July 24, 2019 / 9:11 PM / a month ago

Many deadly common cancers get little charity funding

(Reuters Health) - Many of the most common and lethal cancers get the fewest research dollars from fundraising advocacy groups, especially cancers associated with stigmatized behaviors like smoking and drinking, a U.S. study suggests.

Cancers of the colon, endometrium, liver and bile duct, cervix, ovaries, pancreas and lung were all poorly funded relative to how many people they affect and how many deaths they cause, the study found. In contrast, breast cancer, leukemia, lymphoma and pediatric cancers were all quite well-funded relative to their impact on society.

Part of the mismatch may be because nonprofit organizations need to appeal to donors, said Dr. Suneel Kamath, lead author of the study.

“Donors in the general public think, ‘Why am I funding research to find a cure for a disease that people caused themselves - if they die, it was their fault,’” said Kamath, who did the work while at the Northwestern University Feinberg School of Medicine in Chicago. “I’m going to target my money to a disease that happens to ‘good people’ with ‘clean living’ who just had bad luck.”

While previous research has examined which types of cancer get the most government research funding, the current study is the first to look at nonprofit funding, Kamath said.

Cancer-related patient advocacy organizations play an important role in funding medical research, educating patients and families and influencing health policy, researchers note in the Journal of the National Comprehensive Cancer Network.

Underfunding of these common cancers could negatively impact research, drug development and the number of FDA drug approvals for poorly-funded cancers, they warn.

For the study, the researchers examined 2015 tax records for all U.S. nonprofit organizations that support any type of cancer and had annual revenue of at least $5 million.

The analysis included 119 organizations with a total annual revenue of $5.98 billion. More than three quarters of this income, $4.59 billion, went to general cancer charities like the American Cancer Society that don’t focus on any one disease.

Researchers compared the number of dedicated organizations and amount of revenue for each cancer type with the number of new cases, number of deaths and number of years of life lost to that cancer to see if the amount of funding for each cancer is proportional to how common or deadly it is.

Cancers with the largest number of advocacy organizations and largest revenue were breast cancer, with 33 dedicated organizations and revenue of $460 million; pediatric cancers, with 33 organizations and $117 million in revenue; and leukemia, with just 4 dedicated organizations but $201 million in revenue. These were all well-funded relative to their impact in terms of the number of cases and deaths.

Underfunded cancers tended to be associated with stigmatized behaviors, including liver tumors - tied to drinking, and cervical cancer - tied to a sexually transmitted virus. Cervical cancer, for example, got just $5.4 million, while liver tumors got just $5.8 million. Each disease has just one dedicated advocacy organization.

Cancers with no disease-specific nonprofit organization meeting the $5 million threshold included kidney, bladder, gastric and esophageal cancers.

The biggest limitation of the study is that so much of the nonprofit funding goes to general cancer organizations, making it hard to know where a lot of the research dollars might be allocated, the study team notes.

The nonprofits in the analysis included advocacy organizations supported by patient groups, drug companies and large foundations that conduct research studies. Many of these nonprofits exist to support research that might not otherwise be funded from other sources, including the government, said Dr. Ethan Basch, director of cancer outcomes research at the Lineberger Comprehensive Cancer Center at the University of North Carolina, Chapel Hill.

“There has been conjecture that cancers related to health behaviors like smoking or substance abuse might be looked at less favorably for funding, but this assertion is not supported by the substantial funding influx into lung cancer research that has clearly been driven by science and medical need, not by social biases,” Basch, who wasn’t involved in the study, said by email.

SOURCE: bit.ly/32GU8kK Journal of the National Comprehensive Cancer Network, online July 18, 2019.

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