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6

Mar

Canadian women not taken seriously when asking for laparoscopy to help manage pain of endometriosis

Posted by steph 

Canadian endo sister forced to wait for laparoscopy – told she will “not suffer death or irreversible tissue damage”, so she should stop “doctor shopping, since this was a waste of both health-care resources and her time.” She was of course in agonising pain. Turns out once she came to the States to get surgery at Northside Hospital Cancer Institute, the surgeon had to remove her uterus, fallopian tubes, ovaries and nearly 8 inches of her bowel because of extensive endometriosis damage.

OHIP turns blind eye to suffering
COVERAGE: Area woman was chastised for seeking faster care before agency threw up roadblocks to paying for her care
By JONATHAN SHER, THE LONDON FREE PRESS
Last Updated: January 20, 2012 9:55pm

Chastened by doctors for seeking speedier treatment for a painful disease threatening to rob her of fertility, Allison Jones writhed with pain so severe it was like a man continually passing large kidney stones.

Jones needed to see one of a handful of gynecological specialists who could remove the lining of a uterus where it grows outside that organ, a painful condition called endometriosis.

But after waiting seven months to see a specialist Jones, a resident of Southwestern Ontario, was told she’d have to wait at least seven more for surgery that might make her pain-free for the first time in years.

Only one specialist held an open door to her care, a Canadian schooled almost entirely in Ontario. But Dr. Ken Sinervo had committed a Cardinal sin as far as OHIP was concerned — he offered life-changing surgery outside the country in Atlanta, Georgia.

Twice, Jones’ family doctor wrote to OHIP, asking the agency to pay for Siverno’s surgery, but each request was met by quick refusals and a suggestion she check a list of specialists, none of whom had time to see her any quicker.

One specialist, Dr. Sabrina Lee, chastised Jones for seeking faster access, writing in a letter she should stop “doctor shopping, since this was a waste of both health-care resources and her time.”

Jones sought emergency care repeatedly, but the heavy-duty drugs prescribed did little to curb her pain.

So in April of 2010, she decided to go to Atlanta.

Three days later, she was on an operating table at the Northside Hospital Cancer Institute.

“That’s one of the big differences between the health-care system in Canada and the system here,” Sinervo told The Free Press this week from Atlanta.

The disease had progressed so quickly, Sinervo had to remove her uterus, fallopian tubes, ovaries and nearly 8 inches of her bowel.

The ordeal was traumatizing. Jones — not her real name — asked The Free Press last week to keep her identity secret.

But those who helped her spoke out.

It isn’t just the speed of access that’s different, Sinervo says. The surgeries he performs in Atlanta are more advanced than what’s available in Ontario, in part because he performs surgery four or five days a week — while Ontario docs might get a day and a half because of the rationing of operating-room time.

“That’s one of the reasons I didn’t go back to Canada after my fellowship in Atlanta,” he said.

Sinervo uses a carbon-dioxide laser to remove all of the abnormal tissue to lessen the chance of complication and reoccurrences, something he says most specialists do not do.

The surgery was done, but the struggle for Jones had just begun: She faced a $70,000 medical bill including close to a week in hospital.

The Atlanta hospital, Northside Hospital Cancer Institute, later forgave most of the bill, wiping $57,000 off the books as it sometimes does for patients who just can’t afford to pay.

But OHIP fought against covering the remaining $13,000, even though that amount is almost certainly no more than what Jones’ treatment would have cost in Ontario, Sinervo said.

That hard-nosed approach is nothing new for OHIP, says the lawyer who represented Jones. For 20 years, the agency has acted strictly like a private insurance company, going to great lengths to avoid having to pay for any out-of-country care.

“There’s no compassion at all,” said Perry Brodkin, who was the agency’s in-house counsel years ago, before regulatory change changed it from an agency that tries to help to one seeking any reason to reject coverage.

Most patients lose appeals to OHIP rejections because they can’t afford to hire a lawyer, as legal costs typically range between $5,000 and $20,000.

Patients argue on compassionate grounds not to be found in a law that restricts out-of-country coverage to necessary care that’s unavailable here or so delayed a wait would probably result in death or medically significant and irreversible tissue damage.

Pain alone isn’t enough to get OHIP funding, no matter how excruciating or debilitating, Brodkin said.

But this time the bad guys lost, Brodkin said.

Jones won her appeal this month before Ontario’s Health Services Appeal and Review Board.

Board members took issue not just with the stance of OHIP, but also with the Ontario specialists who had essentially told Jones to wait her turn.

The specialist she was to have waited for was Dr. Nicholas Leyland, top dog at Health Sciences Centre at Hamilton’s McMaster University.

But when Jones went to Sinervo, Leyland wrote to support OHIP’s denial of coverage.

“We could have carried out the same kind of care that was provided by Dr. Sinervo, who was a trainee of ours a few years ago. This patient would not have suffered death or irreversible tissue damage in waiting for this surgery. Many patients are waiting for this procedure much longer,” Leyland wrote.

The board rejected Leyland’s claim, noting in his letter, he didn’t mention Jones’ specific condition or if delay would cause irreversible tissue damage, dismissing her claim because some other women with the same general condition had to wait longer.

“It is unfortunate that Dr. Leyland did not testify at the hearing,” the board wrote.

The board also took aim at OHIP: “The Appeal Board is troubled by (OHIP’s) assertion that since endometriosis is by definition a progressive disease, any further progression in the form of tissue damage is expected and is not medically significant.”

The decision is timely, Brodkin said, as waits for surgery by Leyland have grown to nine months, with about 60 women affected.

“Most wait and suffer damage,” he said. “(This case) may open the doors (for care in Atlanta),” Brodkin said.

The Toronto lawyer challenged Ontario Health Minister Deb Matthews to change the rules and process to give patients a fighting chance, even if it’s to arrange for an advocate or ombudsperson for those who can’t afford a lawyer.

As for Sinervo, he’d like to negotiate a reduced rate with the health ministry for Ontario women going to Atlanta’s Center for Endometriosis Care, something close to half of the regular charges.

The Free Press requested interviews three days this week with Matthews, a London MPP, but she didn’t make herself available.

Messages left for Leyland and Lam also weren’t returned.

Published in doctors, Government-involvement, Insurance industry, Medical industry, News article, Outrageous

Related Articles

  • Nearly 1 in 5 women who undergo hysterectomy may not need the procedure (March 12th, 2015)
  • Some Women Go To Great Lengths For Relief From Debilitating Monthly Cramps (March 6th, 2015)
  • Lack of endometriosis specialist increases chance of extra surgery (December 8th, 2014)
  • Interesting read on treatments doctors do not seek for themselves (December 7th, 2011)
  • Unbelievable doctors in the 21st century (March 23rd, 2011)

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Mankoski Pain Scale

0 - Pain Free

1 - Very minor annoyance - occasional
minor twinges. No medication needed.

2 - Minor Annoyance - occasional
strong twinges.
No medication needed.

3 - Annoying enough to be distracting.
Mild painkillers take care of it.
(Aspirin, Ibuprofen.)

4 - Can be ignored if you are really
involved in your work, but still
distracting. Mild painkillers remove
pain for 3-4 hours.

5 - Can't be ignored for more than 30
minutes. Mild painkillers ameliorate
pain for 3-4 hours.

6 - Can't be ignored for any length of
time, but you can still go to work and
participate in social activities.
Stronger painkillers (Codeine,
narcotics) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Stronger
painkillers are only partially effective.

8 - Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
of pain.

9 - Unable to speak. Crying out or
moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you
pass out.

© Andrea Mankoski

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