June is international CMV Awareness Month and we need your help. The topic chosen by us and our international colleagues is Newborn Screening of congenital cytomegalovirus (cCMV). CMV Action’s aim is to raise awareness of the fact, that, there is no current universal screening of cCMV for newborns in the UK. An essential part of our campaign will be a PETITION on the government website. If we can get 10,000 signatures the government will respond.
There are 3 reasons why we feel it is important to screen all newborn babies:
The majority of babies born with cCMV have no symptoms but they can develop them later. Half of hearing loss, due to the CMV virus, can be progressive or late onset. Screening all babies would allow them to be treated and monitored for symptoms caused by the virus, including hearing loss in a timely manner.
Diagnosis within the first 21 days is critical to establish that the CMV infection is congenital rather than postnatally acquired. After this time the blood spot test needs to be relied on and this can delay diagnosis.
Anti-viral treatment has to be started within the first 28 days of baby’s life in order to be effective. Therefore, delayed diagnosis, waiting for hearing tests or other diagnostic tests, means this window of opportunity can be lost.
WHAT ARE WE DOING
During June we will be campaigning on social media and seeking publicity in the mainstream press. Our trustees have made videos about the screening issue which will be shared internationally with colleagues at charities in the US and Canada and used on-line to launch National Awareness Month. We are also taking part in an Ask the Expert session.
An essential part of our campaign will be a PETITION on the government website. If we can get 10,000 signatures the government will respond.
HOW CAN YOU HELP?
We cannot do this without your help:
SHARE our petition with everyone you know. We need 10,000 signatures for a response. Share it with families, friends and work colleagues and ask them to share with all their contacts.
SHARE our posts on your social media, talk to your MP and any medical professionals you know
SHARE YOUR STORY & tell us why screening is important to your family or in your job. We would love to have your comments and stories. These will be shared on social media but we won’t identify you or your family unless you want us to. The more stories we get the better our campaign. Send them to firstname.lastname@example.org
DONATE to help us spread the word about the need for screening - we want to target the national press and reach more people through social media but this comes with a cost so if you can help with a donation however small it would be appreciated. Click here to donate
LET’S SPEND JUNE TALKING ABOUT THE LACK OF SCREENING FOR CMV