If you didn't see the story, you must be wondering "What exactly is Ehlers-Danlos syndrome?" Answer: It is a group of inherited disorders affecting connective tissues — mainly skin, joints and blood vessel walls. According to the paper, the disorder "affects one in 5,000, only some of whom suffer the worst symptoms." The paper goes on to claim that this translates into about 100 Ontarians with Ehlers-Danlos with 20 of those having symptoms so severe their lives are consumed seeking help from doctors who don’t know what to do.
A little bit of quick, ballpark math says that a province with population of some 13 million must contain about 2600 people touched by the genetic disorder. It is interesting the reporter only discovered 100 known Ehlers-Danlos patients in Ontario. A little googling reveals why: The condition is under diagnosed. Doctors, both in Canada and the States, lack familiarity with it and there is no consensus regarding diagnostic criteria — this revelation is from the American Journal of Nursing.
But what really troubled me was the claim "there is speedy treatment south of the border." Not true. The wait time to see a specialist is often months and if the doctor does not accept insurance, or the patient is uninsured, the cost of treatment in the States may be prohibitive. One American with the disorder wrote, "I do not have insurance, nor can I get it privately. Testing and surgery will have to wait."
Read a comment taken from the newspaper's own Internet site:
"I'm in the US and recently was diagnosed with EDS after being told for 30+ years, on and off, it was all in my head too. I'm so sorry that you have to endure the ignorance of the medical community and the additional pain that comes with all that. I have been waiting for a list of experts from my insurance company in the US for 2 months now ever since my diagnosis. From what I am told, all the"true experts" in EDS are on the East Coast. I live on the West Coast 3000 miles away...like another country away and my insurance may not cover the referrals. This syndrome is probably not as 'rare' as it has been made out to be, just rarely diagnosed. It's time that doctors become aware and learn how to treat it. Keep fighting and keep having faith."
The treatment for Ehlers-Danlos is expensive. The newspaper got this fact right. And the costs are never ending. This can be a painful, genetic disorder keeping sufferers awake at night while giving medical insurance actuaries nightmares. To further complicate the financial picture, the Stateside specialist the young Canadian is seeing is an out-of-network provider.
About Health has this to say about out-of-network specialists: An out-of-network provider is one which has not contracted with an insurance company for reimbursement at a negotiated rate. Some health plans, like HMOs, do not reimburse out-of-network providers at all, which means patients are responsible for the full amount charged by the doctor. Other health plans offer coverage for out-of-network providers, but the patient responsibility is higher than it would for an in-network provider.
Read the Barbara Calder story in The Wall Street Journal: How U.S. Health System Can Fail Even the Insured. Calder has Ehlers-Danlos Syndrome but despite having health insurance she spent a year battling numerous roadblocks just to see a specialist who could diagnose her condition.
According to The Wall Street Journal:
Mrs. Calder's difficulties mirror those of millions of insured Americans who get lost in the U.S. health-care system's giant maze. For many, the journey is frustrated by coverage limits, denied claims and impersonal service.
When Barbara Calder finally succeeded at getting an appointment with a specialist, she learned the doctor had an eight week waiting list. Unfortunately, her husband had lost his job and their insurance was coming to an end. The couple could not afford the $1,267 a month in premiums.
Ontario has to do better. Our health care system needs improvement. In this, the newspaper position is dead-on. But health care heaven is not to be found just an hour or two down the highway.
Just as Canadians seem to be going to the States for treatment, Barbara Calder has been looking outside her home turf for medical help. According to the journal, Barbara Calder has been lobbying her husband and her children to move to Belgium, where she once lived, arguing that they could get good care there cheaply through the country's universal health-care system. One of the leading researchers of EDS is a Belgian geneticist working at the University of Ghent.
Calder's bright hopes for finding help in Belgium might come as a surprise to EDS patients living in the small, European country:
Every day is a kind of fight against the pain, the fatigue . . . but also against the institutions when you try to obtain support to cope with the disease". — Florence Simonis, president of the Belgian GESED (Groupe d'Entraide des Syndrômes d'Ehlers-Danlos — a support group for Ehlers-Danlos patients). She suffers from Ehlers-Danlos syndrome (EDS) herself.