Tag Archives: breast cancer

Meanwhile, Behind The Scenes….

Every day, a “Presidential” tweet or administrative outrage occupies the attention of the media and citizens who follow current affairs.

We are mesmerized by the slow train-wreck that Trump and his Keystone Kops are engineering, and for good reason. We rarely have a chance to catch our breath, or to wonder–as my husband often darkly does–what the truly vile people we don’t hear about are doing while our attention is  diverted by the ongoing public clown show.

Recently, my cousin the cardiologist (to whom I sometimes refer) sent me an example.

I have just been made aware that WomensHealth.gov has deleted much of its breast cancer web pages. But why?

It seems there has been a great reduction of breast cancer content on the website of the Office on Women’s Health (OWH) of the US Department of Health and Human Services (HHS), leaving just a single page with rudimentary information on mammograms and breast cancer. Most of the previous, seven-page content is gone.

The removal appears to reflect what my cousin calls “a broader agenda from the current administration.”

For example, under the auspices of the Affordable Care Act, breast cancer screening is offered free of charge for women meeting certain financial criteria, but that information has been deleted from WomensHealth.gov. Now, the information must be accessed on the site via a link to the Centers for Disease Control and Prevention website, which, in turn, requires a click through to yet another link.

Also, the “Government in Action” section of WomensHealth.gov previously contained information on federal programs that provide free or low-cost cancer screening, including clinical breast exams and mammograms. Known as the National Breast and Cervical Cancer Early Detection Program, the entity offers screening to all “low-income, uninsured, and underinsured women.” That entire section of the site is now removed.​This information cannot be found elsewhere on the OWH website, or anywhere on the HHS site, despite the agency’s contention that it has been integrated into other parts of the HHS website.

Apparently, most of the breast cancer content on WomensHealth.gov has been deleted.

“Because breast cancer is the most common cancer for women in the US, affecting 250,000 annually resulting in 40,000 deaths a year, it is astonishing that important information about risks, prevention and treatment of breast cancer has been eliminated from the Office on Women’s Health site,” said Joyce Bichler, deputy director of Breast Cancer Action in San Francisco, California.

According to a report from the Sunlight Foundation, a national, nonpartisan, nonprofit government watchdog, the government’s justification for this removal was  “lack of use.” This is transparent bullshit; WomensHealth.gov was visited nearly three quarters of a million times in one recent month. An HHS spokesperson told ThinkProgress that the “pages were removed… because content was not mobile-friendly and very rarely used. Before we update any of the information…we engage in a comprehensive audit and use analysis process that includes reviewing other federal consumer health websites to ensure we are not duplicating efforts or presenting redundant information.”

More bullshit.

The spokesperson directed users to WomensHealth.gov/cancer, which presumably contained the “duplicated” material, but doesn’t even have a dedicated section for breast cancer. The same spokesperson said “sister HHS agencies…have the same information in a much more user-friendly format on their websites.”

This isn’t the first time that important health information has vanished without notice or explanation. The removal of breast cancer information is part of what the Sunlight Foundation calls “wider changes to the OWH website that include the removal of resources related to lesbian and bisexual health, minority women’s health, and other topics.”

“The specificity of these removals adds more evidence to a growing concern: that public information for vulnerable populations is being targeted for removal or simply hidden,” says Sunlight.

Bottom line: Important information intended to assist low-income individuals and people of color access healthcare has been removed from the website–even though the most common cancer in women is breast cancer–and at the same time, the administration is ramping up its assault on Planned Parenthood, an important provider of breast cancer screenings.

Don’t tell me that “war on women” is hyperbole.

Comments

Boobs and “Boobies”

Yesterday, I received a news release from the Indiana ACLU announcing the organization’s representation of a middle-school student. As the release recounted the facts of the case,

The minor child, “L.G.,” is a student at Roosevelt Middle School, which is part of the Twin Lakes School Corporation in Monticello, Ind. In early January, school officials instructed the student to turn inside-out a silicone bracelet that contains the message “I© (heart) BOOBIES” as well as the ribbon symbol for breast cancer awareness, and at that time informed the student he could be expelled if he continued to wear the bracelet to school.

The student wore the “I © (heart) BOOBIES” bracelet to assist with breaking down the barriers that make it difficult for young people to talk about breast cancer. The bracelets help support the work of the Carol M. Baldwin Breast Cancer Research Fund. Carol Baldwin is the mother of the Baldwin brothers, generally known as Hollywood actors and activists. The bracelets are popular among students at Roosevelt Middle School, and have not disrupted the educational environment.

“Decades ago the Supreme Court stressed that students do not shed their First Amendment rights when they enter school buildings,” said Ken Falk, legal director of the ACLU of Indiana, who is representing L.G.

“The bracelet did not disrupt the educational environment, and the speech here, designed to assist in the fight against breast cancer, is not profane, indecent, lewd, vulgar, or offensive to school purposes, and is therefore protected speech under the First Amendment,” added Falk.

I have two reactions to the school’s position–both negative.

First, why do public school officials constantly fixate on aspects of student behavior that are either irrelevant to their education or, as here, offer educational possibilities? Why not use students’ interest in breast cancer as a “hook” for science education and civic engagement? Even if teenage boys are “tittering”–forgive the pun–about “boobies” (there is no indication of such reaction but I had sons and I’m certainly willing to entertain the possibility), the focus on cancer clearly offers multiple opportunities for positive educational experiences.

And second, why don’t public school officials respect the constitutional rights of students? The law in this area is, as Ken Falk notes, pretty clear. How do we expect to raise a generation that understands and respects the constitution when those charged with their education repeatedly model unconstitutional behaviors? Authoritarian schools do not produce democratically-skilled students.

Knowledge of the word “boobies” is not nearly as damaging as being educated by people who think it’s important to pick a fight over its use.

Comments

Hijacking the Mission

There is little I can add to the heated discussion about the Komen Foundation’s decision to withdraw funding for breast examinations done by Planned Parenthood. If the reports are accurate, the decision reflects the fact that the Foundation is currently controlled by political conservatives hostile to Planned Parenthood, and that hostility trumped concerns for women’s health. (Or in the alternative–according to this blogger–the organization has never been a bona fide charity, in which case you can skip the rest of this post.)

Those of us who have been supportive of both Komen and Planned Parenthood can obviously decide how this recent decision will affect our individual giving decisions. Whether one likes or dislikes Planned Parenthood, however, this widely publicized episode should serve as a cautionary tale for all nonprofit and voluntary ventures.

Nonprofit organizations are “mission driven.” They have been created to fill a perceived civic need: perhaps it’s environmental advocacy,  or protection of civil liberties, or helping the poor, or–as in this case–raising money for research into the causes of a particular disease in order to find a cure. Those who teach nonprofit management–as we do at the School of Public and Environmental Affairs–repeatedly emphasize the importance of fidelity to the organizational mission, and the unfortunate consequences of so-called “mission creep.”

Mission creep usually occurs as a result of dependence on a large funding source; rather than risk losing the money, the organization adapts itself to the wishes of the funder, which may not be entirely consistent with the original mission. But that isn’t the only way a nonprofit organization can lose its way, as this controversy demonstrates.

The Komen Foundation is supposed to be about curing breast cancer. Period. That is its mission, the reason for its very existence. Fidelity to that mission requires a singular focus, and a refusal to become embroiled in political or ideological issues that can detract from the mission and diminish public support.

Anyone who understands the function of nonprofit organizations and their place in civil society could have predicted the firestorm that has erupted. There is no upside to this debacle. The Foundation may continue to exist, but the (self-inflicted) damage will be long-lasting.

By allowing ideologues to hijack its mission, Komen has hurt itself, and–far more consequentially–set back the “race” for the cure.

Comments