Tuesday, March 22, 2016

The National LGBT Cancer Action Plan: A White Paper of the 2014 National Summit on Cancer in the LGBT Communities

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...

  1. 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.
  2. 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.
  3. 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.
  4. 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
  5. 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.
  6. 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.
  1. Increase research to document elevated cancer risks and cancer screening disparities in LGBT communities.
  2. 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.
  3. 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.
  4. Educate healthcare providers about the unique cooccurring conditions that LGBT cancer patients may present in their care settings.
  5. Ensure that palliative and end-of-life care addresses the specific legal and psychosocial needs of LGBT communities.
  6. Support efforts to increase insurance coverage for LGBT communities, with a focus on the transition and cancer care needs of transgender communities.
  1. 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.
  2. 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.
  3. 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.
  4. 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,corresponding author1,* 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,

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