Croatian Melanoma Society (Cro. Udruga Melanom, UM) is founded in 2016. UM promotes patient’s rights and needs, helps gain access to valid and correct information and uses resources to facilitate in accessibility of pharmacological solutions for melanoma patients by Melanoma Patient Advocates and Melanoma Patient Advocate Experts, and by forming Melanoma Patient Advocates and Melanoma Patient Advocate Experts.
WHAT ARE UM AIMS?
A patient advocate, by definition of www.cancer.gov, is a person who helps a patient work with others who have an effect on the patients health, including doctors, insurance companies, employers, case managers, and lawyers. A patient advocate helps resolve issues about health care, medical bills, and job discrimination related to a patient condition.
Melanoma advocacy groups worldwide, as well as UM, try to raise public awareness about important melanoma issues, such as need for support services, education, research, and the most important issues, access to novel therapies e.g. target and immunotherapy. Today, melanoma patients in Croatia have a very limited access to the right treatments and drugs. Target therapy is limited in Croatia and immunotherapy is not available at all. This is not just a Croatia’s problem, but a problem in general of the Central European Countries, which is a reason this society was started – to show our patients, as well as our clinicians, that we care and that there are medications and resources that can prolong patient’s lives and raise overall survival rates as well as patient’s quality of life. This is what we are trying so hard to do, through a multidisciplinary team and approach.
OUR CURRENT PROJECTS
- ACCESS TO DRUGS
Survival in Melanoma depends, among early diagnosis, on access to drugs. If this is not considered right, people will continue to die and this time not because there is no drug but because we are unable or unwilling to afford it.
In many EU countries, not all of the 8 EU-approved mono-therapies and two combination Melanoma therapies are actually available for patients. Even wealthy countries now restrict access for Melanoma patients, so it is a problem that concerns all EU.
Therefore, terms»Value» and «Affordability» directly affect Melanoma patients althoug this is not (so) obvious.
Health Technology Assessment (HTA) looks whether a new drugs is value for money for society. The English NICE might be the most known one but nearly all of EU countries have HTA bodies today.
Originally put in place as a barrier to hold back new expensive drugs without real benefit is all «value». What «value» however is and how it is determined- is something else and differs from country to country. At a global HTA policy meeting- the general consensus there is that the patient preferences is not enough taken into account.
The term «this drug value but it’s too expensive» restrictes access to drug despite the drug being value for money. Approval of the drug should be considered as scientific decision for new drugs without considering the budget impact of them and political will.
- RISING MELANOMA KNOWLEDGE IN SCHOOLS IN COUNTY OF ZADAR
- PART OF INTERREGIONAL PROJECT CROATIA-BOSNIA AND HERCEGOVINA AND MONTE NEGRO «Early detection of skin, mucosal and ocular melanoma in cross-border area (MELAdetect)”
DIO PROJEKTA PREKOGRANIČNE SURADNJE INTERREG 2014.-2020. Hrvatska- Bosna i Hecegovina- Crna Gora „ Rana detekcija kožnog, sluzničkog okularnog melanoma u područja granične suradnje (MELAdetect) “
WHO ARE WE?
Behind our UM society stands foremost a group of patient advocates and patient advocate experts who are passionate about what they do and what they are trying to achieve. Our members are:
-Specialist of Dermatology and Venereology Assist.Prof. Zrinjka Paštar, MD, PhD, who works, among other issues in dermatovenereology, on early diagnosis and prevention of melanoma, and is the president of UM;
-Specialist of Ophthalmology Assist.Prof. Suzana Konjevoda, MD, PhD, whose interest is in the area of a rare type of melanoma, ocular melanoma;
-Nutritionist and pharmacist Ana Ljevar, PhD, MBA with specific interest in novel therapies, diet in melanoma patients, the role of vitamin D, and HTA.
-Economist and librarian Ivana Škunca, Bacc. oec. whose strong sides are public relations and promotion; and
-Nikolina Nižić, Bacc. Social work, Master of Social Policy, whose fields are palliative care and the psychological help for the patients and their families.
All of us, besides specific areas of work within the society, have strongly dedicated to enable a much better quality of life for melanoma patients in Croatia, as well as their close ones. We believe that the right information at the right time is the key to a successful network that can make a difference and influence changes to happen.