PERSONALISED MEDICINE AWARENESS MONTH – NOVEMBER 2018
Too many people diagnosed with cancer do not have access to the personalised treatment they need and deserve. This can be due to a lack of awareness and education amongst patients and healthcare professionals, or a variety of access challenges such as pricing, reimbursement or limited availability. This needs to change.
Introduction to ECPC Personalised Medicine Awareness Month 2018
What is Personalised Medicine Awareness Month?
Too many people diagnosed with cancer do not have access to the personalised treatment they need and deserve. This can be due to a lack of awareness and education amongst patients and healthcare professionals, or a variety of access challenges such as pricing, reimbursement or limited availability. This needs to change. Molecular testing is the key to unlocking these treatments and now is the time for change. This is why ECPC launched a pan-European Personalised Medicine Awareness Month to bring about new conversations on treatment options for European citizens.
In 2018, throughout the month of November, the European Cancer Patient Coalition promoted the importance of access to cancer molecular testing during a month-long advocacy campaign, Personalised Medicine Awareness Month: Cracking the Cancer Code.
The European Cancer Patient Coalition and our member organisations believe that people living with cancer should be informed about all available treatment options and be empowered to make the best decisions for their health, together with their healthcare team. That’s why ECPC is working towards ensuring all Europeans with cancer and at risk of getting cancer have appropriate access to cancer molecular testing. This will help to promote better diagnosis, more targeted follow up and a truly personalised treatment.
During Personalised Medicine Awareness Month 2018, the European Cancer Patient Coalition and its members united to call for:
- Increased access and decreased waiting times for high-quality molecular testing to make personalised healthcare more of a reality across Europe;
- More information to educate and empower patients and caregivers around the potential and availability of molecular testing;
- A harmonised and more efficient regulatory framework across Europe which could increase access to, and potentially reduce the cost of, molecular testing.
What is Personalised Medicine?
Traditionally, cancer treatment has focused on the location of the cancer in the body. Depending on the type of cancer, patients receive specific treatments such as chemotherapy, surgery, radiotherapy or immunotherapy. Unfortunately, not every patient with cancer responds to these treatments in the same way: What works for one person may not work for another, and some may suffer serious side effects from treatment that is also ineffective. This can lead to emotional and financial distress, placing a serious burden on people with cancer, as well as on their families, carers and health systems.
Now, thanks to breakthrough technological advances, it is becoming possible to treat people with cancer based on ‘who’ they are, not ‘where’ their cancer is located. Improved treatment and quality of care means fewer side-effects and distress, as well as faster access for people with cancer to new and more effective treatment options – all of which improve the quality of life for people with cancer.
Molecular testing is a way to do this, and it is already available for many types of cancer. However, its use in Europe varies by country, because in many countries diagnostic tests are not used regularly in clinical practice and are therefore not reimbursed or available to all people with cancer.
Why does Personalised Medicine Awareness Month matter?
Each year, over 3 million people are diagnosed with cancer in Europe. We need governments to ensure the means to identify people who may benefit from more effective targeted cancer treatment, and avoid treatment-related toxicity where possible, all whilst helping to ensure the sustainability of our healthcare systems.
One such way to address this is with cancer molecular testing and personalised medicine, a targeted approach to the prevention, diagnosis and treatment of cancer. For instance, cancer biomarkers are molecules that are usually produced by cancer cells, which can then be detected in bodily tissues or fluids. They can be patient-specific, rather than tumour-specific, which means they can help identify people who have cancer or who are at risk of developing cancer, and help to select or predict those people who are likely to derive therapeutic benefit from specific treatments.
Awareness about cancer molecular testing remains low – only 23% of European doctors feel that their patients are always fully informed about molecular or biomarker testing. The use of cancer molecular testing in Europe also varies by country, because in many countries diagnostic tests are not integrated into clinical practice and are not reimbursed or available to all people with cancer. This needs to change.
Who is behind Personalised Medicine Awareness Month?
Personalised Medicine Awareness Month is an initiative of the European Cancer Patient Coalition (ECPC) – the largest European cancer patients’ umbrella organisation. ECPC is the voice of cancer patients in Europe. With over 420 members, covering all 28 EU member states and many other European and non-European countries, ECPC represents patients aﬀected by all types of cancers, from the rarest to the most common.
The European Cancer Patient Coalition, together with its members continued a month-long campaign throughout the month of November.
The European Cancer Patient Coalition is working in collaboration with European Alliance for Personalised Medicine, Cancer Drug Development Forum and International Quality Network for Pathology.
How will the campaign evolve?
The European Cancer Patient Coalition and its members were provided with a digital toolkit to advocate both at the National and at the European level. The toolkit was a complete and effective advocacy instrument as it informed our members on the importance of molecular testing and provided them with template letters to reach out to their local representatives with their demands. Social media material such as visuals and accompanying texts were also provided. In this way, thousands of patients all across Europe will be empowered to get the personalised medicine they deserve.
Have more questions? Please fill in the google form at this link and we will get back to you.
The European Cancer Patient Coalition gratefully acknowledges the support of AbbVie, AstraZeneca, Bristol-Myers Squibb, Cancer Drug Development Forum, Genomic Health, Johnson & Johnson, MSD, Roche, Takeda.
To download the toolkit in your language click here: