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Acute Porphyria
Medical Moment: Do you know the benefits of Prophylactic Heme Treatment? Read the abstract from an article written by Porphyria Expert, Dr. Herbert Bonkovsky. Attachment to the full article included below.
Acute intermittent porphyria (AIP), an autosomal dominant inborn error of metabolism, is the most common and severe form of the acute porphyrias. Attacks of severe abdominal pain, often with hypertension, tachycardia, are cardinal features of AIP, often requiring hospital admissions. Frequent recurrent attacks of AIP, defined as > 3 attacks in one year, during which at least one attack requires intravenous heme therapy, are associated with significant morbidity, lost productivity, and health care burden. We report two patients with such frequent attacks of AIP, who have been managed with prophylactic heme therapy on a weekly basis. We describe results particularly in relation to symptom control, biochemical findings, health care costs, quality of life, and utilization of resources. During 11-month duration of weekly prophylactic heme infusions, we observed a 100% decrease in acute attacks and inpatient admissions in one subject and a 75% decrease in the other. During this time, we also observed a significant decrease in the number of emergency room visits. The decrease in number of acute attacks requiring hospital admission was associated with significantly decreased health care costs and improved quality of life. Reduction of both emergency room visits and hospital admissions decreased the utilization of health care services. Outpatient weekly infusions were also noted to be associated with better reimbursements and reduced overall costs of health care for the subjects. Both our subjects also endorsed better symptom control, quality of life and better understanding of disease. Thus, prophylactic heme therapy, through a multi-disciplinary approach, decreases the incidence of acute attacks, decreases health care costs and leads to better patient satisfaction and quality of life.
PCT
Medical Moment: Hepatitis C
According to experts - “Hepatitis C is common in PCT. In some areas where this viral infection is quite prevalent, especially in southern Europe and some parts of the U.S., as many as 80% of PCT patients are infected with this virus. How this particular virus contributes to developing PCT is not known. Other hepatitis viruses are seldom implicated.” If you have Hepatitis C, have PCT and you are interested in participating in research, please contact Edrin Williams, Director of Patient Services for information about the Harvoni Study!
CEP
Medical Moment: Do you have our CEP Informational Page? This page can be shared with your caregivers and healthcare providers as an educational tool. Please click on the link below to download! If you would like me to send you a hard copy via mail, please email me at edrinw@porphyriafoundation.org - Edrin Williams, Director of Patient Services.
