CLL Ireland

CLL Ireland is very disappointed with the news from HIQA that the Shingles vaccine is not recommended in the national immunisation programme.

The medical advice for CLL patients is to get the Shingles vaccine but they can only access it privately.
This means they have to pay themselves.
The cost can be over €600.
https://public.gsk.ie/products/shingrix.html

Today, the Health Information and Quality Authority (HIQA) published its health technology assessment (HTA) of shingles (herpes zoster) vaccination for adults, following a public consultation that took place from 19 March to 30 April.

Dr Conor Teljeur, HIQA’s Chief Scientist, said: “We are grateful to all who participated in the public consultation. The input we received was carefully considered in this final assessment, and much of it is reflected in sections regarding burden of the disease, patient aspects and social aspects.

“Our assessment concludes that the shingles vaccine is safe and effective, but that the benefit of the vaccine decreases over time. We found that, at the current vaccine price, adding shingles vaccination to the routine immunisation schedule for the general population aged 50 years and older would not be an efficient use of HSE resources.”

People who are immunocompromised are also at increased risk of shingles and experiencing a severe disease course.

https://www.hiqa.ie/hiqa-news-updates/hiqa-publishes-assessment-adding-shingles-vaccine-national-immunisation-programme

HIQA publishes assessment of adding shingles vaccine to the national immunisation programme for adults | HIQA HIQA publishes assessment of adding shingles vaccine to the national immunisation programme for adults Date of publication: Friday, 19 July, 2024 View Health technology assessment of Herpes Zoster (shingles) vaccination Today, the Health Information and Quality Authority (HIQA) published its health....

Ireland is one of the study locations for the CLL 18 trial.

Barbara Eichhorst, MD, University Hospital Cologne, Cologne, Germany, highlights trials of interest in the field of chronic lymphocytic leukemia (CLL) treatment – the Phase III CLL18 trial beginning at the end of 2024 and the MAJIC trial (NCT05057494). This interview was recorded at the biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL) 2023 meeting, held in Boston, MA.

Current trials of interest in CLL | VJHemOnc In this interview, Barbara Eichhorst, MD, University Hospital Cologne, Cologne, Germany, highlights trials of interest in the field of chronic...

More on the encouraging early trial results on using NX5948 a BTK degrader.

The encouraging early results of NX-5948, a novel BTK degrader, in patients with R/R CLL and NHL | VJHemOnc Due to their unique mechanism of action, BTK degraders hold the potential to treat patients who become resistant to BTK...

CLL Ireland patient and care partner information day takes place on October 5th.

Learn how to live well with CLL.
A great line up of speakers.

Registration link is now open.

https://www.eventbrite.ie/e/cll-ireland-patient-care-partner-information-day-tickets-934542611107?aff=oddtdtcreator

More on the new agent for treating CLL from CLL Society's Dr Brian Koffman who interviewed Dr. Alexey Danilov from City of Hope National Medical Center who presented the study design at the American Society for Hematology (ASH) Meeting 2023.

Background:

NX-5948 is a new type of drug known as a BTK degrader.

Hear the interview from ASH23 in the link.

The update from EHA 24 on this drug are very promising which we reported last week.
See attached slides.

https://cllsociety.org/2024/06/initial-study-and-findings-for-btk-degrader-to-treat-cll/

More updates from Five-year follow-up data from the CAPTIVATE trial (NCT02910583) using Ibrutinib plus venetoclax reveals a progression-free survival (PFS) rate of 70%, with high-risk patients also showing high PFS rates.

Optimizing the combination of ibrutinib plus venetoclax in CLL | VJHemOnc Lydia Scarfò, MD, Vita-Salute San Raffaele University & IRCCS San Raffaele Scientific Institute, Milan, Italy, discusses the efficacy of combining...

News coming out of for patients who are relapsed & refractory and definitely one to watch.

A new agent NX 5948 BTK degrader shows
rapid and durable treatment responses in a difficult-to-treat patient population.
69% ORR

Clinical trials using this agent are ongoing.

Unfortunately Ireland is not one of the trial locations but they are in the UK.

https://www.nurixtx.com/study/a-study-of-nx-5948-in-adults-with-relapsed-refractory-b-cell-malignancies/

Frontline therapy for , presents results phase 2 trial of Pirtobrutinib, Venetoclax and Obinutuzumab as a first line treatment.
Very positive results from this time limited treatment.
85% of patients had no detectable disease U-MRD in BM after 12 months

CLL Ireland is delighted to be here at the EHA conference to represent our patient community.

Update on Richters Transformation.

Professor Arnon Kater on using single agent Epcoritamab to treat patients whose has transformed to Richters.
EPCORE CLL-1 trial show this treatment leads to deep responses.

Full House for this CLL sessions.

LAST CHANCE to register for the IPHA Forum where the focus will be on the hugely important topic of Clinical Trials.

Hosted by Senior Adviser to Hanover Communications and former Tánaiste, Mary Harney, we will discuss why we need to re-think our approach to clinical trials in Ireland.

The patient voice will be represented by Jan Rynne CLL patient advocate.

Don't delay, register now for what promises to be a fascinating discussion.

Register here: bit.ly/4bxohWX

https://www.iphaforum.ie/events/untapped-potential?utm_source=linkedin_gif&utm_medium=social&utm_campaign=clinical+trials

Untapped Potential: Rethinking Ireland's Approach to Clinical Trials | IPHA Forum A strong clinical trial infrastructure gives patients access to sometimes life-saving treatments. However, according to the IPHA Clinical Trials Activity Comparison Report 2024, Ireland continues to attract fewer clinical trials than some European countries with similar populations and economic perf...

This event will be of interest to our CLL community and to those interested in clinical trials in Ireland.

Less than 2% of Irish patients have access to clinical trials.
Between 2013 and 2020 Denmark carried out 1093 trials compared to Ireland’s 385.

A strong clinical trials infrastructure is vital for patients.
It's an opportunity to get access to tomorrow's treatment today.

This event will discuss these issues and the patient voice will be represented by Jan Rynne CLL patient advocate.

https://bit.ly/3WUSeM5

Women's mini marathon under way.
Good luck to all who are supporting their charities, including Chronic Lymphocytic Leukaemia Ireland runners.
https://www.givengain.com/donate/cc/28623

Venetoclax Monotherapy for Relapsed / Refractory CLL Venetoclax monotherapy is effective for treating relapsed / refractory CLL, including in patients previously treated with BTK or PI3K inhibitors.

The Vhi Women's Mini Marathon is back for its 42nd year, taking place on Bank Holiday Sunday, June 2, 2024

Chronic Lymphocytic Leukaemia Ireland's young volunteers are running and hoping to raise much needed funds.

You can support them using the link below.

Your donation will help our work to support, educate and empower our CLL patient community

https://www.givengain.com/donate/cc/28623

SAVE THE DATE !
CLL Ireland is happy to announce the date for our next patient information day. Saturday, October 5th, 2024.
We have an exciting line-up of speakers to cover all aspects of living well with CLL.
More details to follow.
clli.ie

SUPERNOVA Phase III trial of sipavibart long-acting antibody met primary endpoints in preventing COVID-19 in immunocompromised patient population.

Despite accounting for approximately 4% of the population, immunocompromised patients make up about 25% of COVID-19 hospitalisations, ICU admissions, and deaths, even after multiple doses of COVID-19 vaccines.

Ghady Haidar, M.D., UPMC (University of Pittsburgh Medical Center) transplant infectious diseases physician, medical director of the translational research program at UPMC’s division of infectious diseases and SUPERNOVA trial primary investigator, said: “COVID-19 still represents a significant and disproportionate risk for immunocompromised patients, with infection often leading to serious and protracted illness. By delivering infection-fighting antibodies directly to patients who often don’t respond adequately to vaccines, the data support that sipavibart has the potential to provide much-needed protection against COVID-19 in this highly vulnerable population.”

SUPERNOVA Phase III trial of sipavibart long-acting antibody met primary endpoints in preventing COVID-19 in immunocompromised patient population SUPERNOVA Phase III trial of sipavibart long-acting antibody met primary endpoints in preventing COVID-19 in immunocompromised patient population PUBLISHED 16 May 2024 Positive high-level results from the SUPERNOVA Phase III COVID-19 pre-exposure prophylaxis (prevention) trial showed AstraZeneca’s...

An international conference on cancer will be held in Farmleigh in Dublin.

Leading cancer experts from around the world are attending the event to promote greater cooperation in tackling the disease.

It comes as a new report found that cancer is the "single biggest killer" in Ireland, with more than 9,600 deaths a year.

The report from the European Cancer Organisation (ECO) and the Irish Cancer Society said the disease is responsible for 30% of deaths in the country each year.

Farmleigh to hold international conference on cancer An international conference on cancer will be held in Farmleigh in Dublin. Leading cancer experts from around the world are attending the event to promote greater cooperation in tackling the disease.

Just one more day to add your voice to this important survey.
The Lymphoma Coalition Global survey is an opportunity for the voice of and patients including carers to be heard.

Here is the link.

https://lymphomacoalition.us12.list-manage.com/track/click?u=20baf436c8e46a7cab7d035ec&id=e4a05c1b62&e=66b50f6752

Living Life to the Fullest 24 Years After a CLL Diagnosis In the article published by Cancer Health, Terry talks about his 24 year journey in a unique chronological timeline.

Happy Easter from CLL Ireland.
Wishing you all peace and hope.
If you need more information or support visit our website.
https://clli.ie/

Venetoclax is a drug our CLL community is familiar with and now it's showing great promise in combination with other drugs for the treatment of another blood cancer Multiple Myeloma.

Researchers at RCSI and Beaumont RCSI Cancer Centre have found a promising new drug combination for multiple myeloma treatment.

It's a significant step in identifying effective treatment options for the currently incurable disease.

Learn more: https://www.rcsi.com/dublin/news-and-events/news/news-article/2024/03/rcsi-research-identifies-promising-drug-combination-for-multiple-myeloma-treatment

RCSI research identifies promising drug combination for multiple myeloma treatment RCSI research has found that venetoclax, a medication currently approved for leukaemia, has benefits for patients with multiple myeloma when used in combination with another drug. This discovery offers a new avenue of treatment options for the currently incurable disease. More ...

The Global Patient Survey on Lymphoma & CLL allows us to create education, support and advocacy programs that matter to patients. Add your voice now. https://bit.ly/LCGPS2024 "

Update on the Lymphoma Coalition Global Patient and carer survey.

On Week seven we now have 95 Irish participants who have completed the survey.

100 will give us a country specific report.

A big thank you to all who shared their experiences and a reminder if you haven't filled it out that there is still time to add your voice.

Also good to capture those patients and carers impacted by other Lymphomas here in Ireland.

Irish Cancer Society

Please find the link to the survey and share

https://lymphomacoalition.us12.list-manage.com/track/click?u=20baf436c8e46a7cab7d035ec&id=1196aceb99&e=66b50f6752

SHINGLES VACCINATION

HIQA has just launched a public consultation process which will give our community an opportunity to have their say on the Shingles vaccine availability.

At the moment those with CLL are medically advised to get the Shingles vaccine, but this leaves our patients out of pocket as it's not provided for by the HSE, this means its not covered by medical card or the Drugs Payment Scheme.

In the UK the vaccine is available from the NHS
From 1 September 2023, the NHS vaccine programme is being offered to the following:

Healthy people aged 70 to 79 years who have not yet been vaccinated

People aged 50 years and over with a severely weakened immune system

Healthy people aged 60 to 70 years will become eligible for the vaccine over the next 5 years, when they turn 65 or 70 years

CLL Ireland encourages you to highlight your concerns at this inequity.

Please use the link to add your voice.

Herpes Zoster (shingles) vaccination health technology assessment: Public consultation | HIQA Herpes Zoster (shingles) vaccination health technology assessment: Public consultation Status: Published on 19 Mar 2024 Download Document View Press Release The video provider requires that you accept marketing and statistics cookies in order to view this video. Herpes zoster, which is commonly know...

Only a few more weeks left to fill in the Lymphoma Coalition Global survey for CLL, lymphoma patients and their care partners.

We now have 85 responses from Ireland but we need 100 to get a country specific report.
This important data will be used to drive change to improve the lives of our community.
Your experience needs to be heard.

Also working collaboratively with our national and international friends with comparison reports.
Irish Cancer Society

Please take the time to complete the survey and share.



https://lymphomacoalition.us12.list-manage.com/track/click?u=20baf436c8e46a7cab7d035ec&id=be18b34cde&e=66b50f6752

On Rare Disease Day we call for action for people living with a rare disease to have equal opportunities to realise their full participation in family, work, and social life.
Though lymphoma is the most commonly occurring blood cancer and the third most common childhood cancer, it is still considered a rare disease. There are over 80 subtypes of lymphoma, each with its own unique characteristics, treatment options, and prevalence rate. Some subtypes are more common than others, and some are extremely rare.

One main challenge someone affected by a rare lymphoma might experience is that there are fewer standard treatment options for rarer lymphomas. This means they can be difficult to treat or diagnose. It is critical that patients be informed about their subtype so they can better understand their diagnosis and treatment options and more effectively source relevant, case-appropriate information.
Lymphoma Coalition believes that access to life-saving diagnosis, treatment and care should be equitable for all – no matter where you live, your income, your ethnicity or gender.

To learn more about visit: https://www.rarediseaseday.org/