Cancer Prevention and Treatment Fund A voice you can trust in prevention, treatment, and policy Biennial Report 2018-2019 2 MESSAGE FROM THE PRESIDENT We persuaded Congress to proven accurate and secure for protect all Americans’ access to all patients. affordable health insurance, We trained and continue to including those with pre- work with 100 patient existing conditions such as advocates from across the cancer. country on how to make their We trained researchers and voices heard to improve journalists to better medical research on cancer communicate the results of treatments and prevention. research on which treatments We updated our free booklet are best for which patients, and for women with ductal publicized important new study carcinoma in situ (DCIS) and results. our free booklet for men about We urged the Food and Drug prostate cancer screening. We In 2018 and 2019, we helped Administration (FDA) to made both booklets widely thousands of adults and children require long-term studies of the available to patients and family get the best possible medical treat- safety and effectiveness for all members across the country. ment; we published articles and medications, implants, and Whether we were explaining well- reports that will continue to help vaccines, so that consumers physicians provide better medical established and complicated could make well-informed treatment; and we had a major im- medical research information to decisions for themselves and pact on the many invisible govern- families and health professionals, ment policies that can reduce or their children. or making sense of controversial new research on vaccines, increase our risk of cancer. We testified before the medications, or toxic chemicals in Consumer Product Safety Our cancer helpline helped our homes and communities, we Commission, urging them to women, men, and children like scrutinized research and provided you across the country. We ban chemicals in children’s useful, understandable, and helped people decide which products and playgrounds that unbiased information to patients, screening tests and treatments can cause cancer. consumers, policy makers, and the were best for them, and which We urged city and state media. were likely to do more harm legislators to change laws that Our research, training and than good. We helped people have resulted in cancer-causing educational efforts continue to reduce their risk of cancer and chemicals in artificial turf and represent the interests and needs choose the safest and most playgrounds, and responded to of all the men, women, and effective treatments. parents’ requests for children who are otherwise left out of life-saving public health deci- We had published a study in information. sions. As always, we will continue JAMA Internal Medicine We testified before the FDA to to advocate for all Americans on scrutinizing 18 ineffective ensure that cancer treatments matters that are crucial to the cancer drugs that are still being are analyzed for their health of adults and children prescribed. We are informing effectiveness in women, people nationwide. doctors and patients that only of color, and people over the one was proven to improve age of 65. Unfortunately, this is quality of life, and these new not always the case. ineffective cancer drugs cost We educated legislators that just as much or more than the ones that are effective – up to innovative software and IT Diana Zuckerman, Ph.D. $170,000 per patient. used in hospitals needs to be 3 PROGRAM AND POLICY HIGHLIGHTS We were shocked a new cancer drug has benefits that that the new outweigh the risks. The evidence has to cancer drugs that show that the patient has a good chance are not proven to of benefitting. In contrast, an benefit patients experimental drug, no matter how in any way cost “promising” is not proven to have just as much as benefits that outweigh the risks. It is the ones that are still being studied, and it might not have effective – up to been tested on more than a few $170,000 per patients. patient. In fact, the Some patients are willing to take the most expensive of chance on experimental drugs, but they the 18 cancer drugs should be told that they are was a thyroid cancer experimental and they shouldn’t have to Do Expensive Cancer drug (also called Cabometyx of pay for them. Experimental drugs Treatments Work Better? Cometriq) that had no benefit to survival should be provided for free by the compared to placebo, and also caused Cancer drugs often drain a pa- company that makes them, because patients to have a worse quality of life. tient’s energy and joy for living, companies greatly benefit from but don’t always provide much Meanwhile, the ineffective cancer drugs information provided by patients in benefit. In some cases, the cancer remain on the market, and patients, well-designed studies. may stop growing or even begin to Medicare, and insurers are still paying As shown in our study quoted above, shrink, but ultimately the patient for them. When we asked FDA officials even ineffective cancer drugs can cost may not live even a day longer. why they haven’t rescinded the approval well over $100,000 per patient. The of ineffective cancer drugs, they stated Cancer drugs do not have to be proven prices are usually much higher in the that they still think those drugs might be to prolong anyone’s life in order for the U.S. than other countries. In other effective. They pointed out that once a Food and Drug Administration (FDA) to words, U.S. patients are subsidizing the cancer drug is approved, it is very approve them. And once the drugs are cost of cancer drugs in other difficult to keep patients in a clinical approved, thousands of patients start countries. That isn’t fair, and we’re trial long enough to know if the drug taking these drugs and paying for them, working with Congress to make cancer actually saves lives. not realizing that there is no evidence of drugs more affordable. a meaningful health benefit. However, In other words, the FDA is approving Prevention the FDA often requires that companies cancer drugs on the basis of short-term, keep studying the drugs to find out if inconclusive data knowing that we may Cancer can be prevented, thanks those medicines are actually extending never know if those drugs truly are safe to research proving which of your lives. and effective or not. habits can reduce your chances of developing cancer or of cancer Our Cancer Study We Need New Cures coming back after treatment. The Cancer Prevention and Treatment Some physicians and patients be- Whether the research is on diet, Fund published a study in JAMA Inter- lieve the FDA blocks access to exercise, smoking, vaping, radiation, nal Medicine of 18 cancer drugs that had effective new cancer treat- carcinogens in artificial turf and not been proven to help patients live ments. We disagree. We strongly playgrounds, or medications that can longer. We found that only one was support the FDA’s “Expanded cause cancer, we’re scrutinizing what is proven to improve quality of life. Two Access” program, which provides known and not known, and providing made quality of life worse, and the other patients access to experimental the information to you and to policy 15 new cancer drugs either did not drugs that have at least some makers for free. improve quality of life, or there is no evidence that they work. research evidence to know if they do or The FDA protects patients by requiring not. well-designed clinical trials to prove that “Hopefully, every woman finds her way to your Web site. Your article has helped me arm myself with information I will need to select the right surgeon.” —Annamaria Picollo, Prospect, Oregon 4 “I sailed through the surgery, and am thrilled – a dramatic change in course for me after discovering your work. My gratitude to you is beyond words.” —Harriet Lerner, psychologist and best-selling author of The Dance of Anger Working to Reduce Overtreatment of Breast Cancer Every year, more than 250,000 women are diagnosed with breast cancer or "pre-cancerous" condi- tions such as ductal carcinoma in situ (DCIS) that may never become cancer. DCIS and other types of stage zero breast cancer will some- times go away without any treat- ment. Treatment is almost always chosen, however, because experts cannot yet predict which cancers will go away and which will be- come dangerous. Even so, experts agree that more than 75 percent of these women do not need mastectomies if they have access to understand their treatment options, for common ailments, like diabetes, can other, equally safe treatment options. doctors communicate more clearly with even increase the chances of patients Yet, as unbelievable as it may seem, in their patients, insurance companies developing cancer. We are working to some parts of our country, medically cover the best treatments, and doctors improve these policies to prevent unnecessary mastectomies are increas- and patients know the best ways to products that are meant to help us from ing, not decreasing. prevent cancer. harming us instead. Some women will undergo a mastecto- Which Diagnostic Tests Prior to its release in 2018, we worked my because the surgery is less expensive and Treatments are Best? with award-winning filmmakers who than a lumpectomy—a decision made by created and disseminated The Bleeding their insurance company, not by them. Every year, the FDA reviews thou- Edge, a documentary about medical Some will be so frightened by the word sands of new diagnostic tests and implants and other devices that have "cancer" that they will make a hasty other medical devices and allows risks that aren’t explained to patients or treatment decision they will later, and them to be sold—without first re- their physicians.