When you're diagnosed with a terminal illness, every day matters. Yet our government makes some of the most vulnerable Americans wait five months before they can access their own Social Security Disability Insurance benefits — even when their life expectancy is shorter than the waiting period.
This week, Congresswoman Diana Harshbarger (R-TN) and Senator Mike Lee (R-UT) re-introduced the Immediate Access for the Terminally Ill Act, legislation that would finally end this senseless waiting period for Americans battling terminal diseases.
"For patients facing a terminal illness, time is a luxury they do not have. A five-month wait period for disability benefits is a bureaucratic cruelty," said Terry Wilcox, Co-Founder and Chief Mission Officer of Patients Rising.
"We applaud Congresswoman Diana Harshbarger and Senator Mike Lee for standing up for the most vulnerable with the Immediate Access for the Terminally Ill Act."
The Current System Fails Our Most Vulnerable
Today, Americans unable to work due to terminal illness qualify for SSDI monthly benefits. These benefits are earned after years of paying into the system. Yet despite past reforms, most terminally ill patients must wait five months before receiving their first check.
Families face mounting medical bills and lost income during the most difficult time of their lives, Some patients die before ever receiving a single benefit payment. Others lose their homes or drain their savings waiting for help that arrives too late.
"No one diagnosed with a terminal illness should spend their final months tangled in government red tape," said Congresswoman Harshbarger. "At life's most difficult moments, families deserve compassion, certainty, and peace of mind."
She added, "This legislation ensures timely access to earned benefits while remaining fiscally responsible, and I'm proud to work with Senator Mike Lee to make it law."
A Compassionate Solution That Respects Patient Choice
The Immediate Access for the Terminally Ill Act offers eligible Americans a choice: access their monthly SSDI benefits immediately with a 7% reduction, or wait the current five months and receive full benefits.
"The current 5-month waiting period for disability benefits keeps terminally ill American workers from actually being able to use them in time," said Senator Mike Lee. "Americans suffering from debilitating, life-threatening conditions need a better solution. The Immediate Access for the Terminally Ill Act will give workers a pathway to bypass the burdensome waiting period and receive the help they need for end-of-life care in a timely manner."
Patients would qualify if they have a disease on the Social Security Compassionate Allowance List, suffer from a condition with no known cure, and have an average life expectancy of five years or less from diagnosis.
Currently, 58 diseases meet these criteria.
This compassionate legislation empowers patients with dignity and control when families need it most. It provides essential financial relief from the costs of end-of-life care at a time when every resource matters.
Fiscally Responsible Reform
The Social Security Administration's own analysis shows this legislation would save the program $5.6 billion over the next decade while improving Social Security's long-term balance. The bill also includes common-sense program integrity reforms, including preventing individuals from collecting both SSDI and unemployment benefits simultaneously.
Patients Rising is grateful to Congresswoman Harshbarger and Senator Mike Lee for their unwavering commitment to put patients first. This legislation recognizes that bureaucratic red tape has no place between terminally ill Americans and the benefits they've earned.
Join us in supporting the Immediate Access for the Terminally Ill Act. Contact your representatives and tell them no American facing a terminal diagnosis should spend their final months fighting for access to the benefits they earned.