Incidence of Suicide in U.S. Hemophilia Patients

The causes of death in hemophilia have changed in the USA over the past few decades. Prior to the 1970’s, individuals with hemophilia were succumbing to the seriousness of the hemorrhagic disorder with bleeds being an important cause of mortality. However, with the advent of clotting factor concentrates and the introduction of comprehensive care, a hemorrhagic cause of death became less likely with life expectancy rising to almost that of the non-hemophilic population in the early 1980’s. The onset of the HIV epidemic changed this encouraging statistic, with more than 60% of HIV-infected individuals with hemophilia succumbing to this virus to date. Hepatitis B and C have also taken their toll. However, prior to the HIV epidemic, during the peak period of the epidemic and in the post-HIV period, health care providers continue to express concern about deaths due to suicide. Since 1998 the 135 federally funded Hemophilia Treatment Centers (HTC) have enrolled over 13,000 males with hemophilia, representing over 80% of hemophiliacs who receive care at these HTCs, in the Universal Data Collection (UDC) surveillance program. We used data on all deaths among UDC enrollees, as well as non-UDC enrollees at the HTCs to estimate the incidence of suicide over the nine year period of surveillance. Data from completed mortality forms of both UDC and non-UDC enrollees were analyzed to determine the incidence of suicide episodes for the period 1998 through 2007. There were a total of 17 suicide deaths over this time, producing a crude rate of 12.5/100,000 person years, compared with the rate for the US male population of 17.7/100,000. Because the hemophilia population is younger than the general population, age adjusted suicide rates were also calculated. Detailed age distribution data were available only for persons enrolled in UDC. Therefore, adjusted rates were based on 8 suicides among the 554 deaths that were reported for persons enrolled in UDC. All 8 suicides occurred among White non Hispanic males between the ages of 20 and 61 (Mean =36.1 years). Three of the persons who died from suicide were HIV positive, one was HIV and HCV positive, one HCV and HBV positive, and one was HCV positive. The crude rate of suicide for persons enrolled in UDC was 16.1/100,000 persons years. Using the indirect age adjustment method the adjusted rate is 11.5/100,000 person years, based on 2004 census data, resulting in 5.8 predicted deaths. The observed and expected numbers of deaths were not statistically significantly different. The available data does not indicate a suicide mortality rate higher among hemophilia patients receiving care at HTCs enrolled in UDC than the US male population.