It's Official! Curing Patients Is Bad for Busi... - CLL Support

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It's Official! Curing Patients Is Bad for Business! Milton Packer describes the end result of profit-dominated drug development

AussieNeil profile image
AussieNeilPartnerAdministrator
20 Replies

Sobering reading from Milton Packer in Medscape Today "Pharmaceutical companies are developing new drugs in only two therapeutic areas these days -- cancer and rare diseases. Why? These are the only therapeutic areas where exorbitant pricing is tolerated by payers.

:

Last week, things took a turn for the worse.

According to an article by Tae Kim on CNBC, Goldman Sachs issued a report (by Salveen Richter) that suggested that drug developers might want to think twice about making drugs that were too effective. Richter's report, entitled "The Genome Revolution," was issued on April 10 and says:

"The potential to deliver 'one shot cures' is one of the most attractive aspects of gene therapy, genetically-engineered cell therapy and gene editing. However, such treatments offer a very different outlook with regard to recurring revenue versus chronic therapies.... While this proposition carries tremendous value for patients and society, it could represent a challenge for genome medicine developers looking for sustained cash flow."

medpagetoday.com/blogs/revo...

mariemascio just posted about unjustifiable price increases occurring with Ibrutinib/Imbruvica, with the referenced Washington Post article well worth reading. If you think market competition is the answer, the Washington Post referenced example of Gleevec/Imatinib sadly counters that: washingtonpost.com/business... The history of Gleevec is particularly relevant to us, as this was the first instance of a custom developed monoclonal antibody (like Rituxan) achieving success in changing the life expectancy of patients with Chronic Myelogenous Leukaemia (CML) from a 5 - 6 years to having a near normal life expectancy - but at an increasing cost: healthunlocked.com/cllsuppo....

And just yesterday, Chris/CLLCanada posted about the FDA moving to reign in drug maker's abuse of the Orphan Drug Law: healthunlocked.com/cllsuppo...

Without that law, pharmaceutical companies wouldn't be interested in investing in research to tackle illnesses such as CLL. Shareholders likewise would not be prepared to invest in companies that didn't explore all possible legal means to maximise profits...

How do we get the balance right?

Neil

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AussieNeil
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20 Replies
MsChief profile image
MsChief

Long suspected, now verified. Thank you Neil.

shazie profile image
shazie

Hey Neil. I think in one of our old discussions I mentioned that there is no money in cure. I didn’t mean bad by saying that simply stating the fact.

Unethical and shameful.

Sucee profile image
Sucee

For many years I had refused to believe this. Very sobering, and sickening.

Thanks, Neil.

Name-1 profile image
Name-1

It is truly! Thank You Neil!

G1llHa1n profile image
G1llHa1n

Why am I not surprised?

Jm954 profile image
Jm954Administrator

As others have said, this is nothing short of shameful and makes us feel justifiably angry.

The NHS has prices agreed prior to NICE authorisation to prescribe. Hopefully the NHS will stand firm as there is no reason for these price increases. Changing the dosage sizes may consititute a 'new' product but the NHS will negotiate hard.

Much more difficult to cap costs in an insurance based health system.

NooNoo14 profile image
NooNoo14

How do these people sleep at night? Makes me so angry.

Netty

in reply toNooNoo14

I guess they stay awake and count their blood money.

mariemascio profile image
mariemascio in reply toNooNoo14

My retirement 401k tracks the S&P 500. Likely I'm invested in some of these companies. Individual CEOs make heartless decisions . . . but if they choose otherwise the investment dollars will turn on a dime and flow elsewhere.

I think the problem is relying too much on private capital for medical breakthroughs. But without a huge profit motive, would anyone develop these drugs? The only competitor is governments and I don't know that we have the political will for that right now.

Robgump profile image
Robgump

yep, follow the money. (Although I thought it was primarily here in the US.) The following article : cancerletter.com/articles/2... (references attached in this article) mentions a study was done (by vi3c.org/what-we-do/) on lower doses of Imbruvica and it's efficacy. By my calculations a 260mg dose for someone weighing 220lbs could be just as effective in some patients. I believe that there is enough backlash now about "Financial" ills caused by cancer treatment.

“...what counts as a benefit in cancer treatment and how much cost should factor into deliberations are not ethical problems that can be relegated to others. No segment of society is better qualified to address these issues than the oncology community. It is time to confront these issues, lest other confront them for us.”

— Fojo, T; Grady C. Commentary, JNCI 2009: 101(15)

This is why the new pill format came to imbruvica, to bolster profit margins by limiting options for contentious doctors trying to alleviate symptoms due to side effects from using too much.

This is exactly what I was talking about when I said that they hide the results of studies to benefit returns on sales. (anyone else need a pill splitter?)

(listening to "money" Pink Floyd)

Tommays56 profile image
Tommays56

While i like everyone else dislikes whats going on with drug prices I did work at at FDA drug and device maker for 25 years who only did topical topical skin drugs

Also keep in mind your antiperspirant is and OTC Drug that has to follow and astounding amount of regulations the FDA makes

For example my main area was the plant machinery and you cant just buy something made to do something very specific and actual use it

You must go through a painstaking process and if you were to buy 10 of exactly the same thing you would have to do this 10 times and when you done the FDA will try there best to rip apart your work right down to how many minutes it takes the restroom water to reach the correct temperature

Also keep in mind society in general has decided with a few exceptions that it will be really expensive to get the Degrees necessary for the people doing this work not just your doctor

It's all true. The drug companies are not out to cure anybody. They are in it for the huge profits and nothing more. There has to be some kind of cap set on how much these companies can charge for their prescription drugs!! Totally unaffordable at the prices they now charge, and I'm always worried that my prescription drug insurance co. will stop paying for the Inbruvica. If they do, I don't know what I'd have to take in it's place, if anything, and it too would probably be unaffordable or have some terrible side effects. Congress doesn't seem interested in solving the problem for obvious reasons - campaign contributions. They're not interested in us either. We're pretty much on our own.

Ballyhoo77 profile image
Ballyhoo77

That's so sorry to here, but it's the truth. Wishing you and all the very best Neil.

marcyh profile image
marcyh

Sick.

Marcyh

cllady01 profile image
cllady01Former Volunteer

Wow. Thanks for the article, Neil.

While I am not surprised, I am bordering on crying at the actual facts being put out there.

While I am trying to hold on to my untreated status as much for the cost as for the side effects, this sets my mind to hold out for the least expensive and shortest treatment possible--no matter the life saving possibilities.

Please note, I am soon to be 78 and have a long ride--diagnosed 2/28/01. And when I read the article in yesterday's New York Times regarding the lack of elderly patients in cancer trial studies (which we knew) added to this, now in print information, (which we also knew), why would I spend every last penny AND go in debt to live, when the meager amount I have could be used by my family?

Add to all this information, the revealing information we got recently about the Drs. not being informed of the Black Box warning for Cipro (etc)--the powers that be (FDA) supposedly wanted the news to "trickle down". There should not even be such a choice--but the pharmaceutical lobbying has more power than we, the patients. Our lives are only important if we are making lots of money?

Outrage, rather than anger (I always cry when I am really angry and feel I have little leverage to do anything about a situation.

thisishiswife profile image
thisishiswife

This is a "suggestion" by Goldman Sachs what they think drug companies "ought" to do.

Yes pharmas are in it for the money. But they aren't the only ones in the race for cures. Many research facilities funded and/or run by universities and governments all over the world are pursuing treatments and cures. Do you seriously think that every single one of them is trashcanning promising treatments in order to increase patients' misery and need for drugs? What about the participants in studies, are they sworn to secrecy?

mariemascio profile image
mariemascio

Thanks for the links Neil.

There is an opinion piece in the NYT a couple days ago somewhat casting shade on the value of these new therapies "The Problem with Miracle Cures" nytimes.com/2018/04/19/opin...

Now the writer may not be speaking to our community, but rather to patients with more aggressive cancers, but I found his tone frustrating. AND he references the cost of the therapies (although briefly) as a reason to distrust them:

"Much has been written about the promise of these treatments, as well as their staggering costs — many cost several hundred thousand dollars a year. But what strikes me most about them is that, by blurring the line between cure and comfort — and between hope and hopelessness — they have disrupted the fragile equilibrium that we doctors have long taken for granted."

I'm a cancer patient and I don't give a frack about doctors' fragile equilibrium. They get paid high salaries to do a professional job. Every patient must make their own choices with their own circumstances, and I applaud the people who are able to throw the dice for life, and also incidentally advance the cause of science.

I have a bad cold today and feeling grumpy and out of sorts with the world. Should probably stay off the internet!

Take care all.

mariemascio profile image
mariemascio in reply tomariemascio

Oh, and this is what I wrote to the Times in response to the opinion piece:

Every cancer is different, it is not all one disease.

Last year, at age 46, I was diagnosed with a very common indolent leukemia. I am not ready to say "oh well, I have cancer, guess that's it for me." My disease is one of the ones causing all kinds of excitement among the pharma bros - they are developing therapies that take a good wallop at the cancer but require insurers to shell out $150K + per year to keep a patient alive. These companies have no incentive to work on a functional cure . . . as that would impede their ability to attract capital.

I don't know what to think . . . . on the one hand I'm so grateful that my diagnosis may not end in an early grave, mostly because people have gambled their investment dollars on research that led to these therapies. On the other hand, is there no better way to incentivize medical breakthroughs than to risk bankrupting our fragile medical system to line the pockets of the already-rich? There is no free market here.

dwolden profile image
dwolden

This thought has been deeply troubling to me for some time. Oh the revolting reality of for-profit medicine and research. Frightening.

Luckyliss profile image
Luckyliss

Aside from the pornography industry cancer is the biggest money maker on earth-why would they want to cure anyone?

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