Jules Netherland lives in the Bronx, where she works as a senior adviser at a social justice nonprofit.
“I've had a really rich and full career,” she said. “I like working, but it is just incredibly stressful and difficult right now to do so.”
Netherland, 58, was diagnosed with breast cancer in 2019. A few years later, she learned it had spread.
“What I'd really like to do in order to take care of my health, and really manage all of the medical appointments as well as the side effects, is to be on disability,” she said. “But I simply cannot afford to do that.”
As Breast Cancer Awareness Month draws attention to early detection and survivorship, patients with metastatic breast cancer say they’re being left behind. A federal bill meant to shorten the wait for benefits has bipartisan support but remains stalled in Congress, and advocates say a New York representative is part of the reason why.
The bill and the holdout
The Metastatic Breast Cancer Access to Care Act would waive the five-month waiting period for Social Security Disability Insurance and the 24-month delay for Medicare coverage for people diagnosed with stage-four breast cancer.
Advocates argue patients cannot afford to wait that long for a disease that, according to the National Institutes of Health, has an average survival of about two to four years.
“This is inhumane treatment for people who have paid into the system,” said Christina Thompson, executive director of the Breast Cancer Coalition of Rochester. “You are telling them that their life isn't worth waiving 29 months?”
"This is inhumane treatment for people who have paid into the system."Christina Thompson, Breast Cancer Coalition of Rochester
The bill has 157 cosponsors and bipartisan support, but no scheduled vote. In New York, Thompson said Rep. Claudia Tenney, a Republican on the House Ways and Means Committee, has resisted meeting with advocates and has not signed on.
“It’s mind-boggling,” Thompson said. “She’s actually frozen us completely out of her office.”
Tenney could not be reached for comment. Her website says she supports the bill, though she has not cosponsored it. Thompson said Tenney previously cited fears that people might “fraudulently say that they have metastatic breast cancer” to receive benefits.
WXXI found no documented cases of people faking metastatic breast cancer to gain disability benefits or Medicare coverage.
Why the wait?
The mandatory waits for these programs go back decades.
The Social Security Administration says the five-month delay prevents people with short-term disabilities from receiving benefits.
According to the Kaiser Family Foundation, the 24-month Medicare wait was rolled out when the program was expanded to people with disabilities under the age of 65 to control costs, and because lawmakers assumed younger adults with disabilities had other coverage.
Exceptions to these waits already exist for people with ALS and end-stage renal disease, whose Medicare coverage begins immediately. Advocates argue that metastatic breast cancer, which is terminal and requires lifelong treatment, deserves the same exemption.
“It seems to me like it's a calculus hoping that a lot of seriously ill people will die before they qualify for Medicare,” Netherland said. “That's what it feels like to me: Let's wait two years and see if you die, because then we won't have to pay for your care.”
The bigger picture
The debate comes as Congress considers limits on long-term federal spending, including Medicare and Medicaid reimbursements and research funding. Advocates say that uncertainty directly affects women with metastatic breast cancer through higher costs, fewer clinical trials, and delayed access to disability income.
An estimated 155,000 Americans are living with metastatic breast cancer, according to the Metastatic Breast Cancer Alliance. For them, every month matters: financially, medically, and emotionally.
Netherland hopes sharing her story will help other people with her diagnosis.
“I have a lot of support, and I’m very fortunate in that regard."
October is Breast Cancer Awareness Month
If you are living with breast cancer or suspect you may have it, these programs can help you access screenings, treatment, and financial support in New York State:
New York State Medicaid
Provides coverage for low-income individuals, including those with serious illnesses.
Eligibility: Income- and asset-based; special provisions for “medically needy” patients.
How to Apply:
- Online: https://www.health.ny.gov/health_care/medicaid/how_do_i_apply.htm
- Local Department of Social Services
Cancer Services Program
Free breast, cervical, and colorectal cancer screening and diagnostic services for uninsured or low-income New Yorkers.
Services include: Screening, diagnosis, referral to treatment, and support services.
Social Security Disability Insurance Guidance
SSDI provides income support for individuals with serious disabilities, including metastatic breast cancer.
- Information and application: https://www.ssa.gov/benefits/disability/
Breast Cancer Support and Advocacy Resources
Breast Cancer Coalition of Rochester: Support, advocacy, and education for patients and survivors.
- Website: https://www.bccr.org/
Metastatic Breast Cancer Alliance: National advocacy, information on clinical trials, and patient resources.
- Website: https://www.bcalliance.org/
