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Me too.
If I remember right, before discounts to various insurers, in the US Harvoni is $94,500 … while Sovaldi alone is $84,000 and Daklinza is $60,000 for a total of $144,000.
Assuming a similar price ratio in England, and assuming the government is picking up the tab, they’ll advise for Harvoni. And I also wonder how old this recommendation is …. interferon is still on there, and it shouldn’t be!
I agree with Paul …. this is Gilead propaganda and fits well with their general behavior pattern. Notice the Gilead spokesperson is implying rather than directly stating a risk difference between led and dac.
I’ve made two comments on the page …. when I left a link for this site it went to moderation and then disappeared … so I rewrote it with “dot” in the address. More of us should do the same.
”James-Freeman-facebook” wrote:- How Hep C has impacted on you and your family
- The mental torment of knowing cure exists but is unavailable
- Your views on the Buyers Club and parallel imports being facilitated by others
- Your views about Big Pharma pricing
- Your suggestions about what Government can do to help (without breaking the budget)
Well, I’m not an Australian citizen, but I just spent 24 days there and I’ve been following this forum from maybe day one or two, as well as Greg’s blog from before he headed out on his trip to India. So while I’m not going to address the first four suggested topics for now, I will address the fifth.
_______________________________________________________________There is no doubt that every politician as well as every relevant agency or bureaucratic body would actually love to help everyone with this disease. There is also no doubt that treating everyone in need at Gilead’s prices would put serious pressure on the health care budget.
But there is one thing that can be done NOW …. IMMEDIATELY!
It will cost the government next to nothing, and has the potential to save the taxpayers millions upon millions of dollars. It will require no negotiation with Gilead or other patent holders, and require no new legislation. And it will have the added bonus of putting pressure on Gilead and the others to come to the table with a better offer.
The resistance of doctors to the idea of prescribing generics and the reluctance of clinics to overseeing the treatment should be addressed clearly and unequivocally.
The government and all relevant agencies should draft an Official Policy Statement, publish it, send copies of it to all relevant health care providers and their clinics, and get the word out through the media with all necessary repetition to be sure people get the message.
The Official Policy Statement should make these three points, clearly and unequivocally:
1) All doctors and clinics are free to prescribe generics to their patients and to oversee the treatment with generics with no fear of reprisal, censure or other negative repercussions.
2) All patients are free to source and import up to 90 days of generic medications for their own use with no fear of reprisal, censure, or other negative repercussions.
3) Individuals, doctors, clinics, pharmacies, philanthropic entities, etc. are free to assist patients in the sourcing, importing, testing, compounding and shipment of these generics, provided they are doing so with no financial gain in the purchasing transaction, and may do so with no fear of reprisal, censure or other negative repercussions.
I’ve taken my 9th set of Sof/Dac , I picked up the Sof personally from Kingswood a week ago yesterday. It’s a very simple 1.25 hour train ride from Sydney Central Station. Walk off the train, cross the road, walk to the other end of the block and you’re there!
I am in the process of gradually moving it earlier each day to set me up for the drastic time change getting home. Took this last dose at 2:00am and will take the next one at midnight tonight. I fly from Bangkok to Seattle on Thursday.
BTW, I’ve looked online at the customs declarations form and there are zero questions about prescription drugs on it. Only relevant question is about the value of goods imported.
Can’t clearly see any side effects at all so far. I’ve tired easily these last 4-5 months and it’s been quite pronounced on my trip … meaning I pretty much only leave my hotel to find food and liquids. With the heat in Bangkok that pattern is still intact, but I do seem to be getting a bit of my energy back, but it’s still early. At least it appears my urine is already changing color! YAY!
It has to do with patent negotiations by the World Trade Organization and the Bangladesh status in the category of Least Developed Country.
LDCs are currently allowed to produce drugs off patent, but they are not allowed to distribute those drugs to any countries not also on the LDC list. The agreements come up for periodic review and I assume manufacturers don’t want to do anything that might mess up their special exemption from international patent laws. If I remember right, they were to end in 2016 but it got extended … don’t remember the details.
Various distributers, on the other hand, don’t have the huge investments or long term goals the manufacturers do, so they might be willing to export anyway. But that’s exactly the point where the buyer has to begin questioning supply chain integrity.
If you’re curious to know more, google Bangladesh drug patent or maybe add Least Developed Country, and/or WTO to the searches.
BTW, glad to see you’re finally swallowing your pill stash.
Edit: As for the currency/exchange issues and payment difficulty, it’s a control-freak problem you see in many poor countries, and part of the reason they remain poor. For example, there is no good excuse why the Philippines lags so far behind its SE Asia neighbors in economic development except for their trade laws and foreign investment laws …. and the fact that 23 families hold major political control and exclusive franchise rights to entire industries.
In fact the words “Patent” and “Franchise” originated when the English Crown granted these exclusive rights …. in return for a cut of the action of course. Don’t ever believe the BS that these legal peculiarities started out from ideological or philosophical principles.
NO!
Branding is one thing, but any hint of profit would run this service afoul of the law. In no way, shape or form should we be suggesting that this site should make profit.
Standard is Sof 400mg x 84 and Dac 60mg x 84
I’m wondering why a doctor would be required to state the brand name on the script?
Why can’t he/she simply write the generic name from the start without specifying brand?Then, while the insurance company is taking their time denying the request, he could provide the patient with a letter stating what he has decided …. “I am prescribing …” with the same generic names, doses, lengths of time, and pretend he has no knowledge of what the patient might do with such a letter. It should be written in present tense, “I am prescribing …” not past or future tense (“I have prescribed …” or “I will prescribe…”
But such a letter would likely serve perfectly well for a foreign meds provider and also as the shipping document’s form of prescription.
If anyone later tries to give the doctor any flack, he just pleads ignorance of the patient’s actions.I don’t know all the technicalities of prescription form.
I do know that the old way of scribbling on a script pad and handing you the paper seems to be getting uncommon. Most offices send the script electronically to your choice of pharmacies now. However, my doctor in Thailand wrote it in letter form, on hospital letterhead, and provided to me electronically. Therefore I can simply print it out as needed, or forward electronically.
If you’re ordering from overseas I see no need to get separate scripts or two scripts for 12 weeks each. Third world sources aren’t likely to be that particular, and if you’re ordering two shipments of a drug from the same source, just explain why and they’ll understand. Just tell them what you want done and when to fill the order.
The more important part is the inclusion of shipping documents:
You want a clear explanation of what is in the package, a copy of your prescription, and if you’re getting APIs you’ll want MSDS sheets and a paper from the manufacturer again explaining what the powder is. These should also be available to the shipper in electronic form so that the shipper and customs can inspect your paperwork without opening the package.
Greg Jefferys explains it more fully on his blog.
http://hepatitisctreatment.homestead.com/index.html#
Both Greg and Mesochem have been doing this and should be able to do it without your needing to explain anything.Hi 2b,
A few travel observations …..
* The US is killing on the exchange rate right now. Good time to travel with lower costs.
* The low oil prices have airfares down as well. I’ve been using google/flights to research before buying. Play with it a bit to figure out how to find the cheapest flights.
https://www.google.com/flights/
(There’s also Skyscanner, but I’ve never used it)
* SE Asia has the world’s best bunch of discount airlines. However they’re not necessarily hooked up to do transfers from others … meaning a flight search NY-Hobart won’t turn them up. So, you might want to try finding the best flight to Hong Kong or Singapore and then search a separate flight from there to your destination in Oz. Be aware that some of the discounters charge extra for things you are accustomed to being included free … i.e. checked bag, meals, seat selection. And Tiger Air’s seats in economy only give you 29 inches leg room.
_____________________
But if you can get the script, I don’t think Greg Jeffery’s shipments have ever failed to arrive … eventually. Last I heard, the most extreme case he was aware of was someone in the US shipping directly from India to the US who had customs stop the package. That person was required to provide various documentation and eventually got the meds after three weeks delay.There are two separate issues …. getting the prescription and sourcing the meds. Some people have imported the meds into the US without a prescription, but I wasn’t ready to try that.
I’ve said elsewhere that the clearest, simplest method is to come to Australia, and I still believe that, but it’s certainly not your only option.
As for the length of time necessary, if your trip was properly planned it shouldn’t take that much time anywhere you go. If you have the prescription in hand, good paperwork on the source and nature of the meds, and you’ve already started treatment outside the country, I can’t imagine customs not allowing you to bring back your meds.The Australian part of my trip was not planned. I intended originally to either get my meds in Thailand or travel to the source. Then questions arose about Mesochem selling to individuals followed by a lack of response from the Bangladeshi sources. When my Thai doctor wrote my script for Led rather than Dac I started considering coming here to get a different script. Also, I was concerned about bringing powders (APIs) back through customs and the compounding here means the meds are packaged in a standard pharmacy bottle with a proper label. But not warning Dr. Freeman I was coming means that the arrival of my meds has taken time. With proper communication this should not be so time consuming.
But again, there are other options. As for getting the prescription in the US, it almost comes down to doctor shopping. My insurance company would never have paid for that and the nature of my job didn’t give me the time. If you want to try that, I’d suggest either an alternative medicine clinic or looking for a doctor that is presently prescribing medical marijuana as both are willing to think outside the box and defy traditional protocol.
I decided to just go where getting tests and a prescription would be easy and inexpensive. There are many such places. Depending on where you are, various places would be more workable. From the west coast Thailand is currently rather reasonable. From the mid-west or east coast you might prefer going to the medical tourism hospitals in Medellin, Colombia. Just look through this site to see many options. Look for gastroenterologists.
https://www.health-tourism.com/
Once you have the prescription from a US doctor you can either ship directly or travel to get the meds. Either way people are currently successfully getting their meds through customs.
If you do have to travel to get the prescription, I would suggest sourcing the drugs there as well and starting treatment before your return. It just makes it less likely they’d try to challenge the meds.
I think the quickest, easiest change that could help is the link from “Forum” on the home page.
Currently it takes us to “Recent Posts” and inexperienced forum users likely don’t recognize the categories available.
If that link instead took us to the “Index” page new posts and especially new topics might more reliably end up where they belong.Also, I suspect that the forum has the option of pinning specific threads to the top of the index, below which thread topics arrange themselves by recent activity.
Hi LondonGirl,
Chester is managing fairly well. Her main problem is the inability to drive and her discomfort with the idea of a right hand driver (me) driving for her with no international driver’s license (no insurance.) (Hitting a wallaby on my first trip probably didn’t help … ) This should be better when they change her cast in a few days and she gets her fingers out of the cast. Otherwise there’s not much slowing her down.Emilio, Thanks for the kind words and generous offer, and I’d enjoy seeing that part of the country, but at this point I think I need to stay put until I get my meds in my hands. And for a few more days Chester might need occasional help with her sheep and other various chores. (She was going out to the sheep when she slipped and broke her arm.)
As for Tassie and Hobart …. I understand exactly what you mean. It’s a nice place with great scenery and the people are great and I’m sure Americans would enjoy visiting here, but there is definitely a time warp in some ways. It’s part of the appeal for most visitors, I’m sure.
Quick update ….. been in Tasmania for ten days.
Came unannounced and with no warning to Dr. Freeman and staff.
WILL HAVE MY MEDS SOMETIME NEXT WEEK! Likely Wednesday but Friday at latest.Dr. Freeman and his staff have been beyond generous with their help.
People in the USA might well consider a trip here for the simplest, clearest method to acquire treatment.I’ve met Greg and he’s just as genuine and sincere and helpful in person as he seems online.
Chester says “Hi” … and is the only known person on the planet whose side effect to Rib has been a broken arm …
(“Side effect” is humour … broken arm is real.)My take on this is that it’s a result of Gilead machinations.
Gilead has been unwilling to participate with Bristol-Myers Squibb to get approval of the Sof/Dac combo in the US except on treating G3 … not in their financial interest, as Ledipasvir is a Gilead product. Gilead has been spending heavily on Harvoni ads, and most of the press and awareness in the US is all about Gilead’s products. Many doctors in other countries are following the US standard recommendations, for example my hepatologist in Thailand.
Therefore the Chinese entities such as Mesochem likely perceive a greater demand and price inelasticity with the ledipasvir … and they simply price accordingly.
When the Indian companies get approved with their Harvoni generic equivalents expect a price crash on the Led from China.
But I still think it’s crazy to wait.
And I personally think the Dac is better and have chosen accordingly …. BUT I’M NOT A DOCTOR.
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