"If you cannot afford to live in Toronto and you're making the choice not to accept treatment, then you are basically making the choice to die."Donate Today
Tina was diagnosed with Chronic Thromboembolic Pulmonary Hypertension, or (CTEPH). CTEPH is a rare disease caused by blood clots and their remaining scar tissue, which creates high blood pressure in the arteries of the lungs and forces the right side of the heart to work much harder than the left.
The eventual outcome is right-sided heart failure. Even with treatment and early diagnosis, CTEPH is life-threatening and presents a high mortality rate. There are many treatment centres across the country that are equipped to treat CTEPH, but in Tina’s case, a double lung transplant was required at the Toronto General Hospital.
When relocating to a major city like Toronto for a double lung transplant, Tina commented that there were specific parameters that needed to be met in order to qualify for the program. “We were told that we needed to live within a 2 hour radius of Toronto General Hospital, taking into account traffic. In fact, we were encouraged to move right across the street if possible.”
In Toronto specifically, the areas surrounding the hospitals are amongst the most expensive areas of the city. The cost of living is not viable for most needing this type of treatment. This kind of financial stress can turn a family’s world upside down.
Tina and her husband Joel decided to make the move and had to take leaves of absence from work – they now found themselves living in one of the most expensive cities in the country without any income.
"A lot of people politely told us that we simply don't qualify because we don't have that job or any working income which made it that much more difficult to find a place."
But thanks to their own fundraising efforts, with support from family, friends and strangers, they were able to make it through.
“Our support was tremendous, and I definitely would not have been able to survive without it,” said Tina.
"A lot of people politely told us that we simply don't qualify because we don't have that job or any working income which made it that much more difficult to find a place."”
Tina received her double lung transplant in December 2015 and has since made a full recovery, thanks to the boundless generosity of her hometown community, as well as friends and family. For many others however, the support system is just not there, and the financial barrier to accessing proper treatment often costs them their battle with their illness, and ultimately, their life.
“Our support was tremendous, and I definitely would not have been able to survive without it.”
The Ontario Government offers a program called the Transplant Patient Expense Reimbursement Program (TPER) which operates under the Trillium Gift of Life Network. It gives a patient needing to relocate for a heart or lung transplant up to $650 per month for rent.
The sad reality is that for a lot of patients, this is simply not enough. Moreover, if a patient happens to be on another source of government funding such as Ontario Works or Ontario Disability Support Program (ODSP), the government subtracts the amount given by those programs from the $650 stipend.
Today, there are some housing options for other patient needs, such as the Ronald McDonald House for children or the Princess Margaret Cancer Centre Lodge Lodge, but the amount of patients in need greatly outnumbers the capacity supported by these programs.
StayWell Charity has since worked with several outpatient programs to temporarily house patients. Tina and StayWell are now looking for external funding to help set up additional dedicated furnished apartments and are in the process of setting up a charity for the cause.