Positive valcyte experiences

[satoshikasumi]

^^
See above. I was able to get my insurance company to pay for 100% of the costs of my Ampligen infusions when I participated in Amp 511. I provided them a copy of this statute with my claim, and they cut me a check for around $10,500.

However, I am not licensed to practice law in Nevada. You should speak with a Nevada attorney if you want to know if this law applies to your insurance policy.

 

[vli]

Sato I had no idea u were on amp. Hv u written abt ur amp experiences anywhere (here or elsewhere)?

 

[MishMash]

Skepticism is okay, MishMash, but I think you are catastrophizing about the costs of these treatments. Valcyte is either covered by insurance or is available FREE from the drug company for patients with an adjusted gross income below $100,000 a year. Rituxan is likewise available for FREE when it is not covered by insurance, based on the same criteria.

These drug companies that are successful set up charities to help people who can't afford their drugs.
Hemispherx/Ampligen is the sole exception because it is a small drug company that has been poorly managed and lacks adequate capitalization.

I have had insurance pay for both these drugs and other insurance refuse to pay for them. Different insurance administrators have different philosophies. If you live in Nevada, insurance companies MUST pay for Ampligen, by state law. And it never, never hurts to ask.

Yes, patients do need to weigh the limited and preliminary evidence for efficacy against the risks associated with these drugs, but cost should not be an issue.

This is not true. Insurance companies will not cover Ampligen. Also, most ME/CFS patients are on some form of medicare. They don't have private insurance. The occasional pharma assistance program you are referring to automatically excludes medicare patients. I know this, because the MS drugs runs the exact same racket. You want to take Tysabri for your MS and you have medicare? Cough up $2000 /month please. If you have private insurance, you are invited to enroll. I'm familiar with this.

 

[vli]

This is not true. Insurance companies will not cover Ampligen.

OK I am really bloody confused, I would be very grateful if someone cld tell me if they hv ever successfully or heard of anyone who got insurance to cover even part of their amp treatment. I have just NEVER heard it anywhere.

 

[satoshikasumi]

This is not true. Insurance companies will not cover Ampligen. Also, most ME/CFS patients are on some form of medicare. They don't have private insurance. The occasional pharma assistance program you are referring to automatically excludes medicare patients. I know this, because the MS drugs runs the exact same racket. You want to take Tysabri for your MS and you have medicare? Cough up $2000 /month please. If you have private insurance, you are invited to enroll. I'm familiar with this.

MishMash, see my post above. My insurance company DID reimburse me for my Ampligen drug and infusion costs. I swear. I cited to the Nevada law that requires them to do so. NRS 689A.04033

 

[satoshikasumi]

OK I am really bloody confused, I would be very grateful if someone cld tell me if they hv ever successfully or heard of anyone who got insurance to cover even part of their amp treatment. I have just NEVER heard it anywhere.

I did. I am speaking from personal experience. My insurance company DID reimburse me for my Ampligen drug and infusion costs for a year. I swear. I cited to the Nevada law that requires them to do so. NRS 689A.04033

The reason we have this law in Nevada is because the most powerful lobbyist in the history of the state, Harvey Whittemore, has a daughter with ME/CFS who responded only to Ampligen. He saw a compelling need to make experimental treatments more accessible to patients, because there are no approved treatments for this disease and Federal agencies at the time were committed to a psychological interpretation.

Again, this is a state law not a federal law. It doesn't help if your insurance policy isn't subject to Nevada law.

 

[satoshikasumi]

This is not true. Insurance companies will not cover Ampligen. Also, most ME/CFS patients are on some form of medicare. They don't have private insurance. The occasional pharma assistance program you are referring to automatically excludes medicare patients. I know this, because the MS drugs runs the exact same racket. You want to take Tysabri for your MS and you have medicare? Cough up $2000 /month please. If you have private insurance, you are invited to enroll. I'm familiar with this.

I'm a young patient so I don't have personal experience with Medicare. However, the way Roche/Genentech's patient assistance programs (GATCF) work is that they require you to get two denials from your insurer before they will provide free medication. This can be a time-consuming process, as it can take several months to get denied twice.

However, even if you don't have any insurance at all, this assistance program will still help you. The only people who aren't considered are the wealthy.

 

[satoshikasumi]

Sato I had no idea u were on amp. Hv u written abt ur amp experiences anywhere (here or elsewhere)?

Yes, I have written about my experiences many times on this forum. I was in the AMP 511 study in 2007-2008. While I am critical of Hemispherx's mismanagement I think they have a useful drug.

 

[Daffodil]

valcyte helped me a tiny tiny bit. my antibodies were never that high for EBV or HHV6 so i am not surprised i wasnt really a responder. i had no exposure to CMV.

whats interesting is, that valtrex made my RNase L go down from approx 2500 to 150. not sure what that means but normal is less than 75.

 

[MishMash]

MishMash, see my post above. My insurance company DID reimburse me for my Ampligen drug and infusion costs. I swear. I cited to the Nevada law that requires them to do so. NRS 689A.04033

This was because you were involved in a trial. Ampligen refuses to run any more trials. The FDA just asked them, and they refused. They are looking for cash-paying patients. And no insurance company would ever pay for drug that doesnt have FDA approval. I think that goes without saying.

I have no concern about the potential side effects, or lack of efficacy of Ampligen. People are free to make their own decisions. My only concern in all this is that indigent patients are being sucked in. And they will be left even more desperate and bereft than ever.

 

[MishMash]

I'm a young patient so I don't have personal experience with Medicare. However, the way Roche/Genentech's patient assistance programs (GATCF) work is that they require you to get two denials from your insurer before they will provide free medication. This can be a time-consuming process, as it can take several months to get denied twice.

However, even if you don't have any insurance at all, this assistance program will still help you. The only people who aren't considered are the wealthy.

Dr. Rey and Dr. Chia do not prescribe Valcyte, because it not intended for low-level viral reactivations. It is a powerful and potentially dangerous medicine. It was intended for post-transplant acute CMV infections. And they don't think it is effective. However, I personally understand the desperation that patients feel, and I wish them success if they want to try this drug. My only concern over this has been the huge costs involved.

Genentech's patient assistance program will not help anybody on medicare. Pretty much everybody in this country is enrolled in medicare (or medicaid), if they don't have private insurance. So I think their claim they will help "people with no insurance" is a bit of a canard. That is a tiny sliver of the population. Or possibly aimed at overseas patients, who are willing to pay cash. As I said, all of the MS drug companies have similar programs. They are designed as marketing tools to get the more affluent patients to try it, popularize it, ask their doctors for it.

 

[satoshikasumi]

This was because you were involved in a trial. Ampligen refuses to run any more trials. The FDA just asked them, and they refused. They are looking for cash-paying patients. And no insurance company would ever pay for drug that doesnt have FDA approval. I think that goes without saying.

I have no concern about the potential side effects, or lack of efficacy of Ampligen. People are free to make their own decisions. My only concern in all this is that indigent patients are being sucked in. And they will be left even more desperate and bereft than ever.

Ampligen is not available outside a trial; the FDA doesn't allow this. The placebo-controlled studies (AMP 516, etc) have not continued.

I was in the open label cost-recovery protocol, AMP 511, not the placebo controlled study. I don't know if AMP 511 is still enrolling new patients now, but it was in 2007-2008, when I took the drug. There are certainly still patients continuing to get the drug who had already been enrolled.

One of the other patients at my clinical trial site was indigent and she was actually getting the drug paid for by Hemispherx. Even they sometimes are willing to foot the bill.

 

[SOC]

Dr. Rey and Dr. Chia do not prescribe Valcyte,

Not true. Dr Rey does not routinely prescribe Valcyte, but that doesn't mean she and Dr Klimas don't prescribe it at all. They have prescribed it when they feel it is warranted. It is clear, however, that they prefer to try immune modulators and less toxic antivirals first.

Valcyte has it's place in ME/CFS treatment. My family has 2 remissions and 1 substantial improvement with Valcyte out of 3 PWME. None of us have had any serious complications because of it. I'd take it again in a flash if I thought I needed it, and so would the other members of my family.

That isn't to say that Valcyte is for everyone or that it is 100% safe. It can have potentially serious side effects, so should be taken under careful medical supervision. That doesn't make it universally dangerous. I think you are catastrophizing the risks of Valcyte.

As with every other medical treatment, it's a risk-benefit decision. The consequences of ME/CFS and long-term HHV-6 or CMV are serious so serious medications are warranted. In my mind, the risk of long-term neurological infections are much higher than the risk of Valcyte (properly monitored). Everyone should be left to make the best risk-benefit analysis for themselves without being accused of making "desperate" or irrational decisions.

As for cost, all 3 of my family members found the cost worth the results. Yes, Valcyte is very expensive. We all wish it was cheaper. That's true of all medical costs, to be honest. That doesn't mean someone shouldn't take it if they need it.

 

[satoshikasumi]

Dr. Rey and Dr. Chia do not prescribe Valcyte, because it not intended for low-level viral reactivations. It is a powerful and potentially dangerous medicine. It was intended for post-transplant acute CMV infections. And they don't think it is effective. However, I personally understand the desperation that patients feel, and I wish them success if they want to try this drug. My only concern over this has been the huge costs involved.

Genentech's patient assistance program will not help anybody on medicare. Pretty much everybody in this country is enrolled in medicare (or medicaid), if they don't have private insurance. So I think their claim they will help "people with no insurance" is a bit of a canard. That is a tiny sliver of the population. Or possibly aimed at overseas patients, who are willing to pay cash. As I said, all of the MS drug companies have similar programs. They are designed as marketing tools to get the more affluent patients to try it, popularize it, ask their doctors for it.

Are you sure? My understanding is that GATCF will enroll people who get two denials from Medicare or Medicaid. They will consider anyone who is indigent and unable to pay.

I do agree with you that there isn't good evidence establishing Valcyte is generally effective for ME/CFS. I do think there are serious, potentially irreversible side effects that need to be disclosed to patients. (i.e. infertility, birth defects)

However, I do think there is evidence that it is an effective treatment for herpesvirus infections. So, if you have an individual patient with ME/CFS who has gold-standard (PCR, viral culture, or 4-fold increase in titer between two time points) evidence of chronic HHV-6 or EBV infection.. I think the potential benefits of treating those particular patients should be taken seriously! Again, not as a treatment "for" ME/CFS, but as a treatment for the infection.

Almost 30% of ME/CFS patients may have reactivated herpesviruses at any one time.

Are drug companies in this for the money? of course!

 

[satoshikasumi]

Yes, Valcyte is an FDA approved medicine. That means it meets minimum safety and efficacy standards, and most of the risks are known.

I have not heard of terrible things happening to the ME/CFS patients who have used it under experienced medical supervision.

 

[satoshikasumi]

valcyte helped me a tiny tiny bit. my antibodies were never that high for EBV or HHV6 so i am not surprised i wasnt really a responder. i had no exposure to CMV.

whats interesting is, that valtrex made my RNase L go down from approx 2500 to 150. not sure what that means but normal is less than 75.

Daffodil, Rnase-L is an enzyme activated by interferon when your body is exposed to viruses. Rnase-L cleaves viral RNA, slowing down or stopping viruses from replicating.

Probably, your Rnase-L level going down indicates that you have fewer viruses to attack. However, I didn't know this test was still commercially available.

 

[Daffodil]

this happened years ago.

i believe the test may still be available in belgium RedLabs

 

[vli]

This was because you were involved in a trial. Ampligen refuses to run any more trials. The FDA just asked them, and they refused. They are looking for cash-paying patients. And no insurance company would ever pay for drug that doesnt have FDA approval. I think that goes without saying.

I have no concern about the potential side effects, or lack of efficacy of Ampligen. People are free to make their own decisions. My only concern in all this is that indigent patients are being sucked in. And they will be left even more desperate and bereft than ever.

i hv to say tho mishmash, if patients wish to try amp (and don't try to claim it has never helped anybody--look at mary schweitzer), it's their free choice. like me, even tho it didn't "cure" my cfs, i DO NOT, repeat do not, regret spending so much dough to try it. i had to, otherwise i'd never hv known and wldnt hv been able to move on. if i didn't try amp during 2012, i'd be in the position now in 2013 of still wanting to try it. it's as simple as that.

 

[vli]

So I think their claim they will help "people with no insurance" is a bit of a canard. That is a tiny sliver of the population. Or possibly aimed at overseas patients, who are willing to pay cash. As I said, all of the MS drug companies have similar programs. They are designed as marketing tools to get the more affluent patients to try it, popularize it, ask their doctors for it.

I am exactly such a patient. I came here from Asia, and am willing to pay cash as seen in my paying for my whole ampligen treatment. Like u said, the affluent patients are a tiny sliver of the pop., so why r u so concerned abt the co's trying to get them to try it? Haven't u just admitted that the ppl affected by this aren't as large a group as u conveyed them to be?

 

[vli]

I was in the open label cost-recovery protocol, AMP 511, not the placebo controlled study. I don't know if AMP 511 is still enrolling new patients now, but it was in 2007-2008, when I took the drug.

Amp 511 is enrolling ppl, i am one of them. sato do u mind telling me whether u or were there others who also managed to get insurance to cover part of their amp? no names required. just if u were the only one who managed to get this or were there others.