Patient-Borne Costs: Briefing to the Ontario Renal Network, Spring 2014

Transcription

1 Patient-Borne Costs: Briefing to the Ontario Renal Network, Spring 2014 Prepared by the Ontario Government Relations Committee Committee Members Ethel Doyle - Chair Dr. Jeff Perl, MD Dr. David N. Perkins, MD Janet Baker, RN Marisa Battistella, PharmD Debbie Hodgins, RSW Brian MacLaren Patient Advocate François-René Dussault, LLB Patient Advocate Shirley Pulkkinen, RSW Terry Young Patient Advocate Committee Role The OGRC works to: a) Provide leadership and support to the Foundation in order to promptly identify, respond to and influence public policy relevant to the mission of the Foundation and to people living with kidney disease; and b) Increase the interaction between governments, their agencies and the Foundation. Patient-borne costs represent the single most frequently raised issue by patients, family members, caregivers, health and allied health care providers. The demand for the Kidney Foundation of Canada s Emergency Financial Assistance program continues to increase every year, making it increasingly difficult for the Foundation to meet the need. The single most frequent type of request to the Foundation s Information and Referral line is for support related to financial cost of living with kidney disease in Ontario. The financial burden of kidney disease makes it difficult for patients and families to follow through on their care plans, contributes to anxiety and depression, and can lead to poor health outcomes, all of which increases the utilization of health care resources. Reducing the financial burden on patients is a key component and success factor in the delivery of patient-centred, optimal care, and will ensure that the Ontario Renal Plan II will foster a patient- and family-centred renal care system in Ontario. Travel to in-centre hemodialysis Despite a target of having 80% of dialysis patients travel less than 30min by 2015, transportation represents a significant financial burden, particularly on those who do not fall within this range. Travel to in-centre hemodialysis is primarily treated as a municipal transportation issue, and does not have a consistent mechanism to ensure that patients have access to patient-centred, low-cost, assisted transit options. Patients that live in suburban areas frequently have long distances to walk to and from bus service, but without the health and strength needed to consistently walk that distance safely. Suburban patients face additional challenges in that disability supported travel will frequently not cross municipal boundaries, requiring patients to transfer mid-trip, extending their travel time. Rural patients face an even greater burden as they rely on an informal, and/or more costly transportation system, if they do not have a vehicle or are without someone to drive them. Many of these patients are forced to permanently relocate to new communities to access in-centre dialysis, when independent dialysis is not an option. There are insufficient funding mechanisms for patients on Old Age Security, or who are among the working poor. For example, income tax regulations only come into effect when one way travel to dialysis units is The Kidney Foundation of Canada Ontario Branch 1

2 greater than 40 km, and the tax credit is not helpful for those with low incomes. While independent dialysis is a strategy that will reduce the travel-related burden on many patients, the ones who are most ill and who require in-centre dialysis care, are frequently the patients who need the most physical assistance, have the most complex health conditions, caregivers who are aging and/or ill, and have the least amount of financial resources. This is a very vulnerable population. Travel to training for independent dialysis, testing, and specialty appointments Patients living in rural areas who need to access specialty clinics for testing and modality training, frequently need to relocate to another community for days or weeks, absorbing additional costs for hotel and food. Training does not frequently occur in the patient s home to assist with problem-solving related to the specific environment. This burden is particularly acute when training for home hemodialysis, which requires between six and eight weeks of training in a specialized facility. Support for Caregivers Family caregivers not only provide emotional support and assurance to their loved ones, but are an integrated part of the care team. Caregivers are required to accompany patients to appointments, training, and testing for a number of reasons: o Patients who do not have the English-language skills required to understand and/or make informed choices; o Patients who have cognitive impairments, learning disabilities, or other issues that make it difficult for them to learn and understand; o Caregivers may be responsible all or a part of the home treatments. This is in addition to providing living support such as personal care, cooking, cleaning, shopping, etc. o Patients are experiencing a heightened sense of anxiety and/or depression (frequently undiagnosed and untreated) that prevent them from learning new information and making major decisions; and o Caregivers are partners in ensuring patients are able to follow through on treatment outside of the clinical setting. In this role, caregivers frequently have to take unpaid leave, and/or reduce the number of earning hours they have access to. Any travel or relocation costs will increase. Personal Vehicle: Gas and Hospital Parking Costs For those who are able to drive themselves, or who have a loved one who can drive and attend dialysis sessions with them, the high costs of parking in hospital lots, and the rapidly increasing price of gas represents a significant financial burden. While there are illnesses such as cancer, or conditions such as pre-mature birth that can require daily hospital visits for a number of weeks or months, in-centre dialysis patients require three to four visits per week, for many years, and possibly decades. These costs put dialysis patients at a significant disadvantage compared to other chronic diseases. In some cases, hospitals offer a subsidized or discounted parking rate, however, this is at the discretion of each hospital and is no longer a standard practice. The proposed federal HST tax relief is not likely to have a significant impact on patients, as there is no guarantee that this savings will be passed onto patients (instead being The Kidney Foundation of Canada Ontario Branch 2

3 absorbed by the hospital or private company through fee increases), and may be less than what is saved through a parking savings program that is offered to dialysis patients by the hospital. Cutbacks to Municipal Transportation for Persons with Disabilities Other than having a personal vehicle, the most efficient and cost-effective modes of transportation is municipal transportation that is designated for persons requiring physical assistance. It provides door-to-hospital service, at a cost that is comparable to a city bus. However, transit programs often have curb-to-curb service, rather than doorto-door service, making it difficult for many families to find ways for patients to get safely from their homes to the vehicle (i.e. down a driveway, or in and out of a building). For families where there is no caregiver at home during the day, the transportation options that include assistance are much more costly. A number of municipalities in Ontario have been examining strategies to reduce costs, and some have restricted eligibility criteria for clients using transportation for persons requiring physical assistance. As a result, dialysis patients have been losing this resource in communities around the province. Modes of transportation and cost Organizations such as The Red Cross offer transportation services in a number of communities in Ontario for individuals who require physical assistance. Unfortunately, not all patients can transfer in and out of a vehicle if they are wheelchair bound, cost is prohibitive or represents a significant burden, and the reliability of these programs (particularly in rural areas with a smaller or older population) is seasonal and dependent on an unpredictable volunteer base. There are also distance limitations which hamper access to this service. Government assistance programs The Northern Health Travel Grant is funded by the Ministry of Health and Long-Term Care. The grants help pay some of the travel related costs for Northern Ontario residents who must travel at least 100 kilometres one-way for medical specialist or designated health care facility services that are not locally available. Funding is provided after the trip has occurred and can take 6-8 weeks for reimbursement. Unfortunately, delays in submitting claims or delays in the processing end of claims causes increased hardships to patients. For patients without access to credit, it is difficult to cover the upfront costs. This type of program is not available in Southern Ontario where some dialysis patients must travel more than 100 km for treatment. Medical supplies, medication, and treatment options Trillium Drug Plan deductibles are difficult for some patients to manage, particularly those who are on fixed incomes and/or who are among the working poor. Nutritional supplements and medications that are otherwise not covered are expensive and often not covered by private plans. Patients have been known to have made choices between food and medication (for example, forgoing the purchase of lactulose, a product necessary to ensure overall digestive health). These decisions have lead to The Kidney Foundation of Canada Ontario Branch 3

4 medical complications and hospitalizations (for example, complications of bowel obstructions resulting from poor digestive health). For those patients on home peritoneal dialysis, this could lead to failure of the modality. Patients that require the use of food banks have limited options in terms of renalfriendly choices. Pre-packaged food supplies are high in ingredients that are limited or restricted on a renal diet. The demand for financial support from the Foundation for blood pressure cuffs for patients has been increasing, as hospitals that have traditionally provided them free of charge, are no longer offering them to patients. Treatment and monitoring of this symptom of kidney disease can delay progression of kidney failure or even stabilize the progression for an extended time. Blood pressure control is seen as paramount in treating kidney disease. Expenses related to home dialysis Patients who use a dialysis modality at home are facing increasing municipal and utility costs. Based on patient reports, the increase in their municipal and utility expenses can look like the following: o An increase of between $100 and $400 per year for electricity o An increase of between $500 and $700 per year for water for daily dialysis o An increase of between $900 - $1000 per year for water for nocturnal dialysis Rural patients face additional costs related to ensuring they have a consistent supply of clean water. For a patient who has an income of less than $20,000, an additional annual cost of $2000 in hydro, water, and waste disposal, plus the purchase of equipment such as blood pressure cuffs, Trillium Drug Plan deductibles, and transportation costs for hospital and clinic visits, the financial burden becomes unsustainable. Transplant Patients who undergo transplants experience a unique set of challenges, particularly for families who live a long distance from the hospital facilities that offer transplant testing and care. Travel costs include transportation, hotel and living expenses related to pre-transplant testing, and post-transplant recovery. Some patients require relocating to a new community for four to six weeks post-surgery. Patients have reported delaying their surgery so that they can save enough of a financial reserve to cover the costs, because they do not have access to a credit line. The Kidney Foundation of Canada Ontario Branch 4

5 How can the Ontario Renal Plan ensure a greater focus on patient and family needs? Recommendation 1: Measure the impact of the financial burden on patients Develop a strategy to collect data on the financial burden of kidney disease and the impact it has on the ability of patients to make informed decisions, on their psychosocial wellness, their ability to follow through with their care plans, and their health outcomes. Recommendation 2: Reduce the financial burden related to self-management Establish a mechanism(s) to provide assistance to patients and families who are incurring high treatment related costs relative to their incomes. Recommendation 3: Increase access to affordable, reliable transportation Prioritize equal access to care by ensuring that patients have affordable, reliable, consistent, and patient-centred transportation support, regardless of their geographic location, modality choice, and stage of the patient journey. Recommendation 4: Decrease the need for travel and relocation Develop a strategy to reduce the commute and need for relocation by increasing access to training, specialist care, testing and monitoring options, telemedicine and remote care delivery outside of urban centres. Recommendation 5: Support innovation and sharing of best practices related to the financial burden on patients Provide financial support to community-based projects, multi-jurisdictional initiatives and partner-based approaches to addressing problems associated with the financial burden of kidney disease. For example, supporting the pilot testing and replication of local initiatives designed to close gaps in transportation in rural communities. The Kidney Foundation of Canada Ontario Branch 5