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The cost of CAR-T

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21 Jul 2018

I've had to have CAR-T under a clinical trial, and was a 'self-payer', going for treatment in America from my home in New Zealand. I am sharing this detail in the hope it helps others.

200 million of these beauties

A number of people have asked about the logistics and costs of going through CAR-T as a self-paying non-US citizen, so I thought I would post a summary of my story for you. Feel free to contact me if you have questions.

I came to getting CAR-T after 12 months of Chemo; was refractory to it 3 times and basically ‘end of the road’ for the traditional treatments. I had DLBCL with a double hit.
I found out about CAR-T from my haematologist here in New Zealand; although at the time she thought I had no chance of getting it yet.

Through an amazing bit of luck I was contacted by someone who introduced me to doctors at MGH in Boston. However – I also sent emails to a number (probably 20!) other hospitals that I found in a list on the clinicaltrials.gov website.
4 or 5 of these hospitals came back to me and indicated I might be a candidate. I was already engaged with MGH at this stage, so didn’t follow up with them all. From memory these were MGH, Northside (Georgia), City of Hope (CA), Northwestern University (Chicago), and UPMC (Pittsburgh).

The main option I was pursuing was the Juno clinical trial, but I also looked at options for the Yescarta ‘standard of care’ option (ie, the commercially available one). This was available in a number of places.

Frankly, the easiest hospital to deal with initially was Northwestern University – they were very responsive, had a great web portal for me to upload my documents and PET scans etc. However, I went with MGH in the end because I had already sent them my biopsy slides.

Note – all the hospitals required a letter from my doctor with a summary of care so far; a set of all the discharge and hospital documents; access to any image files (PET and CT); and the biopsy slides. I had to get all these myself. The slides were the hardest to arrange, of course, because I had to get them released from my hospital in NZ and couriered to the USA. My hospital arranged that for me from NZ as it is a biohazard to send slides in the mail.
As mentioned, I went with MGH. I found the medical team excellent to deal with right from the outset. However, I was also separately dealing with the hospital’s International team. This was much more difficult. They sent me some initial requests for information and in one email also informed me that the estimated price was $1 million. (All costs are in USD in this blog)

As you can imagine, that was a shock. I went back with a couple of queries and after a few days they revised it to $750,000 – still an enormous amount.

However, I had no other choice so put my house on the market and agreed to move ahead. The doctor wanted to see me fairly quickly (within a week) but the hospital wanted me to put a deposit into a US bank account of the whole $750,000 before I met him.

I refused. Partly because I didn’t have that money (who does!), but also I thought it was far too much to pay all of it upfront.

I counter-offered that I would give them my credit card number and authorised them to take $10,000 off it to cover the first meeting, then my wife and I got on the plane, hoping that would work.
It did. We arrived in Boston (26 hour flight!), met the doctor who confirmed I would be a good candidate for the trial, then went to meet the billing people.

They were somewhat surprised I had turned up. Apparently, lots of people had enquired about CAR-T from offshore but not come to visit. No wonder, given the estimates!

Their senior manager joined our meeting and was frankly pretty apologetic about the process and said they had made some major assumptions, plus didn’t have all the relevant information about the trial, so asked for 2 days to review the estimates with the medical team. I also pointed out I had another hospital to visit in Chicago (which was true; I had arranged to see them as a backup option). This seemed to motivate them too. I hadn’t realised that you can effectively negotiate like this but you can.

Two days later they gave me a revised estimate of $686,000 – however, this was for the Yescarta ‘standard of care’ option, so I pointed out that it was the Juno clinical trial I was pursuing and that they could remove $373,000 straight away. This brought the estimate down to $310,000.

I then asked if there was a discount because I was a self-payer; ie no insurance company. They gave me a 25% discount. So the total estimate was now $235,000. I agreed and signed.

They wanted me to deposit the entire amount as a deposit before beginning treatment, but again I negotiated, and offered to pay 30% immediately and the rest before I got my cells back. They agreed, so I paid them a $70,000 deposit (in addition to the $10,000).

Now – my treatment went really smoothly, apart from the month-long manufacturing of cells which failed the first time and meant I had to repeat the apheresis and wait another month. However, while that was a cost from a time and travel expenses point of view, it didn’t cost more from the hospital.

Also, when it came time for my T-Cells to go back in, the doctor said I was so fit, and I was staying so close to the hospital, that he would ask permission for me to do it as an outpatient, which in the end I did. That probably saved $100,000.

It’s now about 35 days since my cells went back in. I checked my account with the hospital today and I still have about $10,000 in credit from the initial $80,000 deposit I made. I will likely have to pay that $10,000 plus another $20,000 or so in the next year for the follow up tests.

On top of all this of course, I have also had my travel and accommodation costs. I estimate that to be about $60,000 so far, and likely to be another $30,000.

To summarise the costs. It’s cost $70,000 (hospital), plus $60,000 (travel) so far, and likely to have a total cost of $180,000 by the time it’s all finished. A long way off the $1,000,000 I was initially quoted. And again, because it went smoothly, and because I was able to be an outpatient my medical costs were at the low end of the scale.
And, for the record, I am currently in Complete Remission.

Final advice:
• Check the clinicaltrials.gov website first – this seems pretty well up to date and has key contact information for all trial sites
• Negotiate. Pretend you are buying a car or a fridge, and shop around; compare prices; get a payment plan agreed
• Make a small deposit to start; don’t get convinced to make a large payment
• Ask for a discount
• If you are not confident, or if you are too sick, get an advocate or someone to do this negotiation for you. A friend, or if no other choice, apparently there are professional advocates who work on a commission basis
• You will need to be persistent – I didn’t get responses straight away and needed to chase up people, and call, and basically ensure I wasn’t forgotten
• Prepare for meetings, and take notes throughout to help you remember key things. Perhaps bring a support person also
• Check the bills – I went through today and found some things I’ve been charged that don’t look right, so I will be querying them

I hope this is of use to some of you, and again happy to answer questions if you have any.