The Cancer Treatment Outcome Transparency Act

Read the Cancer TOT Act

The Cancer Treatment Outcome Transparency Act instructs the FDA to create a nationwide Cancer Treatment Outcome Registry.
The CancerTOR will publish the survival and side-effect rates of cancer treatments administered in the United States.
To request access to review the most recent draft bill, send an email with the subject “Cancer TOT Act Request” to totact@cancertotnow.org.
Work in the office of a member of Congress? Email us at congress@cancertotnow.org.
Are you a doctor, researcher, registrar, advocate or data policy analyst? Email us at experts@cancertotnow.org.

Americans pay hospitals for cancer treatments.

We can pay directly or with public and private insurance benefits we’ve earned as citizens and employees. But the result is the same.

We choose the treatment. Hospitals get money.

Before selecting which cancer treatment to purchase, consumers have the right to compare treatment effectiveness.

This includes treatment outcome rates such as how often a treatment has actually killed cancer and how often its side-effects have harmed other patients.

Today, that’s impossible. Hospitals conceal the success and failure rates of the cancer treatments they sell.

The solution is simple. Demand Congress pass the Cancer Treatment Outcome Transparency Act.

**The Cancer TOT Act creates the first cancer registry for cancer patients.**

The Cancer Treatment Outcome Transparency Act instructs the FDA to create a public nationwide Cancer Treatment Outcome Registry.

The CancerTOR will publish national survival rates and side-effect rates of FDA-approved cancer treatments administered in the United States.

A Treatment-Specific Cancer Registry has dual purposes:

1

To protect the rights and safety of cancer treatment consumers 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.

Shockingly, our national cancer registry is not treatment-specific.

While beneficial for tracking overall survival rates and cancer incidence, it does not publish cancer treatment survival rates or side-effect rates in detail.

This makes it 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 with our national registry is determined by statewide elected officials, often susceptible to influence from the enormously powerful lobbying industry of their state’s largest hospitals.

This disjointed system has resulted in a shocking lack of transparency for the millions of Americans who pay hospitals to administer cancer treatments each year.

Until Congress acts, every cancer patient and doctor in the country will remain in the dark about how often treatments have actually killed cancer and how often treatment side-effects have harmed other cancer patients.

Take Action

It’s easy to make 3 Calls To Congress at 202-224-3121 and ask the capitol switchboard operator to transfer you to your 2 Senators and Congressperson.

Then, demand they protect cancer patients’ rights and safety by publicly committing to vote for The Cancer Treatment Outcome Transparency Act.

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

The national cancer registry data published by the CDC and NIH is broken down by cancer type and patient demographics but is not treatment-specific.
The data is helpful for patients researching understanding overall survival likelihood. But it is useless for patients and families weighing the risks vs. benefits of different treatment protocols.
A publicly-available Cancer Treatment Outcome 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 available toAmericanswith cancer.
America’s public national cancer registries do not publish detailed safety rates (injuries or deaths during treatment) or side-effect rates (injuries or deaths post-treatment) of individual treatments or treatment protocols.
This lack of transparency 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 actually kill cancer and how often treatment side-effects have harmed other patients before they pay a hospital for a treatment.
That right is being violated.
It’s easy for hospitals to claim a treatment is effective or that side-effects are rare when hospitals can keep the success and side-effect rates of the treatments they sell hidden from their customers.
Future cancer patients’ lives are being 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 CanceTOR 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 hoarding of life-saving treatment outcome data so it can be utilized by doctors and researchers to develop new therapies and improve the quality-of-life of cancer patients.
Treatment Outcome Transparency will allow doctors to craft more effective and ethical treatment protocols and remove roadblocks for cancer researchers.

Demand Congress Pass The Cancer TOT Act