Results From The ATTR Affordability Study
About This Study
The study is the first of its kind, providing the most comprehensive assessment of the financial toxicity associated with the treatment of ATTR amyloidosis.
Therapeutics have been approved that can slow the disease progression of ATTR to improve survival, hospitalizations, and quality of life, however, the cost of these therapeutics may be an obstacle for patients. The Amyloidosis Research Consortium (ARC) conducted an online survey of individuals with ATTR (hereditary or wild-type) amyloidosis to increase the understanding of the financial toxicity in ATTR patients and the impact it may have on patients and their families.
Results will help ensure that the experience of ATTR patients is accurately understood to advocate for affordable and equitable access to treatment in discussions on policies and programs.
What We Measured
ARC asked ATTR patients and their caregivers about the average monthly costs of managing ATTR and their ATTR treatment. Financial toxicity is an objective measure of the harmful effect of financial stress caused by the cost of care on the well-being of patients and their families. Financial toxicity was measured using the Comprehensive Score for financial Toxicity-Functional Assessment of Chronic Illness Therapy (COST-FACIT). The COST-FACIT has been used to measure financial toxicity in patients with other chronic diseases including cancer and multiple myeloma.
What We Learned
Results from the ATTR Affordability Study
Who participated in this study:
564 participants from all over the US
28% of participants were in MA, CA and FL
Today I am only paying for one expensive treatment however it is likely that multiple treatments are required to suppress as well as improve the symptoms. I am concerned that there is no way that I can pay for two or more highly expensive treatments.
of patients reported being on more than one ATTR treatment.
Most patients were on Vyndamax, Onpattro, or other treatments for ATTR which mostly included investigational drugs as part of a clinical trial.
of patients with ATTR are experiencing some financial toxicity of managing their ATTR, which is a comparable to patients with cancer.
Financial toxicity is an objective measure of the harmful effect of financial stress caused by the cost of care on the well-being of patients and their families.
of patients used saving, borrowed money, or made trade-offs such as not taking a vacation, selling a house, to pay for their treatment
is the amount patients are paying on average per month for the management of their ATTR amyloidosis
Average Monthly Cost of Managing ATTR
Regardless of assets- those of us on fixed incomes worked hard to achieve a certain level of certainty about our future. We are living longer, but less able to work in the same way as the past... We should NOT have to dip into savings, etc. to pay for an incredibly high copayment. … The system is broken and complicated… ”
1 in 5 patients have had to delay the start of treatment either due to cost or insurance coverage.
The majority of delays were due to insurance coverage.
3 in 4 Patients who participate in a clinical trial do so to get access to free treatment.
Co-Pay Assistance Programs
Patient assistance programs are usually sponsored by pharmaceutical manufacturers. These programs are promoted as a “safety net” for Americans who have no health insurance or are underinsured. The goal of financial assistance programs for qualifying individuals is to provide financial assistance to help these patients access drugs for little or no cost. Patients must meet specified eligibility criteria to qualify for assistance.
are enrolled in a co-pay assistance program
applied but did not qualify for a program
Insurance coverage is a huge issue and varies for the available meds and different insurance plans. After having to appeal denial 3 times to have approved coverage in 2018 I had no issues until the first of 2021 when my insurance company suddenly decided to deny coverage for the same Med yet again. I am in the 3rd appeal now. My prescribing neurologist is as frustrated as I am!”
It is not just the actual treatment cost. It is the other things (other prescriptions, supplements, loss of work for the day, paying outside services) that I would normally do myself but can no longer do.”
I need to plan months ahead for the medication cost and the selection of food, low sodium and cost associated. i.e. mom’s meals. The prescription drugs are very expensive!”
Anxious about receiving financial assistance in the future. Current year of assistance ends at the end of 2021 and the cost of approximately $36,000 per year would begin to impact our financial situation.”
Using this to educate the community on the true cost of ATTR to patients.
Advocating for affordable and equitable access to treatment moving forward.