Porphyria Educational Services

PORPHRYIA EDUCATIONAL SERVICES BULLETIN

Vol. 2 No. 14                            April 2, 2000

FOCUS:  Hepatitus C Infection  and Porphyria

            Several organizations are currently looking at the role of 

Hepatitus C and research grants have been offered by various leading 

groups to conduct both basic and clinical research regarding Hepatitus C.

Invitations and notices of such research were posted in June 

1998 and some studies are now well underway. 

         Such research  involves the areas of natural history, 

pathogenesis, therapy and prevention of Hepatitus C.

         Hepatitus C research would be most beneficial to many porphyria

patients, especially those with PCT.  A high number of PCT patients also

have the Hepatitus C condition in addition to their PCT.  Other hepatic porphyrias

are also known to sometimes deal with Hepatitus C.

            Some of the leading organizations involve in these studies 

include the National Institute of Diabetes and Digestive and Kidney 

Diseases,National Cancer Institute, National Institute of Allergy 

and Infectious Diseases, National Institute on Drug Abuse, National 

Institute on Alcohol ABuse,Office of AIDS Research, the American 

Digestive Health Foundation and the Office of Research on Minority Health.

        Chronic liver disease is experience by many porphyria patients as

the disease progresses and continues to manifests new or advanced 

symptomology. The hepatitis C virus is a major cause of acute and

chronic liver disease. In porphyria cirrhosis or liver failure 

may also occur.

        With the Hepatitus C experience by so many PCT type porphyria 

patients the infection goes from the acute stage to the chronic.

Acute hepatitis C leads to chronic infection in approximately 

75% of cases according to various studies that have been undertaken.

          Chronic hepatitis C is often asymptomatic and can be mild; 

but in a proportion of patients, the chronic infection leads to 

progressive liver disease. Many PCT patients with the Hepatitus C

in the past have  ultimately incurred cirrhosis and end

stage-liver disease, including hepatic carcinoma [liver cancer].

          The determinants of outcome and progression of liver 

disease in hepatitis C are unknown but may be related either

to viral, behavioral, environmental or genetic factors of the 

infected patient.  In addition, alcohol use, other medical 

conditions such as a form of porphyria, and co-infection with 

other viruses may also affect the disease outcome of hepatitis 

C infection. 

        Currently the treatment of Hepatitus C is not very good.

Only a small percentage of porphyria patients respond to

currently available therapies with long term remission of 

liver disease. 

            Researchers and physicians alike note that the most 

effective way to prevent the liver disease of hepatitis C is through 

the development of a preventative vaccine.  Thus, the focus of 

research for porphyria related Hepatitus C is the development of

a vaccine for hepatitis C. A study through NIH is providing partial

funding for such research.

        The future for porphyria patients with Hepatitus C lies in

the development of a vaccine for the Hepatitus.