NHS England refusing second Stem Cell Transplants

[bronx77]

Hi everybody not many of you will know yet but NHS England at the being of July issued an edict proclaiming that they would Not routinely Pay for a Second Stem Cell Transplant for relapsed patients with Blood Disorders even when the Consulants think it viable and the best option

This came after some high profile cases on Twitter for crowd funding for some patients to travel to The USA for treatment

Anthony Nolan presented a 18000 signiture open letter to Jemery Hunt the British healt minister on Thursday Signed health professionals

On Friday they launched a public appeal WRITE TO YOUR M P

I would like to urge this community to get behind this campaign as some of us may well be offered the new CAR-T treatment in the future for CLL

You can take part at anthonynolan.org and click the link join the campaign

Anthony Nolan is the main Stem Cell Register in the Uk

[bronx77]

Hi goshawk basically if you are strong enough you can withstand the process there is a prognastic scoring procedure to determine if you are suitable for the transplant

There is a conditioning chemo called RIC that is Reduced Intensity Conditioning for the over sixties there was a very successful trial in Germany a few years ago two years ago a similar trail started in the UK it's called the Figaro trial and is co - ordinated from Birmingham

One of my family is TWO years post transplant and doing very well they were 66 when transplanted

There are a lot of younger people out there with CLL

Hope this will help you

[MsLockYourPosts Passed Volunteer]

As blood cancer patients we should support not only those with CLL, but also those with other leukemias for which transplants are the only option. It appears that one has to be in the UK to be a part of this campaign. I hope those of you who are will support it. I know many people, because of my cousin's transplant for AML, who are here today because of a SCT (BMT). Some of them have needed a second transplant to get their lives back.

[bronx77]

Hi pkenn which country are you in? It would be good to start a world wide awareness to shame the British Government this has not been reported in the UK media yet it's all Brexit and ISIL at the Mo.

I've got the Local BBC radio station interested now as there is someone directly affected in our area

Maybe you could start something on social media in your country to get support for us Brits