Hemophilia is a rare blood disease and, for this reason, there are a series of incentives for patients, including exemption from the cost-sharing of health care (co-pay) for all diagnostic tests, therapies, medical devices and rehabilitation interventions necessary for their management. People with hemophilia are also entitled to certain types of protection in terms of welfare and work, and the recognition of the state of disability based on the severity of their condition.
In order to ensure specific forms of protection for people affected by rare diseases, the Italian National Network for the Prevention, Surveillance, Diagnosis and Treatment of rare diseases has been established. The right to exemption is recognized by the patient’s Local Health Unit (ASL) of residence, based on the diagnosis of the disease certified by a clinic belonging to the network for rare diseases expert for that specific disease or group to which it belongs.
The patient for whom the diagnostic suspicion of a covered rare disease has been formulated by a specialist of the National Health Service is addressed by the specialist based on information from the competent Interregional Referral Center to the clinics of the network that can make a diagnosis of the specific disease or group of diseases. The patient who has been diagnosed with a rare disease by a network facility can ask for the recognition of the right to exemption to the local health unit of residence, attaching the certification issued by the facility. Some Italian Regions have autonomously provided for the free supply of drugs for rare diseases or other products, even if these are not classified as drugs. To know the details of these provisions we recommend contacting directly your Local Health Unit or regional authorities.
Although hemophilia can be managed today in the best possible way by patients, it could, over time, lead to a certain degree of disability. In this case, hemophiliacs can take advantage of the rights provided for by the Italian law no. 104 of February 5, 1992, for the protection of disabled people, in terms of care and rehabilitation, right to study and work, mobility and transportation, tax benefits and much more.
Law n.104/92 also provides facilities for working parents of disabled children, both in terms of leave and economic benefits.
Italian Legislative Decree no. 151 of March 26, 2001 on the safeguard and support of motherhood and fatherhood regulates leaves, rest, and the protection of the workers for maternity and paternity. “Leave for child’s illness” means a worker’s optional leave from work for the illness.
Finally, Italian Law 210/92 protects hemophiliacs in terms of compensation for individuals affected by irreversible complications due to transfusions and administration of blood products.
References
- Ministerial decree containing the “Regulation for the establishment of the national network of rare diseases and exemption from participation in the cost of related health services” pursuant to article 5, paragraph 1, letter b) of Legislative Decree no. 124 of April 29, 1998.
- http://www.salute.gov.it/portale/esenzioni/dettaglioFaqEsenzioni.jsp?lingua=italiano&id=205
- Law 210/92, Law no. 210 of February 25, 1992 (Italian Official Journal no. 55, March 6).
- Law n. 104 of February 5, 1992, “Framework law for assistance and social integration (Published in Italian Official Journal no. 39, February 17, 1992, Ordinary Series)
- Legislative Decree no. 151 of March 26, 2001, Consolidated text of the legislative provisions on the safeguard and support of motherhood and fatherhood, pursuant to article 15 of Law no. 53 of March 8, 2000