Breast cancer data disappeared from HHS website — patients need more information

Cancer awareness and education are critical components of dealing with the prevention and treatment of the disease that is diagnosed in about 1,735,350 people and claims the lives of about 610,000 individuals each year in the United States, according to the American Cancer Society.

For decades we’ve been involved in national and international efforts to provide balanced, accurate, and scientific-based information about cancer to all populations, with special care that the information disseminated is culturally appropriate for each specific audience, especially those that are medically disadvantaged.

{mosads}Moreover, in recent years we’ve grown to appreciate even more the importance of also tailoring information and resources on a regional and local community level, and ensuring that everyone has equal access to available resources.

That’s why it is especially disturbing to read that the U.S. Department of Health and Human Service’s (HHS) Office on Women’s Health removed a webpage dedicated to breast cancer and other reproductive health information last December, “because content was not mobile-friendly and very rarely used,” according to reporting by ThinkProgress.

The missing webpage was first reported by the Sunlight Foundation’s Web Integrity Project and included important insurance information for low-income individuals that could help them access vital available resources. 

The report also stated that a Centers for Disease Control and Prevention (CDC) program that directed uninsured and underinsured people to free breast and cervical cancer screening and diagnostic services was removed, as was the Spanish version to the main breast cancer webpage.

It is estimated that in the United States nearly 270,000 new cases of invasive breast cancer will be diagnosed this year, and more than 41,000 people will die from the disease. And these numbers reflect that from 1989 to 2015, there has been a 39 percent decrease in breast cancer mortality in the United States.

The United States currently has 52 million Hispanic or Latino Americans, comprising nearly 17 percent of the population, of which 47 million are American citizens.   

In 2015 there were almost 20,000 new cases of breast cancer diagnosed among Hispanics in the United States, with about 2,800 deaths.

Meanwhile, for example in Florida, about 300,000 Puerto Ricans had moved to the state in the first few months following hurricanes Irma and Maria last fall, with many more reported arriving daily.  

The influx is putting extra strain on the state’s public health budget and there has been concern that many women are lacking resources for early detection or treatment of breast cancer.

There is a great disconnect when there is an increasing need for access to information, early detection, and treatment of breast cancer, especially among underserved populations, and when available resources are curtailed because a government agency claims it wasn’t “mobile friendly and very rarely used.”

When government resources are not enough to help those in need, it’s time for more community support and outreach efforts, not just to fill the gaps, but also to make those resources accessible and more relevant to those who need them the most.

Nancy Brinker is a global cancer advocate and the founder of Susan G. Komen, the world’s largest breast cancer charity name after her sister. She has also served as U.S. ambassador to Hungary, U.S. chief of protocol and as a Goodwill Ambassador for Cancer Control to the U.N.’s World Health Organization. Find her on Twitter: @NancyGBrinker. Eric Rosenthal is an advocate and writer on breast cancer issues. He is also the founder of the NCI-designated cancer centers public affairs network. Find him on Twitter: @etrosenthal.