Thalassaemia International Federation
The Thalassaemia International Federation, safeguarding the rights of the global thalassaemia patient community, welcomes the Report prepared by WHO in view of high-level meeting of the UN General Assembly on Universal Health Coverage in September.
Through this statement, we would like to ensure that in addressing this high priority, Member States do not leave behind significant but often neglected rare diseases, like thalassaemia.
Rare diseases are mostly chronic, highly complex and severely disabling diseases that present multiple comorbidities and affect life expectancy. The rarity of these diseases often results in delayed diagnosis and intervention that increase morbidity and mortality. The lack of appropriate care engenders inequalities and difficulties in access to treatment, often resulting in significant social and financial burden on patients, their families and national health authorities.
To successfully implement Universal Health Coverage, we solemnly request Member States to:
* ACKNOWLEDGE the severity of the problem and take action by including rare diseases in the Agenda of the upcoming high-level meeting of the United Nations General Assembly on Universal Health Coverage;
* INVEST on transformative technologies which are considered as a means to render national health systems accessible and efficient;
* PROMOTE national strategies and plans for the management of the multiple needs of patients with rare diseases, including patients with thalassaemia;
* ADVOCATE for the adoption of the WHO fair pricing approach by pharmaceuticals in order to guarantee access to safe and affordable orphan drugs and to novel therapies, such as genome-related therapies;
* DEVELOP synergies to increase:
a) their own negotiating power for procuring new medicines and health technologies and;
b) the access of patients to timely, appropriate and effective diagnosis and treatment.