Deadliest cancers receive less research funding from patient advocacy groups
Cancer-related nonprofit organizations play a crucial role in supporting medical research and patient advocacy, generating nearly $6 billion in revenue annually, according to a study published in Journal of the National Comprehensive Cancer Network.
Much of the money raised has been directed toward breast cancer, pediatric cancers, and blood cancers like leukemia and lymphoma. Nonprofits that target these cancers reported revenue of nearly $1 billion from 2015 to 2016, according to the study.
Other cancers that affect more individuals and, in many cases, have higher mortality rates received far less research funding from disease-specific nonprofits. These include lung cancer, colon/rectal cancer, melanoma and most cancers that involve digestive, reproductive or urinary systems.
Suneel D. Kamath, MD, who, at the time of the study, was chief fellow in the division of hematology/oncology at Northwestern University Feinberg School of Medicine, said the lack of attention colon cancer received compared with breast cancer first struck him at the beginning of his fellowship.
“I realized how many people die of these diseases each year, and without enough advocacy efforts behind them,” Kamath, now a gastrointestinal oncologist at Cleveland Clinic Taussig Cancer Institute, told HemOnc Today. “Their voices are not represented.
“Because a cancer like pancreatic cancer is so deadly, patients unfortunately don’t live long enough to tell their stories,” he added.
Revenue vs. burden
Kamath and colleagues compared the amount of nonprofit organization funding devoted to specific cancers with the burden of those cancers on society. The researchers examined tax returns of disease-specific, 501(c)(3) nonprofit organizations with more than $5 million in annual revenue. They used the SEER database to determine the incidence, mortality rates and person-years of life lost (PYLL) for each cancer type they studied.
The economic analysis showed that 119 cancer-related nonprofit organizations generated $5.98 billion in revenue in 2015 to 2016, with approximately three-quarters (76.8%) generated by general cancer support organizations, such as the American Cancer Society, that do not focus on a single cancer type.
Of the remaining $1.39 billion in revenue, 33.2% ($460 million) was dedicated to breast cancer, 14.5% ($201 million) to leukemia, 12.8% ($177 million) to pediatric cancers and 10.5% ($145 million) to lymphoma.
At the bottom of the revenue list were organizations advocating for liver and bile duct cancer ($5.8 million), cervical cancer ($5.4 million) endometrial cancer ($5.4 million) and sarcoma ($5.1 million). No organizations met the minimum revenue criteria for kidney, bladder, gastric or esophageal cancers.
Based on their findings, the researchers concluded that breast cancer, leukemia, lymphoma, pediatric cancers, neuroendocrine cancers and nonmelanoma skin cancer appeared well-funded in proportion to their incidences. However, gastrointestinal cancers (colorectal, pancreatic, liver and bile duct), gynecologic cancers (ovarian, endometrial and cervical), lung cancer, prostate cancer, melanoma, sarcoma and brain cancers all appeared poorly funded in proportion to their incidences.
The trends persisted when Kamath and colleagues compared mortality with annual revenue.
Breast cancer, leukemia, lymphoma and pediatric cancers appeared well-funded in proportion to their annual number of deaths and PYLL, whereas all other cancer types, including gastrointestinal, gynecologic, lung, prostate and melanoma, were poorly funded in proportion to these measures.
Cancers with well-funded research efforts — breast cancer, leukemia, lymphoma and pediatric cancers — have much higher survival rates, Kamath said.
“A large portion of patients with these diseases get them at a young age and survive for decades after and become advocates to raise funds for research,” Kamath said. “You don’t see this for pancreatic cancer, due to the nature of the disease. Lung, bladder and ovarian cancers are other good examples where patients don’t live long enough to advocate for themselves.”
Impact of stigma
Another fundraising roadblock is a perceived stigma around certain types of cancers — those often associated with high-risk individual behaviors. Associations include smoking with lung cancer, sun exposure with melanoma, and alcoholism with liver cancer.
Kamath said the stigmas “absolutely” still exist, and, in the case of lung cancer, the data appear to reinforce the perception.
“The unfortunate truth is that the cancer rate in nonsmokers has increased quite a bit, but if you look at the breakdown, 80% to 85% of all lung cancer is still due to smoking,” he said.
Some of the previous messaging and public service announcements have rightfully pointed to smoking as the primary cause of most lung cancer and called on people to quit smoking, Kamath said. However, these messages give the impression that all lung cancer is caused by smoking, which is not true and leads to lung cancer receiving less in terms of donations to fight the disease.
“The first thing you think of when you hear lung cancer is smoking,” Kamath said, adding that liver cancer also has been associated with stigmatized behavior.
“Liver cancer is not specifically linked to alcohol use, but when it comes to any disease of the liver, people tend to assume that it’s due to alcoholism,” he said.
Cancers that affect urinary and reproductive organs also receive far less research funding, despite their high mortality rates, because “people tend to shy away from talking about issues originating from these sensitive areas,” Kamath said.
Martin J. Edelman, MD, thoracic oncologist and chair of the department of hematology/oncology at Fox Chase Cancer Center, agreed that a stigma surrounds certain cancers, perhaps more so than other diseases.
“Everyone knows about the relationship between smoking and cancer, but there are many other smoking-related diseases, such as chronic obstructive pulmonary disease, which don’t suffer the same degree of stigma. But, lung cancer clearly has this association with smoking and has been stigmatized,” he said.
When it comes to securing nonprofit research funding, even at the NCI level, the availability of funds tends to favor certain diseases that have captured the public’s interest rather than those with the highest mortality rates.
“I think the reason why people invest money in a certain type of cancer is to help solve a problem that’s close to them; therefore, their advocacy is in a specific area, which is sometimes to the detriment of the larger purpose,” he said.
Perhaps paradoxically, from the perspective of drug companies, research and development into new therapies usually reflects the size of the market, Edelman said. This may explain why lung cancer, even though it is one of those “stigmatized” diseases, has no shortage of therapies under testing and development.
Kamath also noted that many drugs are first tested for lung cancer because of its high incidence.
“We often comment that all cancer treatments start out as lung cancer treatments because the number of patients with metastatic lung cancer is so high,” he said. “A lack of interest, especially for these cancers that carry a stigma, means there will be less drive to put money into research from government agencies, pharmaceutical companies and nonprofit organizations.
“These are very money-intensive drugs to develop and they need a lot of funding,” he added. “Stigmatization can definitely have a negative impact on developing future drugs and finding cures.”
‘Implications for others’
J. Leonard Lichtenfeld, MD, MACP, acting chief medical and scientific officer of the American Cancer Society, which provides $100 million for cancer research each year, said much of the research the society funds is “agnostic.”
“Even if it is directed toward a particular type of cancer, it has implications for others,” he told HemOnc Today.
Lichtenfeld agreed there is still a stigma associated with certain cancers, including lung cancer and its relation to tobacco use.
“Many of us are trying to take a different position with lung cancer in that we need to look at the disease no matter the cause,” he said. “There are a number of people with lung cancer who never had exposure to tobacco smoke, so we need to move away from the stigmatization of this disease.”
Despite this stigmatization and fewer dollars being directed toward lung cancer research relative to its burden on society, the number of treatments available that can prolong survival has risen over the past several years, Lichtenfeld said.
Melanoma is an example of a stigmatized cancer that has seen significant advances in treatment that have drastically improved outcomes, he added. Even though fewer research dollars are available for melanoma compared with less deadly cancers, the mortality rate for the disease has dropped substantially.
“From 2012 to 2016, the average decline in melanoma deaths in the United States was 5% per year,” Lichtenfeld said. “So, the amount of research dollars is not necessarily directly related to significant advances.”
Edelman noted that melanoma research has had widespread implications for the explosion of immunotherapy drugs now available to treat many other cancers.
“It’s very important to recognize that progress in one disease frequently informs how we deal with other diseases,” he said. “The progresses and approaches in immunotherapy for melanoma — a disease related to sunlight exposure — have greatly informed approaches to immunotherapy in lung, kidney, breast and other cancers.”
Not wasted on the young
Experts with whom HemOnc Today spoke said directing more research dollars toward deadly cancer types that may have previously received less funding could lead to advances that mirror those in melanoma treatment.
Supporting the work of young investigators is key, according to Mitch Stoller, MA, chief philanthropic officer and vice president of development of American Association for Cancer Research Foundation.
Stoller, the organization’s top fundraiser, said nonprofits maintain an important role in cancer research, especially when providing research grants to younger scientists.
“Educating the public on the importance of investing in cancer research and the role of young scientists in cancer research is critically important,” Stoller told HemOnc Today. “We are nervous that we could lose the next generation of young scientists if we don’t get out there and fund them.”
Stoller added that early and young investigators often have novel ideas but desperately need funding.
“Small grants at the start can lead to groundbreaking preliminary research and a career beyond,” he said.
Kamath said one solution to the lack of funding in certain cancers is for organizations such as the American Cancer Society and AACR to funnel early investigator funds toward the more deadly, less well-funded cancers.
Edelman agreed that nonprofit organizations play a critical role in providing early research dollars.
Funding for cancer research is like building a ladder, he explained. The seed funding makes the first few rungs — smaller amounts for early investigator grants and small grants for basic research. The preliminary data are the next rung that allows researchers to get larger grants, particularly from organizations such as the NCI.
“Small grants beget big grants, and it is becoming increasingly difficult for people to compete in obtaining just these small grants,” Edelman said. “But the money put into these philanthropic organizations can often lead to small grants and science that leads to larger studies and breakthroughs that can change clinical practice in the long run.”
Just as important is public awareness about cancer burden. Edelman said he begins each term by asking his new medical school students how many new cases of Hodgkin lymphoma there are each year compared with lung cancer.
“They always end up overestimating the lymphoma cases because they have already spent a larger portion of their time studying this,” Edelman said. “People don’t understand the magnitude of disease like lung cancer and its impact on health, health care expenditures and human lives in the U.S. and worldwide.”
Education about relative cancer burden could lead to more equitable funding efforts, according to Stoller.
“The public focuses on the big-name cancers, and if people are educated about the risk for other cancers, it can raise awareness and funding for them,” he said.
Kamath said the results of his group’s study revealed some unexpected trends.
“Some of the stigmatized cancers are underfunded, which is predictable,” Kamath said. “But most surprising to me is that cancers like colon, uterine, bladder or esophageal, which the public doesn’t associate with any negative cause and effect, receive so little financial support.
“The funding will have a major impact on the drugs that are developed for these diseases and how long people will live with them,” he added. “When it comes to stigma, the line ‘the punishment doesn’t fit the crime’ comes to mind. Smoking or drinking too much may be bad life choices, but to say that someone deserves their cancer because of these life choices just doesn’t make sense.” – by Drew Amorosi
American Cancer Society. How Common Is Breast Cancer? Available at: www.cancer.org/cancer/breast-cancer/about/how-common-is-breast-cancer.html. Accessed Oct. 16, 2019.
American Cancer Society. Cancer Facts & Figures 2019. Available at: www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2019/cancer-facts-and-figures-2019.pdf. Accessed Oct. 16, 2019.
Kamath SD, et al. J Natl Compr Canc Netw. 2019;doi:10.6004/jnccn.2018.7280.
For more information:
Martin J. Edelman, MD, can be reached at Fox Chase Cancer Center, 333 Cottman Ave., Philadelphia, PA 19111; email: email@example.com.
Suneel D. Kamath, MD, can be reached at Cleveland Clinic Taussig Cancer Institute, 9500 Euclid Ave., CA 50, Cleveland, OH 44195; email: firstname.lastname@example.org.
J. Leonard Lichtenfeld, MD, MACP, can be reached at American Cancer Society, 250 Williams St., Sixth Floor, Atlanta, GA 30303-1002; email: email@example.com.
Mitch Stoller, MA, can be reached at AACR Foundation, 615 Chestnut St., 17th Floor, Philadelphia, PA 19106; email: firstname.lastname@example.org.
Disclosures: Edelman reports advisory roles with AmerisourceBergen Corp., ARMO BioSciences, BioMarker Strategies, Neumedicines and Windmill Therapeutics; data safety monitory board roles with ACI Clinical, AstraZeneca and Takeda, and research funding from Apexigen, Bristol-Myers Squibb and Nektar. Kamath reports no relevant financial disclosures. Please see the study for all other authors’ relevant financial disclosures. Lichtenfeld and Stoller report no relevant financial disclosures.