Macular Society petition: Preventing Sight Loss

[kalahuchi]

Dear Everyone,

The Macular Society have organised a petition to encourage the UK Government to give higher priority to eye health. So many of us have lost our sight unnecessarily because of delays and inadequacies in being able to access drugs or treatment. We also have problems when sight saving drugs are available in some parts of the UK but not others.

If any of you would like to sign the petition you can find it by doing a Google search for Macular Society and looking at the bottom of their homepage. There you will see a picture of Chris who tells his story and above this pic is a link saying "sign petition" or something similar. Click on this link and you can sign. If you could also tweet and share with your facebook friends, that would be wonderful.

Can I just say a huge "Thank you" to the Macular Society for being prepared to do something positive to tackle these issues for us x

[Rosalyn-helpline Partner]

Thank you kalahuchi,

Here is the link that you describe:

thepetitionsite.com/en-gb/t...

It is important that anyone experiencing treatment delays contacts us on the helpline for discussion and support.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

Macular Society helpline

[Bobbie915 in reply to Rosalyn-helpline]

I had great difficulty trying to sign the petition. More to do with me than your instructions! In the end the link you posted did the trick.Very sad story from Chris but my guess is, he is not alone. I couldn't believe that treatment available in Wales (and Scotland) is not available in England. Have I got that right?

Good work Macular Society - I see there are over 7,000 signatures already.

[kalahuchi in reply to Bobbie915]

Yes, that is quite correct and I've been fighting for access to Eyelea in England along with Chris for a few months now. This postcode lottery happens every time a new drug is developed. Usually it is licensed first for AMD patients, then for those with diabetes, then BRVO and then for those of us with myopic CNV. Some macular conditions aren't treated at all. Then the drugs are approved individually in the 4 different countries that make up the UK, often with a difference of around 12 months between them.

So many people lose their sight because of these ridiculous and unnecessary delays and even with drug approval, the waiting time for treatment just compounds the problem for many of us.

Thank you for signing the petition. The Macular Society really are wonderful and I don't know where we would be without them. x

[Bobbie915]

As I live in England and have been having Eyelea injections for the past 2 years, I did not realise that it is only given to those with certain eye conditions. Thank you for explaining the situation in detail.

[kalahuchi in reply to Bobbie915]

You're welcome Bobbie915. It's difficult enough to be told you can't have a drug which is available elsewhere in the UK, but I'm sure you can imagine how it feels to be refused a drug treatment that could save your sight so easily, yet the person sitting next to you in clinic has had access to it for years. Thank you for persevering with the petition x