Hospitals hide cancer treatment survival rates from their customers.
American hospitals sell cancer treatments but conceal the treatments’ effectiveness. That violates your consumer rights.
The Cancer Treatment Outcome Transparency Act will create the first public Cancer Treatment Outcome Registry.
The CancerTOR will publish nationwide cancer treatment survival and side-effect rates.
And it may save your life.
American cancer patients are cancer treatment consumers.
Cancer TOT Now protects their rights and safety.
Who we are:
Cancer Treatment Outcome Transparency Now is a consumer watchdog for Americans with cancer.
Our mission:
To end American hospitals’ concealment of real-world cancer treatment survival and side-effect rates from American consumers.
The problem:
Americans pay hospitals for cancer treatments.
But American hospitals hide cancer treatment survival and side-effect rates from their customers in secret “hospital registries.”
This makes it impossible for American cancer treatment consumers to make an informed choice before they pay hospitals for cancer treatments.
We believe:
Americans with cancer have the right to know how often treatments have actually killed cancer and how often treatment side-effects have caused bodily harm.
When hospitals conceal the effectiveness of the cancer treatments they sell, hospitals violate your consumer rights.
How we’ll win:
Our singular focus is to convince the majority of the 535 members of Congress to pass The Cancer Treatment Outcome Transparency Act.
The Bill:
The Cancer TOT Act instructs the FDA to collect real-world “treatment outcome” data currently siloed in secret hospital registries.
This data is to be compiled into a transparent national cancer registry for American cancer treatment consumers: The Cancer Treatment Outcome Registry.
The Registry:
The CancerTOR will publish real-world survival and side-effect rates of cancer treatments administered in the United States.
The de-identified data will be displayed using interactive data visualization tools and will be filterable by treatment, cancer type, patient demographics and more.
Importantly, this life-saving data will be published online for use by doctors, researchers and American cancer treatment consumers.
You Can Help:
Make 3 Calls To Congress at 202-224-3121 and ask the capitol switchboard operator to connect you to the office of your Congressperson and 2 Senators.
Then demand your representatives protect Americans’ rights and safety by publicly committing to vote YES for The Cancer TOT Act.
Learn more ways to contact Congress or get involved here.
Every American with cancer is in the dark.
America’s national cancer registry is not treatment-specific.
HHS publishes “population-based” cancer registry data. It helps patients view overall survival rates of different cancer types.
But this survival rate data does not include which cancer treatments are used (surgery, chemotherapy, radiation therapy, immunotherapy, target therapy, etc.)
As a result, it is impossible for American consumers to compare the benefits (survival rates) or drawbacks (side-effect rates) of cancer treatments before they pay.
Hospital cancer registries are treatment-specific.
Meanwhile, there are hundreds of private “hospital registries” in the U.S. Each collects detailed survival and side-effect data for the cancer treatments they sell.
But no laws require hospitals to share their “treatment outcome” rates with their customers or competitors. So they don’t.
This secrecy allows hospitals to compete with each other for customers and (in some cases) to exaggerate success rates or downplay risks of their most profitable treatments.
CancerTOR: a national treatment-specific cancer registry.
The Cancer TOT Act creates a national cancer registry modeled after treatment-specific hospital registries.
The Cancer Treatment Outcome Registry will publish survival and side-effect rates of cancer treatments administered in the U.S.
Americans with cancer will be able to view data visualizations of real-world treatment outcome data with filters for treatments, cancer type, demographics and more.
This will allow patients to make an informed choice for a life-or-death decision before they pay hospitals.
A Treatment-Specific Cancer Registry May Save Your Life.
Why Transparency Matters
Treatment Outcome: The result of a medical intervention on a cancer patient's health condition.
Transparency: Hospitals’ disclosure of treatment-specific survival and side-effect data.
Treatment Outcome Transparency (TOT) allows cancer patients and their doctors to make safe and informed treatment decisions.
Today, hospitals’ lack of transparency is endangering cancer patients’ lives and violates their consumer rights.
Abusing The Honor System
No federal laws require hospitals to disclose cancer treatment survival rates to their customers.
No federal registries track if cancer treatments cause patients to die or suffer catastrophic injuries.
Hospitals are on the honor system.
But the honor system doesn’t work when hospitals are run like businesses. They have financial motivation hoard data to compete with each other for customers and to exaggerate the safety benefits of treatments that maximize hospital profits.
Cancer Patients’ Rights
Before they pay hospitals, cancer patients have the right to know how often treatments kill cancer and how often treatments kill or harm 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.
Keeping Side-Effects Secret
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.
This is a conflict between hospitals and Americans.
Congress must choose a side.
There are 535 Members of Congress. 3 of them work for you.
Make 3 Phone Calls to your 2 Senators and your Congressperson.
Demand they publicly commit to vote for The Cancer TOT Act.
Protect yourself, your family and every future cancer patient in the country.
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It is completely unacceptable and totally avoidable that real-world side-effect and survival rates of cancer treatments are being concealed from patients by hospitals.
A public Cancer Treatment Outcome Registry will benefit everyone in the country, and one day, it might save your life or the life of someone you care about more than anything in the world.
Call the only 3 people who matter (your Congressperson, your Junior Senator and your Senior Senator) and ask them to publicly commit to voting “Yes” for The Cancer TOT Act.
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If you’re a doctor, researcher, registrar or health policy analyst, you know that forcing hospitals to stop keeping cancer treatment outcomes secret will allow doctors to craft more effective and ethical treatment protocols, remove roadblocks for cancer researchers, protect patients from predatory behavior and minimize the likelihood of patients suffering.
Contribute your expertise to ensure The Cancer TOT Act empowers clinicians and researchers with missing data they desperately need and provides maximum protection for cancer patients.
Email us at experts@cancertotnow.org.
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If you’re a cancer patient or family member of a cancer patient and would like to share your story about how a hospital's lack of transparency may have caused you or your loved ones harm, email us at patients@cancertotnow.org.
In the coming months, we will begin to share examples of how some hospitals have weaponized their reputations to keep cancer treatment outcomes secret.
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535 members of Congress must choose whether they will protect cancer patients or hospital profits.
Doing nothing is a decision.
If you represent a Congressional office and have questions or requests related to The Cancer TOT Act, email us at congress@cancertotnow.org.