Stem cell treatment cost 2.0: legit therapy

stem cells costWe hear so much about exciting potential stem cell therapies. Some of these are rigorously evaluated ones in the FDA clinical trial pipeline and others are available right now mainly through predatory stem cell clinics. Earlier this year I posted about the cost of the offerings of dubious stem cell clinics.

In this post, I address the cost of a future, legitimate, FDA-approved stem cell therapy. How high will that be?

This is a critical question because if many patients cannot afford a stem cell therapy then the impact of that therapy is reduced. Cost is inversely related to access. On the other hand, stem cell biotechs must make some profit or they will go out of business. Investors, who are often enthusiastic boosters of the stem cell field, will lose large sums of money and confidence in the field too in that scenario if stem cell treatments are priced “too low”. What is the “right” price?

There is likely to be increasing pressure on biologics drug prices as well from the federal government. Witness Hillary Clinton’s recent tweet on this topic below that sent people into a tizzy.

At the state level, such as here in California, the question of stem cell treatment cost is also becoming more pressing including for our state stem cell agency, CIRM. As CIRM-funded clinical trials advance, which is a wonderful thing, at the same time we get closer to where someone will have to decide on stem cell price tags.

We can look at what other cellular drugs have cost as guidance for the price tag range for stem cell treatments. For instance, Prochymal (its old name under Osiris) that is now rebranded as TEMCELL from Mesoblast/JCR likely will cost about $200K for a full treatment for GVHD (HT to Alexey). Provenge, the cellular prostate cancer drug from the controversial biotech Dendreon had (has?) a price tag of $93K. The most expensive drug in history, the gene therapy med Glybera will cost around $1.5 million per patient.

Realistically, a typical legit stem cell therapy could easily be $100K per patient. A personalized cellular medicine such as an autologous stem cell-based therapy could easily run into the hundreds of thousands per patient. Some therapies could go as high as $500,000 (see this helpful piece by David Jensen) or even into the millions.

Irv Arons

Irv Arons (@iarons) has come up with a great table of cost estimates focused in the area of vision therapy (free registration required). Thanks to Irv for permission to use it here (above).

How will patients afford such expensive therapies?

Will such therapies be covered by governmental agencies or insurance companies? They should.

We should also be keeping in mind the current costs of treating today’s patients with major and sometimes chronic diseases. These costs run into the hundreds of billions or above a trillion dollars each year in the US alone. That’s important context and rightly indicates that the costs of stem cell therapies to society may be appropriate even if at an individual level they seem high.

How does this compare to stem cell treatments at predatory clinics?

Such “treatments” range from $5,000-$20,000 each and most patients with whom I have talked either received or were pitched at least two such treatments, amplifying the total cost. The cost to the clinic of the treatment itself can be as low as $500-$1,000. Some clinics claim to have treated thousands of patients suggesting they are making millions in profits.

Why are stem cell clinic offerings typically relatively cheaper than legit treatments? Frankly, it is because they don’t follow the rules or do the necessary studies to prove safety and efficacy. Ten thousand dollars is still a lot to pay for something that doesn’t work and could even be harmful.

Even so some consumers may perceive dubious stem cell treatments as the way to go because of the lower cost, particularly if the legitimate stem cell field fails to do a good job at educational outreach and the FDA continues to effectively do nothing about the stem cell clinic problem.

The bottom line remains a question. Where’s the stem cell price sweet spot where we can help the most patients, but also generate a needed profit for the biotechs?

We need to find an answer to this question soon.

Surprising top 20 stem cell videos on YouTube

What are the top stem cell videos on YouTube?

They are not at all what I thought they would be, at least the top 20 as ranked by view count.stem cell videos

Check the top 20 out here.

The topics include a stem cell skin gun (see video above), Michael J. Fox, Parkinson’s Disease and stem cells, Suzanne Somers and stem cell breast augmentation, stem cells for baldness, stem cell cosmetic procedures, Peyton and Eli Manning with stem cells, and more.

At least some of the videos were purely educational so that’s something.

I expected more promotional stem cell videos from clinics to be in the top, but there are a few and I bet in a couple of years that more of such will break into the top-tier unfortunately.

What do you think is the best stem cell video and why?

Congrats to #stemcell image contest winner: Tina Zimmerman

I’ve been running a stem cell image contest here on the blog with the prize being $100. In the past I’ve done similar contests, but the response to this one was really impressive with 24 entries.

I also ran a stem cell video contest last year. The winning video, which is stem cell claymation and that you can find at that link, is downright hilarious.

My thanks to everyone who entered and shared their cool images of stem cells this year. As one entrant put it, stem cells are so pretty! I definitely agree. I made a montage (pasted at the bottom of the post) of all the entries.

So how to pick just one winner? It wasn’t easy.

Tina Zimmerman embryoid body

The winner is graduate student Tina Zimmerman, who submitted the above image of a differentiated embryoid body made from mouse embryonic stem cells. Tina is a student at University Medical Center of the Johannes Gutenberg University Mainz in Germany. She stained the cells for nestin (blue) and doublecortin (DCX; red), and the cells have a CAG-GFP reporter. We can see neural stem cells, neural precursors, and maybe some residual embryonic stem cells too or at least some GFP expression.

Here is the montage of all the entries.

stem cell contest

Recommended weekend science links

snuppyWoo-Suk Hwang & his dog clones…all started with Snuppy (pictured): Disgraced Scientist Clones Dogs, And Critics Question His Intent

Human gene editing summit under the microscope of Hurlbut, et al. CRISPR Democracy: Gene Editing and the Need for Inclusive Deliberation

New CRISPR partner protein Slices through Genomes, Patent Problems

For anyone who grows human pluripotent stem cells: What if stem cells turn into embryos in a dish?

Good stem cell news: no cancer evident in first IPSC transplant patient.

Based on his lengthy public comment on the article on PubMed, stem cell scientist Jacob Hanna isn’t too happy about the recent Nature review (related to STAP cell refutation) on hallmarks of pluripotency.

Speaking of STAP refutation, Takaho Endo correctly pointed out that his paper last year used similar methods to the new Nature BCA papers that provided more STAP refutation and yet one of those new papers didn’t even cite his. He tweeted about how when he contacted the authors to inquire about this that they said they had originally cited his paper, but ended up leaving it off due to restrictions on the # of citations allowed. That seems very regrettable.

Could stem cells treat or even cure some forms of blindness?

List of Speakers for NAS Meeting on Human Gene Editing

Who will be speaking at the upcoming National Academy of Sciences (NAS) meeting on human gene editing? So far we haven’t known, but now we do (if you are eager to find out, skip to bottom of the post).

The organizers of the meeting can be found here. Keep in mind that it is probable that some of these organizers, even if not listed below at the bottom of this post, will be present as well.

The meeting starts two months from today on December 1.

NAS gene editing

The summit has major importance as a global forum for discussing the many complex issues surrounding human genetic modification. As a result, the identities of the invited speakers who are attending will give a valuable sense of the spectrum of backgrounds and views that will be represented at the meeting.

A source has provided me with an organizational email to the confirmed speakers and moderators for the NAS meeting, from which I created the preliminary list below of likely participants. The caveats are (1) that this list may change and (2) I might have inferred some attendees’ names incorrectly based on a misinterpretation of email addresses. In other words, don’t hold me precisely to this list, but it should be pretty accurate.

What does this list tell us about the meeting? I’m still cogitating on it myself. What do you think?

I would note that of the 39 participants on this preliminary list, only 11 are women while 28 are men. In addition, amongst American participants there definitely seems to be an overrepresentation of people from East Coast “elite” institutions. Does that matter? More broadly does this list reflect a healthy amount of diversity?

It’s unclear at this time how many members of the public will be able to attend based on space, how those members of the public will be chosen, and how much they will be able to actively participate. The in-person presence and participation of members of the public are crucial for democratic deliberation on this pivotal issue.

I’m excited to be attending the meeting as a blogger. My goal is to provide as much information right here on this blog in as timely a manner as possible, hopefully as the meeting actually unfolds, to facilitate transparency and public understanding.

Here are the anticipated participants with title and affiliation listed in alphabetical order based on the information that I was provided:

  • Alta Charo (Professor, Univ. of Wisconsin Law)
  • Annelien Bredenoord (Professor Public Health, Univ. Med Center Utrecht)
  • Azim Surani (Professor, Gurdon Institute)
  • Barbara Evans (Professor, University of Houston Law)
  • Bill Skarnes (Senior Group Leader, Wellcome Trust Sanger Institute)
  • Chad Cowan (Professor, Harvard)
  • Daniel Kevles (American historian of science, Yale)
  • Emmanuelle Charpentier (Professor, Max Planck Society)
  • Eric Lander (Professor, MIT)
  • Feng Zhang (Professor, MIT)
  • Fyodor Urnov (Team Leader, Sangamo)
  • Gary Marchant (Professor of Law, Arizona State)
  • George Church (Professor, Harvard)
  • George Daley (Professor, Harvard)
  • Indira Nath (Professor Indian National Science Academy)
  • Ismail Serageldin (Director, Bibliotheca Alexandrina)
  • Keith Joung (Professor, Harvard, Genome Editing)
  • Janet Rossant (Professor, The Hospital for Sick Children)
  • Jennifer Doudna (Professor, UC Berkeley)
  • Jennifer Merchant (Professor, Université Panthéon-Assas Paris II)
  • John Harris (Professor of Bioethics, University of Manchester)
  • Jonathan Kimmelman (Professor Bioethics, McGill)
  • Jonathan Weissman (Professor, UCSF)
  • Klaus Rajewsky (Professor, Max Delbrock Center)
  • Kyle Orwig (Associate Professor, Magee Research Institute)
  • Marco Weinberg (Assistant Professor, Scripps)
  • Marcy Darnovsky (Executive Director, Center for Genetics and Society)
  • Matthew Porteus (Associate Professor, Stanford)
  • Peter Braude (Professor, King’s College London)
  • Philip Campbell (Editor-in-Chief, Nature)
  • Richard Gold (Professor, McGill)
  • Robin Lovell-Badge (Professor, Francis Crick Institute)
  • Ruha Benjamin (Professor, Princeton)
  • Sharon Terry (Health Advocate, Genetic Alliance CEO)
  • Thomas Reiss (Head of Competence Center Emerging Tech bei Fraunhofer ISI)
  • Weizhi Ji  (Director, Kunming Institute of Zoology)
  • 周琪 Zhou Qi (Professor, Chinese Academy of Science)
  • 李劲松 Li Jinsong (Professor, Chinese Academy of Sciences)
  • 石井 哲也 Tetsuya ISHII (Professor Bioethics, Hokkaido University)