Patient and Caregiver Groups Press Congress to Preserve Paid Family and Medical Leave in Reconciliation Package

October 12, 2021

WASHINGTON, D.C., October 12, 2021—More than 20 patient and health care groups sent a letter to Congressional leadership and the Administration today making clear the need to preserve the nation’s first-ever paid family and medical leave program as part of forthcoming reconciliation legislation. The groups, which include the American Cancer Society Cancer Action Network (ACS CAN), the American Heart Association, the Epilepsy Foundation, Muscular Dystrophy Association, UsAgainstAlzheimer's, and others, set forth the urgent need millions of Americans have to access paid time away from work when undergoing medical treatment or caring for a loved one who is ill. 

The letter implores lawmakers to provide this necessary paid time off to the thousands of patients who are diagnosed with a serious condition every day that forces them and their families to try and balance, work, treatment, and finances. 

“While you are negotiating budget targets in the billions, we ask you to remember the working patients and caregivers who are struggling to balance their own budgets as they get treatment or recover from their illness, or give care to loved ones, and try to still earn a paycheck,” the letter states. 

According to the Bureau of Labor Statistics, less than a quarter of private-sector workers have paid family leave through their jobs – leaving more than 88 million workers without paid family leave to care for a loved one.  Only 42 percent of workers have access to personal medical leave through an employer-provided short-term disability insurance policy, and fewer than 60 percent of workers qualify for job-protected, unpaid leave under the Family and Medical Leave Act (FMLA). Workers of color, low-wage workers and single parents are disproportionately excluded from leave options, despite also being disproportionately diagnosed with serious illnesses – meaning the very patients who are more likely to need paid family and medical leave are the ones least likely to have access to it.  

“Our organizations have long fought to ensure that patients have access to care to treat their serious illnesses and health conditions. Being able to take time off work is fundamentally an access to care issue, and our current patchwork system of paid and unpaid leave forces some patients and caregivers to choose between treating their illness and keeping their job or having enough income to survive – while also exacerbating health inequities,” states the letter. 

Last month a House committee approved legislation as part of the reconciliation process that would create a national paid family and medical leave program. However, as negotiations continue between the House, Senate, and White House, lawmakers are weighing the possibility of cuts as a means to reduce the bill’s overall cost. The letter urges lawmakers to ensure paid leave is included in the final package.

“Providing millions of Americans the support they deserve to get treatment or care for someone going through a major health issue, like cancer, is not something we can delay,” said Lisa Lacasse, president of ACS CAN. “Families have struggled for far too long to be told their wellbeing will have to wait yet again. We urge Congress to do what’s right and preserve comprehensive paid family and medical leave for Americans in their final reconciliation package.”  

Read the full letter.

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Patient groups and partners who signed the letter: Alliance for Aging Research, ALS Association, American Cancer Society Cancer Action Network, American Heart Association, Association of Oncology Social Work, Cancer Support Community, Child Neurology Foundation, COVID Survivors for Change, Epilepsy Foundation, Epilepsy Foundation West Virginia, Friends of Cancer Research, Hemophilia Federation of America, Muscular Dystrophy Association, National Alliance for Caregiving, National Coalition for Cancer Survivorship, National Organization for Rare Disorders, National Patient Advocate Foundation, Susan G. Komen, Triage Cancer, UsAgainstAlzheimer’s, WomenHeart—The National Coalition for Women with Heart Disease


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