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The following is part of the conversations with two individuals receiving the drug AMPLIGEN for the treatment of CHRONIC FATIGUE SYNDROME. We remind you to read DISCLAIMER.
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Ampligen has been viewed in the CFS community for many years as the most promising therapy for the treatment of the symptoms of CFS. What follows is the view-points of two Ampligen patients that we spoke with on 11/20/97.
Patient 1 - Male, approximately mid 40s, PhD in Psychology, Attorney. Patient 1 lives in NYC and has had CFS for at least 15 years.
Patient 2 - Female, early 30s, Professional. Patient 2 has had CFS for at least 7 years.
Do you think this represents a medical breakthrough?
Patient 1 - I have been on Ampligen for 22 weeks and in my experience I had 5 good weeks early on. I had pretty encouraging cognitive results. I can have a longer conversations. Virally I'm still not good. Fatigue-wise I'm not great. What we hear from the other Ampligen patients isn't anything terric yet. It seems to take 24-40 weeks to get the full effect.
Patient 2 - You should start to see some effect at about 16 weeks.
Patient 1 - There are a few reports that some people are doing well after about 4 weeks, which is when I started to do better.
Patient 2 - We are currently waiting for the results from the Belgium study so it can be submitted to the FDA.
What effect do you expect this will have on pain and FMS?
Patient 2 - We are hearing reports of patinets having better cognitive and fatigue levels but not so much for the pain. It is an anti-viral drug so I do have hope that since it is acting on the immune system that it will eventually help. I'm not sure if it is going to be a good drug for pain. The fact is that we don't know HOW the drug works.
Patient 1 - The priorities that I hear is that it works first on cognitive, then viral and energy. The pain is a little iffy. You may need to be on the drug for a while to see ny results for the pain.
How many people are on Ampligen?
Patient 2 - In the United States there are 15 right now, with 5 more about to start. In Canada there are 3 in Montreal and 1 in Vancouver. In Belgium, 50 patients were treated and only 25 completed the full course and that is what the data is being determined from.
How is Amlpigen administered?
Patient 1 - Ampligen is administered IV. The protocol is twice a week, usually Monday and Thursday for about 1 hour. We haven't heard anything about oral Ampligen. Dosage is up to 400 mgs after 2 weeks. They start you with 200 mgs. A lot of patients can't get up to 400 mgs because they are having reactions and need to build up to the 400 mgs.
Do you have to stay on Ampligen forever?
Patient 2 - We don't know if the truth is out there. When I started the drug I was under the impression I had to be on the drug forever if it worked for me. Since then there seems to be people who have been on it for 40 weeks that when they stopped taking it they still retained the benefit of the drug. The treatment protocol is 24 weeks then you can get an extesion or you can go on it for 40 weeks then go off it.
Patient 1 - In Belgium they have been doing this for a few years. I heard the same thing, that you can get off the drug after 40 weeks but we have been pushing for some objective evidenceof this rather than to rely on hear-say.
What is cost-recovery? If it goes through a double-blind study will that be a cost recovery process?
Patient 2 - The drug company is allowed to recover only the costs that is cost them to make the drug. They are not allowed to make a profit. Once you are up to the maximum dose the cost of the drug is $300.00 a week. In general the costs are $150.00 per infusion. Lab work is once a month at about 2-300 dollars. The blind study may have to be for free after six months. Those on the placebo can then get the actual drug.
Patient 1 - The cost is about $7000.00 for the entire drug protocol. That's just for the drug itself. The infusions really vary with what the Doctor is charging.
What about side effects to the drug?
Patient 1 - They vary. Flu type side effects, pain, heavy fatigue after an infusion. After the very first infusion I slept for 16 hours. Many people become achy and have swollen glands. This is classic because it's an interferon type drug. I don't think new patients can get Ampligen now due to the actual supply. The doctor's number is (514) 277-1141 in Montreal.
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