Despite growing social
acceptance of lesbians, gay men, bisexuals, and transgender (LGBT) persons and
the extension of marriage rights for same-sex couples, LGBT persons experience
stigma and discrimination, including within the healthcare system.
Each
population within the LGBT umbrella term is likely at elevated risk for cancer
due to prevalent, significant cancer risk factors, such as tobacco use and
human immunodeficiency virus infection; however, cancer incidence and mortality
data among LGBT persons are lacking. This absence of cancer incidence data
impedes research and policy development, LGBT communities' awareness and
activation, and interventions to address cancer disparities.
In this context,
in 2014, a 2-day National Summit on Cancer in the LGBT Communities was convened
by a planning committee for the purpose of accelerating progress in identifying
and addressing the LGBT communities' concerns and needs in the spheres of
cancer research, clinical cancer care, healthcare policy, and advocacy for
cancer survivorship and LGBT health equity.
Summit participants were 56 invited
persons from the United States, United Kingdom, and Canada, representatives of
diverse identities, experiences, and knowledge about LGBT communities and cancer.
Participants shared lessons learned and identified gaps and remedies regarding
LGBT cancer concerns across the cancer care continuum from prevention to
survivorship.
This white paper presents background on each of the Summit themes
and 16 recommendations covering the following: sexual orientation and gender
identity data collection in national and state health surveys and research on
LGBT communities and cancer, the clinical care of LGBT persons, and the
education and training of healthcare providers...
Recommendations
- Add SOGI questions to all
national health surveys and promote SOGI data collection in diverse healthcare
settings so as to better understand psychosocial, behavioral, and medical risk
factors that can increase LGBT persons' cancer risk and to examine health
outcomes and disparities in each LGBT community.
- Organize stakeholders and
promote education within the NIH and its institutes, centers, and offices, and
in particular the NCI, about the health and cancer needs of LGBT communities to
arm with facts and sensitize decision-makers who help set scientific and
funding priorities.
- Overcome the gap in financial
support of research to develop and test cancer prevention and control
interventions targeted and tailored to LGBT communities by issuing research
funding opportunities specific to the population.
- Increase the amount of federal
funding dedicated to LGBT cancer research. Furthermore, assure that career
development and training grants for under-represented populations in the
workforce include those identifying as LGBT and with potential for conducting
high-quality cancer research with LGBT communities.i
- Address the absence of SEER
cancer registry data on SOGI. SEER should consider partnering with cancer
researchers to pilot test such an effort, perhaps within a region or state, to
identify and overcome barriers to standard collection of SOGI data.
- Recognize intersectionality
within the LGBT communities when conducting cancer research by assessing and
examining the impact of SOGI, race, ethnicity, class, disability/ability, and
other sociodemographic factors on cancer outcomes across the cancer care
continuum.
Recommendations
- Increase research to document
elevated cancer risks and cancer screening disparities in LGBT communities.
- Develop psychosocial and
educational support groups specifically for LGBT survivors and caregivers, and
when this is not feasible, assure the cultural competence of professional
support service providers to better meet the needs of LGBT communities.
- Improve care coordination for
LGBT patients, survivors, and caregivers through the integration of LGBT
community resources. These resources include culturally competent oncologists,
primary care and specialty physicians, mental health providers, and other professional
providers.
- Educate healthcare providers
about the unique cooccurring conditions that LGBT cancer patients may present
in their care settings.
- Ensure that palliative and
end-of-life care addresses the specific legal and psychosocial needs of LGBT
communities.
- Support efforts to increase
insurance coverage for LGBT communities, with a focus on the transition and
cancer care needs of transgender communities.
Recommendations
- Develop accreditation agency
standards for the provision of culturally competent care to LGBT people and to
assure professional training in LGBT cultural competence and health for
providers of primary care, cancer screening and treatment, and cancer
survivorship healthcare both during their academic training and for those
already working in the field. This can be best accomplished by working with
LGBT-focused organizations and other content experts in these areas.
- Educate LGBT communities about
their increased cancer risks and the importance of appropriate cancer screening
and early detection through outreach by cancer experts through tailored
lectures, print materials, internet content, mass media messaging, and other
means that will effectively engage the community.
- Increase representation of LGBT
persons in leadership positions and throughout the workforce. The workforce
pipeline draws from many streams, but for there to be greater LGBT
representation at all levels of the cancer healthcare continuum and in health
policy and research, efforts are needed to welcome, include, and develop the
potential of LGBT persons within the under-represented populations in the
workforce. This will entail collecting SOGI data to track the effectiveness of
such efforts, as well as targeting for recruitment of LGBT-identified persons
in academic and training programs and assuring that they will experience
LGBT-affirmative environments and mentoring opportunities in their new
settings.
- Initiate a comprehensive effort
to identify and modify healthcare organization policies that are not inclusive
or pose barriers to patient-centered cancer care for LGBT persons. These
policies may range from how to manage the comfort and confidentiality of
transgender patients presenting for cancer screening based on gender-specific
anatomy to providing culturally sensitive psychosocial support for LGBT cancer
survivors. Systemic changes promoting equity in LGBT cancer care are more
likely to be implemented when an independent prestigious organization advocates
such changes and more so when mandated by an accrediting or certifying
organization. Furthermore, by instituting collaborations with LGBT advocacy and
professional groups, healthcare organizations can establish a lifeline when
addressing internal LGBT-related policies, procedures, and patient concerns.
Full article at: http://goo.gl/2Gl9sl
By: Jack E. Burkhalter, PhD,
1,* Liz Margolies, LCSW,2,* Hrafn Oli Sigurdsson, PhD, NP, PMHNP-BC,3 Jonathan Walland, LLB,4 Asa Radix, MD, MPH,5 David Rice, RN, PhD,6 Francisco O. Buchting, PhD,7 Nelson F. Sanchez, MD,8 Michael G. Bare, MPH,9 Ulrike Boehmer, PhD,10 Sean Cahill, PhD,11 Tomas L. Griebling, MD, MPH,12 Diane Bruessow, PA-C, DFAAPA,13 and Shail Maingi, MD14
1Department of Psychiatry and Behavioral
Sciences, Memorial Sloan Kettering Cancer Center, New York, New York.
2National LGBT Cancer Network, New York,
New York.
3Nursing Professional Development, Memorial
Sloan Kettering Cancer Center, New York, New York.
4The Office of General Counsel, Memorial
Sloan Kettering Cancer Center, New York, New York.
5Callen-Lorde Community Health Center, New
York, New York.
6City of Hope, Duarte, California.
7Buchting Consulting, Oakland, California;
Horizons Foundation, San Francisco, California.
8Department of Medicine, Memorial Sloan
Kettering Cancer Center, New York, New York.
9Grassroots Change, Oakland, California.
10Department of Community Health Sciences,
Boston University School of Public Health, Boston, Massachusetts.
11The Fenway Institute, Boston,
Massachusetts.
12Department of Urology, School of Medicine,
University of Kansas, Kansas City, Kansas.
13Healthy Transitions, LLC, Stirling, New
Jersey.
14St. Peter's Health Partners Cancer Care,
Troy, New York.
Corresponding author.
*Cofirst authors.
Address
correspondence to:, Jack E. Burkhalter, PhD, Department of Psychiatry
and Behavioral Sciences, Memorial Sloan Kettering Cancer
Center, 641 Lexington Avenue, 7th Floor, New York, NY 10022,