The Burden of Kidney Disease in Rural & Northern Ontario

Transcription

1 Ontario Branch The Burden of Kidney Disease in Rural & Northern Ontario Contact: Janet Bick Director, Policy & Programs The Kidney Foundation of Canada Ontario Branch Tel: / ext.4970

2 Introduction There are an estimated 1,500 people on some form of dialysis or living with a kidney transplant in Northern Ontario. Over 40% of new cases each year are the end result of diabetes and 55% of all patients are over the age of 65. In addition there are an unknown number of people living with the earlier stages of kidney disease, many of whom may not even be aware of it. The leading causes of chronic kidney disease (CKD) are diabetes and hypertension, both modifiable risk factors. The need for people to travel to receive specialty medical care is a continuing issue in Northern and Rural Ontario. The cost of transportation to treatment has been an issue for kidney patients, families and health care providers for as long as dialysis and transplantation have been available. The ongoing nature of treatment and management of chronic kidney disease CKD and related complications exacerbate the problems incurred in accessing care. Since 1995, the Ontario Ministry of Health and Long Term Care has funded the establishment of many new dialysis facilities across the province. While many patients now have access to treatment closer to home, they are still incurring costs for transportation. Others continue to travel long distances at considerable personal expense. In Northern & Rural Ontario, patients may need to relocate in order to receive treatment Living with CKD imposes financial, physical and psycho social burden on individuals and families. Individuals receiving hemodialysis must travel three times per week to a hospital or satellite unit. This treatment is life sustaining and missing a treatment can result in considerable harm or even death. For those who are performing home based dialysis, who have received a kidney transplant or who are in the earlier stages of chronic kidney disease, regular visits to the regional centre are required for teaching, management of co morbid conditions and hospitalizations when acute care medical attention is required. All Ontario chronic kidney disease programs describe problems in accessing suitable transportation for their patients. Difficulties include unavailability of a family member to drive the patient, long travel distances, lack of access to convenient public transit or parallel transit systems, the high cost of gasoline, insurance and maintenance of personal vehicles and ineligibility for existing government transportation assistance programs. The Kidney Foundation of Canada, Ontario Branch Page 1 of 9

3 Chronic Kidney Disease A Heavy Financial Burden Patient A Requires hemodialysis treatment three times per week. Resides 95 kilometres from London Health Sciences Centre Annual household income less the $20,000 No longer able to drive, using drivers from local agency at a cost of more than $1,000/month Patient B Requires hemodialysis treatment three times per week. Resides 80 kilometres from London Health Sciences Centre Uses personal vehicle Retired with elderly spouse, both on fixed income, insufficient to claim medical expense tax credit for transportation Patient C Resides in Northern Ontario Retired couple with fixed household income < $30,000 Temporarily relocated to London for removal of failed kidney transplant Requires hemodialysis treatment three times per week while in London Cost of accommodation, trips to dialysis, meals for two weeks approximately $3,000. Financial Assistance for Transportation In Northern Ontario, eligible patients may receive assistance through the Northern Health Travel Grant (NHTG). Some financial support for transportation to medical treatment is available for patients on Ontario Works or the Ontario Disability Support Program. Patients receiving CPP Disability or who are over the age of 65 are not eligible for funding unless they meet the criteria for the NHTG or High Intensity Needs Funding for dialysis patients in long term care facilities. The Kidney Foundation of Canada recognizes that many of the expenses associated with kidney disease are borne directly by people with ongoing kidney disease and living kidney donors. In response to their ensuing financial hardship, the Foundation provides limited last resort financial assistance, on a short term basis, to eligible people (where the expense relates directly to treatment of a person with chronic kidney disease or to the process of donating a kidney). The majority of requests for assistance are for transportation to dialysis treatments. The Kidney Foundation of Canada, Ontario Branch Page 2 of 9

4 Limitations of the Northern Health Travel Grant Travel grants are funded by the Ministry of Health and Long Term Care to help defray the transportation costs for eligible residents of Northern Ontario who must travel long distances to receive medically needed insured specialty services not available locally. Approved travel grants are currently paid at 41 cents per kilometre based on road distance travel between a patient s area of residence and the location of the nearest medical specialist or health facility than can provide the service. There is a deductible of 100 kilometres on each trip. Travel grants help defray the overall cost of travel, but do not cover all expenses, such as meals. In addition, the NHTG Program provides an accommodation allowance of $100 for each eligible trip a patient makes. The one way travel road distance from their area of residence to the location of the nearest medical specialist, or designated health care facility able to provide the required treatment must be at least 200 kilometres. Applicants must incur the cost first and then have up to 12 months to apply for reimbursement. The Kidney Foundation provides loans to a limited number of eligible patients to cover the upfront costs and is then reimbursed directly by the NHTG program. A survey of northern patients, conducted in 2000 by the Foundation s Northern Issues Task Force noted that: While some patients must travel great distances, the majority of respondents (76%) travelled less than 100km (one way) to receive treatment and related health care services. This is a group that continues to be excluded from the NHTG, even though they also incur considerable costs for transportation. For example, a hemodialysis patient traveling 70 kilometres return to access life sustaining treatment is not eligible for the NHTG even though this individual will make 156 trips per year totalling 10,920 kilometres. Northern Health Travel Grant Denied The case of patient D Patient D is suffering from extensive cancer and kidney failure and requires hemodialysis three times a week. Lives closer to hemodialysis in North Bay Ontario; however continuity of care for this patient is necessary for both cancer and dialysis treatments. Given the complexity of patientʹs medical needs it is appropriate and in patient s best interests that both services are obtained at the Sudbury Regional Hospital. The Kidney Foundation of Canada, Ontario Branch Page 3 of 9

5 Patient resides in River Valley. There are no formal transportation services for patient to get to and from dialysis in Sudbury. Patient has attempted to utilize the Northern Health Travel Grant Program but was denied as it is less than the 100 kilometre distance from the Sudbury Regional Hospital to River Valley (town centre to town centre). Patient reports that the distance from residence to the HRSRH door is actually 106 kilometres. Patient sent letter to the NHTG Review Committee (consists of NHTG staff and a policy consultant). Patient or a designated patient representative not allowed to attend the review committee. Patient was subsequently denied NHTG funding for travel from River Valley to Sudbury. The Burden of Kidney Disease in Northern Ontario The results of the 2000 Northern Health Travel Survey revealed a range of issues related to regional access to care, income levels and poverty and specific areas of concern for older persons with kidney disease. The results of the survey were reported in the 2002 document, The Burden of Kidney Disease in Northern Ontario: Regional Travel and Access to Health Care. In particular, the survey indicated that many patients and families were dedicating large amounts of time, money and physical energy to access these vital services. Many must travel routinely to receive pre dialysis and dialysis care. Transplant surgery and follow up for complications are only available in centres in the south. There are no pediatric nephrologists in the north, requiring long stays in centres in Toronto, London or Ottawa. The survey also revealed that Many patients are not working and live on fixed incomes. In addition to travel and accommodation costs related to accessing treatment for kidney disease, many must also bear the cost of medications and nutritional supplements not covered by the Ontario Drug Benefit Program or third party plans. Some patients incur additional costs for wheel chairs and other mobility devices, medical supplies, weigh scales and blood pressure cuffs related to diabetes and hypertension (the leading causes of kidney failure) and their complications. Lack of access to affordable housing and the need for some to permanently relocate also contribute to the high incidence of poverty in this population. The Kidney Foundation of Canada, Ontario Branch Page 4 of 9

6 Older persons were found to be especially disadvantaged: Over 55% of dialysis patients are over the age of 65. Most are not working and are living on fixed incomes and have little or no access to assistance with transportation costs. They often live alone or with an equally elderly and infirm spouse and do not have other family caregivers available. Some of these individuals require access to one or more levels of long term care, including home care services such as nursing, respite care, transportation, homemaking and Meals on Wheels. Others require rehabilitation, complex continuing care and palliative care. First Nations people are at much higher risk of developing chronic kidney disease. For those First Nations people requiring dialysis, many do not have the option of choosing the best treatment for their lifestyle such as peritoneal dialysis as their basic living conditions require drastic improvements in order for this treatment to be safe. As a result, up to 70% of First Nations people with kidney failure must relocate to an urban setting for renal health care. Recommendations from the report The Burden of Kidney Disease in Northern Ontario: Regional Travel and Access to Health Care, 2002 The following recommendations were made in 2002 and are still relevant in Access to Care The Ministry of Health and Long Term Care, in consultation with the regional treatment centres, should ensure the availability of treatment as close to home as possible by expanding existing satellite dialysis facilities and establishing new ones where appropriate. They must also ensure that access to the broad range of clinical interventions (vascular access, patient education, medical consultation, specialist care, etc.) are available as close to home as possible and in a timely fashion. 2. Northern Health Travel Grant (NHTG) Eligibility for the NHTG Program should not be based solely on the distance travelled for a single trip. The Ministry of Health and Long Term Care should revise the eligibility criteria to also include a category that considers total distance travelled over a given time period for individuals who must travel frequently to access treatment and support services only available at a regional centre. 3. Transportation Assistance from the Ministry of Community and Social Services The Ministry of Community and Social Services should ensure that the amount for The Kidney Foundation of Canada, Ontario Branch Page 5 of 9

7 mileage allotments for individuals in receipt of Ontario Works or the Ontario Disability Support Plan is applied consistently in all regions. Funding for escorts for medical travel should also be available consistently regardless of where individuals live. Further, the Ministry should provide transportation assistance for low income seniors. 4. Affordable, Accessible Local Ground Transportation The Ontario Government and regional and municipal governments must fund community transportation services appropriately to ensure access for all those who require them. Further, consideration should be given to allocating specific funds to community transportation services to enable them to provide rides to dialysis treatments. 5. First Nations People The Federal Government must increase funding to First Nations communities for adequate housing and improvements such as safe drinking water and reliable septic systems to allow those with kidney disease to remain in their home communities. Access to financial, health and social services must also remain a critical priority of the Federal Government. A Fair And Equitable Transportation Program In September 2008, The Kidney Foundation of Canada, Ontario Branch hosted the Ontario Summit on Chronic Kidney Disease. It brought together the senior leadership of the Foundation with representatives from a broad range of stakeholder groups including: people affected by chronic kidney disease (CKD), physicians and allied health professionals, administrators, Local Health Integration Networks (LHINs) government, other health charities and industry. The purpose of the Summit was to gain input on the specific issues in promoting CKD prevention and management over the next three to five years. Summit participants identified eight priority issues including patient transportation. The Report of the Ontario Summit on Chronic Kidney Disease noted: Summit participants acknowledged that the transportation issue is one that no agency wants to take on. Yet it is a critical aspect of access to kidney care. Lack of transportation to care, or expensive solutions, profoundly affect the lives of people affected by kidney disease. The Kidney Foundation of Canada, Ontario Branch Page 6 of 9

8 The objective is to develop and implement a fair and equitable transportation program for all Ontario patients to reduce and, where possible, eliminate financial hardship. It was recommended that a specific budget for transportation be allocated by the Ministry of Health and Long Term Care. To address how to allocate and manage such funds LHINs might convene planning sessions, bringing both service providers and stakeholders together. All LHINs, it was stated, need to collaborate to develop a provincial framework for a transportation program. As well, collaboration with other healthcare providers facing similar issues is necessary. Reducing the Burden of Kidney Disease The needs of patients in Northern and Rural Ontario who require access to dialysis or a transplant must be met in a cost effective and equitable fashion. At the same time, it is critical that attention be paid in these areas to the importance of early detection and management of the early stages of kidney disease to prevent the need for dialysis and improve outcomes for those at greatest risk. The fact remains that outcomes for patients on dialysis remain poor with a five year survival rate of 50%. Mortality rates are worse than for all cancers, except lung. Reduced kidney function is also a multiplier of cardiovascular risk. The physical and financial challenges of accessing treatment and services for CKD in Northern and Rural Ontario make it imperative that efforts to identify and manage those at risk of developing it must be increased. The Kidney Foundation of Canada, Ontario Branch Page 7 of 9

9 Summary A diagnosis of chronic kidney disease requiring dialysis can be devastating to individuals and families. Living with kidney failure imposes continuing stresses on patients and family members, including coping with treatment restrictions, loss of employment, threat of transplant rejection, side effects of drugs, threat of death, etc. Once diagnosed and individual will be on some form of kidney replacement therapy for the rest of his/her life. For those living in Northern and Rural Ontario, the additional costs of obtaining this specialized care on an ongoing basis, at great distances from home, can be crushing. The Kidney Foundation of Canada believes that accessing treatment and support services should not pose undue hardship for people living with kidney disease. We urge the Panel on Northern and Rural Health to seriously consider the recommendations in this submission, in order to ease the financial burden on kidney patients and their families. In particular, we strongly encourage the Panel to support recommendations to: revise the eligibility criteria for the Northern Health Travel Grant to also include a category that considers total distance travelled over a given time period for individuals who must travel frequently to access treatment and support services only available at a regional centre. ensure fair and equitable patient transportation programs and assistance are available in all regions of Ontario. improve early detection and management of chronic kidney disease to prevent the need for dialysis and improve outcomes for those at greatest risk, including in First Nations communities. The Kidney Foundation of Canada, Ontario Branch Page 8 of 9

10 Our Vision: Our Mission: Kidney Health, and improved lives for all people affected by kidney disease The Kidney Foundation of Canada is the national volunteer organization committed to reducing the burden of kidney disease through: funding and stimulating innovative research; providing education and support; promoting access to high quality healthcare; and increasing public awareness of and commitment to advancing kidney health and organ donation The Kidney Foundation of Canada, Ontario Branch Page 9 of 9