Sunday, November 24, 2013

An Important Message about Panhematin from Desiree Lyons APF Director

It has come to my attention that there is a great deal of misinformation floating around about a new research project with Panhematin . Unfortunately, this misinformation has some truth but is also replete with incorrect assumptions. I am happy to elaborate for any who want to know all about the research. Below is some of the story.

Now for the why hemin/Panhematin is being researched since it has been an effective treatment for decade. Note that the research grant shorn below says for treatment and prevention.. Panhematin is being widely used for prevention of attacks, because many doctors and experts have found it to be highly effective to prevent acute attacks. But that purpose is not on the label. Since it is being used more and more for this purpose , it is important to have research behind it . Some people have very critical attacks that are horribly painful and could be life threatening without treatment. Without Panhematin, I would have died many times. I only wish long ago we would have used it to prevent my attacks.

In addition, the Panhematin label say it is to be used for women with attacks congruent with leuteal phase of the menses. As you all know , it is used for all attacks and in men and women. Therefore, it is important to have this research, too. Therefore, the U.S. Food and Drug Administration just announced it has awarded 15 grants totaling more than $14 million to boost the development of products for patients with rare diseases. Karl Anderson, University of Texas Medical Branch Galveston, Phase 2 Study of Hemin for the Treatment and Prevention of Porphyria Attacks—about $1.5 million over four years. This is actually not much over four years considering the wide range of studies that will be conducted.

Some people are saying that this research is not necessary and that we could and will have heme arginate/Normosang instead. This is not the case. Heme arginate, which has the trade name Normosang, is licensed for use outside the US in a number of countries. Panhematin is only available in the USA unless that is a special request. The APF and Dr. Anderson and other experts tried for many year to get heme arginate to the USA, however, the company would not bring it here. First, there was an issue with the blood bank The blood bank in Finland where it was being manufactured, did not have the requirement of USA blood banks that the FDA required. Also, they would have to spend many millions for research to bring heme arginate here. .

Heme arginate and Panhematin are both owned by Recordati, an Italian Pharma company. Panhematin and heme arginate cost approximately the same Although some feel that heme arginate is more stable, now albumin is being used with both products , not just Panhematin. Seehttp://www.ncbi.nlm.nih.gov/pubmed/1713408 for use.
Knowing all of the story is essential before making assumptions where medicine and treatments are concerned There is much more to all of this but the most important issue is that patient volunteers are needed. We sincerely than all who have volunteered YOU ARE THE MEDICAL HEROS DRIVING US CLOSER AND CLOSER TO A CURE .
IF YOU ARE WILLING TO PARTICIPATE, PLEASE CONTACT ME AT LYONAPF@AOL.COM.
Participant will fly to the University of Texas Medical Branch in Galveston where Dr. Karl Anderson i conducting a number of porphyria research projects. Some of those projects do not require travel but only require your blood and answer questions that are very pertinent to the porphyria research. Many thank, d

"Remember.....Research is the key to your cure!"

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