NICE (Uk) Draft Recommendation for Sofosbuvir: Key Points
Angel67 said
Sep 6, 2014
Sometimes it feels like drug companies don't want absolute cures for people, partial ones yes...so we keep paying! Maybe the virus is going to my brain & making me paranoid? Well it's five days since I found out & so many of my past ailments must have been Hep C. Now I wonder if stress causes a raise in the virus? As soon as I found out I started to feel ill, sore eyes, IBS, aches & pains....all these years i have complained of flu like symptoms and been labelled a hypochondriac. I was scared to present these to my doctor as I thought I'd be labelled, so I kept my mouth shut for twenty years! I pray my damage is minimal...it's a long wait for my hospital appointment!
Isiscat2011 said
Sep 5, 2014
Angel67 wrote:
We call this a postcode lottery & this actually happens with other drugs ,cancer drugs etc & it literally means you can lose out on treatment depending upon which side of street you live.
A postcode lottery.... an apt description. The US has a similar problem. Unless you are very sick from HCV (but not too sick because you can be excluded for that reason as well) access to tx can depend on the state in which you reside. This applies particularly to people who are receiving Medicaid but even private insurance coverage can differ depending on the location or who your employer happens to be. Another "lottery" aspect is the treatment provider. Some medical professionals will push for the tx and others will not. It ends up being a crap shoot for many patients.
I can understand rationing in situations where there is a scarce resource--a limited supply that cannot be readily replenished--but these tx drugs are relatively inexpensive to manufacture. Moreover, "healthier" patients require very little monitoring by medical professionals during tx. In reality, the reason for rationing is that the drugs are too expensive.
I can't help but wonder what would happen if someone found a cure for cancer (a non-infectious disease). Would anyone but the super rich be able to afford it? There can certainly be a financial disincentive for pharma to find actual cures where profit is the motivating force.
I have never bought into the idea that it would need to be a perfect world to resolve many of these issues. Simply a more humane world that valued people above money.
Angel67 said
Sep 5, 2014
Over here in the UK you can Solvaldi Scotland. In fact our government are allowing £500,000,000 to be spent on Solvaldi in Scotland, yet they only allowed £18.7 million for England's budget! Now overwhelmingly most Hep c suffers are in England & namely my city, London. There are something like 200,000 in England and about 40,000 in Scotland. We call this a postcode lottery & this actually happens with other drugs ,cancer drugs etc & it literally means you can lose out on treatment depending upon which side of street you live. I will move to Scotland if I have to! This is all part of a bribe to help the Scot's vote to stay in the UK, much more money is spent up north on education, free university ( we all pay down south) free prescriptions....it's so wrong.
Cinnamon Girl said
Sep 4, 2014
Yes I agree, Isiscat, and in an ideal world no treatment drugs would have to be rationed out on the basis of a `cost effective` assessment.
On the other hand the good news is that people in England who are in the most urgent need of interferon- free treatment are already receiving either Sovaldi + Daclatasvir or Sovaldi + Ledipasvir through compassionate use programmes. And actually we have two members here who are currently being treated under this scheme with one or other of these combos. So the situation isn`t quite as bad as first appears!
Here`s some info about that from an NHS (National Health Service) statement earlier this year...
Oh man, I was hoping to see at least the option of Interferon free combos for all gts on that list. It seems like substituting a second DAA for the Interferon would still be cost effective all things considered.
This is all due to the excessive costs of the drugs. I wonder how long it will take for this situation to improve. Not soon enough for some.
Cinnamon Girl said
Sep 3, 2014
Hi again Angel, and thanks for your comments.
Sovaldi is definitely going to be made available for the NHS in the UK but on a limited basis according to genotype and urgency of need, because the cost is so high, even with the discounted price. The link I posted gives you the key draft recommendations from NICE about which categories of patients should be prescribed treatment with Sovaldi, and we`re still waiting for the final recommendations to be announced. In the meantime people in the most need over here are already being treated with Sovaldi after the funding for them was made available earlier this year as a priority.
The second link you posted is dated from April this year, before the draft approval was announced.
And yes, you`re right, there are other drugs in the pipeline and no doubt they`ll eventually be available over here too.
We hope!
Angel67 said
Sep 3, 2014
This is good news, I still think there needs to be a final okay from our government & here is a link to the latest I could find on the situation..... hepatitiscnewdrugs.blogspot.co.uk/2014/08/uk-recommends-covering-sovaldi.html It seems that NICE struck a deal with Gilead & the UK will get 30% off the price that our American cousins will pay. I think some lobbying in the US could bring the price down in the states. It also seems that there are many new treatments for Hep C coming down the pike, fingers crossed & everyone will benefit? I hope that this link here won't be the final outcome?
Sometimes it feels like drug companies don't want absolute cures for people, partial ones yes...so we keep paying! Maybe the virus is going to my brain & making me paranoid? Well it's five days since I found out & so many of my past ailments must have been Hep C. Now I wonder if stress causes a raise in the virus? As soon as I found out I started to feel ill, sore eyes, IBS, aches & pains....all these years i have complained of flu like symptoms and been labelled a hypochondriac. I was scared to present these to my doctor as I thought I'd be labelled, so I kept my mouth shut for twenty years! I pray my damage is minimal...it's a long wait for my hospital appointment!
A postcode lottery.... an apt description. The US has a similar problem. Unless you are very sick from HCV (but not too sick because you can be excluded for that reason as well) access to tx can depend on the state in which you reside. This applies particularly to people who are receiving Medicaid but even private insurance coverage can differ depending on the location or who your employer happens to be. Another "lottery" aspect is the treatment provider. Some medical professionals will push for the tx and others will not. It ends up being a crap shoot for many patients.
I can understand rationing in situations where there is a scarce resource--a limited supply that cannot be readily replenished--but these tx drugs are relatively inexpensive to manufacture. Moreover, "healthier" patients require very little monitoring by medical professionals during tx. In reality, the reason for rationing is that the drugs are too expensive.
I can't help but wonder what would happen if someone found a cure for cancer (a non-infectious disease). Would anyone but the super rich be able to afford it? There can certainly be a financial disincentive for pharma to find actual cures where profit is the motivating force.
I have never bought into the idea that it would need to be a perfect world to resolve many of these issues. Simply a more humane world that valued people above money.
Over here in the UK you can Solvaldi Scotland. In fact our government are allowing £500,000,000 to be spent on Solvaldi in Scotland, yet they only allowed £18.7 million for England's budget! Now overwhelmingly most Hep c suffers are in England & namely my city, London. There are something like 200,000 in England and about 40,000 in Scotland. We call this a postcode lottery & this actually happens with other drugs ,cancer drugs etc & it literally means you can lose out on treatment depending upon which side of street you live. I will move to Scotland if I have to! This is all part of a bribe to help the Scot's vote to stay in the UK, much more money is spent up north on education, free university ( we all pay down south) free prescriptions....it's so wrong.
Yes I agree, Isiscat, and in an ideal world no treatment drugs would have to be rationed out on the basis of a `cost effective` assessment.
On the other hand the good news is that people in England who are in the most urgent need of interferon- free treatment are already receiving either Sovaldi + Daclatasvir or Sovaldi + Ledipasvir through compassionate use programmes. And actually we have two members here who are currently being treated under this scheme with one or other of these combos. So the situation isn`t quite as bad as first appears!
Here`s some info about that from an NHS (National Health Service) statement earlier this year...
http://www.england.nhs.uk/wp-content/uploads/2014/04/sofosbuvir-pol-stat.pdf
Oh man, I was hoping to see at least the option of Interferon free combos for all gts on that list. It seems like substituting a second DAA for the Interferon would still be cost effective all things considered.
This is all due to the excessive costs of the drugs. I wonder how long it will take for this situation to improve. Not soon enough for some.
Hi again Angel, and thanks for your comments.
Sovaldi is definitely going to be made available for the NHS in the UK but on a limited basis according to genotype and urgency of need, because the cost is so high, even with the discounted price. The link I posted gives you the key draft recommendations from NICE about which categories of patients should be prescribed treatment with Sovaldi, and we`re still waiting for the final recommendations to be announced. In the meantime people in the most need over here are already being treated with Sovaldi after the funding for them was made available earlier this year as a priority.
The second link you posted is dated from April this year, before the draft approval was announced.
And yes, you`re right, there are other drugs in the pipeline and no doubt they`ll eventually be available over here too.
We hope!
This is good news, I still think there needs to be a final okay from our government & here is a link to the latest I could find on the situation.....
hepatitiscnewdrugs.blogspot.co.uk/2014/08/uk-recommends-covering-sovaldi.html
It seems that NICE struck a deal with Gilead & the UK will get 30% off the price that our American cousins will pay. I think some lobbying in the US could bring the price down in the states. It also seems that there are many new treatments for Hep C coming down the pike, fingers crossed & everyone will benefit? I hope that this link here won't be the final outcome?
http://www.pharmaphorum.com/news/sovaldi-cost-effective-but-not-affordable-for-nhs
-- Edited by Angel67 on Wednesday 3rd of September 2014 02:54:55 PM
Key Points: NICE draft recommendation for Sofosbuvir
PLEASE NOTE: This is draft guidance; NICE has not yet issued final guidance to the NHS
What is recommended for treatment on the NHS?
Sofosbuvir, interferon and ribavirin for adults with:
Genotype 1
Genotype 3 with cirrhosis
Genotype 3 who have previously tried treatment
Sofosbuvir and ribavirin (without interferon)
Genotype 2 who have not tried treatment before and are interferon intolerant or ineligible
Genotype 2 who have tried treatment before
Genotype 3 with cirrhosis
What is NOT recommended for treatment on the NHS?
Sofosbuvir, interferon and ribavirin for adults with:
Genotype 4
Genotype 5
Genotype 6
Sofosbuvir and ribavirin (without interferon) for adults with:
Genotype 1
Genotype 4
Genotype 5
Genotype 6
Sofosbuvir will also not be available on the NHS to people with:
Genotype 2 who have not tried treatment before and are able to take interferon
Genotype 3 who have not tried treatment before and do not have cirrhosis
http://www.hepctrust.org.uk/News_Resources/news/2014/July/NICE+draft+recommendation+for+Sofosbuvir+key+points
-- Edited by Cinnamon Girl on Wednesday 3rd of September 2014 02:10:13 PM