Considering there are no federal nondiscrimination protections and there is a robust history of discrimination in health against LGBT people, any entity who does not go out of their way to demonstrate equitable treatment of LGBT people risks being a presumptive member of a class that discriminates against LGBT people. This is as valid for policy as it is for individual practitioners—policies that do not specify LGBT inclusion often support the historical status quo, ultimately achieving LGBT exclusion.

Any discussion of policies affecting LGBT health usually starts with this topic. Health policies and services, no matter where they intersect the cancer continuum, are built on a foundation of surveillance and research. Those two foundational pieces then flow into policy-making, which then guides allocations, which in turn guide intervention programs. In this stream of health decisionmaking LGBT people are usually confounded at the very first two steps, surveillance and research.

In almost all federal surveillance systems, LGBT data are not routine demographic elements. Without data collection, there is never an evidence base of disparities from which to build explicit policy inclusion. While the first evidence of a significant smoking disparity for LGBT populations was reported in the mid-1990s [3], almost 20 years later there is still no data about LGBT cancer disparities. The piecemeal evidence that exists often does not meet the bar of proof needed for policy interventions and funding decisions. Thus the first and most widespread policy impact on LGBT cancer is the existing policy of masking LGBT health disparities by not including LGBT measures in routine surveillance or health research.

There have been several advancements in data collection over recent years. In 2012, after years of advocacy and education, the Secretary of the HHS reported they would be adding LGBT measures to the federal surveillance system which is a benchmark for more health goals than any other, the National Health Interview Survey (NHIS) [4]. Unfortunately, testing for a transgender measure was halted for more input, and has not yet resumed at the time of this writing. A newly tested “sexual identity” measure [5] was added to NHIS in Spring of 2013, and should soon yield a wave of new data to analyze.

In 2013, in an attempt to address the continued lack of progress on transgender data collection, HHS announced it was urging states to add LGB & T measures to their state surveillance systems, the Behavioral Risk Factor Surveillance System, and the associated Youth Risk Behavior System [6]. Is it is from aggregated state data from these surveys that the first clear data on risk factors are starting to emerge. For example, lesbians have a 30 % reduced odds of having an annual physical [7]. It is also these data that have already started to demonstrate that existing theories do not yet span the breadth of LGBT health disparities. For example, what theory accounts for the newly discovered fact that LGB adolescents use seat belts less often than others [8]?

Because the sample size for the BRFSS and YRBS is so high, getting tested LGBT measures on these surveys would yield a waterfall of data on LGBT cancer related behaviors. Unfortunately, even with federal urging only 17 states have now included LGBT measures [9]. In addition, not all of the measures are well-tested, so there remain concerns the resultant data, especially the trans data, might not be high value.

With the number of high quality full probability studies on LGBT smoking alone the existence of an LGBT-specific cancer disparity, has already been established. What is missing are surveillance and reporting data. Surveillance data are different from full probability studies for several reasons: first, states and the federal government rely on these data for policy decisions; second, they are considered higher standard of evidence and thus hold more weight for demonstrating need in proposals; third, since these are often the largest surveys, they are more likely to provide much needed evidence on the quality and magnitude of health gaps. Reporting data are the only way different types of cancers are tracked in different populations. Until LGBT data are included in all facets of health data collection as a routine part of a demographic battery, LGBT cancer disparities will continue to be masked by inexact science.

Funding mechanisms rarely state they are LGBT inclusive, which unwittingly creates ambiguity among applicants. This likely depresses the number of LGBT targeted proposals received, especially for those funding streams which are especially labor intensive, such as research proposals through National Institutes of Health (NIH). A recent analysis of NIH awards that mention LGBT by health topic area found a particular paucity of LGBT awards focused on cancer or tobacco. Of the 628 studies from 1989 through 2011 that mentioned LGBT, only 35 focused on cancer and only eight focused on tobacco [10]. The Network for LGBT Health Equity has put out a policy sheet, “LGBT Cultural Competency in Funding” [11]. In it they recommend three strategies to ensure funding announcements are welcoming to LGBT applicants:

The 2011 Institute of Medicine report on LGBT health developed a series of recommendations to make NIH research more LGBT-inclusive [12]. Their seven top recommendations are listed here:

As of 2015, while NIH has made significant strides on LGBT research inclusion, none of the Institute of Medicine recommendations have been implemented. The notable gaps in LGBT cancer research are poised to continue until larger scale interventions are implemented in the premier research funding institutions.

Much has been written about the effect of stigma on the health of individuals. While it remains hard to measure, stigma has a depressive effect on the health of individuals. Sometimes direct evidence of the impact of policies on individual health has been recorded, for example: LGBT people in states that pass an LGBT-unfriendly law report more mental health problems the next year [13]. Actually LGBT people in states next to those who have passed LGBT-unfriendly laws also report more mental health problems in the next year [13]. The national policies outlined above have a cumulative weathering effect on LGBT individuals, likely leaving them at greater risk for cancer in the first place.

As is covered in the chapter on tobacco, LGBT people smoke cigarettes at rates 68 % higher than others [14]. This disparity emerges out of the stigma experienced, but is also related to policy inclusion decisions made by the tobacco industry, as compared to those made by the tobacco-control industry.

There is evidence from as early as 1993 that the tobacco industry companies were conducting market research on LGBT people [15], and tailoring outreach strategies to specifically include LGBT populations. The tobacco industry advertised early in LGBT publications, effectively setting them apart from the many companies in the 80s and 90s who were still reluctant to tailor ads for the LGBT population. Focus groups show community gratitude for this early tailoring is still a factor in LGBT opinions about the tobacco industry today [16]. The tobacco industry showed similar market savvy in tailoring the ads. Sometimes a person was added to the existing ad to make it more sexually ambiguous and therefor more LGBT tailored. In other cases the tobacco industry specifically built ads using LGBT civil rights messaging: two such examples are above.

Likewise, as early as 1993 Phillip Morris showed similar marketing savvy by heavily promoting their LGBT-welcoming philanthropic work and employment policies [15].

The tobacco control arena has been slower than the tobacco industry to use targeted marketing tactics to engage LGBT populations, but they are still ahead of many other health topic areas in LGBT inclusion. CDC’s Office of Smoking and Health has funded tobacco disparity networks for many years, and has included an LGBT network among the portfolio for the last 12 years. The consistent presence of an LGBT tobacco disparity network has had a direct impact on integrating LGBT concerns into many policy decisions; much of the Network’s engagement is about policy issues. The Network was instrumental in getting LGBT added to the National Partnership for Action to End Health Disparities Plan, getting a commitment of LGBT data collection from HHS Secretary Sebelius, getting LGBT added to the HHS Tobacco Control Action Plan, and to the mission statement of the new Affordable Care Act Prevention Advisory Group. The Network advised CDC directly on data inclusion in the 2012 National Adult Tobacco Survey, leading to the first national LGBT smoking prevalence data [14]. They have advised many states on data inclusion and have had a multi-year effort to work with NIH to ensure their health research is more inclusive. In conjunction with the Network, CDC’s Office of Smoking and Health has now included LGBT tailored ad in their last 3 years of mass media campaigns, the Tips Campaign from Former Smokers.

As strong as this activity is, there is still much more LGBT tailored activity from the tobacco industry as compared to the tobacco control programs. Few state level tobacco control campaigns have made it a policy to explicitly include LGBT tailored activities. Most tobacco quitlines do not train their staff on LGBT cultural competency. Some do not collect data on LGBT callers, again masking LGBT disparities. The tobacco industry has been bragging about their LGBT-inclusive employment policies since the 90s. As the employment chart earlier in this chapter shows, most of the state tobacco control programs do not have LGBT-inclusive employment non-discrimination policies. These policy gaps have a broadly depressive effect on LGBT tobacco control progress, which directly affects the prevalence of cancer among LGBT people.

Stimulus efforts then Affordable Care Act created a new wave of cancer prevention activities nationwide. An estimated half a billion dollars flowed into two different funding mechanisms (Communities Putting Prevention to Work and Community Transformation Grants) which in turn created local level programs focused on cancer risk reduction, specifically: physical activity, eating better, and staying smoke-free [17, 18]. As was highlighted by the LGBT HealthLink: The Network for Health Equity, despite top level LGBT inclusion in the Task Force on Prevention [19], the actual funding announcements for both of the mechanisms were at best equivocal on prioritizing LGBT inclusion [20]. Similarly, a separate funding stream focused on cancer prevention activities specifically was confined to racial and ethnic disparities. As a result, with this wave of new investment across the country, the LGBT HealthLink could identify few programs which included tailored activities for the LGBT communities. Much of this cancer prevention work is implemented by state and city health departments. Despite attempted LGBT prioritization in top-level federal policy documents, the relative lack of inclusion in federal funding announcements resulted in few tailored LGBT cancer prevention programs.

In 1995, CDC funded The Mautner Project to launch the “Removing the Barriers” project. This project provided LGBT cultural competency training programs for healthcare providers, particularly to serve their National Breast and Cervical Cancer Early Detection Program (NBCCEDP) sites across the country [21]. This funding showed an early willingness to welcome lesbian and bisexual women into one of the largest cancer screening programs across the country. In 2006 this funding ceased, there were no more overt LGBT activities by the CDC cancer offices until they started to co-fund the LGBT HealthLink in 2013 [21, 22].

One example related to cancer screening demonstrates both the challenges and the opportunities in the current policy environment. In October of 2013, a TV station in Colorado broke the news that a transgender woman had been denied free breast-cancer screenings at a local NBCCEDP site for not being “genetically female”. It is a credit to the growing LGBT health policy expertise at a national level that three organizations immediately sent letters to HHS and CDC asking for the rules governing who was eligible for care to be changed. Within days of the complaint the HHS LGBT liaison confirmed their HHS LGBT Issues Coordinating Committee is looking into revising the eligibility rules. By December of 2013 newly revised rules had been issued to all NBCCEDP sites across the country [23]. Their ruling was an interesting example of the policy moving forward even with a lack of data, illustrating the strategies used to create sound policies in such an environment.

Although there are limited data regarding the risk for breast cancer among transgender women, evidence has shown that long term hormone use does increase the risk for breast cancer among women whose biological sex was female at birth. While CDC does not make any recommendation about routine screening among this population, transgender women are thus eligible under federal law to receive appropriate cancer screening. CDC recommends that grantees and providers counsel all eligible women, including transgender women, about the benefits and harms of screening and discuss individual risk factors to determine if screening is medically indicated.

The Center of Excellence for Transgender Health and the World Professional Association for Transgender Health have developed consensus recommendations on preventive care services for the transgender population. Those recommendations include for ‘transwomen with past or current hormone use, breast-screening mammography in patients over age 50 with additional risk factors (e.g., estrogen and progestin use > 5 years, positive family history, BMI> 35)’. [24]

Note that CDC could not suggest any screening guidelines for the population, because as they admit, there are limited data for the risk of breast cancer in this population. But failing that, they found external guidelines, in this case developed by another organization they fund through their HIV arm, the Center for Excellence on Transgender Health. This group worked with another internationally recognized body, WPATH, to develop guidelines that could be adopted by CDC, and subsequently by the hundreds of free screening programs they fund across the country.

The example is interesting in several ways, it shows a current willingness by HHS to fix policies that are unfriendly to LGBT people and a successful if unusual pathway for moving to those fixes expediently. It highlights how policy can be created in the absence of data, often with the help of externally funded agencies. But at its core was a transgender woman who was able to take an extremely bold step; after being turned down from care she filed suit demanding such care and was willing to even go on TV to present her case. While there are many successes in this story, it takes an exceptional person to react to a healthcare barrier in such a public manner and thus this method to change policies is not easily replicable.