Obtaining the ARVs now/soon?

[August59]

There was an application for Patient Assistance on the RXHope.com site

 

[julius]

I haven't done a lot of looking at prices, but I just came across this article,
http://www.avert.org/generic.htm

Basically, it is saying that ARVs in first world countries run around $10 000-15 000 a year. But the same drugs bought in 'developing' countries are as little as $88 per year(!!!).

I lived in Thailand for many years, and I guess if I have to go on them I will move back there.

But, can anyone think of any ways we could get access to those cheap ones from over here? How much are people paying who are getting them over the internet?

 

[SickOfSickness]

Well nobody is getting Isentress online... are they? The other two are only $100 and $150 per month, not bad, and probably cheaper from some sources.

 

[grant107]

I would really appreciate it if some of the people would post here and let us know how they are doing. They can remain anonymous. It would help those of us considering it.

 

[pete]

Further investigation and thoughts.

I since found Isentress available . It's at No perscriptionneeded.com. 15 dollars a tablet. There are, rightly, a lot of warnings about ARVs , but not so much about the risk of keeping XMRV as a guest. I take it that RVs are not very friendly to us....there is talk of cancers and recently , at the conference, heart problems . I still can't quite believe there are only 2? on the 'triple cocktail' regime. Pete'

 

[jace]

On the face of it this is a great idea. However a lot of information is missing from the science that will be clear in the near future. At least that's what I believe. So it may be premature to start on an independent patient trial atm.

Medical supervision, regular testing, ARV protocols will all be easier a short way down the line. The obvious medics to approach, once MuLV theory is more generally accepted, are HIV docs. They would likely know all about sources of funding too.

I don't want to dampen anyone's fire, but I have to council patience and caution, rest and good nutrition, plus advocacy where you can. If, a couple of months on (October may be an important month for us) we are still in the same position, then I'm in with a small financial contribution at least.

But that's just what I think.

 

[taniaaust1]

I love the idea of people putting in money and some are picked as trial participants to share here. If this XMRV stuff dont sort out.. maybe we as a group should certainly do something like that to MAKE SURE CFS/ME studies are being done with the same subgroups etc.. and on topics which are relevant. The age of internet has created new ways which things can be done and could actually change science itself... so why not respected public patient communities doing their own very open to all studies?.

We could all stand up for ourselves and put in small amounts.. and get the studies we want done ourselves, one study at a time.

I dont know how to donate a small amount like that from Australia?

If we could fund just 3-5 people to try ALL the 3 AIDS drugs together to report (people we know and trust to tell us however it is), I think that would be great... so few are doing that right now that I dont think we can fully judge yet how that's really working for us. I know I myself would love to hear about a few others reporting on this. I do think it would be best holding off more doing this till more is known.

Those who partake in such a trial.. i think it is necessarily thou that they have a XMRV or MLV diagnoses.. and not be entering a study unaware of their status.. so if we are funding such a study.. we need those already diagnosed. SickofSickness.. if you get yourself tested and are postive.. If there is a way I can put in $10 without paying some riduculous transfer fee from Aust.. I'll put in. You'd of cause also need a willing doctor. What country are you in?

I wish a group would start up a study fund for things like this... as a group.. I think we could learn a lot if we were doing our own studies on various aspects of CFS/ME.

...........

I want to say to everyone.... be extremely careful if putting a doctors name up publically and saying doctor is giving experiemental AIDS drugs out. I have strong concern that that info could be used against the doctor and we dont want any more of our doctors prosicuted by the medical assoc. for trying to help us. Doctors could loose their licence for giving out these drugs to us as this is so highly frowned upon by the medical associations. We need to protect good doctors (by good, i mean those willing to do basicaly anything to try to help us).

 

[SickOfSickness]

Well I looked into it more and because of my private insurance, I may be able to get Isentress & the others cheaply. My situation is different because of private insurance. It might be really cheap but I am unsure if they'll fight it being off-label usage. If they didn't fight it, all three drugs would cost me something like $90/mo in total?! In the past they allowed my off-label prescriptions but none were so controversial and expensive.

One reason to move faster... I may not be able to keep this insurance if I can't start getting "cured" faster and because they have a discount program which they might not renew when it's over. I need to try to keep it because down the road it could save so much money, but being unable to work is causing huge difficulties.

I'm not near him, but I can travel to that Dr mentioned above for only about $140-$200 for gas and lodging. Not bad considering! Possibly find a closer doc. And insurance would cover the office visit except for copay and hopefully cover any blood tests completely. I may have to pay copays on blood tests.

@tania - You probably mean me... SickofSickness. There's a different member here under SickofCFS who has been here longer than me.

 

[taniaaust1]

I'm not near him, but I can travel to that Dr mentioned above for only about $140-$200 for gas and lodging. Not bad considering! Possibly find a closer doc. And insurance would cover the office visit except for copay and hopefully cover any blood tests completely. I may have to pay copays on blood tests.

@tania - You probably mean me... SickofSickness. There's a different member here under SickofCFS who has been here longer than me.

ahh yes.. i was confusing you both .. thanks for letting me know.

 

[SickOfSickness]

If insurance denies it because of being off-label, I believe I would still pay only $250-$700/mo for all the meds combined and probably on the low/mid range not the higher amount. Also as I said, I think I could take half doses due to body weight and because of the way I metabolize lots of medications. (I'm "sensitive".) I would want to know if docs are against half doses of ARVs. It's probably okay if it gets your viral load down?

All three drugs are Formulary / Tier 2 with my ins. I don't know what that means. I don't think I pay any differently for different tiers.

 

[calzy]

Just received my test kit from VIP..Dr Klimas says she is starting a trial, dont know what meds yet. But she sounded pretty confident on knowing what they are. I go back in Dec and if XMRV+, I will consider being on her trial, she said by the time the insurance companies catch on, I could have my AVR's paid for. Just sharing. anything could happen from now until Dec. Plus she has no testing to offer at this time, only VIP.

 

[SickOfSickness]

That would be great if you get in her trial. Yes do keep us posted. So it says she's in Miami. (A little far for me.)

 

[SickOfSickness]

New post today or yesterday by Dr D-J has some info about ARVs. http://treatingxmrv.blogspot.com/2010/09/more-random-thoughts.html

 

[pete]

I also would be open to contributing , I think the problem might be the willing doctor. They will not stick their necks out for us. Why should they ? And at the moment they can't even agree on how to test us , never mind doing it , how to interpret results , etc. And no money yet except what they scrounge from other budgets ! Approved treatment is years away. The WPI is our best hope.

 

[jace]

Paypal is the best way to collect donations from around the world.

 

[pete]

As Isentress is so expensive what is the view about half or smaller doses of it with the other two?

 

[HowToEscape?]

I believe Dr Deckoff Jones said she only knew one other person on them? In a recent blog post she encouraged people again to write if they were on them. Someone commented that they were on them, but these people aren't sharing much?

In fact I think as a community we should be willing to fund individuals to go try it as long as they report back? Tens of thousands of us would love to hear from just one or two or three more ARV trial patients, so why not take matters into our own hands more directly. Say ten thousand of us pay $4 each, and that's enough to get 15 or 20 volunteers onto the same ARV combo that Dr D-J is on for the first 4 months, then if it's going well in 4 months, the volunteers could start working and paying for their treatment, or we could be grateful and some of us donate another $2 or $4.

Especially when you consider there are so many volunteers, that is a lot of info. Very valuable info which can help convince more docs to start prescribing, and make it more accessible to people in more states. If we had just 10 more good stories like Dr D-J then you would have thousands of patients who would volunteer next time, if you wanted more guinea pigs.

I am also a little worried that most volunteers at the start are going to be the sickest people and the oldest people. So the results could be skewed and I think we need more younger ones who are not bedridden. And even if they prove later that XMRV is not causative, who cares if it can make your functioning go way up, so you can work full time in 10 months after beginning.

It's a good intention, but a few people trying ARVs will produce no data useful for others. That doesn't tell us if the ARVs, the cyclical nature of CFID, random chance or something else caused the results. Maybe with a certain minimum number of people, documenting their condition before and after and comparing to a control group of people with a similar level of illness not using ARVs would give us something. I'm not a scientist so I don't personally know what constitutes a useful test, but count me as skeptical that three or four individual stories would do it. Maybe if there is a certain critical number and before/during/after details of how people's health changed it could acelerate the time to start formal trials.