Often I read posts stating the use of immunotherapy drugs as first line treatment in other countries. How does a person bring about change ?

[Jospencer]

How to advocate for change ?

[Cllcanada Top Poster CURE Hero]

Hard to answer, without an indication of your country.

Most countries have a number of active patient advocacy groups specific to CLL, so let us know were you are and we can perhaps direct you...

Generally outside the U.S. change can take a very long time, so you need to be involved for the long haul.. often years. It takes a lot of time and commitment.

But change does come, I have seen huge advances in the past 21 years as a patient advocate.

~chris 🇨🇦

[UK-Sparky]

As Chris says, best route is campaigning as a collective. That is how CLLSA in UK formed. patients willing to work together to lobby media, politicians and stakeholders. God Bless those patients, their partners and medical professionals willing to give the time to help their fellow CLLers.

UK Sparky

[lankisterguy Volunteer]

As Cllcanada / Chris says In Canada, the UK and USA there are patient advocacy groups that actively comment and try to influence politicians and bureaucrats for positive changes. Chris is a long time member of the Canadian CLLPAG and actively advocated along with several other Canadian groups. The UK CLL Support Association recently intervened to reverse a negative ruling and made Venetoclax available under NHS guidelines. Two of our Admins here are very prominent in those UK efforts Jm954 and HAIRBEAR_UK . In the USA Dr. Brian Koffman bkoffman founded the CLL Society cllsociety.org and is an active advocate as well as a CLL patient. The blue links above will take you to their profiles and you can send a PM/Chat private message to them if you want to know specifics about either country. In addition there is an international association of advocacy groups that covers many other world wide countries (I don't recall the exact name of that association of associations) and if you are not in UK or USA, the people listed above may be able to tell you how to contact an advocacy group in your country.

Len