People with arthritis across York Region and Simcoe County are sounding the alarm over an end to a program that helps them cope with their debilitating disease.
Nadine Lalonde, who was diagnosed with rheumatoid arthritis (RA) five years ago, credits Southlake Regional Health Centre’s arthritis program (TAP) with helping her reach remission in only nine months, thereby averting damage to her joints.
But due to cutbacks at the Newmarket hospital, the program that’s considered the provincial leader in arthritis care will cease operating next month, leaving patients like Lalonde worried for the future.
“A lifetime disease can be scary, deteriorating – they say RA can take a decade off your life expectancy, how stressful is that? Keeping your head on straight is essential. It was reassuring and comforting to know the multi-disciplinary team was only a phone call away,” Lalonde said.
“Now, I will have to search for other resources. That will take time and energy. I have my health to manage, life and family, a business and household to run. How much energy does a patient have to put into caring for oneself when the resources already existed?”
Cynthia Riley, who was introduced to the program in 2009 when unexplained swelling in her fingers was diagnosed as psoriatic arthritis, said she has met many patients who live outside the region who also rely on the "one of a kind" program."
"The (program) is a consortium of doctors and specialists who help individuals suffering from the debilitating pain of arthritis. We are all aging and the TAP program provided us access to professionals who understood the pain of arthritis," Riley said.
Lalonde has written to Southlake president and CEO Arden Krystal, outlining her deep disappointment by the pending closure.
“Southlake’s decision to wind down services seems very short-sighted,” Lalonde wrote. “If we have learned nothing from the global COVID-19 pandemic, surely we can acknowledge the importance of prevention and education to avoid the high cost of acute care.
“I suspect that the savings from TAP’s closure today are a drop in the bucket compared to the cost of future joint replacements, the majority of which are performed on arthritis patients like me.”
Lalonde said TAP is a lifeline and remains a vital resource for arthritis patients across Ontario.
“We have lost so much already, another blow is too much to bear. In times like these, when the usual rules do not apply, conventional methods are misguided and unable to make sense of deeply unconventional situations.”
In the letter, she challenges Southlake to “have the courage to think differently” and try a new approach to assist patients to care for themselves, heal and promote well-being.
"I call on you to commit to reinstating The Arthritis Program and accepting leadership in preventive medicine in this field and others," she wrote. "I am going to go out on a limb and express my suspicion that Southlake is using TAP, its team and patients, along with nursing staff whose jobs were cut earlier this fall, as pawns in a strategic political game to garner a larger budget from the Ministry of Health.”
Riley used her Facebook account to ask her followers to write to Newmarket-Aurora MPP and Health Minister Christine Elliott and Southlake leadership: "The Arthritis Program is 0.12% of the hospital's total budget. If you are involved with TAP or you know of someone who has used TAP's service, you understand the significance of this program and how it has helped thousands of people over the last 30 years."
In a reply signed by Krystal and board chair Patrick Horgan, the pair note that Southlake is facing significant financial challenges and “as part of our strategy to reduce our deficit and put the organization on a sustainable path moving forward, we carried out a review of our programs, services and clinics to determine where there may be opportunities to shift care to the community.
“As part of this work, and in consultation with our operational and physician leaders from across the organization, we discussed opportunities for reductions and developed a series of decision-making principles.”
According to Krystal and Horgan, these principles include focusing on acute services that prevent admission and reducing hallway health care while not duplicating services that can be safely and effectively delivered in the community.
“Based on these principles and factoring in the feedback from our operational and physician leaders, we made the difficult decision to close the Arthritis Program.”
And by closing the doors in mid-January, they say it gives current clients a chance to complete their programs and connect with ongoing care in the community.
“People will be able to continue to be seen by their rheumatologist and their primary care provider in the community. We would like to reinforce that this decision was not made lightly and it does not reflect any concerns about the quality of care provided nor the dedication of the team at TAP.”
But Lalonde said she will have to find local resources since she’s only aware of only one physiotherapist operating in the area who specializes in inflammatory arthritis.
“I will still be able to see my rheumatologist (who did his internship at TAP) in Newmarket,” Lalonde said. “I spoke to him recently about the closure, and confirmed with him that I can call his office if I am in trouble or have questions.
“In the past, I would call TAP as needed between appointments. I see the specialist only twice a year, my condition is managed daily.”
Lalonde said that over the years, the clinic helped by confirming her medication modality, quieting the overactive autoimmune system that was attacking her joints and getting her into remission.
“Through ongoing support and education, they helped me retain my remission status,” she said. “it helps through education on how to manage a chronic condition – diet, pacing, rest, handling stress, medication and its effects and dosing and emotional support.”
She also received orthotics through the program, which also helped demonstrate a lot of daily living assistance aids.
“They are available to answer questions about research – a lot of patients are interested in cannabis – arthritis is very painful. Over the years, I had occasion to consult the social worker,” she said, noting her partner left when he found out there’s no cure.
“And I have called more often to speak to the pharmacist when I needed help to adjust medication. Self-advocacy is also important and supported by the team. They helped take my health in hand.”
Lalonde said she’s doing her best to try not to worry too much about the closure stress is the main cause of inflammation.
“RA patients have a tendency to be highly independent and self-sufficient, sometimes to our detriment," she said. "It’s hard asking for help.”
— With files from Debora Kelly
