Huntington’s disease (HD) takes a unique form in France. France has a reduced prevalence of 3 to 7 people in 100,000 compared to 10 in 100,000 people in the United States. Because of the small population in France, less than 2,000 people are diagnosed with HD, which makes a much smaller affected group than in the United States. This low prevalence makes it difficult for France to focus its efforts in either research or treatment of HD. On the other hand, France has what many consider to be the best healthcare system in the world, with its government subsidizing the majority of patient care through taxes on employers. Similarly, efforts for treatment and finding a cure for HD and other rare disease are centralized in a “reference center”, the teaching hospital Henri Mondor.
Insurance and Treatment
All citizens of France are required to subscribe to the national health insurance plan, which is funded from the revenue of the social security tax on workers and an even larger portion is paid through contributions from employers. Many people also purchase supplemental private insurance to cover dental, dermatological, optometric, and other specialized care. The French National Health Service generally refunds patients about 75% of their total healthcare costs. Despite this aid, healthcare can still be a great financial burden for patients with chronic conditions such as HD. HD falls within the long-term illness coverage plan known as the list of Afflictions of Long Duration (ALD30), which covers 100% of the costs of treatment for 30 chronic diseases or disease categories. Initially, the ALD30 plan was a purely a financial plan, but now following major reforms to the healthcare policy in 2004, the plan encompasses a treatment plan known as a “care pathway” for each of the 30 disease categories. The reform to the French healthcare system refocused treatment on the general practitioner who then refers patients to specialized doctors, such as neurologists for HD patients. The National Health Service will not fully subsidize patients who seek a specialist without consulting a general practitioner. In this way HD patients have a primary care physician in charge of their health from the start.
The care pathway for HD falls under category 9 of the ALD30, “severe forms of neurological or muscular conditions”. In the past ten years, this system in which the general practitioner acts as a gatekeeper to other practices has strengthened the bond between hospitals and specialized services, medical or otherwise. HD patients can receive advanced neurological and medical treatment, along with other non-medical services that are of use to HD patients such as: psychological, social, and genetic counseling. In a conversation with Dr. Jean Marie Fessler, president of a collection of 33 public health and medical establishments known as MGEM in France, he said that France’s resources for those with HD are “the best, but without doubt not sufficient”, noting that departmental homes, psychiatric care, and hospice care are all under the umbrella of fully subsidized care for those with incurable diseases.
While the guidelines for physicians and the care pathway for HD patients are sufficient, there is sometimes a disconnection between theory and practice. Because of a lack of patient education and community resources, care can be fragmented, and there is still no great incentive for the general practitioner to follow-up with the patient even though the infrastructure and resources are in place. Research also lags behind in France, even though the reference center for HD has a cohort of patients and runs clinical trials. Funding for research is a fraction of the funding put towards HD in the United States. This is due to France having a smaller affected population, smaller GDP, and less available funding overall.
A proactive HD patient can reap great benefits in healthcare in France. The burden is not financial so much as it is self-education and a commitment to seeking the many medical and social services. For a disease without a cure, the subsidized therapeutic treatment, counseling, and end-of-life care puts France among the leaders in the treatment of Huntington’s disease around the world.
The Global HD research and articles received partial support from the Bingham Fund for Innovation in the Program in Human Biology.
For an extensive overview of France’s management of chronic diseases, read Chapter 4 of the European Observatory’s Study Series.
W. St. Amant