Italian White Paper on HD
The Huntington's Disease White Paper describes the history and main characteristics of Huntington's, highlighting how it affects the lives of individuals and families personally, socially and economically.
It was publicly presented on May 13, 2021 and represents a useful guide for those who want to know and try to understand the complexity of Huntington's disease, both as a person directly involved, as a socio-health worker, politician, or journalist.
Eight specific proposals to politicians emerged from the document:
1. To Include Huntington's disease in the National Dementia Plan;
2. To include Huntington's disease among those involving disability regardless of the evidence of motor symptoms, but with a more comprehensive assessment of neurological, psychiatric or behavioral symptoms and have the disability claim of people with Huntington's disease also reviewed by neurologists and/or psychiatrists;
3. To encourage the definition of PDTA (Diagnostic Therapeutic Assistance Plans) in all Regions, which take into consideration the need for multidisciplinary patient care both at hospital and territorial level, including evaluations and follow-up of psychiatrists and psychologists as well as a greater support from the General Practitioner;
4. Due to the objectives of the National Recovery and Resilience Plan (PNRR) which, in Mission 6 (Health), provides, among other things, a reform of proximity services and the definition of homogeneous standards for assistance in the area, recognize and guarantee greater synergy between home, social and health care, and psychological care for patients and families, which takes into account the specific needs of disabling diseases such as Huntington's disease;
5. As part of Mission 6 (Health), reform 1, investment 1 of the PNRR, which allocates a fund of 2 billion euros to the activation of 1288 "Community Houses" throughout the country by mid-2026, aimed at coordination of the offer of health services to citizens and families, identifying resources aimed at encouraging - within these structures - the creation of paths for relief, with adequately trained personnel to take care of people with disabling diseases such as the disease by Huntington;
6. To provide resources dedicated to the implementation of the new National Plan for Rare Diseases, since the previous one ended in 2016;
7. To recognize economic aid to families with people with disabling diseases such as Huntington's disease due to the high economic impact, the reduction in income they entail and the high expenses that families face;
8. To plan, design and finance a training plan for clinicians and healthcare professionals, to be implemented over the next three years, for a more adequate management of people with disabling diseases such as Huntington's disease.