200 (table). We conclude that AIDS is overwhelmingly, the main cause of mortality in haemophilia patients. Liver disease and cause
*Mount Sinai Medical Center, Box 1078, New York, NY 10029, USA; Cornell Medical Center, New York Hospital; Long Island Jewish Medical Center; UMDNJ, Robert Wood Johnson Medical Center; and Mary M Gooley Hemophilia Center
1
2
Eyster ME, Schaeffer JH, Ragni MV, et al. Changing causes of death in Pennsylvania’s hemophiliac 1976 to 1991: impact of liver disease and acquired immunodeficiency syndrome. Blood 1992; 71: 2494-95. Eyster ME, Diamondstone LS, Lien JM, Ehman C, Quan S, Goedert JJ. The natural history of hepatitis C virus (HCV) infection in multitransfused hemophiliacs: effect of coinfection with human immunodeficiency virus (HIV). J Acq Immunodef Dis 1993; 1: 602-10.
Ethics committees to all chairmen of local medical ethics behalf of hard-pressed clinicians who wish to committees, continue to participate in high quality national trials such as that reported by Chessels and colleagues (Jan 21, p 143) but are frustrated by the current cumbersome and highly wasteful system of local ethics committee approval. This system demands that these trials go through the full local application process up and down the nation. Much of the cost in time, effort, and paper could be avoided by the use of national ethics committees, but local ethics committees rightly continue to guard their powers of approval. A suitable compromise might be achieved through the use of a nationally standardised application form. In the case of multicentre trials this form would be completed chiefly by the central trials organiser with suitable information added by the local investigator and submitted for local ethics committee approval. This procedure would improve the consistency of information given to local ethics committees, save much unnecessary duplication of work by the local applicants, to help expedite applications (which can take several months), and help to standardise the evaluation of applications. It might also avoid the bizarre occurrence of a national trial being ethically acceptable to one district but not to its immediate neighbour.
SIR-I make
a
plea
on
G Robbins Department of Haematology, St Luke’s Hospital, Guildford GU1 3NT. UK
Ethics of executed person
on
Internet
SIR-Roeggla and colleagues (Jan 28, p 260) suggest that publishing medical images of a condemned man on the Internet is unethical. Surely this is absurd? Clearly the death penalty itself is unethical under any circumstances, as is any participation in such penalties. However, in the present instance, the individual concerned clearly made it a personal wish that his body be used in this way, and to override his wishes is unjustifiably paternalistic. To say that helping to carry out the wishes of a dying person is unethical is ludicrous; PGL=persistent generalised lymphadenopathy; HHS=Health and Human Services. Table: Revised CDC classification for HIV; HHS region II haemophiliacs, January to June, 1994
to
R
one
well argue that it would be unethical last meal if he claimed to be hungry.
as
may
supply him with
a
Glynn Owens
Health Studies Research
Division, University of Wales, Bangor, Gwynedd LL57 2EF, UK
653