Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> General Discussion -> If your interested in protesting the unfair practice of denying sofosbuvir combined with drugs that are not interferon
Post Info TOPIC: If your interested in protesting the unfair practice of denying sofosbuvir combined with drugs that are not interferon
Groupergetter


Guru

Status: Offline
Posts: 796
Date:
RE: If your interested in protesting the unfair practice of denying sofosbuvir combined with drugs that are not interfer
Permalink  
 

There is little in life that is "fair".... perhaps less in death.  I am Thankful for those being given the opportunity, hope, and joy, of an HCV free life.



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Isiscat2011


Guru

Status: Offline
Posts: 1724
Date:
Permalink  
 

PW:

I'm glad you wrote more about your position and I can see we agree on a great deal.   This is a hot topic and I appreciate that it is being discussed openly here.  



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Isiscat2011


Guru

Status: Offline
Posts: 1724
Date:
Permalink  
 

mallani wrote:

Guys,

Please! The WHO rankings were produced in 2000, based on data from 1997. The rankings are flawed.

Spain ranks 7th., but you can't even get Victrelis or Incivek unless you're cirrhotic, and live in the right city.

Australia hasn't even approved Sovaldi, and if it does, it won't be available for years.

Be thankful for what you've got.

Follow-up reports by the WHO, and most notably, The Organization for Economic Cooperation and Development (OECD), have been published in nearly every year since the initial report in 2000.  These reports include thousands of pages of detailed statistics and analysis by medical economists who don't think they are flawed. 

I agree we should be thankful for what we have but the fact is many people in the US probably won't have it for some time.  I expect I will have it but that isn't good enough for me.   We should be able to do better not only with this disease but with health care in general.  

 



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
patiently_waiting


Senior Member

Status: Offline
Posts: 170
Date:
Permalink  
 

mallani wrote:

Guys,

Please! The WHO rankings were produced in 2000, based on data from 1997. The rankings are flawed.

Spain ranks 7th., but you can't even get Victrelis or Incivek unless you're cirrhotic, and live in the right city.

Australia hasn't even approved Sovaldi, and if it does, it won't be available for years.

Be thankful for what you've got.

Guys?  I just got through saying the WHO rankings weren't relevant. :)  If you're referring to my comment about drugs being available in other countries I was trying to make the point that many countries ranked high on the WHO list benefit from drugs developed here.  I also said we have to be careful about mucking around with our current system without making sure we're replacing it with something better.  I am happy to have new drugs and don't want to rain on the parade, but who's to say we couldn't have had these years ago?  Why have the various drug companies developing these new drugs resisted doing trials with their competitors' drugs?  Why wasn't there a Solvadi/Olysio trial already which would have avoided this off-label nonsense?  Maybe I'm ill-informed but I just have the impression that business may have gotten in the way of us getting these drugs sooner.  Just my opinion - to each his own. :)  If I'm way off because I'm missing info feel free to straighten me out.



__________________

42 yrs old: geno 1b, 23mil VL, ALT/AST 269/94 as of Apr '14.  Got HCV when I was 16.  Relapsed from Peg/Riba twice, last time in '08.  Completed Sol/Oly on 9/2/14, UND as of 10/7/14
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Guys,

Please! The WHO rankings were produced in 2000, based on data from 1997. The rankings are flawed.

Spain ranks 7th., but you can't even get Victrelis or Incivek unless you're cirrhotic, and live in the right city.

Australia hasn't even approved Sovaldi, and if it does, it won't be available for years.

Be thankful for what you've got.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
patiently_waiting


Senior Member

Status: Offline
Posts: 170
Date:
Permalink  
 

Isiscat2011 wrote:

PW:

If profitability translates to superior health care then why does the US constantly rank so poorly in health care?  According to the World Health Organization the US ranks 37th in health care.  A comprehensive Bloomberg study ranks the US as 47th.  

This isn't a question of abandoning the free market economic system (or "throwing out the baby with the bath water" as you put it).  That is the erroneous, fear based, argument set forth by profiteers of the human suffering that poor health care brings.  Industrialized countries with free market systems all over the world are kicking our butts with better health care (both in terms of accessibility and quality of care).  

The pharmaceutical and insurance companies are out of control with greed and they are running the US health care system.  The medical profession is largely a hostage to this sad state of affairs.  Patients are the victims of it. 

 

I think you misunderstood my post, probably because I didn't explain my point well enough.  I am not defending the current system.  I'm only pointing out what the current system is and that's for-profit.  Also my comments were about drug R&D specifically and not about general health care.  There's a big difference in those two things and the W.H.O. health rankings don't really have anything to do with drug research (new drugs are typically available in all the countries in their rankings regardless of where they were developed).

Reform of the current system would take time if it ever happens at all - I hope it does.  Unless reform does happen, we can't expect (or force) the drug companies to lose money as that would break the only system we have.  Am I saying the pricing is fair?  No.  I don't know if it's fair because I haven't seen what their costs were to develop the drugs, but frankly I seriously doubt others have either who are crying foul.  At a minimum the drug companies are going to calculate how much they spent to develop a drug and estimate how much sales they'll get in return to arrive at a price.  Maybe they are profiteering - I don't know.  I think though before anyone can make that accusation they should have some numbers to back it up.  Hopefully Congress can have an honest investigation into whether profiteering is happening and not the typical grandstanding nonsense they usually put on.

In summary, I think we agree that the current system is not right.  I strongly disagree with how research is incentivized and how drugs are marketed (the way drugs are marketed to doctors is highly disturbing).  I would love to see more government involvement in the form of subsidies directed at research that is most beneficial to public health.  I'd also like to see far more restrictions on drug marketing, especially the direct marketing to doctors.  I am not holding my breath, however, as I think we're all aware of the chances of anything productive getting through the current Congress.  In the mean time I'm afraid we will have to live with the system we have, unfortunately.

 



__________________

42 yrs old: geno 1b, 23mil VL, ALT/AST 269/94 as of Apr '14.  Got HCV when I was 16.  Relapsed from Peg/Riba twice, last time in '08.  Completed Sol/Oly on 9/2/14, UND as of 10/7/14
Isiscat2011


Guru

Status: Offline
Posts: 1724
Date:
Permalink  
 

PW:

If profitability translates to superior health care then why does the US constantly rank so poorly in health care?  According to the World Health Organization the US ranks 37th in health care.  A comprehensive Bloomberg study ranks the US as 47th.  

This isn't a question of abandoning the free market economic system (or "throwing out the baby with the bath water" as you put it).  That is the erroneous, fear based, argument set forth by profiteers of the human suffering that poor health care brings.  Industrialized countries with free market systems all over the world are kicking our butts with better health care (both in terms of accessibility and quality of care).  

The pharmaceutical and insurance companies are out of control with greed and they are running the US health care system.  The medical profession is largely a hostage to this sad state of affairs.  Patients are the victims of it. 

 



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
patiently_waiting


Senior Member

Status: Offline
Posts: 170
Date:
If your interested in protesting the unfair practice of denying sofosbuvir combined with drugs that are not interferon
Permalink  
 

Lizzy,
I share your frustration with how the current system works. There's something inherently wrong with the majority of health R&D being driven by profitability more than what's best for public health. While those two things aren't always mutually exclusive, there are some examples where they are. However, since we have the system we do, if the profit is removed from the equation then the force behind the research that brings us new treatments also is removed. I do believe reform is needed but we have to be careful we don't throw the baby out with the bath water. Hopefully some day there will be reform. I would like to see a more hybrid system where research is subsidized and directed more by public need, but also allow for drug companies to profit from meeting those needs. Let's face it...profit is usually what gets things done in the world we live in.

Let me provide a hypothetical scenario to illustrate my point of view. A drug company is trying to make decisions on what type of research to invest in and it's faced with two options: a) develop medication to manage an illness over a long period of time, which would result in longer, more sustained return (not only do people take the meds longer but the disease continues to spread) or b) invest in a cure that would eradicate the illness in a short amount of time, thus drastically reducing return (shorter treatment duration and fewer new patients as the disease is eradicated) unless they charge exponentially more for the drug. They choose option B and then face so much heat from government and the marketplace they are forced to cut the price of their drug and end up losing money. If this happens I'm afraid we will not see much investment in cures moving forward. This is obviously a highly simplified scenario and often research is driven by new discoveries and not purely by ROI, but I suspect this situation may be more common than we'd all like. Now all that said I do think there should be oversight to make sure they aren't sticking it to everyone for obscene profits, but they do need to make money to make sure the incentive is there.

All this is just my personal, and probably cynical, outlook on things. I don't work in the drug industry nor am I a doctor. I do understand how business works though and like it or not, drugs are a business. Believe me, I get as infuriated as anyone when I think about people's conditions getting worse because of the drug companies not working together or for other business reasons. I don't think they're evil. I think they would love to do the right thing, but they have to answer to shareholders first and foremost. That's the problem. Personally I think the government should allocate far more subsidies to these types of treatments than it currently does, but then I may be a bit biased. :)

As far as doctors still trying to prescribe interferon, I think this is why it's important for people to inform themselves. I hope you are not being refused coverage for the new meds as I know some people are. Hopefully a solution to this problem will come soon. It sounds like at least in October when the Gilead drugs are FDA approved the situation might improve. Best of luck to you.



-- Edited by patiently_waiting on Wednesday 23rd of April 2014 09:47:36 PM

__________________

42 yrs old: geno 1b, 23mil VL, ALT/AST 269/94 as of Apr '14.  Got HCV when I was 16.  Relapsed from Peg/Riba twice, last time in '08.  Completed Sol/Oly on 9/2/14, UND as of 10/7/14
Isiscat2011


Guru

Status: Offline
Posts: 1724
Date:
RE: If your interested in protesting the unfair practice of denying sofosbuvir combined with drugs that are not interfer
Permalink  
 

Lizzy wrote:

Many doctors are refusing to treat patients with the new medicines.

_____________________________________________________________

 

Hi Lizzy:

I  appreciate your passion and agree with most of your statement.  However, I don't think the assertion that many doctors are refusing to treat patients with the new medicines is accurate.  Please correct me if there is reliable data to support this claim.  If this has happened to you perhaps you could post the facts pertaining to the refusal.  Members here might be able to help.

 

The problem, as I understand it, is not that doctors are refusing to treat patients with the new medicines.  The challenge, for patients and doctors alike, is the lack of availability and prohibitive costs of new hep c treatment medicines.  Presently,  Sovaldi and Olysio are the only  "new" all oral meds available in the US.  They can be, and are being, prescribed together off-label for some patients (this combination is not appropriate for all patients). Neither Ledipasvir nor declatasvir are FDA approved in the US so docs can't prescribe them.

  

I simply can't imagine that any competent physician would refuse to prescribe safer and more efficacious meds.  Many doctors are specifically advising patients, who are willing and able, to wait for the interferon free options.  

 

Best regards.  

 

 

 



__________________

Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Lizzy


Member

Status: Offline
Posts: 7
Date:
If your interested in protesting the unfair practice of denying sofosbuvir combined with drugs that are not interferon
Permalink  
 

IF YOUR HEALTH IS STRONG, SAY "NO" TO TREATMENT WITH INTERFERON - BUT CONTINUE TO SEE YOUR GASTROENTEROLOGIST - EVERY TIME INSISTING ON THE NEW TREATMENTS - WE NEED A MASS MOVEMENT OF PATIENTS REFUSING THIS TREATMENT - THE ONLY MEDICINES WE SHOULD PERMIT DOCTORS TO TREAT US WITH ARE THE NEW, SAFE AND EFFECTIVE MEDICATIONS - SOVALDI (generic name is Sofosbuvir) IN COMBINATION WITH OTHER SAFE MEDICATIONS.

I believe a pharmaceutical company has a responsibility to keep medications affordable and to ensure immediate applications to the FDA and to work cooperatively with companies that have complementary medicines and to distribute these medicines to those with life threatening diseases, regardless of whether they can afford to pay for them. A responsible government monitors pharmaceutical companies. Although those who have invested money in a pharmaceutical company may believe that their individual financial profit is a priority, they are misguided. A diseased society puts the wealthy at risk too. And denying cures to the dying further destroys a society, as fathers and mothers of children die, often leaving the children with no one to raise them.

I am disappointed with Gilead. Unless there is something I don't know about the sofosbuvir/declatasvir trials, we should have had the cure years ago. It seems corporate interests prevented this from happening. If this is true, the government should have interceded to ensure the proper treatment of patients.

Insurance companies are denying treatment with the new medicines and insist that we be treated with the older, ineffective and dangerous medicines. Many doctors are refusing to treat patients with the new medicines.

I have been wanting to be treated since the first sofosbuvir/declatasvir trials. I've been holding out for safe and effective treatments since my diagnosis in 2002 and am hoping for treatment this October with sofosbuvir/ledipasvir. But I'm really less concerned about my own needs and more concerned about the needs of those who are very sick and dying. I'm sad for the families of those who have died in the past few years, unnecessarily.



__________________

genotype 1a with a mutation called Q80K polymorphism

have avoided treatment since diagnosis in 2001 with the knowledge that a safe and effective cure would be developed

have no idea how or when I contracted the virus
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> General Discussion -> If your interested in protesting the unfair practice of denying sofosbuvir combined with drugs that are not interferon
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.