Rare Diseases: 1 in 5 Seek Regional Care; Health Travel for Tumors
- ROME – Many patients, notably those with rare diseases or cancer, face notable hurdles in accessing adequate medical care, often requiring travel far from home.
- Data presented at the meeting, organized by Senator Orfeo Mazzella, a member of the Social Affairs Commission, underscored the challenges.
- The meeting included representatives from CasAmica, Codice Viola, and UNIAMO-Italian Federation of Rare Diseases, organizations dedicated to supporting patients who must travel for medical care.
Healthcare Access: patients Forced to Travel for Treatment
By [Your Name/News Agency Name]
ROME – Many patients, notably those with rare diseases or cancer, face notable hurdles in accessing adequate medical care, often requiring travel far from home. A recent Senate meeting highlighted the financial and logistical burdens these journeys place on individuals and families.
Data presented at the meeting, organized by Senator Orfeo Mazzella, a member of the Social Affairs Commission, underscored the challenges. For example, one in five patients with rare diseases – and one in three minors with such conditions – must seek treatment in other regions. Pancreatic cancer patients frequently travel for surgery, incurring logistical costs estimated between €3,000 and €5,000.
The meeting included representatives from CasAmica, Codice Viola, and UNIAMO-Italian Federation of Rare Diseases, organizations dedicated to supporting patients who must travel for medical care.
The Necessity of Out-of-Region Care
While patients ideally should receive care close to home, certain circumstances necessitate traveling to other regions. these include the need for highly complex surgical interventions, the unavailability of quality treatment options locally, or the requirement to access specialized centers for rare disease diagnosis and treatment.
Health migration: official Figures
the “Report on Interregional Health Mobility 2023” by Agenas, in collaboration with the Ministry of Health, reveals the extent of this issue.Last year, nearly 670,000 hospitalizations occurred outside patients’ home regions, totaling €2.88 billion in expenditure. This figure excludes the significant logistical costs borne by patients and their families.
The report indicates a general trend of patients traveling from southern regions to the north for treatment.
Rare Diseases: A Disproportionate Burden on Minors
A recent report by UNIAMO highlights that 20% of adult patients with rare diseases must travel for care. This number rises to one in three for children and teenagers. Annalisa Scopinaro, president of UNIAMO, emphasized the physical, psychological, and economic impact of these journeys.
“these are often very long journeys that negatively impact from a physical, psychological and economic point of view,” Scopinaro said. She also noted the increasing availability of innovative therapies administered in specialized centers will likely increase the number of patients traveling for treatment.
Scopinaro stressed the need for economic support, telemedicine initiatives, and affordable temporary housing solutions. “To move are entire families, even for long periods or repeatedly during the year. From our investigations it emerged that the impact of the costs on the family is remarkable, given that there are often no reimbursements from the region of residence.”
Voluntary Organizations Fill the Gap
Voluntary organizations often provide crucial support to patients and families navigating these challenges.CasAmica, for example, has been providing accommodation and support since 1986. Their data reflects the growing need, with a 25% increase in support requests in 2023. In the 2023-24 period, they provided over 40,000 nights of accommodation and have hosted nearly 150,000 people in their 40-year history.
Southern Italians Seek Healthcare in Other Regions Due to Disparities
An estimated 1 million residents of Southern Italy and its islands have sought medical treatment in regions outside their own, driven by the perception of better healthcare options elsewhere, according to a recent study.
Healthcare Disparities Drive Migration
The “Study on Health Migrants,” focusing on citizens aged 35 to 65 from Calabria, Puglia, Campania, Sicily, and Sardinia, revealed that 51% of those seeking care elsewhere did so for access to a superior healthcare system. Another 39% cited the presence of more qualified doctors as their primary motivation. A significant 32% reported the ”concrete impossibility of receiving adequate care” for their specific condition in their home region.
Certain cancers and rare diseases are particularly susceptible to this phenomenon of health migration.
Stefano Gastaldi, a general manager, noted the study highlights a “disparity of access to care” between Northern Italy and the South and islands. He added that his organization witnesses firsthand the challenges faced by individuals who must undertake frequent, long-distance travel, resulting in emotional and financial strain. The study also found that 60% of respondents reported high travel and accommodation costs, while 58% expressed a need for reduced prices.
Pancreatic Cancer Patients Face High Costs
Oncological patients, particularly those with pancreatic cancer, often relocate for treatment. pancreatic cancer ranks as the fourth leading cause of cancer-related deaths in the Western world.
Piero Rivizzigno, president of Code Viola, an association dedicated to improving the lives of pancreatic cancer patients since 1986, stated that while the incidence of pancreatic cancer in Italy is relatively low (0.0023% of the population), it remains a leading cause of cancer deaths. rivizzigno noted that only three regions – Lombardy, Veneto, and Tuscany – offer a level of surgical care appropriate for the complexity of the disease.
This disparity leads to significant health mobility, with an estimated 6.5 million euros in costs transferred between regions. Rivizzigno emphasized that figures from Agenas do not account for the considerable logistical expenses incurred by patients and their families who travel for treatment. These costs, estimated between 3,000 and 5,000 euros, cover travel, accommodation, and pre- and post-operative specialist visits, placing a burden on families. Voluntary associations often provide some support.
Rivizzigno urged regions lacking adequate pancreatic cancer treatment facilities to provide financial assistance to patients and families forced to relocate and to invest in strengthening treatment programs, including establishing dedicated Pancreas Units.
Legislative Action Proposed
On Feb. 12, a group of senators, led by Sen. Orfeo Mazzella, introduced a motion calling for specific measures to address the costs associated with patient transfers and to ensure access to adequate care and psychological and social support within patients’ home regions.
“It is unacceptable that in our country the right to health is not guaranteed for everyone likewise,” Mazzella said during a Senate meeting, emphasizing the need for equal opportunities in healthcare.
Mazzella pledged to work on legislation that provides concrete assistance to families facing accommodation costs for health reasons and supports dedicated reception houses. He noted that current regulations equate these non-profit facilities with “holiday homes,” leading to significant management costs.
The proposed legislation aims to establish distinct regulations for organizations dedicated to providing lodging for individuals relocating for intensive medical care and to create a fund to financially support health migrants,particularly to offset hospitalization costs.Mazzella highlighted that national expenditure on health mobility exceeds 5 billion euros, yet there is no formal legislative recognition or assistance for those facing economic and social isolation outside their home regions.He described the situation as “unacceptable in a civilized country,” where patients are often left without support or shelter.
Updated April 11, 2025
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Answer each question concisely.
Here’s a Q&A-style response based on the two articles:
Healthcare Access Challenges in Italy: A Q&A
Q: What are the main reasons patients in Italy are forced to travel for medical treatment?
A: Patients frequently enough travel for:
Highly complex surgical interventions.
Lack of quality treatment options locally.
Access to specialized centers for rare diseases.
Q: Which regions in Italy are most affected by this “health migration”?
A: The trend is generally from southern regions to the north.
Q: What is the financial impact of patients traveling for treatment across regions?
A: In 2023, nearly 670,000 hospitalizations occurred outside patients’ home regions, totaling €2.88 billion in expenditure. This does not include logistical costs borne by patients and families.
Q: Which specific diseases are mentioned as requiring out-of-region treatment?
A: The articles specifically mention:
Rare diseases
Pancreatic cancer
Q: What is the impact of health migration on pancreatic cancer patients?
A: Pancreatic cancer patients often relocate for surgery. Logistical costs are estimated between €3,000 and €5,000, excluding the costs of specialized visits before and after surgery.
Q: How does health migration impact minors wiht rare diseases?
A: Twenty percent of adult patients with rare diseases travel for care.This number rises to one in three for children and teenagers.
Q: What are the main concerns regarding the journeys of patients and their families?
A: The journeys have a negative impact on physical, psychological, and economic well-being.
Q: Are ther disparities in healthcare access between different regions of Italy?
A: Yes, the study highlights a “disparity of access to care” between Northern Italy and the south and islands.
Q: Why do residents of Southern Italy and its islands seek medical treatment elsewhere?
A:
51% seek it for access to a superior healthcare system.
39% seek it for more qualified doctors.
32% cite the “concrete impossibility of receiving adequate care” in their home region.
Q: What is CasAmica, and what role does it play?
A: CasAmica is a voluntary organization that provides accommodation and support to patients and families who must travel for medical care. They have hosted nearly 150,000 people in their 40 years.
Q: What actions are proposed to address the challenges of health migration?
A:
Financial assistance for patients and families.
Strengthening treatment programs, including establishing dedicated Pancreas Units.
Specific legislative measures to address costs and ensure access to adequate care, psychological support, and social support.
Q: What measures are being proposed in the senate to help health migrants?
A: The proposed legislation aims to:
Provide concrete assistance to families facing accommodation costs for health reasons.
Offer support to dedicated reception houses.
Create a fund to financially support health migrants,especially to offset hospitalization costs.
Q: What type of support do voluntary organizations provide?
A: Voluntary organizations provide:
Accommodation
Logistical support
Emotional support
Q: What is the incidence of pancreatic cancer in Italy?
A: The incidence of pancreatic cancer in Italy is relatively low (0.0023% of the population).
Q: What are the regions in Italy that offer an appropriate level of surgical care for pancreatic cancer?
A: Only three regions – Lombardy, Veneto, and Tuscany – offer a level of surgical care appropriate for the complexity of the disease.
Q: What are the major cost factors for health migration?
A: The main cost factors are
Travel.
Accommodation.
* Specialist visits
Q: are there any reimbursements from the region of residence?
A: From investigations, it emerged that the impact of the costs on the family is remarkable, given that there are often no reimbursements from the region of residence.