Hi all,
Since there's been a lot of concern recently about the supply of hydroxycholorquine sulfate I decided to email my local London Assembly representative asking him to investigate the matter further. I am aware Lupus UK have been pushing this forward but I thought it would be useful to lobby from the grassroots too. I know the situation is forever changing but I just received this reply from his office and thought I would share with all:
"Thank you for your email.
There has, as you will know, been medical interest in this drug to treat coronavirus. But the benefits are unproven at this point. Trials are being run, but these alone should not cause any supply issues. As it stands, the UK Medicines and Healthcare Products Regulatory Agency (MHRA) says Hydroxycholorquine Sulfate must not be used to treat coronavirus. Shortages of the drug seem to be more of an issue in the US due to the nature of the health care system. However, like you, we have seen reports that people with Lupus have been struggling to get hold of this drug in the UK.
Of course, any uncertainty on this issue is incredibly worrying for those who rely on this drug and clarity from the government on the situation is urgently needed.
I understand that Lupus UK have written to the Secretary of State for Health and Social Care and the Chief Pharmaceutical Officer, and MPs have also submitted questions on this . There has been no response as of yet from the government.
It is vital to keep up the pressure on the government to provide this essential information. Navin will also write to the Secretary of State and the Chief Pharmaceutical Officer, requesting information about supplies of the drug and seeking assurances that those living with Lupus will not have to go without medication. As soon as we receive a response to our enquiries, I will be sure to let you know."
Campaign for Access to Specialist Lupus Care for People Living with Lupus in Pembs, Wales
