A family in Sept-Îles, struck by a rare disease, is experiencing logistical and financial “hell” due to the lack of specialized medical resources in their region, which forces them to make long and costly trips to major centers.
Dany Richard and Bianka Guérault had to multiply the trips, mainly to Quebec (8 hours drive) and sometimes Montreal (11 hours drive), to have the multiple family sores investigated and treated.
In addition to the mother, three of their four daughters have Loeys-Dietz syndrome, an incurable disease that presents serious complications: “tortuous” vascular tissue, fragile skin, allergies, joint laxity, migraines, among others.
Their oldest child is spared, but suffers from Elhers Danlos syndrome, which has several similarities.
For the past seven years, the couple have counted at least a dozen trips to see specialists in major centers, most often by car.
Over the years, he claims to have swallowed tens of thousands of dollars in these trips, but also in drugs, pharmacy products, dental care or lost wages.
They say their situation has become “hell”, claiming for example that they have already delayed important outside medical appointments for lack of money, despite certain reimbursements offered by the Integrated Center for Health and Social Services ( CISSS) of the North Shore.
“There is no equity between you and me,” believes Mme Guérault, convinced that, if she lived in a big city, her family would benefit from better care. Local doctors often seem overwhelmed by illnesses they are unfamiliar with, says the 38-year-old woman, who does not work but has a disability pension.
The government transportation and accommodation program provides, among other things, reimbursements ranging from $ 50 to $ 70 per night at the hotel, $ 4.75 per meal, per person ($ 3.75 for lunches), and 0, $ 29 per kilometer for car trips.
For the first time, the CISSS will pay the six members for air travel during their next trip to Montreal at the end of the month, but the couple remain convinced that these allowances are far from reflecting the real cost of travel. The reimbursement for the hotel, for example, seems paltry.
Exhausted, the family demands better care quickly. “If the solution is to send us to Montreal, although they will move us there,” said Richard, a factory worker.
For reasons of confidentiality, the CISSS de la Côte-Nord does not comment on this particular case.
“We are aware that current programs may not cover all costs,” said spokesman Pascal Paradis in an email sent to Newspaper.
The difference between expenses and allowances “can generally be considered medical expenses eligible for a tax deduction,” he said.
The organization also points out that transportation and accommodation programs are based on ministerial directives.
Specialists are lacking in the region
There is no point in trying to see a neuropsychologist, allergist or gastroenterologist in Sept-Îles. There are none, confirms the Côte-Nord Integrated Health and Social Services Center (CISSS).
These specialists, whom the Richard-Guérault family had to consult at one time or another, are simply not identified in the health network workforce plan for the Sept-Îles region.
Difficult to recruit
The population does not justify the presence of certain specialties, explains the health center. In other cases, it is the difficulty in recruiting professionals which explains the lack of staff in certain disciplines.
Sept-Îles currently has 34 medical specialists, while the plan calls for 50. For example, three anesthesiologists, two pediatricians and three radiologists are missing.
The organization nevertheless considers itself well equipped to respond to patients who have special needs, in particular thanks to professionals working in rehabilitation and physical impairment.
At the Regroupement québécois des maladies orphelines (RQMO), the director general and geneticist, Gail Ouellette, deplores the fact that people suffering from a rare disease are doubly penalized in the region.
Lack of knowledge
“There is a lack of specialists, but also, even when there are specialists in the regions, there is a lack of knowledge and information on these diseases,” she points out.
She says she is “not surprised” about the case of the Richard-Guérault family. “It’s very difficult financially, and it’s worse in the regions […]. Someone who has a Loeys-Dietz in Montreal, he doesn’t pay for all that, “she said.
The RQMO has been calling for the implementation of a Quebec strategy for rare diseases since 2010 to promote better patient care. The Legault government has recently shown openness to these claims and is reflecting on this issue, said Mme Ouellette, who is optimistic.
The group believes that improving care first requires education and awareness among health professionals. In the regions, it advocates the much more frequent use of telemedicine.
Specialties for which there is no doctor in Sept-Îles
- Allergy / immunology
- Denturology (service offered privately, outside the CISSS)
- Medical microbiology