MSB - a new dawn, page-1528

Hi @Sven62,

Yes, I am aware that Ryoncil is the not the primary treatment for these poor children SR-AGVHD.

I can see that @Wilba32, @Stellowe, @Phaedrus have already responded to your post in this regard.

I don't think there has ever have been any misconceptions that Ryoncil is anything but "the treatment of last resort."

I thought that my post clearly indicated that Ryocil was the last chance these children and their parents have (if that wasn't obvious then I apologise).

It has also been made clear by numerous posters when highlighting the insurance coverage that there is an order of treatments before Ryoncil can be prescribed, something most MSB HC readers would be aware of.

"Ryoncil is the third line of therapy and is expensive compared to Jakafi at $20,000 per month."

Forgive me, I confess to choking on my crunchynut cornflakes when I read this line, its also a lot more expensive than drinking bleach!

I cannot find anywhere that it is stated that the treatment should be "EITHER Ryoncil OR Jakafi for children under 12 yo" (please see the insurers conditions for further clarification).

I note your concern about uptake, historically, it has been shown that there are approximately 375 children per annum who DO NOT respond to the "lower cost treatments".

Ryoncil is the last chance these poor kids, their parents and their Drs have (using Ryoncil has shown to save between 70 % to 80% of these children and potentially more).

Prior to the approval of Ryoncil there was NO option just a very grim outlook.

They now have "HOPE" (something you have referenced ), which is excellent, given the life or death scenario.

As a parent I personally cannot conceive any situation where a parent or physician, who having a choice of Ryoncil or the death of a child would opt for the latter!

Given that choice and the fact that by July 2025 insurers and Medicaid across the USA will be covering the cost of Ryoncil treatment, I cannot see why there will be any issue with demand?

In my opinion, we will see a significant rerate of the market value given the above (oh, and an improvement in the local marketing/awareness)