Aa
Medical tourism
Hi All,
I've just been for my annual hepC checkup. I learned that although Sovaldi is now licensed in the UK where I live, my wonderful doc only has the funding to treat the first 100 patients this year. They will be those nearest to liver transplant. I assume that is because they will be the best value for money considering their likely future medical costs if left untreated.
I am currently 64 and so far my liver is holding up, though who knows for how long. So I have to wonder how long before my name gets to the top of the treatment list? At 100 people a year it is conceivable that I would be 84, or dead, or mortally compromised by something else, making tx no longer an option for me.
This is not rocket science. The drugs companies must realise that all the unmet need that they are currently salivating over is not going to translate into billions of dollars at the prices they are charging. The need is going to stay unmet. Each country is going to allocate what they want to spend for drugs, and however many people that reaches, well that is it. Only a trickle will get the drugs, especially in countries that prefer to spend on weapons, nuff said.
Which brings me to Medical Tourism. I cite the following articles which pertain to India, however many countries have facilities for the international community to access medical treatment in a country other than their own.
http://in.reuters.com/article/2014/04/08/health-hepatitis-gilead-idINDEEA370B920140408
http://in.reuters.com/article/2014/04/10/natco-pharma-sovaldi-idINDEEA3909920140410
I don't know about the US system but for people in my position it seems to me that they may have an alternative by seeking treatment in another country and paying privately for it. That all depends on the cost in that country. It is early days yet but where else is the mega, gigantic, humongous, need going to go? I gather from my doc that he hopes that prices will come down once there are several non-ifn combos licensed and in competition. He also hopes that the government will increase his funding. For my part I hope that both these things happen. Otherwise I could be applying for my Indian visa this time next year.
All the best
dointime
I've just been for my annual hepC checkup. I learned that although Sovaldi is now licensed in the UK where I live, my wonderful doc only has the funding to treat the first 100 patients this year. They will be those nearest to liver transplant. I assume that is because they will be the best value for money considering their likely future medical costs if left untreated.
I am currently 64 and so far my liver is holding up, though who knows for how long. So I have to wonder how long before my name gets to the top of the treatment list? At 100 people a year it is conceivable that I would be 84, or dead, or mortally compromised by something else, making tx no longer an option for me.
This is not rocket science. The drugs companies must realise that all the unmet need that they are currently salivating over is not going to translate into billions of dollars at the prices they are charging. The need is going to stay unmet. Each country is going to allocate what they want to spend for drugs, and however many people that reaches, well that is it. Only a trickle will get the drugs, especially in countries that prefer to spend on weapons, nuff said.
Which brings me to Medical Tourism. I cite the following articles which pertain to India, however many countries have facilities for the international community to access medical treatment in a country other than their own.
http://in.reuters.com/article/2014/04/08/health-hepatitis-gilead-idINDEEA370B920140408
http://in.reuters.com/article/2014/04/10/natco-pharma-sovaldi-idINDEEA3909920140410
I don't know about the US system but for people in my position it seems to me that they may have an alternative by seeking treatment in another country and paying privately for it. That all depends on the cost in that country. It is early days yet but where else is the mega, gigantic, humongous, need going to go? I gather from my doc that he hopes that prices will come down once there are several non-ifn combos licensed and in competition. He also hopes that the government will increase his funding. For my part I hope that both these things happen. Otherwise I could be applying for my Indian visa this time next year.
All the best
dointime
https://www.nice.org.uk/news/press-and-media/NICE-consults-on-draft-guidance-on-the-drug-sofosbuvir-for-treating-hepatitis-C
NICE made the above statement on Friday. Hope the link works. :)
NICE made the above statement on Friday. Hope the link works. :)
Hi and thanks for posting the letter. Yup it's true. My doc can't get the funds to pay for the new drugs that I need. Only a handful of people will get them.
You can be thankful for your luck that you have already treated and cleared.
dointime
You can be thankful for your luck that you have already treated and cleared.
dointime
I just came across that letter purely by accident.
I didn't know there was an expiration date.
The sign on is here
HCV Treatment Access Letter Sign-On
https://docs.google.com/a/nettally.com/forms/d/1e4shoCXCjPJgjoGU7a1B5c-EQdnIBA8k_KWGECftxj4/viewform
Looks like you have to be logged in to Google to view it.
________________
The (or a) letter is here
https://groups.yahoo.com/neo/groups/hopeforhepc/conversations/topics/11447
It says
Deadline to be listed in first publicly released version of the statement: 5 pm Eastern, Friday, August 15, 2014. Signatures will be accepted after this deadline and the statement will be updated on a weekly basis with new signatures.
Rather than cut and paste the entire lengthy thing I will post what caught my eye:
We are therefore united in our call to all stakeholders, including public and private payers, the pharmaceutical industry, and government to work together to eliminate the barriers that have caused rationing of hepatitis C treatment:
1. Hepatitis C pharmaceutical companies must commit to affordable pricing, broad accessibility, and transparent, good-faith negotiations with payers;
2. Stakeholders must engage members of the patient, provider, and advocacy community in a process to address access barriers and to minimize consumer cost-sharing obligations;
3. Payers must ensure that individuals who inject drugs, the group most at risk for new infections, are not systemically excluded from treatment; and
4. We must send a strong message to all people with hepatitis C: they deserve to be cured and that everything is being done to end the current rationing of treatment.
In addition, no utilization management or prior authorization requirements must be put in place by public or private payers except when it can be demonstrated that such restrictions are developed through a transparent process that:
1. Is in accordance with clinical factors and not just cost effectiveness;
2. Involves consultation with recognized hepatitis C medical experts;
3. Includes meaningful input from the hepatitis C patient and advocate community; and
4. Requires each payer to maintain an exceptions process for any individual to appeal a denial of access based on their specific individual circumstances
__________________________________
I am not sure what to think. Especially about the "rationing of treatment." I must naive or clueless. I admit I have not kept up with things since I treated and cleared however.
I didn't know there was an expiration date.
The sign on is here
HCV Treatment Access Letter Sign-On
https://docs.google.com/a/nettally.com/forms/d/1e4shoCXCjPJgjoGU7a1B5c-EQdnIBA8k_KWGECftxj4/viewform
Looks like you have to be logged in to Google to view it.
________________
The (or a) letter is here
https://groups.yahoo.com/neo/groups/hopeforhepc/conversations/topics/11447
It says
Deadline to be listed in first publicly released version of the statement: 5 pm Eastern, Friday, August 15, 2014. Signatures will be accepted after this deadline and the statement will be updated on a weekly basis with new signatures.
Rather than cut and paste the entire lengthy thing I will post what caught my eye:
We are therefore united in our call to all stakeholders, including public and private payers, the pharmaceutical industry, and government to work together to eliminate the barriers that have caused rationing of hepatitis C treatment:
1. Hepatitis C pharmaceutical companies must commit to affordable pricing, broad accessibility, and transparent, good-faith negotiations with payers;
2. Stakeholders must engage members of the patient, provider, and advocacy community in a process to address access barriers and to minimize consumer cost-sharing obligations;
3. Payers must ensure that individuals who inject drugs, the group most at risk for new infections, are not systemically excluded from treatment; and
4. We must send a strong message to all people with hepatitis C: they deserve to be cured and that everything is being done to end the current rationing of treatment.
In addition, no utilization management or prior authorization requirements must be put in place by public or private payers except when it can be demonstrated that such restrictions are developed through a transparent process that:
1. Is in accordance with clinical factors and not just cost effectiveness;
2. Involves consultation with recognized hepatitis C medical experts;
3. Includes meaningful input from the hepatitis C patient and advocate community; and
4. Requires each payer to maintain an exceptions process for any individual to appeal a denial of access based on their specific individual circumstances
__________________________________
I am not sure what to think. Especially about the "rationing of treatment." I must naive or clueless. I admit I have not kept up with things since I treated and cleared however.
Hi there. I know what you mean about taking a break from the forums and have to go on with the idea of 'living your life'. I was so obsessed with doing treatment after treatment after treatment, and being on the boards year after year that I was just getting to the point that I was so depressed and making my life all about treatments and Hep C. I had to take a few different long breaks away from the boards for my own sanity and peace of mind. I'm sincerely hoping that you get virus undetected on your India treatment and get your SVR. I had my first ever 'undetected', 4 wks ago. I was so shocked I almost thought I was dreaming. I am on Sovaldi and SOC. I am 8 wks done and have 4 wks left to go. I had my 8 wk viral load drawn today. I am hoping and praying that I stay undetected. Susan400
I am hoping for the same thing as well. If I can get the no interferon treatment in India next year, I will wait as well. We will just have to take a wait and see approach.
I have no idea. I will know more in January. A lot can happen between now and then. I will keep you posted once I speak to the Dr in the New Year. In the mean time, it's back to living. I refuse to sit at the computer and read Hep C forums as I did that for years. The good news is I'm alive, breathing and living the good life. I was diagnosed in 2001 with cirrhosis and nothing holds me back!
Your information on Indicure is enormously helpful. I have written to them myself now.
I'd love to join your trip to India as it sounds like a lot of fun and maybe we could get a better deal together. However the drugs I want will not be available when you go. I prefer to wait for a non-interferon combo, while I understand that you are aiming for the Sovaldi plus interferon and riba tx.
Good luck to you too. I will be very interested to how how it goes. Indicure looks like just what I was looking for.
dointime
I'd love to join your trip to India as it sounds like a lot of fun and maybe we could get a better deal together. However the drugs I want will not be available when you go. I prefer to wait for a non-interferon combo, while I understand that you are aiming for the Sovaldi plus interferon and riba tx.
Good luck to you too. I will be very interested to how how it goes. Indicure looks like just what I was looking for.
dointime
This sounds very interesting. I saw that a biopsy was included in the price. But why would they want to do a biopsy? Will they make a decision to treat or not to treat depending on the result of the biopsy?
Yes I will be staying for 2-3 weeks. I do believe that they will give me the drugs to take home and will be monitored here in Panama. I have treated so many times, I could probably do it myself. We don't need a script here in Panama for blood work or most drugs. I can see a specialist for $40 and have an appointment within 24-48 hours. The only thing I can't get here is a PCR test. Well I could, but it costs about a $1000 and the blood will have to be sent to the USA.
I happen to have most of my medical records which I sent to India and within days they got back to me and arranged for me to call him. I went through a company called Indicure. I was referred by a friend who went there for a heart valve operation. I will send you the ladies email addy and you can contact her direct.
Maybe we could go at the same time and get a better deal. I will be traveling with two other ladies. We hope to do some shopping, sight seeing, eating and yoga.
Good Luck
Joanne
I happen to have most of my medical records which I sent to India and within days they got back to me and arranged for me to call him. I went through a company called Indicure. I was referred by a friend who went there for a heart valve operation. I will send you the ladies email addy and you can contact her direct.
Maybe we could go at the same time and get a better deal. I will be traveling with two other ladies. We hope to do some shopping, sight seeing, eating and yoga.
Good Luck
Joanne
I was so pleased to get your post that I forgot to ask you -
- will you be staying in India for the duration of your treatment? Or is it possible to just make a short trip for the initial tests and receive your full course of drugs to go home with and manage your tx at home?
- do you need a letter of referral for your Indian doc? Or is he happy to proceed on your word and then on the results of his own tests?
Many thanks,
dointime
- will you be staying in India for the duration of your treatment? Or is it possible to just make a short trip for the initial tests and receive your full course of drugs to go home with and manage your tx at home?
- do you need a letter of referral for your Indian doc? Or is he happy to proceed on your word and then on the results of his own tests?
Many thanks,
dointime
This is exactly what I am looking for. Would you please pm me with the name of your Indian Gastro and the hospital, or even point me in the right direction?
By the way, I found out the same as you, Egypt is out of the question, too dangerous.
Many thanks for posting,
dointime
By the way, I found out the same as you, Egypt is out of the question, too dangerous.
Many thanks for posting,
dointime
I have not posted in years. Since my last treatment, I said to hell with it and packed up, sold my home in Canada and moved to Panama. I had to put my disease on hold and start living again. It was only this year that I logged on and found out there are some new drugs on the market. Going to the US is out of the question and going back to Canada and reestablishing my residency and health insurance will be too much hassle. Like you, I have looked into the Medical Tourism as well. Egypt is out of the question, it's very dangerous and being a female and a non muslim does not help.
I have looked into India and I have spoken with a Gastroenterologist with impeccable credentials. They are expecting the new drugs to be in India in January. I have made arrangements to speak with the Dr again in Jan and if the drugs are available, I will then book my trip.
I was quoted for a three week stay at the hospital, all tests, biopsy, medicine etc about $3500. They will take care of visas, accommodations etc. Hope this helps.
Joanne
I have looked into India and I have spoken with a Gastroenterologist with impeccable credentials. They are expecting the new drugs to be in India in January. I have made arrangements to speak with the Dr again in Jan and if the drugs are available, I will then book my trip.
I was quoted for a three week stay at the hospital, all tests, biopsy, medicine etc about $3500. They will take care of visas, accommodations etc. Hope this helps.
Joanne
Hey, it is Saturday now and I am less under the gun. : )
If I recall correctly, we met roughly 2006, maybe it was early 2007, but I seem to remember HH treating almost the 1st of January. That was a long time ago, and a lot of water under the bridge.
I was later to get into a vertex trial phase 3, about 1000 miles from my home, staying with a friend who I met on MH.
I ended up dropping from the trial before I dosed, due to minimal liver damage. (1/6 ishak) I thought I would wait for better treatments.
The Gilead trials finally came around and when I treated in April 2013, I was just about 6 weeks shy of exactly 5 years between trials.
The problem was, my blood tests (several fibrosure) and labs indicated I was possibly cirrhotic. I knew better than to trust them, and when I was admitted, and got my biopsy, I was actually only a stage 2 (instead of a stage 4)
Whew!!
It was posting in forums that got me into the two trials I have been accepted into. It has been forums that have aided me in perhaps keeping my damage less serious, or finding the best trials, or supplements, or people with whom to converse about the critical aspects of HCV.
They say, if you want to learn about something, try to teach it. Just the mere act of reading, conversing and *arguing* points over the years has been a useful tool in learning about the disease and treatment.
I've also met some very nice people along the way, rubbed elbows with some smart, inspirational, caring people, and trudged along with them. We may not always agree, but it is the diversity of opinion and experience that makes for learning.
In that regard forums have the potential to instruct and educate. In my opinion, the stuff that is fresh from trials, just in the news, or from lead hepatologists you can find in forums first. At the same time, some of the anecdotal stuff, quirks and sides and stuff that doctors may never learn about can also first be seen in forums.
One of the last things I learned from my grandfather:
He was an electrical engineer, born at the tail of the 1800's. He told me that engineering wasn't the most important thing he got out of college; the most important thing was that he learned *how* to learn. He acquired the means to teach himself, whatever the topic, subject, and the means of critical thought.
That has been one of the benefits of forums. I have been in a few of them over the decade plus that I have spent in HCV forums, sometimes posting, and sometimes merely lurking. It's been a great ride, I have met some great people and..... the terrible virus aside..... it has been a wonderful experience, in so many ways.
If I could go back and sidestep HCV, I don't know if I would, even if I could.
And your kind words have been some of the nicest of compliments I have heard. : )
I am recuperating, slowly and only somewhat. I have a little nuisance ringing in my ears, I have a little bit of neuropathy. It is diminishing, and while I don't think it will completely disappear, no one can tell of my shortcomings and I was able to run a 5 K race in my village 6 weeks after ending TX, and place 2nd in my age demographic. Only 30 in the 5K were older than me (I was 60 then), but I came in the top 25% of those finishing. Many people might wish that they could attain my level of damage; I'm better off than many "healthy" people my age.
xxxx
willy
If I recall correctly, we met roughly 2006, maybe it was early 2007, but I seem to remember HH treating almost the 1st of January. That was a long time ago, and a lot of water under the bridge.
I was later to get into a vertex trial phase 3, about 1000 miles from my home, staying with a friend who I met on MH.
I ended up dropping from the trial before I dosed, due to minimal liver damage. (1/6 ishak) I thought I would wait for better treatments.
The Gilead trials finally came around and when I treated in April 2013, I was just about 6 weeks shy of exactly 5 years between trials.
The problem was, my blood tests (several fibrosure) and labs indicated I was possibly cirrhotic. I knew better than to trust them, and when I was admitted, and got my biopsy, I was actually only a stage 2 (instead of a stage 4)
Whew!!
It was posting in forums that got me into the two trials I have been accepted into. It has been forums that have aided me in perhaps keeping my damage less serious, or finding the best trials, or supplements, or people with whom to converse about the critical aspects of HCV.
They say, if you want to learn about something, try to teach it. Just the mere act of reading, conversing and *arguing* points over the years has been a useful tool in learning about the disease and treatment.
I've also met some very nice people along the way, rubbed elbows with some smart, inspirational, caring people, and trudged along with them. We may not always agree, but it is the diversity of opinion and experience that makes for learning.
In that regard forums have the potential to instruct and educate. In my opinion, the stuff that is fresh from trials, just in the news, or from lead hepatologists you can find in forums first. At the same time, some of the anecdotal stuff, quirks and sides and stuff that doctors may never learn about can also first be seen in forums.
One of the last things I learned from my grandfather:
He was an electrical engineer, born at the tail of the 1800's. He told me that engineering wasn't the most important thing he got out of college; the most important thing was that he learned *how* to learn. He acquired the means to teach himself, whatever the topic, subject, and the means of critical thought.
That has been one of the benefits of forums. I have been in a few of them over the decade plus that I have spent in HCV forums, sometimes posting, and sometimes merely lurking. It's been a great ride, I have met some great people and..... the terrible virus aside..... it has been a wonderful experience, in so many ways.
If I could go back and sidestep HCV, I don't know if I would, even if I could.
And your kind words have been some of the nicest of compliments I have heard. : )
I am recuperating, slowly and only somewhat. I have a little nuisance ringing in my ears, I have a little bit of neuropathy. It is diminishing, and while I don't think it will completely disappear, no one can tell of my shortcomings and I was able to run a 5 K race in my village 6 weeks after ending TX, and place 2nd in my age demographic. Only 30 in the 5K were older than me (I was 60 then), but I came in the top 25% of those finishing. Many people might wish that they could attain my level of damage; I'm better off than many "healthy" people my age.
xxxx
willy
Years ago, when there were studies indicating that Thymosin would help in clearing Hep C, several members on the boards were using it, turned out to be not as great as was previously thought, but at the time, I was getting it legally shipped from Mexico, through a US pharmacy, all completely legal. With that being said, I've never been anywhere outside of the US.
Susan400
Susan400
I'm working so can't write much, but I hear India is a beautiful place to visit. : )
Gilead to price Sovaldi at $900 in India • 11:22 AM
Gilead Sciences (GILD -0.1%) plans to price Sovaldi (sofosbuvir) in India at the same level as Egypt ($900 for the full regimen). In addition, once the clinical trials conclude, the company has agreed to work with Indian generic manufacturers to produce the drug locally and possibly drive the price lower.
Indian officials say that 80% of their population lack insurance so even the bargain price of $900 (compared to the U.S.) will be beyond the means of millions of people.
U.S. patients have the honor of paying $84,000 for the full regimen.
=================
Gilead to price Sovaldi at $900 in India • 11:22 AM
Gilead Sciences (GILD -0.1%) plans to price Sovaldi (sofosbuvir) in India at the same level as Egypt ($900 for the full regimen). In addition, once the clinical trials conclude, the company has agreed to work with Indian generic manufacturers to produce the drug locally and possibly drive the price lower.
Indian officials say that 80% of their population lack insurance so even the bargain price of $900 (compared to the U.S.) will be beyond the means of millions of people.
U.S. patients have the honor of paying $84,000 for the full regimen.
=================
Hey Willy,
I was beginning to think that you had retired from the board, and I wouldn't blame you after all the stellar contributions you have made over the last many years. I hope your health is picking up better than ever now that you are SVR.
I agree with most of what you say, which doesn't mean that I like it. A few more years of waiting still sounds like an eternity to me if the drugs are already on the shelves. I am not against doing a trial, per se, it's just that having already done one for Vertex I have lost my naivety about trials.
Your "spa" idea sounds great and would be great for people who could afford it. I have personally been concentrating my mind on how to bring down the cost of tx. I figure that all I require is a source of the drugs at an affordable price AND a way of authenticating the drugs in a world full of fakes. Drugs by mail order is not out of the question for me if these two requirements can be met. I emphasize - nobody in their right minds should be messing around with this virus with anything except authentic, full efficacy drugs. Having said that, people in the US are all the time sourcing their drugs by mail order from pharmacies in Canada and Mexico and that usually works just fine. Alternatively, you go to the drugs manufacturers. India seems to currently be leading the way with this and already produces some drugs which would otherwise be financially out of reach for just about everybody. I am at the moment researching all these options.
Best to you
dointime
I was beginning to think that you had retired from the board, and I wouldn't blame you after all the stellar contributions you have made over the last many years. I hope your health is picking up better than ever now that you are SVR.
I agree with most of what you say, which doesn't mean that I like it. A few more years of waiting still sounds like an eternity to me if the drugs are already on the shelves. I am not against doing a trial, per se, it's just that having already done one for Vertex I have lost my naivety about trials.
Your "spa" idea sounds great and would be great for people who could afford it. I have personally been concentrating my mind on how to bring down the cost of tx. I figure that all I require is a source of the drugs at an affordable price AND a way of authenticating the drugs in a world full of fakes. Drugs by mail order is not out of the question for me if these two requirements can be met. I emphasize - nobody in their right minds should be messing around with this virus with anything except authentic, full efficacy drugs. Having said that, people in the US are all the time sourcing their drugs by mail order from pharmacies in Canada and Mexico and that usually works just fine. Alternatively, you go to the drugs manufacturers. India seems to currently be leading the way with this and already produces some drugs which would otherwise be financially out of reach for just about everybody. I am at the moment researching all these options.
Best to you
dointime
Hiya kiddo.
I believe that it may be tight for a while due to budgetary constrains.
I also agree, that they will treat the most damaged people first.
I think that they are basing to 100 patients on a certain amount in the budget, and if/when the prices come down, hypothetically, the # of people that they will be able to treat will increase.
I think that as soon as the new drugs come out and prices are established we may see a number change in how many get treated. Certainly, there will be more treatments and competitors in only a few years.
There will still be trials, but I know how you feel about that, but many of these are going to be 95-100 cure rates for non-cirrhotics.
Going forwards we may even see a more specific treatment dialed exactly into your genotype and genotype subspecies populations.
At minimum try to keep yourself well; fit, on a good diet, avoiding those things we know to be bad for us; alcohol, ciggies, sugar, weed, processed and fast food, etc.
I have always thought a "spa" commune type setting would be a great place to launch a TX ranch while catering to their needs while they get cured and relax. What better time and place than a medical tourism setting. I believe that we could raise the bar on a cure rate too.
Sign me up as an employee. : )
~W
I believe that it may be tight for a while due to budgetary constrains.
I also agree, that they will treat the most damaged people first.
I think that they are basing to 100 patients on a certain amount in the budget, and if/when the prices come down, hypothetically, the # of people that they will be able to treat will increase.
I think that as soon as the new drugs come out and prices are established we may see a number change in how many get treated. Certainly, there will be more treatments and competitors in only a few years.
There will still be trials, but I know how you feel about that, but many of these are going to be 95-100 cure rates for non-cirrhotics.
Going forwards we may even see a more specific treatment dialed exactly into your genotype and genotype subspecies populations.
At minimum try to keep yourself well; fit, on a good diet, avoiding those things we know to be bad for us; alcohol, ciggies, sugar, weed, processed and fast food, etc.
I have always thought a "spa" commune type setting would be a great place to launch a TX ranch while catering to their needs while they get cured and relax. What better time and place than a medical tourism setting. I believe that we could raise the bar on a cure rate too.
Sign me up as an employee. : )
~W
Hi arronp,
Good to hear from you. As you say, we just have to do the best we can to live a liver-friendly life until we get the chance of treatment. I don't know what the funding for drugs is like in your neck of the woods but I think it is a safe bet that it is not enough for everyone who needs tx. If you have cirrhosis then I guess you will be further up the wait list than I am. Please keep me posted if you are offered a treatment. I would be interested.
All the best,
dointime
Good to hear from you. As you say, we just have to do the best we can to live a liver-friendly life until we get the chance of treatment. I don't know what the funding for drugs is like in your neck of the woods but I think it is a safe bet that it is not enough for everyone who needs tx. If you have cirrhosis then I guess you will be further up the wait list than I am. Please keep me posted if you are offered a treatment. I would be interested.
All the best,
dointime
ALL PEOPLE WITH HEPATITIS C DESERVE LIFESAVING TREATMENT
The undersigned organizations, medical providers, and community members are alarmed by the escalating crisis in access to new lifesaving hepatitis C treatments. These drugs have the potential to help us end the hepatitis C epidemic and save thousands of lives. Although the Affordable Care Act recently helped millions of Americans gain access to health coverage, many for the first time, the ACA mandate that no individual be denied insurance based on a pre-existing condition is meaningless if that coverage restricts access to the treatment needed to cure that condition. Policies that deny access to new, highly effective hepatitis C treatment altogether or limit treatment only to the sickest patients violate laws that now ban discrimination against specific patient populations. They also undermine our ability to address health inequities and disparities, particularly among communities of color, which are more likely to face barriers to health care access and have disproportionally higher hepatitis C prevalence.
The FDA approval of highly promising hepatitis C treatments last year brought tremendous hope, as it marked the beginning of a new era in treating and curing the disease. With high cure rates, significantly reduced side effects compared to previous regimens, and shorter treatment durations compared to previous regimens, these new therapies, along with others in the pipeline, provide an opportunity to end needless suffering and death from extrahepatic conditions, end-stage liver disease, and liver cancer, while reducing and potentially eliminating new infections. Twenty-five years after the discovery of the hepatitis C virus, the tools are now available to eliminate a chronic, infectious, life-threatening disease that, according to data from the Centers for Disease Control and Prevention needlessly hastens the death of 15,000 to as many as 50,000 Americans per year.
We are therefore united in our call to all stakeholders, including public and private payers, the pharmaceutical industry, and government to work together to eliminate the barriers that have caused rationing of hepatitis C treatment:
Hepatitis C pharmaceutical companies must commit to affordable pricing, broad accessibility, and transparent, good-faith negotiations with payers;
Stakeholders must engage members of the patient, provider, and advocacy community in a process to address access barriers and to minimize consumer cost-sharing obligations;
Payers must ensure that individuals who inject drugs, the group most at risk for new infections, are not systemically excluded from treatment; and
We must send a strong message to all people with hepatitis C: they deserve to be cured and that everything is being done to end the current rationing of treatment.
In addition, no utilization management or prior authorization requirements must be put in place by public or private payers except when it can be demonstrated that such restrictions are developed through a transparent process that:
Is in accordance with clinical factors and not just cost effectiveness;
Involves consultation with recognized hepatitis C medical experts;
Includes meaningful input from the hepatitis C patient and advocate community; and
Requires each payer to maintain an exceptions process for any individual to appeal a denial of access based on their specific individual circumstances.
The only way we will stop the treatment access crisis is for all stakeholders to come to the table and develop solutions. The federal government, through its role in implementing the Affordable Care Act and ensuring access to affordable, quality care for all Americans has a responsibility to ensure that these discussions happen quickly, transparently, and with meaningful input from leading hepatitis C medical experts, community leaders, and, most importantly, people with hepatitis C.
Eliminating hepatitis C in the United States would be one of the greatest public health achievements of the 21st century. The question is not can we eliminate the virus, but do all stakeholders have the will to come together and develop real solutions. As a community, we will not rest until hepatitis C is eliminated, and we are committed to working with all stakeholders to achieve this goal. All people living with or at risk for hepatitis C, along with their families, their friends and their loved ones deserve no less.
Signatures (as of 8/6/14)
Medical Providers:
Brian R, Edlin, MD, FACP, FIDSA
Department of Medicine, Weill Cornell Medical Center, New York, NY
Robert Gish, MD
Vice Chair
National Viral Hepatitis Roundtable
Camilla Graham, MD
Beth Israel Deaconess Medical Center
Organizations:
Caring Ambassadors Program, Inc.
Family Health Centers of San Diego
Global Liver Institute
Harm Reduction Coalition
Hepatitis Education Project
Hepatitis C Mentor & Support Group, Inc.
Hepatitis C Support Project (HCV Advocate)
National Alliance of State and Territorial AIDS Directors
National Viral Hepatitis Roundtable
Project Inform
Treatment Access Expansion Project
The undersigned organizations, medical providers, and community members are alarmed by the escalating crisis in access to new lifesaving hepatitis C treatments. These drugs have the potential to help us end the hepatitis C epidemic and save thousands of lives. Although the Affordable Care Act recently helped millions of Americans gain access to health coverage, many for the first time, the ACA mandate that no individual be denied insurance based on a pre-existing condition is meaningless if that coverage restricts access to the treatment needed to cure that condition. Policies that deny access to new, highly effective hepatitis C treatment altogether or limit treatment only to the sickest patients violate laws that now ban discrimination against specific patient populations. They also undermine our ability to address health inequities and disparities, particularly among communities of color, which are more likely to face barriers to health care access and have disproportionally higher hepatitis C prevalence.
The FDA approval of highly promising hepatitis C treatments last year brought tremendous hope, as it marked the beginning of a new era in treating and curing the disease. With high cure rates, significantly reduced side effects compared to previous regimens, and shorter treatment durations compared to previous regimens, these new therapies, along with others in the pipeline, provide an opportunity to end needless suffering and death from extrahepatic conditions, end-stage liver disease, and liver cancer, while reducing and potentially eliminating new infections. Twenty-five years after the discovery of the hepatitis C virus, the tools are now available to eliminate a chronic, infectious, life-threatening disease that, according to data from the Centers for Disease Control and Prevention needlessly hastens the death of 15,000 to as many as 50,000 Americans per year.
We are therefore united in our call to all stakeholders, including public and private payers, the pharmaceutical industry, and government to work together to eliminate the barriers that have caused rationing of hepatitis C treatment:
Hepatitis C pharmaceutical companies must commit to affordable pricing, broad accessibility, and transparent, good-faith negotiations with payers;
Stakeholders must engage members of the patient, provider, and advocacy community in a process to address access barriers and to minimize consumer cost-sharing obligations;
Payers must ensure that individuals who inject drugs, the group most at risk for new infections, are not systemically excluded from treatment; and
We must send a strong message to all people with hepatitis C: they deserve to be cured and that everything is being done to end the current rationing of treatment.
In addition, no utilization management or prior authorization requirements must be put in place by public or private payers except when it can be demonstrated that such restrictions are developed through a transparent process that:
Is in accordance with clinical factors and not just cost effectiveness;
Involves consultation with recognized hepatitis C medical experts;
Includes meaningful input from the hepatitis C patient and advocate community; and
Requires each payer to maintain an exceptions process for any individual to appeal a denial of access based on their specific individual circumstances.
The only way we will stop the treatment access crisis is for all stakeholders to come to the table and develop solutions. The federal government, through its role in implementing the Affordable Care Act and ensuring access to affordable, quality care for all Americans has a responsibility to ensure that these discussions happen quickly, transparently, and with meaningful input from leading hepatitis C medical experts, community leaders, and, most importantly, people with hepatitis C.
Eliminating hepatitis C in the United States would be one of the greatest public health achievements of the 21st century. The question is not can we eliminate the virus, but do all stakeholders have the will to come together and develop real solutions. As a community, we will not rest until hepatitis C is eliminated, and we are committed to working with all stakeholders to achieve this goal. All people living with or at risk for hepatitis C, along with their families, their friends and their loved ones deserve no less.
Signatures (as of 8/6/14)
Medical Providers:
Brian R, Edlin, MD, FACP, FIDSA
Department of Medicine, Weill Cornell Medical Center, New York, NY
Robert Gish, MD
Vice Chair
National Viral Hepatitis Roundtable
Camilla Graham, MD
Beth Israel Deaconess Medical Center
Organizations:
Caring Ambassadors Program, Inc.
Family Health Centers of San Diego
Global Liver Institute
Harm Reduction Coalition
Hepatitis Education Project
Hepatitis C Mentor & Support Group, Inc.
Hepatitis C Support Project (HCV Advocate)
National Alliance of State and Territorial AIDS Directors
National Viral Hepatitis Roundtable
Project Inform
Treatment Access Expansion Project
The guys at hcvadvocate.org have just put out the following special alert. If you want to add your signature I think you can go to their website and do it.
dointime
"We are at a critical moment in advocacy for hepatitis C. We now have medications that can cure up to 90% of people with hepatitis C. The new drugs have fewer side effects, and shorter treatment duration than previous drug combinations.
The previous drug combinations required treatment for up to 48 weeks and had many side effects. The cost of the last round of drugs was lower, but the drugs had many more side effects that prevented most people from qualifying for treatment and, of course, even more people were afraid to take the medications.
Well, the ‘better’ medications are now available and they are being greatly restricted because of price.
I hope that everyone with hepatitis C, their loved ones and everyone affected by hepatitis C will read this letter and sign on. It’s time for us all to step up and make our voices heard and bring everyone to the table. We need to make these lifesaving medications available to everyone with hepatitis C."
Please pass along this message.
" In response to the escalating crisis in access to new, lifesaving hepatitis C medications, a coalition of organizations and medical providers (see list below) has developed the following sign-on statement. Everyone living with hepatitis C who wants to be treated and cured should have access to treatment without barriers. This statement calls on all stakeholders to work together on a solution that ends the current practice of rationing hepatitis C treatment and sends a strong statement that all lives are worth saving.
Individuals, organizations, and medical providers are all encouraged to sign.
Your signature indicates permission for it to be used in a variety of advocacy and media activities.
Deadline to be listed in first publicly released version of the statement: 5 pm Eastern, Friday, August 15, 2014. Signatures will be accepted after this deadline and the statement will be updated on a weekly basis with new signatures."
dointime
"We are at a critical moment in advocacy for hepatitis C. We now have medications that can cure up to 90% of people with hepatitis C. The new drugs have fewer side effects, and shorter treatment duration than previous drug combinations.
The previous drug combinations required treatment for up to 48 weeks and had many side effects. The cost of the last round of drugs was lower, but the drugs had many more side effects that prevented most people from qualifying for treatment and, of course, even more people were afraid to take the medications.
Well, the ‘better’ medications are now available and they are being greatly restricted because of price.
I hope that everyone with hepatitis C, their loved ones and everyone affected by hepatitis C will read this letter and sign on. It’s time for us all to step up and make our voices heard and bring everyone to the table. We need to make these lifesaving medications available to everyone with hepatitis C."
Please pass along this message.
" In response to the escalating crisis in access to new, lifesaving hepatitis C medications, a coalition of organizations and medical providers (see list below) has developed the following sign-on statement. Everyone living with hepatitis C who wants to be treated and cured should have access to treatment without barriers. This statement calls on all stakeholders to work together on a solution that ends the current practice of rationing hepatitis C treatment and sends a strong statement that all lives are worth saving.
Individuals, organizations, and medical providers are all encouraged to sign.
Your signature indicates permission for it to be used in a variety of advocacy and media activities.
Deadline to be listed in first publicly released version of the statement: 5 pm Eastern, Friday, August 15, 2014. Signatures will be accepted after this deadline and the statement will be updated on a weekly basis with new signatures."
Thanks susan for sending me to this post, hi doing time im in a similar boat although alot younger, ive decided to eat things that can slow down the speed at which the virus spreads ie selenium apparently is what this virus eats when its gone it moves on, walnuts,wheat,advacados,green tea but i hear herbs are bad for us but certainly better then other caffeins i suspect, lemon juice red ,carrots tons of other stuff that should help the liver fight better ,apples sprouts garlic cranberry juice pure cod no batter and fruits organic as pesticides would harm us. i feel a little better since eating doing these but i cant be certain. im trying to stay alive as long as possible until solvaldi or at least a medication that is 70 percent for geno type 1 with cirrhosis hope you get yours. keep me posted if you hear of anything in the uk and ill do the same best of look always fighting with you
Glad to see you on this side. I hope somebody has some suggestions or comments for you! Susan400
So ...... does anybody have a recommendation on where to go, name and address of a medical facility, name of a doctor? So far I have India, Thailand Turkey and Egypt. I can't be the only person who is thinking of doing this, or who has already done it. I am talking about perfectly legal state-of-the-art facilities. PM me please.
dointime
dointime
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