The Tasmanian Hep C Buyers’ Club

Jul 25, 2017 · 104 comments
M (Smith)
There is at least one company in the US doing this. For those of us without insurance, but with some means, pharmaceutical tourism is one option.
paul (CA)
Imagine if the same mindset had been applied to the discovery of penicillin. I'm sure a company could have made lots of money with a monopoly on the only cure of many diseases at the time.

I think of the many inventors of vaccines who along with the corporations they worked with provided medical care at a reasonable cost for decades. Until someone realized how much money could be made off of desperate people.
Connecticut Yankee (Middlesex County, CT)
Knock-off drugs from India. What could go wrong?
Iain McDonald (Australia)
The maker of these drugs licensed several companies to produce generics in India.

It is literally the same medication, made using the same recipe, which was provided to them by the patent holder.
Iain McDonald (Australia)
For those arguing that Big Pharma are entitled to charge these exorbitant amounts due to their research costs, I think you may need to look further into the numbers here.

The company that developed Sofosbuvir spent approximately $281 million on research and development, this is a matter of public record now. Gilead did not develop Sofosbuvir, they purchased the company that did develop it. They spent in total $11 billion to buy the company, Pharmasset, and they have made back more than that amount every year in profit from these medications since Sofosbuvir was released onto the market.

So the people that did do the research and development and risked the capital in the first place were rewarded fairly well with $11 billion return for ~$300 million invested, not a bad return I'd say.

Using these same Gilead mark-ups a new iPhone would cost $100,000 and no-one would buy them, but when this medication will literally save your life that isn't really an option for most.

FixHepC and people like Mr Jeffreys are the reasons 1000's of people who could not afford it otherwise are being treated.
Chris (South Florida)
Quite simply if you can't afford the drug it is unavailable to you is the best statement in the story and it should disgust everyone in America. I admire this resourceful Aussie for using his skills to help others rather than extracting a profit from desperate people the world over. I would gladly donate money to help out the people who for them even $1,000 is a bridge too far. In the memory of my late cousin who died of hep C 25 years ago in his thirties.
highkix (El Cerrito, CA)
I am curious what data the author has to back up this assertion, "Substance abuse reduces the chances the patient will take the medicines correctly." The data on HCV treatment adherence shows otherwise and all clinical guidance (e.g., from the Veterans Administration, from the American Association for the Study of Liver Diseases & the Infectious Diseases Society of America) states that substance use should not exclude people from receiving HCV treatment. Throughout the United States, people who use drugs are being successfully treated in primary care clinics, at syringe exchange programs, and in drug treatment programs. Payors that require abstinence from drugs in order to receive HCV treatment are doing based on stigma and a desire to contain costs. These restrictions are not clinically indicated.
Umm..excuse me (MA)
I firmly believe that cost containment is the real reason (nothing to do with taking medicines "correctly"). The thought is that IV drug users, even if cured of Hep C with medication, are highly likely to contract it again due to continued drug usage. The scarcity of needle exchange programs make this assumption probable.
Onelastchance (London)
When Greg traveled to India Gilead had not agreed pricing for sales in Australia they were not available for treating Hep C patients hence his trip to India.
Australia only negotiated the use of these drugs after Greg , Fix Hep C & Dr James Freeman had treated thousands of patients for a fraction of the price Gilead was charging every other western country. You can rest assured they agreed to sell at a far lower price due to the amount of patients being treated with generics in Australia.
Dr James Freeman & Fix Hep C have treated thousands of patients many of whom are American all had two things in common they had Hep C and insurance carriers who refused to treat them.
I was one of the first patients in Europe to buy generics from FIx Hep C, I like Greg am now cured.
Cod (MA)
Bottom line is 'greed kills'.
Ian Maitland (Wayzata)
No. Bottom line is greed has saved the lives of tens or hundreds of thousands of HCV patients.
Bob Warren (Sonoma Co)
A lot of the moralizing here (those greedy bastards...) is justified, but working for a biotech startup has an energy about it that is incredible. Young men and women with advanced degrees in biotech, s/w engineering, microbiology etc. are willing to put in incredibly long hours in large part by the promise they will make a ton of money when their team gets acquired by the likes of Gilead, Roche, etc. AND their new drug or process will be taken through approvals and productised.
Not sure this energy can be replicated by well intended government agency.
Elizabeth (Seattle, WA)
Penicillin was developed in a UK government lab where the researchers could barely afford to keep the heat on. They literally stole supplies. And they got paid peanuts. They did the work because it was the work they knew how to do, and because discovering something important is the biggest high you can experience.
Ian Maitland (Wayzata)
There are a lot of unanswered questions here.

The op-ed piece notes that, at its introduction in 2014, Sovaldi was priced at $84,000 per treatment (which in > 90% of cases means the patient is cured) in the UNITED STATES. But Jefferys was in AUSTRALIA, and Sovaldi cost far less in Australia. Second, within a year or two, the price (in the US) had fallen by around 45% due to competition. Did the same happen in Australia?

It is not clear what price would Jefferys have had to pay to get the treatment in Australia. Or whether Jefferys had health insurance. Was the treatment not covered by the Australian national health system?

Jefferys was not poor. Was $40,000 (?) beyond his means?

One of the reasons that health systems around the world rationed access to Sovaldi and Harvoni was not because the price was so high but because the DEMAND was so high. Doctors had advised their HCV patients to wait for the new treatments, so there was a huge pent-up demand. To remain solvent, insurers rationed demand. The urgent cases were given priority -- they were presumably at the greatest risk of developing liver cirrhosis. If Jefferys was unable to get immediate treatment, was that because his case was deemed less urgent? Did he cut in line to get his treatment?

Now that his finances seem to have been restored, has Jefferys considered sending a fat check -- with his undying gratitude -- to Gilead?
anianiau (Honolulu, HI)
And why would/should he send a check to Gilead?
Lolostar (<br/>)
This would not be necessary if Gilead and their ilk would stop running their corporations based solely on greed. and start actually caring about people. But that's probably too much to ask for in our corporate-run farce of a health-care system, which is all about money-money-money for insurer and the phamamcutical industry.
W.A. Spitzer (Faywood)
"This would not be necessary if Gilead and their ilk would stop running their corporations based solely on greed."....Suppose you had some hard earned money to invest, and you had a choice, would you choose an investment that returned 2% a year or an investment that returned 10% a year? My point is that the problem is not Gilead that is at fault for being greedy. Look in the mirror. Unless you would deliberately choose the investment that returned 2%, you are the one who is responsible.
Ian Maitland (Wayzata)
This would not be necessary if Gilead and their ilk would stop running their corporations based solely on greed because there would be no cure for Hep C.
David Leinweber (<br/>)
I can understand Gilead wanting to make a good profit on this important drug that took years of brilliant and expensive research to develop. America has great drugs because of the profit-incentive, no doubt. Gilead is a great company with scientists who deserve to be paid, along with shareholders. But it's also true that other countries play the USA for a sucker, not to paraphrase our President. Other countries with state-subsidized or different economic circumstances can make the drug available for way, way, way less. Harvoni sold for less than a thousand dollars a treatment in Egypt. Think about that.
Meanwhile, Gilead makes up for the difference by overcharging richer countries, particularly the USA. They charge some US patient $85,000, then turn around the make the same drug available in Egypt for $1000. If you or your insurers paid $80,000 for this drug, your money supported not only your treatment but also that of many others in third-world countries. Then we wonder why medical costs are so ridiculous. BTW, college tuition is sky-high for the same reason. The college charges each person as much as it possibly can charge them. The rich end up paying way more to help support less affluent student. One student is overcharged so that another student can be undercharged. If you are a 'full-pay' student, you are a sucker helping to support financial aid packages for other students. Same basic idea.
W (Florida)
As a survivor of Hep C, and grateful recipient of Harvoni, I applaud this gentleman and his determination to help others. I am also extremely eager to be of assistance to him in his endeavours. Please contact me if you need assistance in the US!
Ian Maitland (Wayzata)
Maybe you should express your undying gratitude to the companies that made your survival possible too. Strange that in America no good deed goes unpunished.
eddies (Kingston NY)
'... and there was a black horse, ,and its rider held a scale in his hand." I heard what seemed to be a voice in the midst of the four living creatures. It said, " a ration of wheat costs as day's pay, and three rations of barley cost a day's pay. But do not damage the olive oil or the wine." Revelation 6,6 Why this convoluted way to write,there will be famine? Seems the human race will see drug famine, with the reply, you're not sick enough yet. What? That era is over I pray.
as for wheat, Uganda was named the birthplace of a wheat plague, famine, invest there next you pharmacies.
henry gottlieb (ct)
I purchase my heart medication, thru a Canadian company, and get the drugs delivered from India.... Same drug, same packaging, but about one third the cost (even with my insurance and medicare part [dumb])
EGM (New City NY)
re henry gottleig: the same , we purchase both insulin pens as well as other diabetic drugs (3 month supply) thru a Canadian pharmacy - the insulin is shipped from Canada, and the others shipped from India to our home, at a cost far, far less then even the Part D premiums alone, which we have since dropped.
PAN (NC)
Irony that Mr. Jeffreys breaks the law to save people's lives while the GOP is busy trying to "break" the ACA law that would inevitably kill many people.

How much tax payer and donation money went into research that got to the point where the drug was developed?

Your life or your money. Is that the business the healthcare industry is in?
Martin Smith (BC)
The Province of BC recently decided to provide treatment for HCV to BC residents on a no-qualification basis. That is to say, if you test positive for HCV, your treatment is completely covered regardless of your level of liver fibrosis and/or other factors. I am currently halfway through a 12-week course of Epclusa, one of the newer one-a-day pills. This is paid for by my federally-mandated universal healthcare coverage administered by the provincial health authority. Just saying.
Cod (MA)
Lucky you in Canada. Not so much here in the US.
Getreal (Colorado)
Patent life on drugs should be reduced to 4 yrs. Non renewable ! Non transferable.
They shouldn't be allowed to make a killing on a (Your money of your life) health care system any longer than that.
W.A. Spitzer (Faywood)
"Patent life on drugs should be reduced to 4 yrs."....Clinical trials generally cost in the range of $500,000 million to a billion dollars. Therefore it is not reasonable to expect a drug company to start a clinical trial without some assurance of patent protection. A typical clinical trial will take 6 to 8 years, sometimes much longer. 4 year patent protection is not viable.
Getreal (Colorado)
Spitzer,
When a pill costs $1.00 or often less, and you sell them for $600-$1000 or More per pill. Who are you kidding ? Take a look at the CEO's salaries. Take a look at the stock prices. Take look at all their advertising.
Oh sure, ACA will pay for all of this. Let's bankrupt it with obscene gouging so it fails.
How did we manage before the gougers got into the act?
Martin Shkreli's pen was profitable before he jacked everybody up with a 500% price increase. Spin your yarn to the gullible. Prescriptions used to be affordable. 4 yrs of gouging is way more than enough.
W.A. Spitzer (Faywood)
Getreal - When you speak of epi-pen you are talking about a generic drug, which is completely different animal. And yes it may cost $1 to manufacture the pill, but that is not what you are paying for. You are paying for the research, discovery, development, and clinical trials which cost hundreds of millions of dollars. And all of that money is paid out before the first pill is ever sold.
MC (Indiana)
I'd like to make a comment about the drug Harvoni mentioned in this piece. It is marketed as a combination of an older drug, sofosbuvir, combined with ledipasvir. For the many who don't know how utterly immoral drug patents work, this might seem like innovation, but in truth this is strictly a way for Gilead to maintain a constant renewal of the patent on sofosbuvir by using a simple intermixture scheme. There is *NO* justification for not selling and prescribing these drugs separately other than retaining the patent. To make an example, it would be like putting mixing aspirin with some other blood pressure medication, calling the formulation "new" and being able to charge thousands more for the deployment of a "new" compound. Gilead will, in turn, stop production of sofosbuvir alone, ensuring that the only option on the market will be the newer, more expensive compound.

The Times urgently needs to publish an in depth piece on drug development and patenting. This would help highlight just how *few* drugs have actually been released from patent protections, despite having been developed ages and ages ago. The process of patent evergreening, combinatorial chemistry substitutions, admixture compounds and other trickery in both gaming the patent system and FDA approval process need serious bringing to light, and largely explains the huge increases in the cost of drugs even without substantial progress in novel development (with the possible exception of large-molecule drugs).
Dennis (Johns Island, SC)
Yes! Why isn't the Times able to do this kind of in-depth research?

The Pharmacutical industry (Big Pharma) Has 1000s of lobbyists, 'donating' literally millions of dollars to 'their senators and congressmen. Many of the drugs they develop start out with funding by the NIH and other federal funders, from initial investigation up through, in some cases, trials. It's against the law for Medicare, etc. to bargain for lower prices. (See lobbyist above). No bargaining allowed.

We've got a lot of scams in Mr. Trump's (and our) swamp, but the drug industry is the worst, and nobody in the media seems to be willing to launch a deep investigation. One wonders why? Could it have anything to do with advertising dollars spent in newspapers and on television? Of course not! That's a 'fake claim.'
Ian Maitland (Wayzata)
Jefferys says: "It’s a miraculous discovery. But it’s just such a pity it’s being exploited so heavily for profit and being denied to so many people.”

Miraculous? There was nothing miraculous about it.

The drug that cured Jefferys's Hepatitis C was made possible by the very same profits he deplores.

Sofosbuvir is available more cheaply in India because the country is desperately poor. As a humanitarian act, Gilead Life Sciences allowed the manufacture of sofosbuvir in India. The agreement provided that the drug could be priced at $900 per treatment, far lower than in rich countries.

But if rich people like Jefferys (we are told he is not poor), and unsavory middlemen like Parag Jain, game the system by exporting drugs intended to be for the benefit of the poorest of the poor, then they undercut the system.

Poor countries lose because drug companies will be reluctant to make such humanitarian agreements with future life-saving discoveries. And poor countries and rich countries lose because such cheating reduces drug companies' profitability and so their incentives to invest in new breakthroughs.

Maybe someone can design a better system, but for now the way our system works is that drug companies have to make all their profits within the narrow window imposed by our patent laws. Once the patent expires the drug belongs to the world. That flawed system produces what Jefferys calls "miracles."
Bruce Rubenstein (Minneapolis)
If he's "gaming the system" what is a pharmaceutical company that charges $60 -$90 thousand for a treatment doing?
Ian Maitland (Wayzata)
Bruce Rubenstein:

Making an honest buck. What else?

Miracles don't come for free, but this one is cheap at the price.
Bruce Rubenstein (Minneapolis)
Cheap when normal human beings who need it can't afford it? Cheap when Medicare in La. won't order the treatment unless the patient's liver is failing because it's costs so much? What would it have to cost to be expensive?
MPH (New Rochelle, NY)
I'm sure 90% of people reading this piece understand that to develop ground-breaking drugs - along with all the failures - there must be the lure of profit - yet the monopoly along with non-developed markets where for compassionate and economic reasons the same drug is made available for a fraction of the price lead to ridiculous prices in the US and other developed countries.
This is a problem with no easy solution and while I don't blame this enterprising Aussie his is not an enduring solution.
This is a problem that requires the best minds and innovative solutions.
henry gottlieb (ct)
you missed infinite profits
Alexander K. (Minnesota)
The fundamental problem in our current system is the tension between: (1) need for private investment in order to pay for the astronomic costs of bringing a drug through clinical trials to the market (yet, investors ultimately only care about profit), and (2) many patients are not able to afford life-saving treatments because the investors rather than patients are the priority.

Clearly, one can come up with reasonable solutions. Regulators should be able to weigh in on the cost of the drug based on its manufacturing costs and make sure it is available to all patients who need it. At the same time, investors should be assured a reasonable return on their contribution. Nobody should become a billionaire on other people's misfortune. Pure greed is not healthy.
Easy Goer (Louisiana)
I am a recovering alcoholic/addict. My drug of choice are opiates; now reaching epidemic proportions.

Around 14 years ago, I discovered I had hepatitis C, genotype 1b. I had used injectible drugs starting around age 19; I am 63 years old.

Unlike him, I discovered I had hep C about 14 years ago. Living in NYC, I sought help from a hematologist in Queens who had treated over 6000 Hep C patients. This was all long before Gilead Sciences.

Since I got clean and sober in 1985, I haven't had alcohol (and many other drugs) since then. Most important alcohol, which destroys your liver. I have not had alcohol in 32 years.

After a biopsy done by the same specialist, it came back with very mild scarring, (1/4), which is the best possible outcome I could have hoped for. I didn't want the interferon / ribovirin treatment which so many of my friends had. It's like injecting the flu for almost a year. I have Hep C, genotype 1b;it had a 44% cure rate. No way.

There were many things I would soon be eligible for. He said my own immune system and lack of alcohol were doing very much as well. It was my choice, and I had a stable count for at least 25 years then.

I am speaking about my old friends who were still alive from getting clean, or dead (overdose).

I had a great insurance policy (22+ years) for my family; wife (now ex) and now almost 12 y/o daughter.

Harvoni came out. I met all requirements. Big pharma rejected me (plus 3 appeals). I lost my ins. in 2016.

They still say no.
Ann Poore (Salt Lake City, Utah)
I spent 18 months some 17 years ago on the hideous interferon/ribovirin treatment -- injecting the flu, as Easy Goer put it so aptly -- with a 13% chance of clearing the virus. Happily and amazingly, I did. But, get this, the ribovirin WAS NOT FDA APPROVED for treating HepC in the U.S. at that time, though widely used in Europe. It had been developed for AIDS patients and, after writing the man who created the drug who said, "sell the house, sell the car, anything is better than dying of liver failure" and finding a terrific doctor willing to monitor my treatment, I brought in the drug from Mexico through an AIDS buyers club in San Francisco at a frighteningly prohibitive cost for a newspaper copy editor. It even had a DEA stamp. I had planned to write a book but Hollywood beat me to it. Thank you, Ron Woodroof and Greg Jefferys for doing the right thing.
W.A. Spitzer (Faywood)
Ann Poore - Ribovirin is approved for use in the U.S. for respiratory syncytial virus. Your doctor should have been able to use ribavirin to treat your Hep C in an off label use.
highkix (El Cerrito, CA)
If people are having trouble accessing hep C meds in the U.S., I recommend reaching out to the folks at www.help4hep.org - they are health educators and peer counselors who can help navigate the process for folks and know what resources exist to help people get their medication covered by insurance or through patient assistance programs.
pmbrig (Massachusetts)
Here is the latest example of how our health care system in the US is broken, specifically, the way we fund drug development. The drug companies are doing what they are bound to do in this system, charge enormous prices for drugs that cost billions to develop, enough to recoup their investment and then some, so they can pay for advertising and still get a profit for their shareholders.

Drug development should be funded by taxpayer money and the resulting drugs should be available at the cost of manufacturing them (usually peanuts). We would require a tax increase to pay for it, but the overall cost to everyone would be less, since advertising and profit-taking would be taken out of the picture. But no, that's "socialized medicine," that's "increasing taxes." What a terrible thing, for people to be able to afford lifesaving medication. We can't let that happen, can we? It would be un-American.
Cod (MA)
A lot of pharma drug research is publicly funded by our tax dollars, by the NIH and universities, then privately patented somehow. This has to end.
Can you imagine if Jonas Salk did not allow his cure for polio to be widely distributed for free?
medianone (usa)
The research leading to the Hep C drug Sovaldi was initially done by Dr. Raymond Schinazi, a senior research career scientist at the Atlanta VA Medical Center and an investigator in the Center for AIDS Research at Emory University. [using taxpayer dollars]

Pharmasset was founded in 1998 by Raymond Schinazi and Dennis Liotta, scientists at Emory University. [all receiving taxpayer dollars] The company was initially incorporated in Barbados (as Pharmasset, Ltd.) and separately in Georgia. However, the company was redomiciled as a Delaware corporation on June 8, 2004.

Pharmasset originally developed Sofosbuvir (brand name Sovaldi). When Gilead Sciences acquired Pharmasset for $11.2 billion in 2012, the "smaller company had forecast a $36,000 price per treatment course of Sovaldi.

In response to Gilead's pricing of Solvadi at $84,000 per treatment course the United States Senate Finance Committee wrote a letter to CEO John C. Martin questioning how much Pharmasset had spent on research and development on Sovaldi and how much Gilead spent on its "Sovaldi-related research costs since the 2012 buyout.

So US tax dollars funded the primary research for Sovaldi which in turn led to the recipients of those tax dollars going on to patent the drug, and form a company which they sold for $11.2 billion. And why is it that nothing in the rules governing tax dollar funded research provides any quid pro quo to benefit the taxpayers putting up the initial seed monies?
W.A. Spitzer (Faywood)
The story is far more complicated than what you have presented. The key structural feature of Sovaldi is a 2-fluoro riboside attached to a nucleoside base. This key structural element was originally synthesized by Jack Fox at Sloan Kettering. It did not have the hoped for anti-cancer activity, but did have interesting activity against Herpes virus. It was farmed out and purchased by Bristol. Lilly which lost out in the bid process, synthesized a similar 2,2-difluoro riboside instead, which ironically did not have anti-viral activity, but proved to have significant anti-cancer activity and became the drug Gemcitbene. The 2 fluoro riboside was dropped by Bristol and was picked up by a small company called Oclassen who in conjunction with NIH tried to develop the drug for Hepatitis B. Initial clinical results were promising and Lilly purchased a share of the drug. The second clinical trial proved a disaster and 5 people died - 1993 I believe. Further development of the drug was dropped. The drug Sovaldi is a structural modification of that drug, hopefully with the understanding of what caused the fatal toxicity. So you see the discovery and development of the drug was far more complicated than you suggest, and a great deal of pharma money and a significant amount of research had already been invested before it reached Schinazi.
And I sure hope the toxicity has been very carefully evaluated.
W.A. Spitzer (Faywood)
And I should also have mentioned that the synthesis of the drug is complicated. It is not something I would trust to someone not approved by the FDA.
LSB (usa)
mediaone is correct that this is how many drugs are developed today. My partner is a medical researcher at an academic institute. His funding comes from big pharma, individual donors, and the NIH. It may come as a surprise, but even within academia, there is still big pharma money.
Anyway, as mediaone said above, if a lab develops a promising compound or technology, they form a tiny company around the compound/tech to support its development, get investors to fund further rounds of trials, research, or whatever is needed. At any point in the life of that tiny company, either the entire company or only the compound or technology they developed can be bought by big pharma. Sometimes, big pharma will develop it into a drug, sometimes they will apply it to a different disease than the compound was initially developed to treat, and sometimes they'll just sit on it.
Meenal Mamdani (Quincy, IL 62301)
US pharma companies exaggerate the fears of fake drugs because they would rather have the patient buy within US.
Also, the idea that importation of drugs will be a disincentive for pharma companies to engage in research to find new drugs is also overblown. The pharma companies' profits are the highest in any industry and most of the cost of bringing the drug to the market is small compared to the advertising and marketing gimmicks that are used by the drug makers to persuade patients and doctors to use the drug. So the pharma companies will continue their research but now they will not make usurious profits, that's all.
Anne Clark (Chester NJ)
Try googling "highest profit margin industries". Pharma won't be on the list. You'll find accountants, lawyers, doctors, dentists, real estate,... Amazing what information you can find on the internet to become better informed.
Roberta (Winter)
This article demonstrates how citizens can take control of their healthcare by using global resources. India already produces much of the generic drugs for the US. Yes, it is about using our combined consumer power to create a different pricing floor, which will ultimately force either the drug companies or Congress to wake up and realize you can't charge Americans so much more than they are getting from other nations. Of course, the nations who pay less for scripts have national healthcare systems. Price transparency is an important step to healthcare reform.
carl trygstad (california)
The cost of developing a new drug and showing it is effective and safe is over 1 Billion dollars. Only one or two of about 100 new chemical entities gets all the way to approval and the market. Gilead paid the developer over 10 Billion for sofosbuvir. The cost of a blockbuster drug has to pay for the development of all the failures. I do not defend the current system but also the US needs an overhaul of the entire health care system. We should start with a "Medicare for all" plan. If you want more than the basics you would be free to buy up with a private insurance company.
Majortrout (Montreal)
Yes, it may be true that developing a new drug costs a billion dollars, but when was the last time a drug company lost money! Everything in the US is all about making money. Hospitals, health insurance, and drugs are all money-related industries that make lots of money!
TH (Hawaii)
Ten billion dollars divided by $85,000 a treatment yields only 117,647 treatments. There are an estimated 3 million people int he US with active Hep C. The rest is profit. The US government could have bought the patent and treated every Hep C patient in the country for less than the taxpayers will eventually spend. Then we could have given out the drug for the cost of production in poor countries yielding huge good will.
brian (egmont key)
how much of that 1 billion does the CEO receive?
paulie (earth)
Drug manufacturing should be nationalised. The drug companies would like you to think that they do the research but in fact most of it is done by universities and government programs. It is time to get business out of health care. It should have never been involved
W.A. Spitzer (Faywood)
"The drug companies would like you to think that they do the research but in fact most of it is done by universities and government programs."....This is completely false. There is a huge difference between basic research done by universities and the government, and the applied research carried out by the pharmaceutical industry. Both basic and applied research are essential for the discovery and development of a drug. Except in very rare cases the universities and the government do not have the research capabilities, expertise, or facilities necessary to convert their research to a functional drug.
TH (Hawaii)
How many of the people wearing lab coats would refuse to work for a government owned pharma company? The front office suits and ad people we can do without. More dollars are being spent on advertising than research. Cut out the ads and the costs go way down.
W.A. Spitzer (Faywood)
TH - Most of my colleagues in research would be happy to work for a government run pharma if the pay was sufficient to cover their home mortgage, car payments, and their kids college tuition. While I agree that drugs should not be advertised directly to the public I would like to see your evidence that more is spent on advertising than research. Do you have a valid reference?
What others think (Toronto)
Pricing theory is a curious thing. Successful pricing in a for-profit environment is NEVER set based on cost recovery. Gilead is not pricing to replace their development cost - that's a drug industry hoax.

They've set at price level deemed to be what the "market will bear". After all, what would you be willing to pay me if I could guarantee that I will save your life?

Imagine casualty rates of the 1st and 2nd world war if sulfa and penicillin were priced at $1,000 per pill? Really?

Gilead and their ilk are playing a dangerous game. Patents are a legal construct granted by governments. There's another legal concept called expropriation - now there's a concept.
W.A. Spitzer (Faywood)
Good question. What would you pay to save your life? And remember if the drug company had not already discovered and developed the drug, you could not buy it no matter how much you would be willing to pay.
Bob (Portland)
“It’s a very disruptive innovation that could change the way we think about medicines’ access,” he said. “If you can buy medicines online that aren’t approved in your own country, then what is the role of the regulator? The government doesn’t approve it — so what?”

So what? So people die for the sake of profit? Who and what do pharmaceutical companies really work for? And are they really so poor?
mike (NYC)
WHY are pharma companies' stocks among the hottest in the stock market--with big profits for those who buy them? BIG PROFITS!
W.A. Spitzer (Faywood)
"The government doesn’t approve it — so what?”.....So what? In the specific case of the Gilead drug, it happens to be rather difficult to synthesize. I would be very careful buying it from a source that was not FDA approved. Just remember, if you think drugs companies are greedy, how about all the charlatans out their who are willing to take your money...and how do you know what you are buying, is what they say it is?
Ernest (St. Augustine)
To me, a large part of the price imbalance in the US is the hours upon hours of TV commercials that we are forced to watch for products that we can't go out and buy.
mike (NYC)
Yes. The cost of all that advertising should not be allowed as a tax deduction.

But it is now, and greatly increases the price of the meds.
Easy Goer (Louisiana)
I remember when prescription drug advertising on television was illegal; and the rightly.

Then along comes Big Pharma with lobbyists and a monster size war chest (it makes the NRA's look like pocket change).

I know I left a long manifesto of my situation already, but this is wrong. No way around it, and shame on Big Pharma.

By the way, after I lost my insurance in 2015 (not 2016), my primary doctor, who I have seen for the 28 years I lived in NYC saw me monthly pro bono (free) for 18+ months after I lost my health insurance. He is what is known as a **concierge doctor; now on Park Avenue. A man who I respect and admire; I also call him my friend.

**This means a doctor who charges a fee for his services besides insurance. One may think this sounds like greed, but I assure you it is not. It simply allows him to treat his patients "the old fashioned way"; something Big Pharma ruined.

Because of our broken healthcare system, his concierge service allows him to do things like what he did for me. It is an exception, but virtually unheard of in the medical community. I like him so much.
Lee (Virginia)
Gotta love the TV ad for the 'opioid induced constipation' drug. Now big pharm is capitalizing on the opioid epidemic.
lester ostroy (Redondo Beach, CA)
As the article points out, there are reasons for misgivings about this sort of gambit. It could choke off the supply of this wonder medicine to poor countries and also, aren't the developers of this miraculous medicine entitled to some big rewards?
Brian Nienhaus (Graham NC)
"If you can buy medicines online that aren’t approved in your own country, then what is the role of the regulator?"

Combined with modern intellectual property law, Its role today is to create rent. In the US, if these laws are not changed they will create more Presiident Trumps.
W.A. Spitzer (Faywood)
So when you buy a drug that isn't FDA approved, how do you know what it is?
some-dude (California)
A web search will show you sales of fake pharmaceuticals through US pharmacies.

And you can change the word "pharmaceuticals" to "designer clothes watches and accessories"and many more things.

The profit incentive works in many destructive ways (in case you have been living in bubble for 20 years).
Sarah O'Leary (Dallas, Texas)
This is GENIUS. Gilead is fine to see those in India live while Americans die. How their leadership sleeps at night is beyond me.

As a consumer healthcare expert, I've been asked by the media numerous times what I would recommend if one of our clients, all whom have assets, contracted Hep C. "Get packed, grab a flight to India. Book yourself into a nice hotel for your med-cation. Get the pill a day 12-week cure from a local doctor. Higher a guide and go sightseeing."

I applaud the Tasmanian Hep C Buyer's Club. If they need volunteers in the U.S., count me in!
hlk (long island)
well said
Umm..excuse me (MA)
In the meantime - pharma companies stop discounting life saving meds to poor countries because of medical tourism.
Brian (MD)
The Veteran's Administration hospitals will treat eligible veterans for free.
Denise (Brooklyn, NY)
Interesting story that highlights some wrenching problems in the world of pharmaceuticals access. I'm certainly happy that individuals who otherwise would be in dire straits are getting the help they need.

However...Jefferys says he doesn't want to profit from people's sickness; then why is he charging 20% of the drug fee for his services? Maybe I'm missing something, but that seems a bit rich for simply acting as a conduit to the suppliers in India. Does this include the shipping charges from India? The article gives no clue as to how many "customers" Jefferys has.
Troy M. (Detroit)
In fact, he's charging far more than 20%. The generic versions of these Gilead drugs made by reliable suppliers in India can be purchased in any pharmacy in India for $400-$500. He charges patients $1,000 fee. So unless it costs him and his middle man, more than $500-$600 to simply ship the meds from India to the U.S. (or elsewhere), he's profiting far more handsomely in this enterprise of his.
Andy (Paris)
Might sound rich to you, but you're entirely free to buy from any Indian pharmacy you choose. Will you get bona fide Hep C drugs or something else? Personally I'm not sure I'd take that chance, given the choice.
He doesn't say his fee includes shipping but 1) he says he'll waive the cost if requested and 2) the Indian supplier ships the order direct to the customer.
I suspect running a buyers' club doesn't take much more skill or time than recruiting and qualifying trusted suppliers. He's got that settled so he could easily hand over the reins to a trusted confederate and go fishing if he didn't care about the money. The tell is Jeffreys notes he will continue to operate the buyers' club "as long as people need his help" rather than go fishing. Sounds lucrative enough to me.
Lizbeth (NY)
He said the fee is optional:
"Jefferys asks for a $200 fee for his service, but it’s optional. “I don’t want to profit from people’s sickness. There’s enough of that going on already, so I will remove my fee if you ask,” his website says."
Dr. Dave (Princeton)
Remember: companies in the healthcare business are not in it for YOUR health. This includes insurance as well as pharma. For many years, there was a snarky biotech soap opera called "All My Clones" put out by BioWorld that documented much of this world: an industry that does well and occasionally does good.
W.A. Spitzer (Faywood)
"Remember: companies in the healthcare business are not in it for YOUR health."....Does that include hospitals and MDs?
Ted Morton (Ann Arbor)
Was there ever a more fitting story to underline how important health care is for everyone? Nothing is more important that health care. Yet Republican Senators plan to vote this week to
A. Roll back all the protections that the ACA provides from all 320 million people living in the USA
B. Use the savings to fund a tax cut for the rich
C. Introduced some half-assed legislation that was cooked up in a couple of weeks by the McConnell gang that weakens the protections provided by the ACA so much that prices will rise AND many basic things like maternity will not be covered
D. Cause between 23 and 32 million people to lose health care due to it becoming unaffordable for them.
Anybody who vote for these psychopaths needs their head examining, problem is that they may not be covered for mental health after the bill is passed.
Jesus Wept! He would if he saw what the GoP is up to; now would be a good time for him to return, chapter 3 of the Bible (kindle Edition) would tell of him kicking the money lenders and Greed over People party from the temple of Congress. If there is a hell, McConnell, Ryan, and Trump will qualify for admission if they pass this terrible bill.
Single payer can't come soon enough.
avanfelix (nyc)
comment "In 2010 there was no cure" not true.
Patrick Asahiyama (Japan)
The trillion-plus dollars the U.S. has spent so far on the War About Nothing in Iraq and its aftermath would have funded the development of lots of life-saving drugs instead.
anianiau (Honolulu, HI)
The trouble with this suggestion is that at present, even if the government were to fully fund the research, nothing prevents the drug company executives from charging what they please for profit and extra profit.
Name (<br/>)
Why are the laws of nations set up to make criminals of citizens, over and over again? It is not for our own good or the good of a civil society that we are forbidden from buying medications or priced out of buying them. How long until the next open revolt against governments - supposed democracies - in rich nations?
Oh (Please)
The cruel and mindless pursuit of profit at any cost to human life is itself a disease of the mind.

Its hard not to draw a line between stories like this and the healthcare debate in the US. The problem is the 'for-profit' health care industry.

So long as health care companies, individual practitioners, and drug companies are primarily interested in maximizing profit by exploiting the distress of the sick, and can flood US political elections with this blood money to corrupt the legislative process, how can health care reform ever be affordable?
W.A. Spitzer (Faywood)
Suppose you have Hep C. Without an effective treatment you will eventually die from the disease. Do you know how to discover and develop a drug for Hep C? Perhaps you should be careful trashing people who are doing something that will save your life; something you cannot do.
Ian Maitland (Wayzata)
Oh Please.

Without drug companies that are primarily interested in maximizing profit by exploiting the distress of the sick, there would be no cure for Hepatitis C!
some-dude (California)
Total profit from the development of space travel, landing a man on the moon, rovers on Mars, pictures of other planets, was ZERO.

Clearly the brightest scientists and engineers only do things for the profit.
Rolfe (Shaker Heights Ohio)
Democrats have suggested that we negotiate with drug companies. This would be a good place to start, actually. I would think that selling more medications for somewhat less money would make sense for all parties. Sigh.
Sagrilarus (Annapolis, MD)
I'll note that President Trump said the same thing when he was campaigning. Seems to me that between the two of them (Democrats and President) this should be a done deal.

Right?
johnpakala (jersey city, nj)
it turns out that "American exceptionalism" Does exist, not that I didnt already know it.
and congressional republicans, urged on by a minority president, are determined to make us more exceptional and at the same time prove that American democracy is on life-support by passing a law with a 17% approval rate...A Twofer!
we need single-payer.
Cathy (Hopewell Junction)
The problem is rent-taking in America. We need a drug to cover it's own development, regulatory, and marketing costs, but also to cover the cost of failures of other drugs, and the payback investors and corporate officers demand.

That is a lot of burden and overhead to toss onto a medication - and mostly it has to be picked up in the American market. Other markets are regulated, or too poor to contribute.

The solution might be to fund development publicly and limit cost and profit margins. Or to give regulatory relief to cover lawsuits if drug makers eliminate advertising new drugs and carefully track and report adverse reactions.

The solution is not to have unregulated buyers clubs forced into existence to help desperate people get a medication that exists just out of their reach. In the wild west of free market capitalism, there are a lot of people caught in the crossfire between gunslingers.
Girish Malhotra (Pepper Pike, OH)
Cathy: Many of the drugs that are being sold in the United States are developed in our laboratories and universities. Pharma companies have polished them and and gotten approval but makes them at the highest price our system will allow them to sustain. With the properly priced dugs and the number of population needing drugs, if they were priced to be affordable, instead of 10 million taking the drugs may be 50 million would take them. The monies made would be much more than what they are making now.

But greed and short term profit is more important than sustained profits. Killing the golden goose is better than sustained supply of eggs.

Human creativity and ingenious will do whatever is necessary to extend life. I or you or for that matter everyone does that every day. Let there be life. Each human is child of a mother and is no different from us.
Martin (Brussels, Belgium)
Gilead states on its website for the year 2016 sales of 30.4 billion $. Net income before tax of 17.1 billion $ and net income after tax of 13.5 billion $. Research and development expenses during the same period were 4.3 billion $. The enormous income and profit margins out of proportion with research budgets are clearly in relation with the excessive price of the drug that severely limit access to live-saving medication for many patients. In many countries reimbursements are only granted in case of severe disease or development of cirrhosis. This corresponds to the paradoxical situations that carriers of HCV have to wait that the virus has already created potentially irreversible damage to the liver before the treatment is administered. This is clearly both a public health issue and ethical problem that has to be addressed.
Andy (Paris)
"Money to spend on new drugs" is a red herring. The US pharmaceutical industry spends more on marketing than R&D. It probably also spends more on share buy backs. Neither of those activities put new drugs into the pipeline.
Rent taking through exhorbitant US drug prices is ONLY about executive compensation plans. Mylan CEO H Bresch's epi pen price hike is only the most reported example of gorging by sociopaths.
Michael Woodhead (Sydney, Australia)
A course of new Hep C antivirals now costs as little as $6.20 in Australia ($38 for general patients) since they were listed on the Pharmaceutical Benefits Scheme in March 2016. Not sure why any Australian would be paying $1000 for antivirals when they can be prescribed at such low cost by a general practitioner.
Cod (MA)
Good for Australians! Not here in the US though. This is VERY important work that Jeffreys has done. This information is life saving for many.
Bernie (WV)
Your just fortunate that is the way in Australia. Unfortionatly that's not the situation in other countries, especially in the US. It's all about the almighty dollar. If your desperate enough then you will sell your soul and they know it! Greg is one of those people who reached out to help others from his experience of faceing his own mortality. These are the Angels on Earth!
paul (CA)
This is a case that happened in 2014, which is considerably earlier in the era of Hep C treatment (the new medicines were just getting adopted). I also wonder why the author picked an example that is no longer relevant as these drugs are now not a problem if you are correct. Why not pick a place where getting the drugs is still difficulty and shouldn't be. I'd be interested in more stories from the USA; there must be examples of people caught in the cracks.