Coffee Morning Corner
Subject
Comments from the Charity
30th April
Is it possible for the website to contain links to charities in the UK that raise funds for ALK+ research? Are these charities equally reputable?
We formed the charity to support and empower patients and to advocate for best practice throughout the UK. We recognised the importance of research but decided that we should not compete with other charities and that we should focus on improving the lives of patients and their families. We recognise that some members may wish to donate to research.
There is a small UK charity that raises money exclusively for ALK-positive lung cancer. It was registered in December 2020 with 3 trustees and is not recognised by HMRC for gift aid. It has raised £130,000 over 3 years and has allocated all its funds to a project in Michigan, USA, into finding the cause of ALK-positive lung cancer.
There is another UK charity with 4 trustees formed in July 2022. It has no reserves and trustee are personally subsidising running costs. It is not recognised by HMRC for gift aid. It has given a grant of nearly £50,000 to The Institute of Cancer Research towards building a tissue bank of oncogene-driven lung cancers, not exclusively ALK-positive LC.
There is a third UK charity formed by 3 trustees in February 2024 to advocate and raise funds into all oncogene-driven lung cancers, not exclusively ALK-positive LC. It has not yet submitted any accounts and is not recognised by HMRC for gift aid.
Reluctantly, we can’t endorse any of these charities as being the most effective way of donating to research.
In the USA, ALK Positive Inc has raised millions of dollars for research They have well-established processes for determining funding request from scientists, pharmaceutical companies, universities and hospitals and for evaluating results. We concluded that, if members wished to contribute to research, the USA group was the most appropriate organisation for them to fund.
Some members don't live near a regional lunch. Is this something that the charity could look into?
We are aware of the problem and are trying to recuit additional Regional Ambassadors. We would love to hear from anyone who is willing to arrange a lunch three times a year.
Other matters discussed -
Oramorph
Bood test results lost
Side effects
Time and frequency of coffee mornings
Comment not required
25th March
Does ALK+ lung cancer affect younger people more aggressively than older people?
Some studies have shown that younger peole survive longer than older people. In the recent Lorlatinib Crown study, there was no difference.
Appreciation for the Regional lunches
Good to hear
Concern about how some people would get to conference, eg airport tarnsfers
The charity will pay all actual costs of travel to the conference from anywhere in UK and Ireland, including airport transfers.
Concern about Oramorph being addictive.
Yes. It is.
Suggestion that the charity prepares a passport-style document in two parts - (a) info for doctors about ALK+ LC and (b) info about the patients condition and medication
There are two separate documents on the Our Publications page on the website - (a) About ALK+ LC leaflet for doctors and (b) a proforma for patients to log their medical information.
Raised liver enzymes
A common problem shared by many members. Oncologist may "wait and see", pause treatment, reduce dose or switch treatment.
Breaks in treatment
In a recent survey, 38% of our members reported that they had short breaks in treatment. of which 43% resumed at a full dose, 54% restarted at a lower dose and 3% switched to another TKI. If a patient has a break for more than 6 weeks, there may be funding implications in England and there is a report about this on the Our Publications page on the website.
Personal Independence Payment (PIP)
A current and hot political potato. Currently, applied inconsistently - some members get it and others have been refused. The Government's proposed new rules are intend to limited it to the most disabled.