March 10, 2021 Disparities in Gyn Cancer Diagnosis and Treatment

The #gyncsm community welcomed Dr. Dineo Khabele (@DKhabeleMD), Washington University School of Medicine gynecologic oncologist to this month's chat on Disparities in Gyn Cancer Diagnosis and Treatment. Advocates, researchers and health care providers participated in our important discussion. 

Here is a sample of the responses to our topic questions.  You may read the complete transcript here and additional analytics here. 

T1: What are cancer disparities? What factors can contribute to cancer disparities? 

• Disparities range from race or ethnicity, to location, to age, gender identity, socioeconomic status, disability, insurance coverage, etc. All of these and more contribute to cancer care.
• Cancer disparities are differences in the incidence, prevalence, and mortality among specific populations. Contributing factors are social determinants of health, healthcare systems, and discrimination. 
• "Cancer affects all population groups in the United States, but due to social, environmental, and economic disadvantages, certain groups bear a disproportionate burden of cancer compared with other groups." NCI
• Don't forget the rarity of the cancer. Rare cancers, including gyn ones, generally get less funding for research and support services. #sarcoma
• “Your zip code matters more than your genetic code.”
• Society, financial, ethnicity, geography, gender identity.... So many people don’t get the care they need and deserve.

T2a: What are some of the cancer disparities that show up in the diagnosis of gynecologic cancers? 

T2b: What are some of the cancer disparities that show up in the treatment for gynecologic cancers?

• African Americans are more likely than Caucasians to be diagnosed with regional or distant stages for most cancers. Hispanic women are 40% more likely to receive a #cervicalcancer diagnosis. Asian Americans are at 5x the risk! 
• Black women and Latinas are more likely to be diagnosed with advanced stage disease.
• per @theNCI the incidence rates of colorectal, lung, and cervical cancers are much higher in rural Appalachia than in urban areas in the region.
• Lack of access to follow up for an abnormal Pap test or abnormal uterine bleeding also contributes to delays in diagnosis.
• We know African American women are DYING at 2x the rate as their Caucasian peers. We also see disparities in the stigma attached to an HPV-related cancer, gender identification, socioeconomic status, and location, location, location
• Black women are less likely to be operated on by a high-volume surgeon or to be offered clinical trials. This leads to worse outcomes.
• mentioned in the @AACR Cancer Progress Report: "African American and Hispanic patients with early-stage cervical cancer are more likely to forgo surgery, which is the standard of care, compared with white patients (17% and 12% vs 9% respectively)"
• In #gyncsm care especially, high-case volume and gyn-onc specialists have statistically better outcomes. So the disparities in access and overall can really hit hard.

T3: Studies have found African-American women experience higher mortality from #endometrialcancer than any other group of women. What factors are researchers looking into to explain and address this disparity? 

• Endometrial and cervical cancer have some of the largest racial disparities among all cancer disease sites. This may be partly due to the double whammy of poor quality care for patients who are WOMEN and BLACK.
• Black women (not just in the U.S.) are more likely to be diagnosed with uterine #sarcoma, which tends to be more aggressive than endometrial carcinoma.
• @KemiDoll is a leader in this field. Racism is a driving contributor to poor outcomes in #endometrialcancer.
• although endometrial cancer disparities for decades were assumed to be related to genetics @KemiDoll brilliantly demonstrated how care for Black women with #endometrialcancer is delayed.
• It is great to see researchers leading the way into figuring out the disparities in endometrial cancer and groups like @ECANAwomen who are supporting the research and the women.
• Multiple factors. Some I think about 1) delays in diagnosis and work up of abnormal bleeding 2) inadequate or no surgery 3) biases affect adjuvant therapy recommendations or uptake 4)% higher high risk histology— we need more work there!
• Decades and billions of dollars of funding have shown these are not genetic difference. The healthcare system needs to re-evaluate how we have failed women who are Black with #endometrialcancer
• Historically, People of Color were not represented equitably and statistics show: African Americans are 13% of US Population but only 3% in oncology trials, Hispanics 19% of US Population but only 6%. Disparities can be minimized with health equity and access to care.

T4: American Indians and Alaska Natives have higher incidence and mortality rates for cervical cancers and higher mortality for uterine cancer. What role does future research play in addressing disparities such as these?

• Racism in healthcare delivery is a huge problem. We’ve been looking at the lit and many researchers have found that implicit bias and anti-radicals training is desperately lacking in healthcare education
• We need to bring screening to their location and programs to reduce risk https://www.cdc.gov/cancer/dcpc/research/articles/cancer-AIAN-US.htm
• Groups like @AICAF_Org are working in native communities to address cancer disparities. Research for gyn cancer is already on the low side. Then add that the treatment studies are mostly caucasian participants and you can see the challenges.
• We need more research in these communities about the experience of women diagnosed with the cancers too to understand the missed opportunities best. I suspect issues of access to health care system and delayed work ups contribute
• T4: Serious kudos to Amanda Bruegl, M.D. who is a great resource on disparities related to gyn cancer in Native Americans. She has been looking at HPV vaccine uptake, access to care and historical disenfranchisement as causative of poor outcomes in #cervicalcancer.
• Similar to other marginalized and minoritized groups, social determinants of health are the main drivers for these disparities in Native American communities. We need to involve affected communities in research and care.

T5: What are some population groups beyond racial and ethnic minorities for which cancer disparities in the U.S. exist?

• People with disabilities typically have lower cancer screening rates than people without disabilities. They face barriers like transportation, wait time for appointments, and difficulty getting to an appointment.
• Lower screening rates are also seen in the LGBTQ+ community. Common barriers include fear of discrimination and lack of information. It is important to "screen the body parts you have.
• Individuals from the LGBTQ+ community experience cancer disparities due to structural discrimination and social determinants of health. For example, transgender men with a cervix are less likely to receive cervical cancer screening tests.
• The rural/urban disparities are pretty stark with gynecologic cancer. There are also age disparities - some due to "too young for cancer" thinking.
• Remote geography decreases access to care. #gyncsm. We need to partner community healthcare with larger health care systems.
• The issue of bias against women influences all the care that women with #gyncsm receive. The cancer center's focus is rarely gynecologic. Funding for gyn cancers is disproportionately low. Gynecologic oncologists are under-represented in healthcare leadership.
• We can include underinsured / uninsured, and language barriers to our groups too.
• Rural and urban disparities have to do with lack of access to quality care. Agree with age myths. We are diagnosing endometrial cancer at younger ages.  
• Transportation is a huge barrier. Rural patients and caregivers struggle to make it to appointments, pay for gas, take time off of work.

T6: What are some resources and groups helping to address disparity and equity issues? How can advocates help to reduce gyn cancer health disparities in our own communities?

• We [Cervivor] are here for anyone diagnosed with #cervicalcancer. For LGBTQ resources: @cancerLGBT For People with Disabilities: @CancerLegalHelp We believe sharing your story matters. You have the power to shift the narrative!
• Patient Advocates should center marginalized voices! Surround yourself with patients from diverse backgrounds as much as you can to understand the different challenges and complexities.
• Resources @GYNCancer @SGO_org. Advocates can raise awareness in their communities, become research advocates, and lobby for more funding for research and care.
• we need to make policy changes @ACSCAN has a chartbook and is working on policy https://t.co/INVqSyfYVF
• Talk with your nurse, your doctor and your care team. Local resources may often be the best resource for patients. Eliminating inequities begins locally, extend regionally and gains traction nationally.
• @SGO_org recently made this joint statement https://www.sgo.org/news/joint-statement-collective-action-addressing-racism/
• More on the survivorship aspect, but sharing information about the side effects of treatment may help lessen disparities due to lack of treatment toxicity support A good organization for pelvic radiation from the UK is @PRDA_uk
•  If you’ve never seen it the classic documentary Southern Comfort is an excellent watch for those of us who care about disparities in Gyn Cancer. https://transguys.com/videos/southern-comfort
• While social determinants of health play a great role in #healthdisparities, there is evidence that health professionals themselves contribute to health disparities through non-inclusive medical processes and biased interventions.
• And these community partnerships would be incredibly beneficial to cultivate BEFORE screening/diagnosis. Meeting people where they are for community health education PRIOR to a time of need can help reduce disparities down the road.
• Groups like @IamCervivor @ECANAwomen @ucan2020 @SHAREing are doing excellent work. I'm missing many so if you are working in the space of disparities, please let me know.  

Note: There will be no #gyncsm chat in April. Save the date for our next chat Wednesday, May 12, 2021 at 8pmET (new time for 2021) when we’ll discuss “Cancer Survivors: Risk of Recurrence and Other Cancers/Diseases”.

Stay Safe,

Dee 

Additional Resources Shared

Geographic disparities in the distribution of the U.S. gynecologic oncology workforce: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5699889/

Palliative care: Racial and ethnic disparities in palliative care utilization among gynecological cancer patients https://www.sciencedirect.com/science/article/abs/pii/S0090825820341597

@AACR report https://cancerprogressreport.aacr.org/wp-content/uploads/sites/2/2020/09/AACR_CDPR_2020.pdf