Throughout North America, the Healthcare system we all brag about has been challenged and stretched to a point of stressful breakage. It is failing many of us who have paid into an insurance system that cannot satisfy our health needs. Excuses are abundant, from we do not have enough funds, not enough staff, not enough doctors or surgeons to perform their tasks. Healthcare professionals are burnt out, living in a situation of constant stress, with a pressure cooking atmosphere ready to pop. What to do?
Rare Disorders are only studied, and R&B and remedies are found if it is profitable to the pharmaceutical firms in North America. 25% of rare disease patients wait 5-30 years for a diagnosis, while 40% are misdiagnosed. Only 5% of children with rare disorders have access to effective treatment. Walls of ignorance, economic blockage, and fatalism face those caregivers of the ill. Both the Financial and Healthcare system(one relies upon the other) will not provide the needed funds to fix what genetics and evolution have inflicted upon us.
Idea: Let’s look at Autism as an example of what to do. People who care for autistic children often pay 1500-3,500.00 per month for therapy and specialized schooling. Spending $40-60,000 annually is very common. What do these caregivers do when the child becomes an adult? There are no places to send them, and no funds are available to protect both caregiver and patient. Autistic adults can be very difficult to handle, and violent at times. Well since caregivers invest so much money into the care of their patients, how about getting them to invest in centers/hospitals that specialize in several rare diseases only? Invite corporate investment, even ownership. Who can say that a hospital that makes a profit is not a useful institution? Patients can be investors in the hospitals that serve them, as can all Ontarians/Canadians. University students specializing in psychology and other medical pursuits would be required to work in such hospitals receiving real-time education and getting paid for their efforts too. Hospitals can be places of real lived experiences, fulfilling the medical and financial needs of patients and their caregivers also.
Universal Medicine cannot be everything to everybody, and rare diseases will remain afterthoughts to both the medical and pharmaceutical industries so long as they remain just a few of the many needs out there in society. Specialized Hospitals employ caregivers and medical professionals specialized in rare disease management. Pharma can research and develop in real terms medicine specific to rare disease patients while sharing in the hospital’s profitability. The Hospital partners can be the provincial Government, municipal government, pharmaceutical firms, corporations, and the patient’s families also. Average Citizens can invest in these specialized centers, sharing in their healthcare successes. Socialized Medicine within a specialized profit-making institution. No one was turned away, or put onto a waiting list, but recipients of true customer service.
It is either this or those with rare diseases that are truly Sh*t out of Luck.
Steven Kaszab
Bradford, Ontario
[email protected]
