It is estimated that 7,000 people with intellectual disabilities are affected each year by cancer. An issue that the Ligue contre le cancer has made one of its priorities. Interview with Christophe Leroux, director of development.
Handicap.fr: In May 2015, the League against cancer launches a crowdfunding campaign (crowdfunding) with the aim of creating the site “Oncodéfi” (article in link below) dedicated to the prevention of cancer in the deficient persons intellectual. Can you remind us of its purpose?
Christophe Leroux: In France, there is no specific documentation for people with intellectual disabilities related to cancer. “Oncodefy” aims to fill this void. Designed as a health education tool, it will contain information on screening, good practices to adopt, early diagnosis … All in a didactic way. There will even be the opportunity to listen to the content instead of reading it. People with mental disabilities need to be able to understand the information, but it is also an opportunity for health professionals to bounce back and share their experiences.
H.fr: Where is the funding?
CL: To be honest, we are very disappointed. This subject is hard to interest the general public and the media. The crowdfunding campaign is not over, it is still possible to make donations. And, if we fail to achieve our goal, we will restart the device in September 2015, including via social networks. We must challenge the press but also the public authorities. We rely on our network of nearly 700,000 members to relay the information. We wish to show our interest in these people who accumulate problems, cancer and disability. It’s really important.
H.fr: Why did the league decide to step up on this topic?
CL: Dr. Daniel Satgé, a specialist in cancers for people with intellectual disabilities, has been carrying out the Oncodefi project for seven years. If we compare with the general population, we observe an unbearable health inequality. Doing nothing is forgetting those people who have little or no access to prevention messages. We hope that the site is only the beginning of an ecosystem where we would like to bring together health professionals, general public and social workers to investigate this field. If we solve this inequality, we will solve all the others.
H.fr: Cancer in people with intellectual disabilities: how is the phenomenon quantifiable?
CL: Unfortunately, there is no study on the subject. However, it is estimated that, out of 1.5 million people with mental disabilities, in France, 7,000 of them are diagnosed with cancer each year. For information, this figure is 1,000 per day for the general population. It is also known that six out of ten patients are treated through screening and early diagnosis. It is estimated that patients with intellectual disabilities, who are too late in cancer progression, have less chance of recovery.
H.fr: Are these people more prone to cancer?
CL: Alas, yes. They are more often confronted with risk factors, such as alcohol, tobacco or obesity, which promote the development of cancers. In fact, some specialized centers provide cigarettes to their residents. I do not throw stones at them but it shows great failures in terms of awareness. In addition, in the case of people with intellectual disabilities, the messages penetrate less and they are very little informed. Society, in general, feels uncomfortable talking to them and advising them to stop smoking, to play sports. While saying not to drink to a pregnant woman or a child is more rooted in morals.
H.fr: How is screening difficult to implement?
CL: Letters are sent to invite the population to be tested for free in two cases: for colorectal cancer from 50 years and breast cancer in women over 50 years. Many already have a hard time understanding what it is, so imagine for people with intellectual disabilities! And if, in addition, they have no family … We often miss completely and their rate of participation in screening is insignificant. The report is almost identical concerning the taking of vaccines.
H.fr: It is sometimes difficult for them to express their ills …
CL: Indeed. First, they are not sensitized. A woman who has never heard of breast cancer will not be screened. Second, they also suffer from other ailments related to their disability. The hierarchy of traumas is not established in the same way.
H.fr: Do some cancers develop faster or more often than others?
CL: There are no statistics on this, but scientifically, no. It all depends on the way of life, as for everyone. There is no cancer of the mentally handicapped person.
H.fr: Oncologists and doctors are they trained in their care?
CL: For the most part, we have never explained to them why this problem is important. It’s not malevolence, it’s just that they do not know. This is why bringing together health professionals and social workers on one platform is interesting; they will be able to share their knowledge on points to which they have not necessarily been sensitized. In the long run, it is hoped that this can be good for health in general, diabetes, cardiovascular disease, not just cancer.
H.fr: Are there specialized centers that are better able to accommodate these people?
CL: In the 19 cancer centers, for example, there is most often adequate care; this usually depends on the department heads. The situation is identical in most public hospitals, but specific devices are too rare.
H.fr: How do you adapt as a doctor?
CL: It is essential to have an accessible dialogue based on the person’s disability. Do not hesitate to get help from people, like relatives.
H.fr: Is there a specific cancer treatment process in place for some? Especially for those who may be violent or do not want to be treated.
CL: In France, anyone should benefit from the best treatment; there is no reason that it is not the case. Then, again, the dialogue is essential to make the patient understand the disease because he may very well refuse treatment. In some cases, the problem may arise when two treatments are combined: the one related to disability and the one related to cancer. If possible, the choice must be made to the patient.
H.fr: Should we promote a particular treatment?
CL: There is no rule; it all depends on the type of disability. As we say in jargon, we evaluate the benefit-risk. If the treatment of cancer is vital in the short term, it will pass the one related to disability. On the other hand, for a schizophrenic for example, if the risk of a passage to the act is more important in case of treatment of the cancer, one will adapt the various treatments to all the constraints. But, as for the general population, choosing can be the result of long discussions where all the parameters must be taken into account. And decisions are not always easy to make.
H.fr: In case of chemotherapy, is treatment more difficult to live with?
CL: As for the general population, the reactions are relatively different. It can be observed, however, that people with intellectual disabilities are generally less suspicious of doctors.
H.fr: Conversely, can cancer cause a mental handicap?
CL: Indeed, and this, from the infant to the elderly person. When the brainstem is affected, this can lead to many deficiencies; for example: blindness, impaired cognitive abilities … But, rest assured, the progress is spectacular including for cancer sites that previously could have serious consequences “peripheral”. Cancer is a serious disease but one that can be cured more and one that can be avoided even further. It is up to us, collectively, to ensure that people with intellectual disabilities are not excluded from all progress (treatment, prevention, screening, etc.). This is one of the bets the Oncodefi team wants to take up with the league.