Adopt a TSC Family for Telehealth
Tax deductible
Bring telehealth to a family like this one with children diagnosed with Tuberous Sclerosis Complex (TSC) for TWO years!
BCUREFUL Budget Proposal
TSC Telehouse Calls Research
John J. Bissler, MD
28 July 2016
Problem: While many problems face families with children suffering from tuberous sclerosis complex (TSC), the focus of this proposal centers on the substantial financial and geographical barriers families face. While there are many TSC clinics across the country, less than 25% of affected patients can attend these clinics. There are many reasons, but the cost and distance can present an insurmountable burden for families. As an alternative, these patients try to get help utilizing community physicians who are trying their best to help. Unfortunately, they may only have one patient with TSC, so that their ability to keep up on proper care of a TSC patient can be limited. They often order tests and procedures that are not indicated for a TSC patient, and while they are doing their best, patients can have unnecessary surgeries and have disease manifestations that are poorly controlled, such as seizures.
Solution: Patients with financial and geographic burdens need to have access to TSC specialists but cannot get to centers. We posit that the solution, an old one, is that the TSC clinic should make house calls. This practice has long been abandoned, but a technologically enhanced version, telehealth, could greatly help patients get the care they need while reducing the cost of care both to the patient and the insurance provider. The Pew Research Institute reported in April last year that 64% of American adults now own a smartphone of some kind, up from 35% in the spring of 2011. In addition, the Affordable Care Act supports a mobile phone for Medicaid recipients.
Barrier to Implementation: While the solution is technologically possible and obviously desirable, the medical delivery system is not designed to for such innovative solutions yet. Physician reimbursement for Telehealth is not universal and is in flux. Objective evidence is needed that TSC Telehealth not only provides a valuable service to the patient, but that it also is cost effective. While it is easy to calculate the cost saving for the patient, the cost savings must also be in favor of the insurance provider if this solution is to be a viable option for the families.
Next Steps: We will conduct a two-year study that enroll up to 50 patients who cannot utilize a local TSC clinic. We will use Telehealth to supply care consisting of three to four visits to help assess, coordinate, and deliver care. In the process, we will gather medical and financial data so that we can compare the costs of care before the implementation, to after. We will test the hypothesis that the implementation of telehealth reduces cost to the patient and to their insurance provider.
To test this hypothesis, we calculate that we will need $214,241 to cover the cost of the salaries to deliver the care over the two years. This calculates out to $2,145 per family per year. Our goal is to help 10 families participate for 2 years!
Suggested Amounts:
Care for one family for 1 week: $41.21
One TSC educational video that all patients will have access to while waiting for appointment: $100
Care for one family for 1 month: $178.55
Care for one family for a quarter: $536
Care for one family for 6 months: $1,071
Care for one family for 1 year: $2,142
Care for one family for the duration of the two-year study: $4,285
Any donation is GREATLY appreciated and will help us reach our goal! Thank you!
BCUREFUL Budget Proposal
TSC Telehouse Calls Research
John J. Bissler, MD
28 July 2016
Problem: While many problems face families with children suffering from tuberous sclerosis complex (TSC), the focus of this proposal centers on the substantial financial and geographical barriers families face. While there are many TSC clinics across the country, less than 25% of affected patients can attend these clinics. There are many reasons, but the cost and distance can present an insurmountable burden for families. As an alternative, these patients try to get help utilizing community physicians who are trying their best to help. Unfortunately, they may only have one patient with TSC, so that their ability to keep up on proper care of a TSC patient can be limited. They often order tests and procedures that are not indicated for a TSC patient, and while they are doing their best, patients can have unnecessary surgeries and have disease manifestations that are poorly controlled, such as seizures.
Solution: Patients with financial and geographic burdens need to have access to TSC specialists but cannot get to centers. We posit that the solution, an old one, is that the TSC clinic should make house calls. This practice has long been abandoned, but a technologically enhanced version, telehealth, could greatly help patients get the care they need while reducing the cost of care both to the patient and the insurance provider. The Pew Research Institute reported in April last year that 64% of American adults now own a smartphone of some kind, up from 35% in the spring of 2011. In addition, the Affordable Care Act supports a mobile phone for Medicaid recipients.
Barrier to Implementation: While the solution is technologically possible and obviously desirable, the medical delivery system is not designed to for such innovative solutions yet. Physician reimbursement for Telehealth is not universal and is in flux. Objective evidence is needed that TSC Telehealth not only provides a valuable service to the patient, but that it also is cost effective. While it is easy to calculate the cost saving for the patient, the cost savings must also be in favor of the insurance provider if this solution is to be a viable option for the families.
Next Steps: We will conduct a two-year study that enroll up to 50 patients who cannot utilize a local TSC clinic. We will use Telehealth to supply care consisting of three to four visits to help assess, coordinate, and deliver care. In the process, we will gather medical and financial data so that we can compare the costs of care before the implementation, to after. We will test the hypothesis that the implementation of telehealth reduces cost to the patient and to their insurance provider.
To test this hypothesis, we calculate that we will need $214,241 to cover the cost of the salaries to deliver the care over the two years. This calculates out to $2,145 per family per year. Our goal is to help 10 families participate for 2 years!
Suggested Amounts:
Care for one family for 1 week: $41.21
One TSC educational video that all patients will have access to while waiting for appointment: $100
Care for one family for 1 month: $178.55
Care for one family for a quarter: $536
Care for one family for 6 months: $1,071
Care for one family for 1 year: $2,142
Care for one family for the duration of the two-year study: $4,285
Any donation is GREATLY appreciated and will help us reach our goal! Thank you!
Organizer
Julie Nerheim Scroggins
Organizer
Waukegan, IL
BCUREFUL
Registered nonprofit
Donations are typically 100% tax deductible in the US.
