December 2020
The National LGBT Cancer Network works to improve the lives of LGBTQI+ cancer survivors and those at risk by:
- Educating the LGBTQI+ community about our increased cancer risks and the importance of screening and early detection;
- Training health care providers to offer more culturally-competent, safe, and welcoming care; and
- Advocating for LGBTQI+ survivors in mainstream cancer organizations, the media and research.
Increasingly, federal, state, and regional policies affect the ability of LGBTQI+ a.k.a. sexual and gender minority (SGM) persons to minimize cancer risks, obtain adequate treatment, and maximize survivorship. In consideration, the National LGBT Cancer Network is debuting a set of policy priorities, actions which can minimize the impact of cancer on this NIH acknowledged health disparity population.
Please see the National LGBT Cancer Network’s top five priorities below and click on each for educational information about how they impact SGM people at risk for and facing cancer.
Priority List
Problem statement
Despite SGM people being a group with widely acknowledged barriers to health care,1 2019 and 2020 were banner years for attempted and successful rollbacks of civil rights protections for such care. In 2019, 19 statewide bills were introduced2 that attempted to limit trans youth access to healthcare. This is particularly salient because trans adults have profound cancer-related health disparities and a trans youth health intervention has been shown to reduce later life disparities. As examples of each phenomenon: in a study3 at an SGM-welcoming health clinic, researchers found odds of trans cancer screenings were 50%, 60%, and 70% lower than their cisgendered peers for colorectal, cervical, and breast cancer respectively; in a study on trans teen hormone suppression (a fully reversible process), later life health was notably improved.4
As another example, when it was routine for insurers to deny trans-related health claims, providers would often disguise trans status on health records to protect the patient from civil rights challenges. During the Obama-era, regulations and ACA provisions forbid this discrimination, and as a result providers started to note trans status on health care records.5 Unfortunately, the Trump administration took aim at these protections, effectively terminating6 them in June of 2020. While there is a temporary judicial ban on implementing the Trump administration regulations, this highlights how vulnerable the SGM population is to changing whims of executive branch actions.
This rollback in trans protections came after another executive branch led push to allow providers to hide behind a “religious opposition” claim to refuse treatment to any SGM person.7 This rule was passed in May of 2020 and immediately embroiled in a series of lawsuits led by SGM and health serving organizations. While the lawsuits ultimately put the implementation on hold, this again demonstrates the vulnerability of SGM access to care.
Two other impacts of this trend in health rights rollbacks are also relevant. First, the impact of news about these fights on the SGM population must not be downplayed. One study8 showed states passing denial of service laws for same sex adults had a 46% increase in sexual minority adults reporting mental distress.8 Whether rulemaking is ultimately enacted or not, the very public fight to legitimize health provider discirmination against SGM persons takes a toll on our population’s mental health and contributes to provider avoidance. Second, while lawsuits have effectively held up the implementation of several of these regulatory actions, mounting these legal actions is a significant drain on the organizational resources of a population already fighting the toll of health, social, and economic disparities.
In a related point, Executive Order 13950, Combatting Race or Sex Stereotyping, has in fact limited the scope of highly regarded diversity trainings offered by the National LGBT Cancer Network and our seven other sibling disparity networks.
Solution
Pass national legislation that will prohibit discrimination based on sexual and gender minority status, such as the Equality Act. In advance of this legislation, use executive orders to ensure HHS again includes SGM status in their list of prohibited discriminatory practices and EO 13950 is neutralized.
Problem statement
While there is a great increase in SGM health disparities information, this is too often in spite of systematic suppression of SGM data by traditional surveillance methods. As just some examples of how this affects cancer:
- The National Health Interview Survey (NHIS)9 is the survey that is tied to more cancer policy outcomes than any other national survey. Yet it does not include any gender identity measures and has suspect reporting on measures related to bisexuality.10
- The National Behavioral Risk Factor Surveillance System (BRFSS) is producing more data about SGM health than any other.11 However, the BRFSS allows states to choose whether or not to add optional SGM measures. While approximately 34 states have currently added these measures, data about cancer risks and outcomes are still not available for the full country.12
- Providers are not usually expected to report SGM data on electronic health records for any federal surveillance or funding requirement, so most do not.13,14 As a result, there is no information about emergent issues such as the impact of COVID-19 on SGM people. Furthermore, while some gender identity fields exist, in the main SGM data are suppressed in cancer registries.13,14 As a result, we have almost no data regarding cancer rates or outcomes in our communities, despite the increased risk of cancer.
- Despite a recommendation from the Institute of Medicine in The Health of LGBT People in 2011,15 National Institutes of Health (NIH) funded research and clinical trials are still not expected to report SGM data. This is also despite increased awareness about how disparity population clinical trial participation is critical. To quote NIH Director Dr. Collins speaking about COVID clinical trials, “When it comes to the vaccine trials, we would want to know that we have achieved some level of diversity in the enrollment. If this is just basically a bunch white cisgendered individuals, we don’t really understand how the vaccine has been effective in different populations, we have missed a really important part of the exercise.”16 There is also evidence about willingness of SGM populations to disclose such information.17,18,19,20 Without this routine data collection not only is there no evidence of clinical trial efficacy for SGM persons but an important opportunity to build community trust in new therapeutics is being missed.
The systematic suppression of SGM data amounts to forcing SGM people to stay in the closet in health data systems. Collecting these data would open a firehose of new SGM health information, spurring a wealth of policy and programmatic interventions.
Solution
Pass national legislation that will ensure all federally funded data collection will include SGM measures by default, unless investigators sufficiently demonstrate such collection is counter-indicated. The Public Health Service Act’s section on minority and gender inclusion (Public Health Service Act sec. 492B, 42 U.S.C. sec. 289a-2)21 can be used as partial guidance.
Problem Statement
Approximately three out of every ten SGM people currently use commercial (versus ceremonial) tobacco products.227,23 Even more disturbing, one out of every three of SM youth (GM was not reported) are currently getting addicted to nicotine through vaping and the rates of cigarette smoking in the SM youth population are double the rates of other youth.24 This e-cigarette use is driving an unprecedented increase in nicotine addiction among SGM youth.25 Over 80% of vaping youth are using tobacco products with youth-enticing flavors like cotton candy, cherry starburst, and strawberry donut.26
Most cigarette flavors were banned in 2009 since they were proven to entice youth to begin smoking.22 Menthol, or mint flavor, was exempt from that ban.22 Flavor bans that make an exception for menthol, which is disproportionately used by SGM smokers27 and overwhelmingly used by Black/African American smokers, are tantamount to racism. See the recent lawsuit by African American Tobacco Leadership Council v. FDA on this point.28
It has been demonstrated that following recent partial bans on flavored e-cigarette cartridges, users compensated by increasing their use of menthol e-cigarette cartridges by over 400% and their use of non-banned flavored e-cigarette products by 1000%.29 Partial flavor bans do not work but full flavor bans can substantially decrease the lure of new tobacco products to SGM youth.
Further, existing investments in SGM tobacco disparities have been curtailed. For example the federal Tips from Former Smokers campaign has not had a new SGM focused ad since 2014.36 Additionally, the $35 million FDA initiative to reduce tobacco use among young SGM adults, This Free Life, has been discontinued.37 Even the existence of the smokefree.gov/LGBT subsite has been hidden from the smokefree.gov main site.
An estimated 30% of all cancer deaths are caused by smoking.30 On average smokers will lose 10 years of their lives as a result of tobacco use.31 As smoking rates decrease, so would rates of asthma, diabetes, COPD, and heart attacks, critical underlying health conditions that leave SGM people at greater risk for other health problems such as COVID.32 Of particular concern are new data also showing people who vape are at 5x greater risk for getting COVID.33 The burden of addictive tobacco use in the SGM communities is not often prioritized, yet with an estimated 3.3M adult tobacco users this represents one of the largest health risks to the SGM population and a virtual guarantee of a disproportionate cancer impact.
The Solution
Recommended policies include:
- Banning all flavored commercial tobacco products, including menthol.
- Increasing tobacco taxes, as this has been proven to be a key motivator in increasing cessation.34
- Ensuring FDA acts quickly and consistently in holding tobacco-related products back from the market that present a public health risk.35
- Ensuring federal programs that address tobacco disparities include SGM tailored efforts.
Problem Statement
Research has shown SM people living in communities with high levels of anti-SGM prejudice lose an average of 12 years off their total lifespan.38 This was one of the studies cited in 2016 as NIH formally announced the SGM population would be recognized as a health disparity population for research purposes.38 This designation opened up a new level of opportunities for researchers to address SGM populations, one of several key moves that ultimately spurred a 27.6% increase in SGM research from FY2015-2018.39 Despite this inclusion in NIH research, SGM inclusion alongside traditional and overlapping disparity populations across HHS funding mechanisms is sporadic at best. As some examples: NIH’s $100M initiative to increase the diversity of the investigator pipeline awards also does not prioritize needed SGM diversity;40 a forthcoming $15M funding announcement from CDC to reduce inequities in cancer outcomes also does not list SGM as a target population;41 neither does a recently released $16M HRSA nursing diversity initiative.42
Each year approximately 250,000 people receive their cancer diagnoses at one of the NCI-designated cancer centers, projections show at least 11,250 of these people are likely SGM.41 It is estimated that 4.5% of the United States Population is SGM42 and despite federal funding, there is no federal encouragement to make these cancer centers SGM welcoming. In fact, recent research shows over 40% of these state of the art cancer centers do not even list gender identity and expression as protected classes in their non-discrimination statements and/or patient bill of rights.43 Similarly despite tobacco use being the top epidemiological health threat to the SGM communities, the NIH only invests a little more in SGM tobacco use research than they do in SGM teenage pregnancy.44 As well, mainstream NIH-funded tobacco research is not required to collect SGM data, so data about our population are suppressed.
Solution
Establish a standard whereby SGM designation as a health disparity population expands beyond the scope of NIH research to include all HHS policy announcements, funding announcements, and research, unless justification has been presented for the omission.
Problem Statement
Across all of HHS, improvements in monitoring of health disparity populations and interventions to reduce such health disparities are urgently needed. The COVID-19 pandemic has highlighted the differential health outcomes that can exist for populations who already experience health disparities.45 SGM health outcomes are suppressed for COVID-19 surveillance,46 what is known about the disproportionate impact on the overlapping BIPOC communities must drive an investment towards health equity for all populations.47,48,49
Some of this work can be done by reframing existing funding opportunities. For example, CDC’s Office on Smoking and Health recently added a requirement that state grantees identify a health disparity population that will be the focus of its next five year grant award.50 But reframing existing funding alone is not sufficient, new funding needs to be added. The lessons of 2020 have driven home not only the need to fully fund public health but the severe consequences that result when health disparities are allowed to flourish.
This increased investment is a priority for SGM cancer care for three different reasons:
- Many SGM community members are members of overlapping health disparity populations and will never achieve health equity without attention to all forms of discrimination they encounter;
- An expansion of existing disparity focus to cover SGM communities must only come as part of a larger funding expansion; and
- An investment in eliminating any health disparity helps inform the base of knowledge on how to eliminate all health disparities.
The Solution
Increase targeted health funding substantially to eliminate inequities for all health disparity populations. Issue guidance to HHS operating divisions to wherever possible ensure existing funding mechanisms also include a substantive focus on eliminating health disparities as part of the scored section of proposal review.
