By Chloe Becqwort | Mar 8 2021 | Planète Crabe
Peritoneal cancers are rare diseases little known to the public and the medical world. Faced with a lack of information on these tumors, Patricia Pichon co-created the AMARAPE association. Alongside her, the RENAPE network organizes the treatment of these diseases throughout France under the coordination of Laurent Villeneuve. Joint interview.
Patricia Pichon, co-founder of AMARAPE, Laurent Villeneuve, coordinator of RENAPE
What prompted you to create AMARAPE and RENAPE?
Patricia Pichon: We created the association with two other patients because we were directly affected by these diseases. We were taken care of by specialized centers, but there were diagnostic errors. The available information was fragmented, anxiety-inducing, and not necessarily scientifically verified… We wanted to facilitate access to information and specialized care and prevent patients from having a somewhat chaotic journey before receiving treatment.
Laurent Villeneuve: In the 1990s, there were two centers interested in peritoneal cancer: Lyon-Sud and the Gustave Roussy Institute. A new chemotherapy technology emerged. Peritoneal diseases have a locoregional evolution, meaning only in the abdomen, so Professor François-Noël Gilly developed intraperitoneal chemotherapy that does not go through the bloodstream. This chemotherapy is heated, so it’s called HIPEC: hyperthermic intraperitoneal chemotherapy. This technology developed in different centers in France, and we started to develop a network. RENAPE was born a bit more officially thanks to the Cancer Plan set up by the National Cancer Institute (INCa), which issued a call for applications in 2009. Lyon-Sud applied, and the project was accepted. Before that, it was a “group of HIPEC surgeons,” friends who were surgeons, but nothing was formalized.
AMARAPE
- Association against rare peritoneal diseases
- Date of creation: 2007
- Missions: Facilitate access to information on rare peritoneal diseases, support patients and their relatives, provide a helpline to talk to former patients, and fund research.
- Website: https://www.amarape.com/
RENAPE
- National network for the treatment of rare peritoneal tumors
- Date of creation: 2009
- Comprises: 2 expert clinical centers, 6 competence centers, and 21 specialized structures throughout France.
- Missions: Organize access to diagnosis and treatment of rare peritoneal diseases, hold multidisciplinary consultation meetings, promote research, and improve knowledge of these diseases.
- Website: https://www.renape-online.fr/
How are patients and their relatives welcomed by AMARAPE?
PP: Patients who contact us are either already diagnosed or awaiting diagnosis. They seek information, reassurance, and support. The context surrounding these diseases is particularly anxiety-inducing; patients do not know about HIPEC. We also offer a listening service: members and volunteers are trained by the Rare Diseases Alliance. The rarity of these diseases is difficult to manage: one feels alone and isolated, so we look for people who have had the same pathology. Former patients can help and reassure them about the long follow-up of the disease, which includes many examinations. Patients are anxious at each check-up, but the disease is insidious, and there are not always symptoms, so they are necessary.
There is no family reception as such by AMARAPE, but we have set up a family room at Lyon-Sud, for example. Relatives can go there when patients are hospitalized for several days. It allows families to meet and talk with psychologists and social workers to address issues related to returning home: patients are not always autonomous after hospitalization, so they need help and advice. They sometimes have questions about administrative matters, the right to be forgotten, or returning to work if an adjustment is needed or early retirement.
Is the rarity of the disease an obstacle to creating a patient community and research?
PP: We cannot really talk about a community due to the rarity of the disease. Moreover, contact with the association is mostly by phone. Patients focus on their own difficulties. Some, when they can resume their normal lives, put the disease aside. Others continue to support the association, get involved, and become volunteers.
LV: Rarity poses two problems. First, to understand the disease: dozens or even hundreds of cases would be needed for true representativeness. Then, to propose experimental treatments: to validate a new treatment, clinical trials must be conducted. The method is very effective when there are thousands of cases but less suited to rare diseases. It would take us ten years to test a treatment, while new technologies would develop in the meantime. This pushes us to innovate. Moreover, the current reference treatment for the disease is surgery. So, it is not possible to use placebos: we will not open and close a belly without doing anything.
Are patients directly put in contact with AMARAPE and RENAPE when diagnosed?
LV: Patients reach RENAPE in very variable ways. Either the patient is in a peripheral center outside the network, and their doctor has heard of RENAPE and has the reflex to refer them for prompt care. Unfortunately, some patients go through one peripheral center, then a second, then a third, and arrive at RENAPE “too late,” the disease already well advanced. It’s not over, but it’s harder to treat. The goal is for the patient to be referred to RENAPE as soon as there is a suspicion, as early as possible and in the nearest center.
PP: Examples of patient journeys are extremely varied. Sometimes general practitioners more curious than others refer to Rare Diseases Info Service. There, AMARAPE and RENAPE are identified and connected with the patient. We wish doctors would accept being in doubt; they cannot know all diseases, so they need to know rare disease platforms. Regarding AMARAPE, there are leaflets of the association in all specialized centers. Doctors and surgeons who perform the interventions know us and sometimes suggest patients contact us if they seem anxious or worried.
How does the cooperation between AMARAPE and RENAPE work? What do you gain from it?
PP: We exchange a lot. We need RENAPE’s knowledge to validate the relevance of our actions, and doctors need us to recognize theirs. We need each other. AMARAPE is a recognized association that brings the patient’s and their relatives’ perspective, while RENAPE brings the scientific perspective, validation, and appropriate care. The association participates in validating HIPEC and cytoreductive surgery by representing patients’ voices to the High Health Authority (HAS). And our information is scientifically validated thanks to RENAPE.
LV: This partnership allows for both perspectives to be presented. This dual vision is very useful and sought after. Authorities and the ministry are interested in it concerning patient care, and international scientific groups seek our expertise and experience to set up similar centers and associations. It is truly a strength that we emphasize.
Rare Peritoneal Diseases
The peritoneum is a membrane lining the viscera, abdominal wall, and pelvis. Various rare diseases can affect this part of the body without their cause being formally identified. There are an estimated more or less 200 new cases diagnosed each year. Since cytoreductive surgery – which removes visible tumors – and hyperthermic intraperitoneal chemotherapy (HIPEC) – which removes invisible tumors – became the reference treatment, the prognosis for patients has significantly improved from less than a year to about 60 months.
What does your call for projects to develop research involve?
PP: Since we obtained recognition of general interest in 2014, donations have increased in quantity and value. Thanks to this, we have gradually set up grants to fund research. In recent years, we offer two grants of €10,000 each. The call for projects asks researchers: “What are you doing to better know, understand, and manage these diseases?” Candidates fill out a document, and their answers are submitted to experts outside France – most candidates come from the RENAPE network, so we seek external advice. They validate the relevance and interest of the work. Based on this, AMARAPE chooses the laureate who will be invited to present their work and results at the general assembly.
LV: It is very important to support research. We need projects to go further on the genetics of these cancers. We seek to understand why the disease recurs faster in one patient than another, for example. There are still avenues to explore. The association is useful to initiate projects in this new era. International experts are willing to help us because they know the network is dynamic and the association is behind it. The call for projects allows for research supported by an association, thus anchored in patients’ issues to bring real solutions. It links experts and patients, keeping a foot in reality.
On your websites, it says: “AMARAPE and RENAPE work together to raise awareness and recognition of rare peritoneal diseases.” What do you mean by “raise awareness and recognition”?
LV: As Ms. Pichon said, there are many rare cancers. Patients suffer from isolation. We want to raise awareness among the general public so that people know who to turn to for proper care. We also seek recognition from authorities and institutions. Nothing happens without resources. We need resources to sustain the network and show that these cancers exist. We have implemented initial actions that need improvement.
PP: Raising awareness means talking and being present in places and instances related to diseases. We create several entry points. We participate in joint actions with the Rare Diseases Alliance at scientific conferences. We benefit from HAS recognition to bring the patient’s perspective and be a constituted association. We want to make information accessible, and today that means through the Internet – we are currently revamping our site.
LV: If we are both talking to you today, it’s to raise more awareness about this cancer and this association. Consequently, they will be more recognized, and this action repeated several times will make a difference.