I have written many healthcare stories, but never before have I written about my own health. I decided to do so after learning one of my drugs costs nearly $1,000 a pill and just 25 cents to make. What I found was an incredible story of discovery and exploitation. www.propublica.org/article/revl...
Thank you for sharing your story and I wish you the best on your treatment. One has to question the point of medical advances if the tradeoff for patients is financial ruin versus extending life. This is an especially egregious case of system abuse. Shame on the abusers.
I knew before I clicked what this was going to be about. It was a new drug & not first line treatment when my mom was diagnosed in 2005, already it was ridiculously expensive. Thank you for shining an even brighter light on the greed and grift in the U.S. by so many facets of our system. Good luck.
I, too, have multiple myeloma. Reading this story makes my blood boil. I had Carvykti CAR-T treatment in November, and I'm in full remission. Amazing technology.
Yep, CAR-T is my great hope for the future, assuming I’m eligible and it works (for me). 🤞 Great story BTW. Never read up on the drug’s development history, so thanks! Alas, the US health “system” seems to be an object lesson in untrammeled greed. Obscene, by any reasonable standard.
Mine was a lymphoma but CAR-T saved my life when everything else failed. I will be wishing you a smooth treatment and recovery. Hang in there.
We need federal experts protecting us: "[Thalidomide] was never sold in the U.S. thanks to the unwavering objections of a resolute reviewer at the FDA... prompted Congress to require more rigorous safety and efficacy data ... and empower the FDA to monitor the industry more closely."
Wonderful Katie Porter defending the truth: "The drug didn’t get any better. The cancer patients didn’t get any better. You just got better at making money. You just refined your skills at price gouging.”
Powerful article. I am so very sorry about your cancer battle and the absurd cost of this prescription. When I was being treated for uterine cancer, my co-pay for a single pain pill was $100. I could only afford to take one pill on alternating days, rather than the every-four-hours as prescribed.
The gist of this story is that pharmaceutical companies are corrupt and "FOR PROFIT" and will always take profit over curing people.
Yeah, it's called capitalism, you know?
Capitalism is fine, but it’s out of control. The problem now is when a product costs pennies to make, but the markup is so high. Only the wealthiest will be able to survive, and it’s weeding out the middle class and the poor.
As long as there are enough customers willing to pay such a price, in a purely market environment, the company has no reason to change its prices. 🤷♂️
The rich pay it. The poor die. Fuck off
If you don´t like it, change the system. Telling random people on internet to f off doesn´t do that though.
Thanks for the insights about Revlimid pricing. The pricing & greed are obscene. I'm interested since I have MGUS, MM's predecessor condition. It fortunately doesn't often develop into MM, but I try to stay informed. A friend, however, recently died with MM after battling it for 11 years.
Really great writing, David. Wishing you the best.
This was spectacular
Your $$$, or your life. And the execs think they are such savvy businessmen. 🤬
David, thank you for this coverage and please know I am holding giant good thoughts for your health.
And people actually wonder how a Luigi was created.
@nprfreshair.bsky.social @amandahess.bsky.social A Hess talks about prenatal healthcare relying heavily on tech in preventative care (embryonic testing for disabilities). IMO our for profit healthcare focuses on remedies, instead of preventative hc. aHess says disabled babies are often ignored by hc
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There's no way I can read your 3,000-word article. Tell the dipshit designers at Propublica white text on dark background is an egregious design error. The extreme contrast tires the eyes and makes the text look like it's vibrating. That's why no one is reading this important article.
Try using reading (reader) mode. This article explains how to find it in various browsers. It cuts the extras - so black text on white (some allow for different colored backgrounds) and ability to increase text size, etc. www.theverge.com/24206804/rea...
I'm not even going to bother. Thanks for the suggestion though. I'm sure someone will find it useful.
You're welcome. I'm sorry you don't feel it would be useful for some webpages. My aging eyes often appreciate it.
Big Pharma: "Give us all your money or die. It's your choice."
My mom’s a multiple melanoma survivor whose treatments went very well and is now on this 💊. The hoops she must jump thru each month are onerous. Must be taken on specific days so its timely arrival is threatened by the WTF health labyrinth bandit:
numerous calls to Dr to release the script, calls to pharmacy, and back again. Then after the “who’s on second?” circus, a 10-min questionnaire with the pharmacy provider (3rd company). Every. Month.
Oh and it’s radioactive-ish. ☢️ Others shouldn’t touch the box, sorry fedex dude. 📦 Still, grateful she has coverage. Crazy to see its “F U, generics” stalling stance and epic (for investors) price journey 📈 thank u. Protectionist strategery w/o FDA penalty? 🤕 Wow. Hope your prognosis is affirming.🫶🏾
My husband died in 2013, a year and 2 days after his MM diagnosis. He too took revlimid along with another IV chemo drug. He underwent an auto stem cell transplant and 2 rounds of the Uof Ark VDPACE chemo cocktail. I wish you all the best.
@drianweissman.bsky.social
When I was on Revlimid a few years ago my insurer listed it as $21,000 a month. And that was cheap compared to some other meds. The listed price for Ninlaro was about five times as much.
I heard that TKIs, like later iterations of Gleevec for CML are up to $650k PER YEAR. Just crazy. $21k/mo is no joke though. 😳
My insurance covered Revlimid completely, but so many people face enormous copays for their treatment. I moderate an online support group, and the most frequently asked question is, "How can I get help to pay for this?"
The Leukemia and Lymphoma Society has long been a resource, but their copay grants depend on donations. Right now, that fund is closed. And recently they lowered the maximum copay grant to $5K. There are other organizations but they also need funds.
I've been off Revlimid for three years now, still in stringent complete response (AKA "remission"). I know I'm fortunate compared to some. But I also know there's still a sword over my head; not just the disease but the risk of financial impact of relapse and whatever treatment is next.
Best wishes. I hope you continue to stay in remission.
Sounds like we all went into the wrong business
This made me feel sick
Read this article. It's about fasting before chemo. Since no one makes money off people not eating, this data was ignored for years. My friend had cancer, and I told her about this. It worked so well that her doctor set up a testing program of her own. www.technologyreview.com/2019/08/20/5...
It would be great if people could pay per article rather than subscribing.
That's one of my business ideas. If you give me $5, you can access articles behind a paywall for a nickel. I'd pay a nickel to read something, but I don't want to subscribe to it either. The article must have had enough hits that they decided to make money off of it.
Amen!
Paywalled bogus. Fuck off
Also fuck right off yourself.
It used to be free. read this. pmc.ncbi.nlm.nih.gov/articles/PMC...
Fasting before chemo is a legit area of interest just for what it's worth (and yes many people pretend it's a cure instead of a tool which is ...frustrating to say the least). That said most of the focused have been in vitro/animal testing and around breast and skin cancer so still lot of learn.
pmc.ncbi.nlm.nih.gov/articles/PMC... if actually interested in some of the work last decade
That is an old study 2018. Check out this new study. pmc.ncbi.nlm.nih.gov/articles/PMC...
It is an old study, which is why I specifically mentioned 2010s research to allow someone not familiar to get a threshold for when it first started become a potential significant focus 7-8 years ago. Now that said I may have missed something because I only gave it 30 minutes but I also site 1/
checked 23 of the references that has may and potential used most often (nothing wrong with that perse) and again those papers reference....in vitro and animal studies mostly. Until we can compile a large subset of human data this will be mostly concierge/fitted to patient instead of standard 2/
practice and for good reason. Fasting (whether you use the 3 type, 4 type, or 5 type as in that paper (and note not my area so may be more sub classes)) seems an area that carries potentially major benefits but also potentially catastrophic metabolic downfalls depending on the patient. If a fuller3/
read later on makes me realize I missed something significant I will absolutely add here, remove what I have mentioned, and honestly probably adjust my more time limited responses for the future but first time sync impression was basically what past research said 4/4
Thank you for your work on this!!
Excellent reporting. Also, nice nod to @katieporteroc.bsky.social
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Astonishing.
There is a group of medical pirates that do corporate espionage to steal medical recipes and open source them so humans can have access to the medicine if they have limited funds. Based in Canada I believe.
Sorry to hear about your diagnosis. But where you been? This has been going on for 39 years.
David, this story is incredible. Drug companies are evil. Thank you for sharing your journey.
That is, even in the world of greedy American companies, quite shocking.
Australia created the Pharmaceutical Benefits Scheme in 1944 against intense opposition from the medical profession & the pharma industry. Today, a drug like Revlimid costs an Aussie patient $31.60 for 28 tablets. We”ll never allow a healthcare system like the US in Australia.
The us is messed up. Disgusting to me that doctors and pharmaceutical companies can get away with their unethical practices at the expense of human beings.
It becomes more difficult for me every day to respect those who participate in the US system at any level. For most of my life, I've held nurses & doctors in high esteem. Lately, their disinterest in the real sources of their livelihoods and/or witting complicity in the grift borders on the tragic.
I'm an American long resident in France and covered by its great healthcare system. In 2022, with generics entering the market early, France dropped the Revlimid price by 40% to c. 55€ a pill for the highest dose. Interesting that so few people wanted to comment for your piece! Best of luck to you.
This is the kind of story that makes me wonder about Aprepitant/Emend—it’s an antiemetic/antinausea drug usually for Chemo, my insurance will only cover 3 pills at a time. It’s the only thing that works for chronic nausea for me (MCAS allergies) so I have to refill it ASAP twice a week.
The artwork in that image to accompany the article is really stunning!
Fantastic article. Absolutely spot on. I worked in the pharma industry to pay off my student loans. A beginning pharm sales person makes 100k across the board. Oncology base = 200k. I constantly speak out- to no one who will listen. May your health continue. Thank you.
Great article! I didn't know the backstory of Dr. Berenson. He was treating my husband during that time.
But we're paying for the research they say. That's clearly already been done as the drug is on the market. So, in effective, we're prepaying for the development of a host of drugs most of us will never need. 🙄
Eh, we're paying for high salaries for the brass and salespeople.
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They elected anarcho-capitalists. As a thank you, you can pay or die.
This is insane. Pharma sold out on a logarithmic scale
Money over people in healthcare is a sad fact. I’m not sure how we change that trajectory but it needs to happen.
Startling article about huge price increases for a life-saving drug, to prop up a failing company and enrich the executives. My heart goes out to the journalist who has cancer. Great article, well worth reading.
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Great article! I've been on generic since it became available, still charging my insurance just under $1K a capsule. (I pay $300 a year total. Gladly too young for Medicare.) Healthcare finance is seriously screwed up in this country. Profiteering at the expense of the rest of us.
Thank you for sharing, this was eye opening. I am a breast cancer survivor & my oncologist has prescribed Prolia shots every 6 months. My insurance company is billed almost $23,000/per shot. I eagerly await more competition in this space & hopefully some regulations to reduce price gouging.
Powerful story, David. Thank you for your great reporting. It’s astonishing the level of greed involved in health care. Best wishes to you.
Fair is fair…gouging is gouging…time for the actual costs like you are showing here.
My drug cost was $9K a month. I had a charity help with copays. Now I use Mark Cuban's Cost Plus Drugs. 2 months with delivery charges are $45
I’ve been in remission for 4 years with Metastatic breast cancer. People misunderstand remission and confuse it with cured. The cost of the drug that keep me alive is 12k a month. Thanks for writing this piece
Best wishes for continued remission. Stay strong.
Thank you so much for writing this and good luck with your ongoing treatment
Good grief. We have to start regulating companies better. This toxic capitalism we live under cannot be allowed to continue.
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Rough calculations of 38,000 patients x 365 pills per year x $.25/pill = 3.5 million dollars per year to make the drug. The revenues are billions per year or 1000 times the cost of production.
Terrific and important story--thank you!
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What an insane pharmaceutical story. I wish all the best.
Tremendous story, David. So personal. So well done. Thank you for the time and the effort; This kind of transparency and disclosure is crucial in shining a bright light upon how monopolies can hold our health and wellness (and the systems that maintain them) hostage.
Health should not be filtered through capitalism.
Heartbreaking read. Thanks for writing and good luck on your journey.
Thank you for writing this piece, David. I was diagnosed with myelodysplastic syndrome (MDS) at the ripe old age of 35 and an oncologist at Fred Hutch insisted I start Revlimid immediately. I’d researched him before our appointment and found Celgene had paid him nearly $400k that year.
My dad had MDS & was told he had 6mos-2 yrs. to live. He was given Revlimid at no cost (I assume they were still testing it?) & survived 7 yrs. While I’m grateful for that time, it’s unconscionable they jacked the price so CEOs & stockholders could make $$$.
Oh wow! I’m so glad you had that extra time with your dad. As my disease has progressed, I have taken Revlimid and it cost an ungodly amount of money that I didn’t have so I qualified for Celgene’s assistance. It didn’t work for me and I didn’t continue to take it more than a month or two.
OMG...unbelievable!
David-I took care of a MM patient for almost two decades and had a lot of experience with Thalidomide/Revlimid/ Pomolidomide and cytogenetics.Spent years talking with patients, Physicians and the IMF and MMRF as well as attended multiple meetings.There are entities that help with the cost of drugs.
Wow. That’s horrifying.
David, did you see this? www.nytimes.com/2025/06/03/h...
Yes. There is rightfully a lot of excitement around CAR-T, but we have a ways to go before we know if this will be a cure and for which group of patients.
Outstanding article. It reads like a mystery novel. Thank you for your work and diligence, and I hope and pray things get better for you in the coming years.
Prescription benefit managers also benefit when drug prices go up.
So much corruption at the expense of human lives. Disgusting!
So I looked into the price of this drug in Canada, and the generic currently costs 85 CAD for 10 mg capsules. Assuming 30 capsules a month, that comes out to 2550 CAD a month, 30600 CAD/21987 USD a year, a saving of 186,200.51 USD per year.
That's out of pocket, for the record. Many Canadian provinces have cancer programs for MSP patients that cover the entire cost of the drug. I think suggesting you should move to Canada for medical treatment is frowned upon, but if you're looking for an economic argument--
I 💙 Canada 🇨🇦 Wishing I was living in Canada for so many reasons.
Thank you 💙
Our system is broken, top to bottom
WELCOME TO ‘MERIKKKAN BULLSHIT CAPITALISM, BABY!!!!
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Wishing you the best Dave.
What a gutting story of greed and immorality. Thank you for writing this and the incredible research. May the drug continue to work. May researchers discover cheaper equivalent. 🙏
fabulous article. also heart breaking to read the corporate greed. best wishes.
Thank God I live in the UK. I too have this horrible disease and am currently on lenolidamide (a generic) as part of my “3rd line” treatment. Year 6 is coming up soon for me; my daughter’s wedding is next week. 👏 Life can sometimes be tough, but my oncology team are AMAZING and it’s all FREE! 👍🤞
Awe! How wonderful for you and your daughter to be able to share her special day together. Best wishes. I pray the drug continues to work. Stay strong.
This is Martin Shkreli 2.0. While he was head of Turing Pharmaceuticals, Shkreli notoriously raised the price of the life-saving drug Daraprim, an antiparasitic medication commonly used by AIDS patients and others with suppressed immune systems, from $13.50 per pill to $750.
In Australia, a supply of 28 of these capsules costs $31.60. That would be around $20 US.