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The Coalition to Save Our Young Adults called on the Ontario government Monday to fulfill its responsibility to the Sickle Cell and Thalassemia community by providing appropriate, comprehensive care for adult patients.

Since 2004, the Coalition has met on several occasions with hospital staff and government officials over the critical lack of space in the Thalassemia and Sickle Cell Clinic at Toronto General Hospital. In spite of repeated pledges to improve access to care and the level of service, one physician said, “The situation has gone from a crisis to a catastrophe.”

About 150 young adults over the age of 18 have no place to go for care. In the last five years, there have been around 15 Toronto area patient deaths, many of which the Coalition said were preventable. Ironically, many of these deaths were patients who had survived blood transfusions in the 1980’s that were contaminated or at risk for HIV and Hepatitis C.

Thalassemia is an inherited blood disorder in which the body is unable to make normal functioning hemoglobin, a protein in the blood required for the transportation of oxygen. Without regular blood transfusions, persons affected are unable to survive. A generation ago, patients rarely lived beyond childhood. Thanks to medical advances, they’re living healthy lives today, pursuing careers, continuing their education and raising families.

For years, Thalassemia patients in Canada had access to the highest standard of care in the world. Unfortunately, provincial funding for the only adult program in Toronto has been capped at 99 patients since the late 1990’s. Once pediatric patients turn 18, they have no place to go for treatment, can’t get the appropriate monitoring for adult care or the right support for emergency cases.

When adult patients develop complications, they are admitted to emergency departments at adult hospitals where their records and hospital files are not available. Physicians are often unaware of problems associated with Thalassemia, so complications develop into more serious conditions.

In 2003, the previous Toronto District Health Council, one of 16 District Health Councils (DHCs) in Ontario developed to advise the Ministry of Health and Long-Term Care on health system issues of importance to Toronto, concurred with the acute need for coordinated transition from pediatric to adult care.

“The situation has seriously deteriorated since that time evidenced by the death of our young patients,” said Riyad Elbard, president Thalassemia Foundation of Canada. “We have lost 15 patients, which we think many of them may be due to improper and inadequate care.”

Sickle cell disease (SCD) is a life threatening, hereditary blood disorder that causes malformation of red blood cells that become distorted when they transmit oxygen through the body. Instead of staying soft and round, cells become hard and shaped like a sickle or crescent moon, which can get clogged in blood vessels causing unpredictable episodes of excruciating pain that can last for weeks, tissue damage in any organ of the body or even a stroke.

Even with constant care, SCD can be fatal. Although there is no cure, blood transfusions and pain killers makes it possible for patients to better cope with complications. In Canada, SCD affects in 1 in 600 people of African descent.

In 1967, Sherman Moore was diagnosed with SCD at Toronto General Hospital, where he is a patient in the Thalassemia and Sickle Cell Clinic. As a result, he’s felt fortunate to be living in a country and a province with a good health care system. “When you have SCD and a crisis hits, you may often need emergency care,” said Moore. “This is a critical time where complications could set in if treatment is delayed.”

With longer wait times now, emergency staff having no access to medical records and doctors reluctant to administer narcotics for fear a patient may be a drug addict, a visit to an emergency room for a Sickler in crisis today can be a very trying and painful experience.

If a patient can be treated with narcotics, intravenous fluids and oxygen as soon as possible, it can prevent further complications from developing. If not, liver or kidney damage could occur. Patients might need blood transfusions. Despite the fact that Moore has spent many hours in emergency rooms waiting for treatment, he hasn’t experienced serious complications. But others have.

Moore admitted he’s seen a definite decline in emergency room service. Lately, he’s waited 4 or 5 hours to see a doctor. He’s learned to take painkillers with him so he can administer his own medication in the emergency room, if so required. Often, he said, treatment is delayed after seeing a health care professional because of concern that the patient could be a drug addict, due to the addictive nature of narcotics.

“That’s why we believe that adult patients with SCD and Thalassemia deserve the same level of care as those with other diseases,” said Moore. “Adult patients should have access to high quality comprehensive care provided in an adult setting.”

Moore is concerned and said, “It’s unacceptable that many young adults cannot get access to the adult clinic at Toronto General Hospital.”

Victoria Idowu also suffers from SCD and, like Moore, is a patient in the Thalassemia and Sickle Cell Clinic at Toronto General Hospital. For the first 16 years of her life, she said, “I received wonderful and excellent care at the Hospital for Sick Children.” But once she turned 19, Idowu left behind the security and safety of ?SickKids.

For the last year, she’s been placed in an adult hospital that she said struggles to meet her needs due to the lack of funding (Idowu’s doctor is only able to see Sicklers four days a month.) and knowledge of how to treat adults suffering from this disease.

Based on her emergency room experiences, Idowu doesn’t feel the staff knows much about Sickle Cell and, therefore, doesn’t know how to treat patients in crisis. “We need help but they just don’t know how to give us the help we need,” she said. “When we’re in pain we need to be attended to promptly to prevent complications.”

In other settings, with both Thalassemia and SCD, emergency procedures would be in place in the emergency room. So if a patient comes in to emergency, the right procedure can be put into place, rather than challenging patients as to whether or not they’re actually in pain. With ongoing monitoring, however, patients are less likely to end up in emergency in the first place.

“We have Thalassemia patients that by the time they get to emergency, they’re having a heart crisis,” said Durhane Wong-Rieger, President and CEO, Anemia Institute for Research and Education. “They may not recover from that.”

Over the last 10 years, the Coalition, which includes the Anemia Institute for Research and Education, Thalassemia Foundation of Canada, Seed of Life, Sickle Cell Association of Ontario and Camp Jumoke, has met with hospitals, regional health authorities and with the Ministry of Health pleading for additional resources for adult Thalassemia and Sickle Cell care.

Although the response has often been sympathetic, there has been no increase in resources or positive action on the part of the hospitals or the Ministry. Meetings with the regional health authorities resulted in a report published in 2003, but no action on the basis of that plan.

“The deaths of young adults with these diseases in Canada are occurring at a time when other countries, with comparable populations but comprehensive care programs, have had few or no deaths,” said Wong-Rieger.

Yesterday, the Coalition called on the Minister of Health to honour the commitment made in 2005 and repeated in 2007 to adequately resource the adult Thalassemia and Sickle Cell clinic at Toronto General Hospital so that it can provide the highest level of comprehensive care, treatment and support to the approximately 150 adult patients now being denied access.

Patients outside the GTA and the province also have difficulty accessing comprehensive care. Janet Mulgrave, who is the president of the Sickle Cell Association of Ontario, said her group gets calls from all over Canada from people who can’t find proper care. In Ontario, the Association is trying to develop a Sickle Cell program in the Windsor area for a large patient population who don’t have access to proper care.

“We try to get patients care quickly thereby decreasing the chances of them going to an ICU (Intensive Care Unit) later on,” said Mulgrave. “Because we all know how expensive an ICU bed can be. So that’s the point of having access to care in a timely manner.”

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