HHS Prioritization for MBC
Below are two emails sent by myself and my awesome wife to the HHS team. If you arent aware, HHS has introduced a new program called the Commissioner’s National Priority Voucher (CNPV) which includes a number of terminal illnesses but not MBC at this time. Please send them a message and urge everyone to make MBC a national priority.
FDAOncology@fda.hhs.gov
OPT@fda.hhs.gov
seckennedy@hhs.gov
Dear FDA Team,
Nadia is my wonderful wife, the father of my children, and a cancer fighting beast. Our beautiful son was born in August of 2024. In December 2024 we learned that Nadia had breast cancer and in January 2025 we found out it was Stage 4. We have learned a lot in our six month fight. We have learned that the bulk of money raised through donations and gifts is allocated for Stage 3 and below research. As a matter of fact, only about 6% of total donations and gifts is devoted to stage 4 cancer patients. Additionally, we have learned that this is being treated as a chronic illness, meaning we will be dependent upon pharmaceutical companies for the rest of her life. The current state of research is being driven almost exclusively by big pharma and gaps are being ignored. Go to any metastatic cancer forum and the future seems to be to treat it as a chronic illness with no known cure. Furthermore, women are being diagnosed at younger and younger ages with breast cancer with no known cause for this shift. This is and should be unacceptable to everyone especially the oncologists who routinely treat cancer patients. Additionally, the number of people who are making a profit from Nadia’s cancer fight is absolutely the most disgusting part of the whole system of healthcare that we live under.
I strongly urge the FDA to:
- Include MBC in CNPV program as a top priority.
- Implement MBC research initiatives that prioritize effective treatment over profit motives.
- Revise the current guidance and standards of care at pregnancy for earlier detection of breast cancer. Conduct a breast exam at the beginning of a pregnancy!
The current state of research shows that the gains that are being made are in months and weeks. The average survivability is 5-10 years for MBC patients. These women deserve better. Please don’t ignore MBC, its impact, and its current state.
Nathan
Dear FDA Team,
I’m writing to you not just as a patient with metastatic breast cancer, but as a mother of two sons, one still a baby. I was diagnosed in late 2024, right before my 40th birthday, and like so many others with MBC, I live with the knowledge that my disease is incurable and will likely result in my death.
The newly announced Commissioner’s National Priority Voucher (CNPV) program could dramatically change outcomes for patients like me. Reducing FDA review times from a year to just one or two months gives real hope to those of us waiting for the next breakthrough to arrive in time.
Metastatic breast cancer kills 117 Americans every day. That’s over 44,000 lives a year in this country alone—many of them young women and mothers. We have waited decades for curative treatments. We can’t afford more delays.
Several therapies in development today show extraordinary promise, including targeted RNA drugs, cancer vaccines, oncolytic viruses, and precision immunotherapies. They deserve a faster path to patients. We deserve the chance to live and these medications might just give us that.
I urge the FDA to:
- Include metastatic breast cancer in the CNPV program
- Treat MBC as a national health priority, worthy of the same urgency as other terminal conditions
- Support companies working on MBC therapies to access this expedited review
Please don’t let metastatic breast cancer patients be left behind again. We are fighting with everything we have—please help give us a fighting chance.
Dying for a cure,
Nadia
Comments
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@natron0802 I'm very interested in this. Has the FDA specified what terminal illnesses will be addressed by the priority vouchers? The shorter time for review of new drugs seems like a very good thing!
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From what I can see, nothing has been firmly established. RFK got me more hopeful about our prognosis than I have been since getting the initial diagnosis. MBC patients and caregivers need to really unite and move the current treatments away from chronic disease and toward a cure.
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