Claude Cloquin, hepatitis C.

Claude Cloquin was a bear of a man, big red beard, huge appetites, loved food, and women, and whiskey. French, of course, but he belonged in Alaska.

It was a little surprising to meet him in Dhaka, where we fiddled with cholera for a year, neither of us making much headway. He originally went to Bangla Desh to vaccinate for smallpox. He’d done his best work in Somalia, a “ring vaccinator.” They’d isolate a case, treat it, and vaccinate everybody in a 2 km radius. Earlier, he’d carried the live attenuated virus into the heart of the Congo, just when and where SIV made the jump to HIV. Some people blamed that on Claude’s group, with their Green Monkey kiney cell cultures the live vaccine required. What else did the monkeys have, that was injected as well? These unintended consequences were plausible, but it was just an urban legend, they finally said.

I met him in 1982. He’d come to vaccinate the villages near Barisal, a pretty good sized town near the mouth of the Ganges, after Rahima Banu got the disease in 1975. She lived, they encircled it, and that was that. Only humans get smallpox, and after that, they didn’t. Where else was a smallpox man to go?…Next! Cholera. He stayed.

In the 50s and 60s, about 2 million people died of smallpox every year. Then…pfffft! It was over.

From wiki:

In 1975, two-year-old Rahima Banu contracted last known case of naturally-occurring variola major Smallpox.

That was about as cool as medical cowboys could get. I wanted to be on that team.

Cholera was tougher, no good vaccine then or now. Grants were tightening during Reagan’s time, as taxes dropped along with NIH funding. It seemed like a good time to go make money instead.

Came home, wound up in Birmingham, treating hepatitis, various kinds- usually alcohol, or hepatitis B or autoimmune hepatitis, or hepatitis A if you ate the wrong raw oysters.

And an odd one, Non A, non B hepatitis, whatever the hell that was.

It turned out the NANB patients didn’t get very sick, rarely got jaundiced, usually didn’t know they had the disease until late in the game. It was transmitted by shared needles for the most part. Many of the '60s and '70s kids had some wild hair, so sharing wasn’t rare. Those same kids were generous with their blood donations. So if I had a GI bleeder, there was a 7% chance I’d give him NANB hepatitis with each blood transfusion. That changed after Houghton’s group isolated the virus in 1987, renamed it Hepatitis C. Blood transfusion hasn’t transmitted hepatitis C since 1992.

Antiviral treatments arrived in the late 90s, lousy, for the most part, with cure rates in the 30-40% range, many toxicities, dose limiting side effects. It was something, but not much.

Unless they drank a great deal, cirrhosis wouldn’t develop for 30 years- the disease just smolders. Not treating them wasn’t the worst option. I’d give them a run of the miserable injections and pills. If they failed, tell them to come back when new treatments became available.

Now they are, and here they come.

I saw 5 in a row today, all with relatively quiet hepatitis C, all apparently eligible for the astonishingly expensive 3 month treatment. One pill per day, no real side effects, about $100,000. Apparently cures 100%, or nearly.

The drug companies’ usurious rates caught the medical insurers’ actuaries with their pants down, so they stall and postpone, and refuse treatment for the not sick yet patients (the ones I most want to treat- easy, long term survivors), trying to run out the clock on the patent, get the patients to die of something else, or wait until they get cirrhotic to treat them. That last bit is like cleaning up the luncheonette after a bomb went off.

It’s a budget buster, sure enough. But by and by one of Dennis’ cousins will bring a class action case, then it’ll get easier.

I think I am seeing the end of an epidemic- one that only breached our consciousness around the time I got into practice. I’m pretty sure I’ll treat the last of them before I retire.

A couple of my partners don’t like to treat hepatitis C…some blame can be ascribed to the patients, I guess. But the Irish believe in recklessness to the depths of our souls. They could be my cousins, who’s to judge?

Besides, to cure a disease is no small thing.

Not as cool as Claude…but not bad.

Tough thing, saving lives on a budget while encouraging research at the same time. But the Capitalist notion of charging whatever the traffic will bear seems inappropriate if people will die so that commercial profits can be maximized. What’s the best path?

Thanks for the post. Question about the cost of treatment. Compared to the lifetime medical costs associated with treating hep C, isn’t $100,000 a pretty good deal for insurers?

I love your writing. So much more interesting that most of the stuff in the NEJM.

I do have a slightly different take on the cost of these medications. I do know some of the people in the company that created these life changing medications. I recently sat on a medical advisory board with some members of this company discussing out of the box ways to approach some of these rare disease. As Bob says, compare this to the lifelong cost of Hepatitis C and the cost to humanity of this vile disease. I know that I can spend well over $100,000 on a single cirrhotic, variceal bleeding coagulopathic Hep C patient in a single ICU stay. It is an ugly disease, as you have so eloquently expressed.

I am not aware of any government driven health systems that have been more successful bringing the best and brightest talent to attack this disease, and in effect bring to the realm of possibility of eradicating this disease from the face of the earth. I have worked on the other side, writing and receiving government grants. Expectations are not as high on the government side. Waste 10 million dollars on a poorly designed experiment… Nobody loses their job, it is not their money.

Gilead has spent billions in research finding cures for politically unpopular or rare orphan diseases like Hep C, HIV and Pulmonary arterial hypertension, as well as other diseases. They continue to strive to find cures for rare and debilitating diseases that others have little interest in. They use their money much more efficiently than the NIH or any other government driven research, because every dollar spent is precious and results are expected.

These drugs cost a lot of money to develop, even more money to get through FDA approval, but they change lives, and cure diseases. Interestingly, for many of these medications, the world is more of a benefactor than our own US citizens. These medications are often sold pennies on the dollar to non-US governments and medical industry, while US citizens and insureds pay near retail. Interestingly, the easiest patients that I have to get these medications, are the completely unfunded. This industry has an amazing patient assistance program, at least for the products I use. I can have a completely unfunded patient on drug with a phone call. Now try to work through some of the insurance companies, that can be a real fight.

Most research and development of medications in the world is being funded by the private sector. We can stifle that with eminent domain, or other socialist pressure. Probably hold prices down at some point. But I would sure love to see more cures for horrific diseases. MS, Alzheimers, Lung Cancer, Pulmonary Fibrosis… I would not hold my breath waiting for any government agency to cure those diseases. Sorry, too long, and probably hot section material. But I do enjoy your writing.

Bob, and Chuck have posted the relevant responses, from a public health perspective, and from the drug companies’ point of view.

Mine is different, slugging it out with the insurers requires a good bit of time and effort. I whine about the cost to me and my staff.

My main instructor in medical economics, Jim Knollenberg, mentioned to me, while I was whining about lousy pay rates, and further looming pay cuts all the while smoking his excellent cigars, drinking fine wine in Duluth…forget exactly how he said it, imagine that, but it went something like this- “If you are still willing to do the work, they must not have found the bottom yet.”

Ouch. We never look at medicine in the cold light of economic reality, not really.There’s still a disproportionate amount of money in it.

I’ll post about Fleming later. His approach to penicillin was much different, as were the times.

I’d better get to work.

From the taped 1971 conversation between Nixon and Ehrlichman:

Ehrlichman: “Edgar Kaiser is running his Permanente deal for profit. And the reason that he can … the reason he can do it … I had Edgar Kaiser come in … talk to me about this and I went into it in some depth. All the incentives are toward less medical care, because …”

President Nixon: [Unclear.]

Ehrlichman: “… the less care they give them, the more money they make.”

President Nixon: “Fine.” [Unclear.]

Ehrlichman: [Unclear] “… and the incentives run the right way.”

President Nixon: “Not bad.”

https://en.wikisource.org/wiki/Transcript_of_taped_conversation_between_President_Richard_Nixon_and_John_D.Ehrlichman%281971%29_that_led_to_the_HMO_act_of_1973:

I need to figure out how to make and post without any content and have COPA’s superstars JuanK, Bob, Russell, Charles and Mark respond to my ‘post’ [:D] [:P]

Oops!

I edited to correct a misspelling, and somehow erased the whole thing.

I wonder if there’s a way to get that back.

It’s Dr. McG’s fine reputation as a writer at work. Hey, Picasso could have offered a blank canvas as a “painting” and it would hang in the Louvre.

The beauty of email forwarding of posts… Here it is Doc. Nice thread and responses.

Claude Coquin was a bear of a man, big red beard, huge appetites, loved food, and women, and whiskey. He belonged in Alaska.

It was a little surprising to meet him in Dhaka, where we fiddled with cholera for a year, neither of us making too much progress. He originally went to Bangla Desh vaccinate for smallpox. He’d done his best work in Somalia, a ring vaccinator. They’d isolate a case, treat it, and vaccinate everybody in a 2 km radius. Earlier, he’d carried the live attenuated virus into the heart of the Congo, just when and where SIV made the jump to HIV. Some people blamed that on Claude’s group, with their Green Monkey cell cultures and live vaccine. Urban legend, they say.

Now, 1982, he’d come to vaccinate the villages near Barisal, a pretty good sized town near the mouth of the Ganges, after Rahima Banu got the disease. She lived, they encircled it, and that was that. Only humans get smallpox, and after that, they didn’t.

In the 50s and 60s, about 2 million people died of smallpox every year. Then…pfffft! It was over.

From wiki:

In 1975, two-year-old Rahima Banu contracted last known case of naturally-occurring variola major Smallpox.So that was about as

That was about as cool as medical cowboys could get. I wanted to be on that team.

Cholera was tougher, grants were tightening during Reagan’s time, taxes dropped along with NIH funding, so it seemed like a good time to make money instead.

Came home and ultimately wound up in Birmingham, treating hepatitis, various kinds- usually alcohol, or hepatitis B or autoimmune hepatitis, or hepatitis A if you ate the wrong raw oysters.

And an odd one, Non A, non B hepatitis, whatever the hell that was.

I turned out the NANB patients didn’t get very sick, rarely got jaundiced, usually didn’t know they had the disease until late in the game. It was transmitted by shared needles for the most part. Many of the '60s and '70s kids had had a wild hair, so it wasn’t rare, and those same kids were generous in their blood donations, so if I had a GI bleeder, there was a 7% chance I’d give him NANB hepatitis with each blood transfusion. This changed after Houghton’s group isolated the virus, renamed it Hepatitis C, Blood transfusion hasn’t transmitted hepatitis C since 1992.

Antiviral treatments arrived in the late 90s, lousy, for the most part, with cure rates in the 30-40% range, and lots of side effects

Unless they drank a great deal, cirrhosis wouldn’t come on for 30 years- it’s a real smoldering disease. So not treating them wasn’t the worst option. I’d give them a run of the miserable injections and pills. If they failed, tell them to come back when new treatments became available.

Now they have, and here they come.

I saw 5 in a row today, all with relatively quiet hepatitis C, all apparently eligible for the astonishingly expensive 3 month treatment. One pill per day, no real side effects, about $100,000. Apparently cures 100%, or nearly.

The drug companies usurious rates caught the medical insurers’ actuaries with their pants down, so they stall and postpone, and refuse treatment for non-sick patients (the ones I most want to treat- easy, long term survivors), trying to run out the clock on the patent, get the patients to die of something else, or wait until they get cirrhotic.

It’s a budget buster, but by and by one of Dennis’ cousins will bring a class action case, then it’ll get easier.

I think I am seeing the end of an epidemic- one that only breached our consciousness around the time I got into practice. I’m pretty sure I’ll treat the last of them before I retire.

A couple of my partners don’t like to treat hepatitis C…some blame can be ascribed to the patients, I guess. But the Irish believe in recklessness to the depths of their souls, they could be my cousins, I can’t pass judgment.

Besides, to cure a disease is no small thing.

Not as cool as Claude…but not bad.

Fixed. Thanks to Dan for his post.

Cheers
Rick

Thank you, Dan.

It’s hard to reconstitute a post, and then all the comments- most of them really good, are left hanging in the breeze, orphans.

$3.8 Trillion annually and growing, according to Forbes. That’s plenty to wet the appetite of any virile Capitalist. IMO the question is whether we are happy that the people who are really making the differences and taking the risks are the ones getting their appropriate piece of that pie. Or is too much going to the clever organizational massagers, marketing manipulators and moneychangers – people who deliver nothing of value to health care, but merely add cost?

This brings to mind a question I have had for some time. Maybe someone here can help me. We all know what bigotry is. Implying negative characteristics based on some preconceived notion about things like skin color, religion, vocation or whatever. What is a good word to use for the reverse of that where we instinctively imply positive characteristics about a whole group because of preconceived notions or maybe just political correctness or current fashion? Here I’m thinking of groups like military, police, firefighters, teachers, or Capitalists. We love to laud these people, but really, not all of them are laudable. Many of them are. Maybe most of them are. But some of them are not. Why should the bad apples get swept into the group and get accolades?

Along these lines, not everything about Capitalism is virtuous. Innovation spurred on by the profit motive is praiseworthy. Competition leading to efficiency is praiseworthy. Consolidation pursued solely to create greater market power so prices and profit margins can be increased is not praiseworthy. EXAMPLE: With the recent acquisition of Target Pharmacies by CVS, the duopoly of CVS and Walgreens now control 51% of the pharma distribution in the U.S. Do we think CVS wanted the Target locations because it would help them be more efficient? I think it is about creating power and market influence which, once created, works in the opposite direction of efficiency. Should we admire that?

So I need a word guy. Sanjay?

I can tell you where the money is not going. It is not going to the people that are directly taking care of Patients. The administrators do not like it when I wave my hands across the vast parking lot in front of our hospital and ask them how many of the people in those cars came to see an administrator or regulator. They are there to see Doctors, nurses therapists etc. There was a time when physician salaries accounted for almost half of health care expenditures. Today, depending on whose data you look at, physician salaries/income account only for 5-8% of healthcare costs (in the US). By the way that is the lowest in the Western world, even our European colleagues account for a higher percentage of total costs. And they should. A good physician can do a lot of things that an unnecessary CT scan, MRI or other unnecessary procedure or test can do.

The ACO model does some very perverted things to the medical system in the US. It will only get worse. The ACO model disproportionately empowers hospitals and insurance companies (as reflected in the stocks of those entities when the ACO passed). It also has resulted in the hospitals employing and controlling a larger percentage of physicians. When the hospital gets all the money and then writes the paychecks for the physicians, who is the patient advocate? If a physician advocates too much for too many patients, and spends too much money, they will be “adjusted” or fired. I am seeing this perversion among some of my colleagues, and it makes me sick. Physicians are being rewarded for being “efficient.” Read between the lines, not spending money. Read further between the lines. Telling patients that nothing more can be done, when it can. Convincing patients with years of quality life that advanced therapies have nothing to offer, rather encouraging them to seek hospice and palliative care. It is “efficient”, and probably happening in your local neighborhood. Be careful what you ask for.

There is some free money out there, but it involves some uncomfortable concepts like allowing real competition in the system, as well as limiting frivolous medical malpractice lawsuits. Any takers on these concepts from the regulators and legislators?

Steven Brill’s (very long) Time article “The Bitter Pill” was kind of an in-your-face expose of the warped practitioner vs. administrator environment that frustrate you and Dr. Mac. Brill’s later (and somewhat shorter) column “What I Learned from my $190,000 Surgery” really gets into the kind of solutions – competition – you refer to now. It is good stuff.

Unlike most people here, I backed ACA. I did not back it because it improved our health care system, because it did not do that at all. I backed it because it was a major step in the direction of at least DEFINING what the health care policy of the United States is. To a much greater degree than before, ACA defined what care each citizen can get, where they can get that care, and what their options are. But now, defining how the convoluted “system” should be revamped is a completely different subject, one that ACA did not touch at all.

Doc,

Have you had any luck contacting Gilead directly? According to their website, patients can get assistance with meeting their co-pays, as well as no-cost treatment if they have no other insurance options.

http://www.gilead.com/responsibility/us-patient-access/support%20path%20for%20sovaldi%20and%20harvoni

Here is another program to help gain access to several Hep C meds. including Gilead’s:

http://www.hepmag.com/articles/hepatitis_paps_copays_20506.shtml

Support Path™ assists eligible hepatitis C patients in the United States access Sovaldi® (sofosbuvir) or Harvoni® (ledipasvir/sofosbuvir). The program consists of an integrated offering of support services for patients and providers, among them: A call center staffed with associates trained to help patients and their providers with insurance-related needs. Education and support, including a 24/7 nursing support service line. The Sovaldi and Harvoni Co-pay Coupon Programs, which provide co-pay assistance for eligible patients with private insurance who need assistance paying for their out-of-pocket medication costs. Most patients will pay no more than $5 per co-pay. The Support Path Patient Assistance Program will provide Sovaldi and Harvoni at no charge for eligible patients with no other insurance options. To learn more about Support Path for Sovaldi® and Harvoni®, please call 1-855-769-7284, Monday through Friday between 9:00 a.m. and 8:00 p.m. (Eastern Time). - See more at: http://www.gilead.com/responsibility/us-patient-access/support%20path%20for%20sovaldi%20and%20harvoni#sthash.qqjHxM2Z.dpuf

Support Path™ assists eligible hepatitis C patients in the United States access Sovaldi® (sofosbuvir) or Harvoni® (ledipasvir/sofosbuvir). The program consists of an integrated offering of support services for patients and providers, among them: A call center staffed with associates trained to help patients and their providers with insurance-related needs. Education and support, including a 24/7 nursing support service line. The Sovaldi and Harvoni Co-pay Coupon Programs, which provide co-pay assistance for eligible patients with private insurance who need assistance paying for their out-of-pocket medication costs. Most patients will pay no more than $5 per co-pay. The Support Path Patient Assistance Program will provide Sovaldi and Harvoni at no charge for eligible patients with no other insurance options. To learn more about Support Path for Sovaldi® and Harvoni®, please call 1-855-769-7284, Monday through Friday between 9:00 a.m. and 8:00 p.m. (Eastern Time). - See more at: http://www.gilead.com/responsibility/us-patient-access/support%20path%20for%20sovaldi%20and%20harvoni#sthash.qqjHxM2Z.dpuf

Support Path™ assists eligible hepatitis C patients in the United States access Sovaldi® (sofosbuvir) or Harvoni® (ledipasvir/sofosbuvir). The program consists of an integrated offering of support services for patients and providers, among them: A call center staffed with associates trained to help patients and their providers with insurance-related needs. Education and support, including a 24/7 nursing support service line. The Sovaldi and Harvoni Co-pay Coupon Programs, which provide co-pay assistance for eligible patients with private insurance who need assistance paying for their out-of-pocket medication costs. Most patients will pay no more than $5 per co-pay. The Support Path Patient Assistance Program will provide Sovaldi and Harvoni at no charge for eligible patients with no other insurance options. To learn more about Support Path for Sovaldi® and Harvoni®, please call 1-855-769-7284, Monday through Friday between 9:00 a.m. and 8:00 p.m. (Eastern Time). - See more at: http://www.gilead.com/responsibility/us-patient-access/support%20path%20for%20sovaldi%20and%20harvoni#sthash.qqjHxM2Z.dpuf

I have found Gilead very accommodating for uninsured and underinsured patients. As I mentioned in a previous post, the patients that I have the easiest time getting expensive medications for, are the completely unfunded.

A family I know lost a loved one to Hep C. The VA could do nothing for him apparently. I read today in the NY Times that our VA won’t obtain the drug for veterans who need it.

I don’t know where to start to respond to your lamenting the under paid doctor. I suppose its the entire pov that puzzles me.

“When the hospital gets all the money and then writes the paychecks for the physicians, who is the patient advocate?”

Didn’t you negotiate with and agree to be hired by that hospital, when you could remain in private practice. Didn’t you do so partly because they have hospitalists so you’re not expected to do rounds and be on call as much, if at all; so you’re not financially liable for running a business, …?

Why does who is paid affect the doctors allegiance to his patient- why does that change your view of your patient? Seems it could free you up to treat them for their medical needs only instead of also needing them to pay your bills.

On another point, isn’t it doctors ordering those unnecessary images?

*“you” is the generic doctor, not Charles necessarily.