My name is Ann Fonfa, and I'm a cancer patient. I represent a group called The Annie Appleseed Project, and what we do is speak to and for cancer patients who are using alternative and complementary therapies which, as you probably know, is a majority of cancer patients. I also speak to health professionals and other people about this issue. So--patients are using complementary therapies and alternatives, which include dietary supplements and every single thing we heard mentioned here today. I echo the safety concerns of everyone else, but I have to say, for cancer patients, proof of efficacy has become the critical thing. People are doing things right now. They're not waiting for safety, and they're certainly apparently not waiting for efficacy. So, from my perspective we can solve two birds with one stone if we focus on efficacy, I think we'll find that that will resolve the safety questions pretty clearly. Standards for drug development that we're currently using for cancer have been toxicity, terrible effects that are called "side effects" but aren't. So we're not as concerned as others might be about the safety in the same way. We don't mean it in the same way that everyone else does. I also agree with many of the speakers that research exists and can be looked at, and I think it needs to be brought together in a way that will make it clear to cancer patients, and others, what it is that we can use appropriately. I don't think we should limit anything to a single element. That's been a problem in both drug development and with supplements. We know that people use things in combination, and that needs to be studied directly. We need to send a message to pharmaceutical companies that supplements can be used with their products, and that they need to be concerned about the dangers of their products. I don't think it's specifically the herbs and other things that are so dangerous, but the way they interact with pharmaceuticals. And(in respone to another statement made) I think if garlic is a blood thinner, that's not necessarily bad. It may indicate that we could consider using garlic as a way to reduce our use of pharmaceuticals, because every pharmaceutical product as unwanted effects. We want health care professionals to be involved. Not one was here today. That's a concern of mine. I think they should be part of this process. The final thing is patients start a regiment of supplements, and then they become scared because they are looking at the statement that says it hasn't been evaluated by FDA. And that's a concern, because they start something and they stop it. They may desperately need something. They may have been already finished with conventional treatment, which is the way most people use alternative or complementary therapies; or they're looking for them to reduce side effects. And since they're not sure how it works, its efficacy, they lose faith in it, and they stop at a point at which they might be gaining something from it. Because we're used to pharmaceuticals, we want an instant reaction, and yet we know that herbals and dietary supplement may take time--at least I know that, and you all know that. But many of the cancer patients are without direct information. So I truly think that going toward efficacy immediately, and having statements of efficacy would be extremely useful to our population. We're doing it now. Our lives are at stake. Our time is limited and our money's limited. Thank you. Ann's Comments to FDA on Dosage Concern about label approval at too-high a dose The oncologist article Ann's Letter to The Oncologist Lower Dose Capecitabine Better in Mets BCa Ann Fonfa's Comments to FDA on Zometa January 31, 2002 via letter read at the Oncologic Drug Advisory Committee meeting Ann's Letter to the British J of Medicine January 2004 Testimony: Cancer Advisory Panel Complementary & Alt Med Ann Fonfa's written testimony, July 8, 1999 Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.