Who and what do you know?
One of the most frustrating aspects of this journey is the lack of access to information. It’s what drives me to make a change for others with rare cancer diagnosis, so they have easier access to the information they need.
Right now, we are looking for your help with connections to the following:
Oncologists that specialise in rare cancers
You might assume medical professionals are up-to-date with the latest cancer research but the truth is they are so busy with oversubscribed clinics that they just don’t have the time. That means in many cases, patients must look for answers themselves.
Irish policy makers and decision makers in the HSE
On 21 December the European Commission (EC) approved the use of durvalumab (Imfinzi ®) plus chemotherapy (gemcitabine plus cisplatin) as the first line of treatment for adult patients with unresectable or metastatic Biliary Tract Cancer (BTC).
Biopsy results prove my cancer IS responsive to this drug and will give me a fighting chance to beat this disease.
However, in Ireland, the HSE will only cover the cost if durvalumab treatment for patients with conditional non-small cell lung cancer (NSCLC).
There is a process for having the cost of drugs approved by the HSE. We want to know more about this process, and who we need to speak to for the cost of durvalumab to be covered by the HSE, in alignment with the latest EC recommendations.
Employees at Astra Zeneca
Astra Zeneca is the drug company that manufactures durvalumab. We want to know what progress they have made with decision makers in Ireland to have the cost of durvalumab covered for treatment of cholangiocarcinoma.
Do you know anyone that works at Astra Zeneca who can speak with us?
People who work on European projects
Given the EC approved the use of durvalumab and chemotherapy for the treatment of cholangiocarcinoma in December 2022, there may be other countries in the EU that are already funding the cost of this treatment for cholangiocarcinoma sufferers. If so, I have the opportunity to apply under the Treatment Abroad Scheme to receive the drug in another EU country.
We want to know if there are other countries that are currently delivering the EC approved treatment of durvalumab (Imfinzi ®) plus chemotherapy (gemcitabine plus cisplatin) as the first line of treatment for adult patients with unresectable or metastatic Biliary Tract Cancer (BTC).
Who do you know that works with the Treatment Abroad Scheme, or works on European projects that might know, or know how to find out about, other EU countries offering this treatment?