Ask your MP to do more to support blood cancer patients

COVID-19: Requests to the government on behalf of the blood cancer community

The UK’s blood cancer patient community are clinically extremely vulnerable to COVID-19. Several studies showed that about 60% of blood cancer patients failed to develop effective antibodies for an immune response to the virus after their second jab.

The growing spread of the virus is causing concern and fear within blood cancer patients and it is imperative the Government does more to support them.

The Blood Cancer Alliance Policy Group, which includes ACLT, Anthony Nolan, Blood Cancer UK, CLL Support, CML Support, DKMS, Leukaemia Care, Leukaemia and Lymphoma Northern Ireland, Leukaemia Cancer Society, Leukaemia UK, Lymphoma Action, MDS UK, Myeloma UK, Race Against Blood Cancer and WMUK, have recently sent two open letters to Sajid Javid, Health Secretary, requesting more support for blood cancer patients.

Read the open letter here >

"For my family, the fact that I live with the uncertainty of how well vaccines work in patients like me, post stem cell transplant, is a great strain. Not being able to do more, go to more places and socialise more, for me this gives the feeling of guilt and many still don't understand why we have to be extra careful."

Read Rebecca's story >

What are we asking from government and MPs?

The Blood Cancer Alliance group (to which we belong), has sent a letter with five specific requests:

  1. Commitment to ensure the continuation of universal access to free lateral flow tests
  2. Communicating the need for immunocompromised patients to receive a third dose
  3. Reintroduction of the mandatory wearing of face masks
  4. Reintroduction of social distancing measures
  5. Communication on employment rights of the immunocompromised

YOU CAN REINFORCE THIS MESSAGE

  1. Read the full letter and forward it to your MP to inform them. You can find out their email here.

  2. Feel free to add details about your personal circumstances, specifically as a patient or family affected by MDS, Myelodysplastic Syndromes.

Letter sent by Blood Cancer Alliance to the Health Secretary Sajid Javid about the impact of coronavirus on the blood cancer community:

Click here to read the letter sent by Blood Cancer Alliance to the Health Secretary Sajid Javid about the impact of coronavirus on the blood cancer community

"I am being pressed by the DWP to make myself available for work again immediately or lose my benefit. They have said that the only thing that can take the pressure off is to be declared unfit for work by my GP, which is difficult as I am a watch and wait patient who is currently not physically unwell with my condition. But myself and my father are still extremely vulnerable to Covid."

Read Daniel" story >

We have also co-signed a second letter - sent by the Anthony Nolan organisation, requesting Sajid Javid to appoint a government lead for immunocompromised patients.

Click here to read and download the letter sent by Anthony Nolan, requesting the appointment of a government lead 

You can also forward this document to your MP, explaining in a few personal words why you believe that such a new role would be beneficial.

If you are writing to your MP:

Are you on regular transfusions? Have you been told your ferritin (iron) levels are increasing?
Have you had difficulties accessing the oral version of the iron chelation treatment (called Exjade)?
Some pockets of the UK still will not grant funding to this drug, effectively creating a postcode lottery.

If you are living in a region which STILL denies access to Exjade, please take this opportunity to explain your situation to your MP. Find all the information here >

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