CLL Support Association
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CAR-T Therapy Inquiry

CAR-T Therapy Inquiry

Are you a patient or physician interested in CAR-T gene therapy? Call the Stanford Blood and Marrow Transplant Program at 650-723-0822.

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Hi Naka,

This kind of post can be seen as advertising, particularly given the 'for profit' USA health industry. Our community admins would normally delete the post as it could be seen as not meeting the HealthUnlocked Community Guidelines, which are referenced at the bottom of this page. Specifically "When you publish information from third party sources, such as information about new treatments, you are asked to provide references and links wherever possible.

If an account is suspected of violating any of these guidelines as stipulated above, particularly in the instance of bullying or spamming, that member's account may be restricted or banned."

Would you please provide some background on what members of this community are likely to gain from calling the number you provided?

There is considerable community interest in CAR-T therapy for CLL, as can be seen from the many previous posts on this topic: healthunlocked.com/search/c... , but it is currently a very expensive therapy that is still immature and high risk compared to other treatment options. I suggest it would only be of interest when someone has run out of other, less expensive and safer treatment options.

Neil

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Neil I got this from an artical on Stanford University My Health website.

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From your previous post on this two months ago, it doesn't appear that this for profit centre is focusing on CLL, but rather solid tumour and DLBCL CAR-T research:

healthunlocked.com/cllsuppo...

What patients are benefitting from CAR-T?

....Under the direction of Dr. Crystal Mackall, Stanford is developing new CAR-T therapy constructs. The goal is to use the therapy on solid tumors, like lung cancer and breast cancer. We are already working with other institutions to test cancer cell therapy on patients with different conditions such as lung cancer and sarcoma.

Will this treatment replace chemotherapy?

This is just the beginning. We’re hoping to use this therapy rather than putting patients through the toxicity and difficulties of chemotherapy. In January 2018, we will participate in a study comparing the safety and effectiveness of CAR-T versus standard chemotherapy for patients with relapsed diffuse large B-cell lymphoma (DLBCL). (My emphasis)

The doctor who established this center, David Miklos, has shared authorship of a few CLL specific papers, but his interest is wider, with a particular interest in stem cell transplants: stanfordhealthcare.org/doct...

Crystal Mackall, the doctor driving the CAR-T program has in interest in pediatric and acute leukemias, not CLL: profiles.stanford.edu/cryst...

While it is good to see additional research into CAR-T from which CLL CAR-T specific research could benefit, this center doesn't appear to have a strong CLL focus, unfortunately for us.

Neil

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For those outside the US, Stanford in Palo Alto CA is an equivalent of Oxford or Cambridge...one of the top in the US. also the distincion between for profit and non profit...as though for profit is somehow nefarious is not accurate. Non profits are not "nobler"...it is a different business structure. They likely charge the same and if you cant pay it does not mean the non profit will wecome you. Our Medicaid program is for the poor ...which is taxpayer funded. No I did not attend Stanford! but wish I had.

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What's more pertinent is the the degree of linkage between Stanford academia/research and the associated Stanford Health Care or whether they are primarily using the high profile Stanford name to attract potential customers: facts.stanford.edu/about/ho...

The pros and cons of profit/not for profit is not the issue here (though one would hope that income in excess of expenses would be invested in furthering research). The admin concern was whether the post was in accordance with HealthUnlocked guidelines i.e. whether the post was advertising or providing a link to a valuable resource for our members.

Neil

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Neil the term "for profit center" is kind of ironic. Sad to say but the WHOLE medical system is a for profit industry down to the help nurse.

Hopefully we CLLs can benefit from CAR-T therapy soon.

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That may be the case in the USA, but this is an international forum and other countries have far greater restrictions on the advertising of medical services than is the case in the USA. Importantly, this HealthUnlocked site is UK based and we have to abide by HealthUnlocked's Community Guidelines. Incidentally the majority of medical services in the UK are provided under the NHS - a universal medical health service paid for by the taxpayer.

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"Profit" and great medical care is not an oxymoron. Tbe profit motive has advanced medical care greatly. Most drugs would not exist without the profit motive. Profit does not = evil. Until we change human nature and live in a world of unlimited wealth, economics will play a role in medicine.

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newyork8

Most CLL drugs are heavily subsidized by the U.S. government... aka the American tax payer...

There simply is not enough profit in small orphan markets like CLL to make drug companies interested in developing new treatments.

Huge tax breaks, clinical trial support and extended patent protection and closed markets, make it viable.

I suggest you learn about the Orphan Drug Act, and how it benefits new treatments for CLL.

en.m.wikipedia.org/wiki/Orp...

~chris

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Sure ill look at it. Many small drug companies also get private equity $ and lose money for years until perhaps being bought out for the big payday. The question for patients and society is what system provides the most innovation...newest discoveries.. at the lowest cost. Lots of drug companies fail taking private investors for a loss. Without the availability of private risk capital not sure of the result...probably a lot less development.

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Many drugs come from academia as well and then are licensed to a pharma company to commercialize... UPENN CAR T cell is an example.

This route is more common in Europe but it does happen in the U.S. as well...

~chris

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Neil -Totally understand.Thank you for hosting this wonderful forum. It's been a tremendous help to me and I'm sure every other CLLer.

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My personal read on the original post, coming from the perspective of someone in the US, is that many CLLers are asking about CAR-T. For someone considering it, it would probably be worth it to call the number and ask where they are in the process and what they have to offer for CLL patients. Stanford is a well known research center, where Dr. Couture is the main CLL person for that part of the (very large) state, and Dr. Milkos is the reason that a couple of my earliest CLL friends are doing well and considered cured after stem cell transplants.

That being said, if I were considering CAR-T, I would also be calling every other research hospital in the country offering a trial (assuming that my insurance or the trial would cover expenses - clinicaltrials.gov would be a good place to start)

. Maybe what's missing is a list of other trial options. I know that it's hard for those outside of the US to understand our system, with it's benefits and flaws, just as it's hard for those of us here to understand the systems, and the realities of them, in other parts of the world.

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Pkenn correct. No intention of promoting or selling anything.

The system here in the US is not that complicated after all. Might differ a little from state to state but the following is for California. I just went through the whole process of making sure I'm in network with my insurance 🤢

There is EPO PPO HBO and other health insurances out there for the workers or people under 65 with a yearly income above 22k who can affort to buy insurance.

Then Medicare for the over 65 and younger people with disabilities.

Last Medi-Cal for the low income or anybody with an income of less than $22000 a year. That includes children up to the age of 19 illegal in the US with their parents.

Medi-Cal is covered by the tax payers. If you have resources you pay or rather have to pay through your teeth for medical services but if you don't it's basically free. There are people on Ibrutinm paying $1000+/month with insurance because they in a higher income bracket and there are others paying $10/month cause their income is below 22k/year which qualifies for Medi-Cal. They have can see CLL experts. No weeks of months on a waiting list.

To sum it up if you have money you PAY and if you don't they can still see Dr Milkos or Dr Coutre!!😁

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So to further the description of the US healthcare system... when I exit the train in Chicago, there are many poster ads for CAR-T therapy - advertising a hospital affiliated with a medical school. May be Rush or University of Chicago - don’t know which.

I go to Northwestern which is affiliated with that University.

At these Hospital (or medical groups), the doctors often spend a lot of their time doing research. There are specialists in many Cancer fields and many are nationally recognized in their specialization. The medical students work through the hospitals as interns and residents (though with specializations like CLL they might only be seen a few times and just do the interview and update part of the appointments. The specialist provides our care.)

Since our healthcare is controlled by us individually, we can choose hospitals and specialists, and can change at any time. Our employers typically provide many health care plan options, and annually we can pick and choose. My Blue Cross Blue Shield plan, for example, has web pages that let me search their doctors and choose a plan that gives me the hospitals and doctors I like. Some plans are more expensive than others; I pay top dollar to get top dollar care.

Which brings me back to the CAR-T ads at the train station. Since I, as a consumer, have choice, the medical groups must compete with the best reputation, care, doctors and procedures. The ads say this particular group is the first to provide CAR-T in Chicago. Therefore, if this was important to me at this point, I would want to move to this medical group at my next annual enrollment.

I can’t speak to the original post here, but I just wanted to provide background so people in other countries could better understand why we don’t mind seeing these, and therefore having more personal options.

BTW - they also have to compete nationally for patients for clinical trials - so the above post might point me to a clinical trial that I could fly out and participate in (much like some of our Canadian CLLers might do to participate in our trials).

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