The Cancer Treatment Outcome Transparency Act

The Cancer TOT Act creates the first nationwide cancer registry comparing cancer treatment survival and side-effect rates.

Shockingly, existing state cancer registries are not treatment-specific. While beneficial for monitoring cancer incidence, they do not track or compare cancer treatment survival rates and side-effect rates in detail.

This makes them useless for patients weighing the pros and cons of different treatment options and allows predatory hospitals to exaggerate the success rates of their most profitable treatments.

The data each state cancer registry collects and shares are determined by statewide elected officials, often susceptible to influence from the enormously powerful lobbying industry of their state’s largest hospitals.

This system has resulted in a lack of Treatment Outcome Transparency for the millions of Americans who pay hospitals for cancer treatments each year. Every cancer patient and doctor in the country is in the dark about how often treatments kill cancer and how often treatments kill or harm cancer patients.

The Cancer Treatment Outcome Transparency Act (aka The Cancer TOT Act) will create the first nationwide Treatment-Specific Cancer Registry tracking both survival rates and side-effect rates of FDA-approved cancer treatments.

The Cancer TOT Registry has dual purposes:

1

To protect the rights and safety of consumers of cancer treatments through publicly available and easy-to-understand data visualizations that will allow cancer patients and their families to understand the risks vs. benefits of different treatments and combination treatment protocols.

2

To end hospitals' siloing of real-world cancer treatment outcome data by providing doctors, researchers, registries and regulatory agencies access to standardized and centralized downloadable datasets that can be used to improve the quality-of-life and survival rates of cancer patients.

What’s Next?

The summary and text of the first draft of The Cancer TOT Act is now complete. In the coming months, a finalized version will be published here.

To request advanced access, please send an email with the subject “Cancer TOT Act” to updates@cancertotnow.org.

If you work in the office of a member of Congress and would like to schedule a meeting to discuss the benefits of The Cancer TOT Act, please email us at congress@cancertotnow.org.

If you are a doctor, researcher, registrar or health policy analyst, you can contribute your expertise to ensure The Cancer TOT Act maximally empowers clinicians and researchers with missing data they need to protect cancer patients’ safety. Email us at experts@cancertotnow.org.

To receive updates about The Cancer TOT Act’s path through Congress, please enter your email in the form below or send an email request to updates@cancertotnow.org.

7 Reasons The Cancer TOT Act is Necessary

  • Existing state cancer registries are not treatment-specific, making them helpful for understanding overall survival likelihood, but useless for patients and families weighing the risks vs. benefits of different treatment protocols.

    A publicly-available Cancer TOT Registry, with filters for treatments, cancer type, survival rates, side-effect frequency and patient demographics, will vastly improve on the important but limited data currently being collected by state cancer registries.

  • Currently, cancer registries do not track detailed safety rates (injuries or deaths during treatment) or side-effect rates (injuries or deaths post-treatment) of individual treatments or treatment protocols.

    This prevents cancer patients and their families from confidently collaborating with their doctors on treatment plans that prioritize both survival and quality of life.

  • No federal laws or registries require hospitals to disclose when cancer treatments cause patients to die or suffer catastrophic injuries.

    Hospitals are essentially on the honor system.

    But the honor system doesn’t work when hospitals hoard invaluable treatment outcome data to compete with each other for patients or are financially motivated to exaggerate the safety benefits of treatments that maximize hospital profits.

  • Instead of collaborating with the medical community, hospitals have chosen to silo cancer treatment outcomes internally, keeping life-saving data secret from patients and even from other doctors.

    This means if you are diagnosed with cancer, no matter where you seek care, your life will be needlessly endangered because every doctor in the country is in the dark about how often treatment side-effects have killed or harmed patients at other hospitals.

  • Cancer patients and their families have the right to know how often treatments kill cancer and how often treatments kill patients.

    Those rights are being violated.

    It’s easy for hospitals to claim a treatment is effective or that side-effects are rare when hospitals can keep it secret after treatment side-effects result in patients suffering or dying.

  • It is a disgrace that future cancer patients’ lives are needlessly endangered because the overwhelming majority of past cancer patients’ survival and side-effect data is being kept secret by hospitals. 

    One of the largest benefits that The Cancer TOT Registry will provide is ending the unnecessary suffering of cancer patients caused by doctors and patients being unaware of how many former patients have died or suffered catastrophic side-effects from cancer treatments.

  • The Cancer TOT Act will put an end to hospitals' selfish and destructive hoarding of invaluable treatment outcome data so it can be utilized by doctors and researchers to cure and improve the quality-of-life of cancer patients.

    Today, hospitals’ lack of transparency is endangering cancer patients’ lives.

    Forcing hospitals to stop keeping cancer treatment outcomes secret will allow doctors to craft more effective and ethical treatment protocols and remove roadblocks for cancer researchers, while also protecting patients from predatory behavior and minimizing the likelihood of patients suffering.