Introduce screening for HTLV-1 in high risk expectant mothers

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My partner, age 32, passed away in April 2020 from an aggressive, incurable cancer named ‘Adult T-cell leukemia lymphoma’ (ATLL). This cancer is caused by a virus known as HTLV-1.

This virus is most common in the Caribbean, South America and Japan (among other regions). Due to migration, the number of those with the virus has silently increased in other countries, including the UK. Transmission of the virus includes sexual transmission and breast feeding.

At the time of my partner's diagnosis we were new parents to a baby boy. Whilst dealing with the diagnosis of my partner I was tested to see if I had the virus, which as I breastfed, would mean our baby could have been passed the virus. We were extremely fortunate to find that I, and therefore our son, did not have the virus. Infants with HTLV-1 have a 1 in 4 chance of an agonising death from ATLL. 

The risk to our baby boy could have been significantly reduced if I was screened for HTLV-1 during my pregnancy. My partner was from the Caribbean, meaning I was at high risk of carrying HTLV-1. Screening, I believe, should have been offered.

Screening in Japan shows considerable reduction of HTLV-1 transmission. If the mother is tested positive she is then able to take precautions to save her baby from infection, for example deciding not to breastfeed.

The UK National Screening Committee reviews HTLV-1 screening every 3 years (previously in 2017). They cite a lack of new research as to why screening is not occurring. This means history can, and will, repeat itself. We must act. The cost of screening will be lower than current treatment plans.

Please sign the petition to give high risk expectant mothers the awareness and choice to be screened. It will save unborn babies the pain of developing cancer and the devastation this virus causes to countless lives.