Skip to main content


Showing posts from September, 2011

Meet Expert Dr. Joseph R Bloomer, MD

Joseph R. Bloomer, MD

Porphyria specialist, Dr. Joseph Bloomer recently won the most prestigious Presidential LIVER DISEASE AWARD given at the American Association for the Study of Liver Disease.
Dr. Bloomer was also honored as the Cecil J. Watson Lecturer at the University of Minnesota.The lecture series was named for Dr. Cecil Watson, who was the first Chairman of the Department of Medicine at the University of Minnesota. In Dr. Watson’s honor, this yearly lecture brings in outstanding scientists and clinicians that are interested in liver disease, porphyria and heme metabolism. Dr. Bloomer’s work in porphyria and liver disease exemplified those passions for science and clinical care.
Dr. Bloomer served as Professor and Director of the Division of Gastroenterology , Hepatology and Nutrition at the University of Minnesota from 1983 until 1995 when he was recruited to the University of Alabama (UAB) to begin the UAB Liver Center, which has come one of the top liver centers in the coun…

Why We Need Your HELP NOW!

We are in need of your participation to help save the life saving medications for all Porphyria Types.
We may be shy, we may not want anyone to know we have a rare disease, but if you or someone you love or know has Porphyria and needs medication, what would happen if it was not available any more?  What would you do?  Coould you do anything?  We need people to open up, step up and share your story on how Porphyria has affected you personally, as a family member but most importantly if you have taken these orphan drugs we need you to write to your Congress men/women, email them, call them, write them to make this bill 340b come alive to see the need that they need to make a change and why.

Please really think about this and act quickly time is running out!  For more details contact: or call 866-apf-3635.


This is the biggest legislative problem affecting people with porphyria that we have encountered in the last 30 years. A new bill was introduced in Congress at the end of July that will impact access to orphan medicines, H.R 2674 - The 340B Improvement Act. This legislation will expand government price controls to a wide range of locations, regardless of need, in some instances forcing medicines to be sold for as low as a penny, regardless of the costs to innovation and patient access. If the bill passes, a number of treatments for rare diseases, including porphyria, may no longer be available.

While well-intentioned, such an expansion of price controls could be devastating for those people who now take Panhematin or who may need to take it in the future. I will explain why.

This bill forces drug companies sell treatments to approximately 5000 hospitals for artificially low prices, regardless of the costs to manufacture and the cost to distribute. In some instances, orphan medici…