Advocacy in gastroenterology is ‘not about achieving perfection but progress’
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At AGA’s annual Advocacy Day in 2022, more than 90 member advocates confronted dozens of federal lawmakers and their staff about pivotal issues and regulatory burdens that affect patient care and delay treatment.
Concerns about prior authorization, step-therapy reform, Medicare reimbursement and federal research funding garnered the most attention and helped inform the AGA’s 2023 policy agenda and advocacy efforts.
Source: American Gastroenterological Association
“Reducing the administrative burden to providing quality GI care is the No. 1 issue our members want us to advocate for,” Rotonya M. Carr, MD, FACP, chair of the AGA Government Affairs Committee and co-founder of the Association of Black Gastroenterologists and Hepatologists (ABGH), told Healio Gastroenterology. “We are also in support of the ‘Safe Step Act,’ which prevents payers from profiting off making our patients fail first on medications that we know are not going to work for them.”
Carr continued: “This act is and continues to be a front-and-center issue for our advocacy efforts.”
Though physicians are well-acquainted with helping individual patients make the right decisions about their care, physician advocacy strengthens the field’s ability to support patients and providers in the GI community as a whole.
“Physician advocacy is coming together as a group of health care providers to let leaders in the community, health care and government know what is important and what we as a health care community need,” Alexander M. Goldowsky, MD, attending gastroenterologist at Beth Israel Deaconess Medical Center, instructor of medicine at Harvard Medical School and member of Rainbows in Gastro, said.
Ugo Iroku, MD, MHS, co-founder of ABGH, added: “Health care as a field exists not primarily for health care providers, but for the health care recipients, patients and communities. Physician advocacy in this space is first and foremost about remembering this and leveraging our roles as providers toward putting the spotlight back on the needs of the community.”
In the past year alone, the health care community has seen numerous examples of physician advocacy in action, including the battle against UnitedHealthcare’s prior authorization policy. Since UnitedHealthcare announced the policy, which would impact GI endoscopy services, organizations have activated member advocacy: The Crohn’s & Colitis Foundation rallied at the company’s headquarters, AGA launched its #StopUHC social media campaign and GI societies collectively issued position statements opposing the program, while thousands of individuals penned action alerts.
In June, UnitedHealthcare ultimately delayed its initially proposed prior authorization program and implemented an “Advance Notification Program” instead. AGA members continue to advocate for patients to receive timely access to care and are taking the case to the media and UnitedHealthcare directly, citing the GI community’s concerns around lack of transparency and data from the insurance provider.
“This is a notable example of how advocacy can work in real time,” Carr noted.
Advocating for GI Needs on Capitol Hill
Political action committees (PACs) dedicated to special interest groups are infamous in Washington for influencing policy and legislation. With so much medical misinformation and health care policy at stake, it seems only appropriate that medical PACs are available to support legislators and candidates who protect the needs of patients and providers by helping policymakers make well-informed laws that align with community needs.
This is especially critical for increasing the visibility of gastroenterology on Capitol Hill, as this field is often viewed as having a smaller voice compared with the larger specialties.
“I have learned that being in advocacy means it is important to be able to answer questions to ensure that people in leadership have all the information they need to make informed decisions about how to best advocate for patients and the GI community,” Goldowsky said. “I want GI leaders to know that we are here to help educate and answer these questions.”
The AGA PAC was founded in 2006 as the voluntary, bipartisan political arm of AGA and is the only national PAC supported by a GI society. Since its inception, AGA PAC has helped advance AGA’s policy priorities like closing the Medicare colonoscopy loophole, expanding the CRC screening continuum, extending reimbursement for GI services and increasing funding from NIH to support digestive health research.
Additionally, it successfully advocated to prevent $100 million in Medicare physician cuts and for special language to be included in the Department of Health and Human Services fiscal year 2023 funding bill to encourage the FDA to improve diversity and patient centricity in inflammatory bowel disease clinical trials, Carr noted.
“Its goal is to make sure we have the resources we need to advocate for our patients and for our practice,” Carr said. “There are no other organizations advocating for the things we think are important.”
Leveraging DEI Advocacy to Improve Equitable Access to Care
Outside of physician advocacy groups that protect the interests of the overarching GI community, other groups aim to alleviate unique barriers certain populations face, promote equitable access to care and mitigate health disparities.
One such affected population is the Black community, which remains 20% more likely than white Americans to be diagnosed with and 40% more likely to die from colorectal cancer, Pascale M. White, MD, MBA, MS, FACG, and colleagues wrote in Nature Reviews Gastroenterology & Hepatology. Black men and women also have the highest incidence of pancreatic cancer, with at least 30% higher rates compared with other racial groups.
“CRC is an issue that has captured national attention,” Iroku previously told Healio Gastroenterology. “It highlights what is, in many cases, a curable if not outright preventable disease that unfortunately today still has a disproportionate morbidity and mortality impact on Black communities.”
Additionally, despite the narrowing gap of racial disparities in liver transplantation and mortality over time, Black patients remain less likely to undergo transjugular intrahepatic portosystemic shunt for variceal hemorrhage (OR = 0.54; 95% CI, 0.47-0.62) and ascites (OR = 0.34; 95% CI, 0.31-0.38) or receive LT (OR = 0.66; 95% CI, 0.61-0.7) compared with white patients, Lauren D. Nephew, MD, MSCE, and colleagues reported in JAMA Network Open.
“Black patients often have to hurdle many systemic barriers when seeking care for GI symptoms,” Iroku said.“The most common feedback we receive as providers stems from patients not having their health complaints taken seriously, leading to prolonged suffering, delayed referral for specialist care and delays in diagnosis or treatment.”
He continued: “Additionally, there are issues of disparities due to social determinants of health, such as income and being underinsured, if insured at all.”
The longstanding need to mitigate the staggering statistics of Black health disparities coupled with the many recorded examples of systemic racism reaffirm the need for advancements in overcoming the barrier of racism in medicine. To this end, Iroku and colleagues co-founded the nonprofit organization ABGH to help Black patients attain their “full health potential.”
In the past year, ABGH has hosted myriad events such as the “Colorectal Cancer in Young Black Americans” webinar and inaugural Gut Health Summit. Both events brought providers together to discuss and generate solutions for discrepancies in access to care, lack of diversity in clinical trials, the need for more comprehensive and patient-centered care and strategies to manage specific health disparities Black populations face in GI.
Elevating the ‘Culturally Competency Approach’
Another group whose needs have been underrepresented in research, clinical practice and advocacy — largely due to in-group stigma — are South Asian patients with IBD.
Traditionally regarded as a disease of the Western world, epidemiological data published in Inflammatory Intestinal Diseases showed that although the prevalence of IBD is lower in India than in the U.S., the total IBD population in India is among the “largest across the globe,” with 1.4 million people affected in a country of more than 120 million.
Despite these statistics, IBD continues to garner poor disease awareness and carries cultural taboos, misconceptions and stigma, all of which negatively affect the acceptance of diagnosis, long-term therapy adherence and ostomy surgery uptake.
Further, although strategies such as the STRIDE II guidelines outlined a plan for a treat-to-target approach in 2021, several challenges in diagnosis and care remain, Tina Aswani-Omprakash, MPH, GI clinical research coordinator and president of the South Asian IBD Alliance (SAIA), and colleagues noted in Gastroenterology.
“There is a huge propensity towards complementary and alternative therapies in our community, as well as a stigma toward the disease and medication use, which is contributing to additional psychosocial stress and delays in adequate treatment,” Aswani-Omprakash previously told Healio Gastroenterology.
Persisting cultural barriers, such as fear of not being marriageable, also hinder disease acceptance among patients, their families and their communities.
SAIA is a nonprofit, patient-clinical collaborative charity in the U.S. that creates resources, research and education for IBD patients and health care providers of South Asian origin. In partnership with their patient advocacy arm, IBDesis, they further aim to minimize disparities, dispel stigma, promote early diagnosis and improve access to treatment.
“Our mission is global,” Aswani-Omprakash said. “We are focusing on meeting some of the unmet needs among our patient population and ensuring research advancement so that our population’s disease phenotypes and genotypes can be understood better.”
Currently, SAIA is addressing professional development in Pakistan by hosting CME events in conjunction with Parsa Trust and Project ECHO to deliver education to primary care physicians and GIs. The nonprofit is also developing artificial intelligence models to distinguish between Crohn’s disease and GI tuberculosis, spearheading live patient educational programming via support groups on cultural stigmas and combatting historical mistrust of Western medicine and surgery.
“There are many unique cultures and a lot of the education we provide is not seen through that cultural lens,” Neilanjan Nandi, MD, FACP, associate professor of clinical medicine at Penn Medicine and a member of SAIA, said. “We want to elevate that cultural competency approach and set the tone for clinicians of other cultures to approach their own unique communities in much the same way.”
Sexual, Gender Minorities
The medical establishment has historically upheld bias when treating the LGBTQIA+ community, dating back to the HIV and AIDS crisis in 1985 when the FDA established a lifetime ban on blood donation by men who have sex with men.
Through continued advocacy efforts, policy on this ban has undergone many iterations since its establishment, which has ultimately culminated in broadened donor eligibility in January 2023.
“The biggest problems exist on a systematic level,” Nikki Duong, MD, clinical assistant professor of medicine at Stanford University Medical Center and executive board member of Rainbows in Gastro, told Healio Gastroenterology. “Many providers do not feel comfortable treating LGBTQIA+ patients and lack the understanding, knowledge or, unfortunately, interest in caring for unique determinants of health that preferentially impact LGBTQIA+ people.”
Duong continued: “There is growing interest in the scientific community in regard to prioritization of research funding towards the study of GI health in LGBTQIA+ people, but we are still far behind, in terms of progress.”
Another prime example of ongoing hurdles, despite the historical markers of inequity among this community, the U.S. National Institute on Minority Health and Health Disparities did not designate sexual and gender minorities (SGMs) as a health disparity population until 2016.
“LGBTQIA+ patients with digestive disorders are a particularly vulnerable group and have experienced discrimination, even in the health care setting,” Goldowksy said.
According to Duong and colleagues, results from a 2015 U.S. national survey showed 23% of transgender adults avoided necessary health care due to fear of mistreatment. Another survey revealed up to 89% of transgender and 49% of LGBTQIA+ patients in the U.S. did not think there were enough trained providers to care for SGM people.
Rainbows in Gastro is a group of gastroenterologists, hepatologists and advanced practice providers who identify as members of the LGBTQIA+ community advocating for improved care of this marginalized group of patients and providers. According to Goldowsky, the group’s current focus is supporting the transgender and gender-nonconforming communities.
“Acts and laws affecting the transgender community and preventing their ability to transition and use the bathrooms of their gender identity are a major issue,” Goldowsky said. “While some have been successfully challenged in the courts, this community is still vulnerable. For many of our patients, having an accessible bathroom nearby is crucial and acts like those initiated in Tennessee, Florida and Texas would make that incredibly difficult for these patients.”
To combat this growing barrier in patient care, Rainbows in Gastro issued a call to action urging GI societies to focus their attention on state-level legislation that explicitly targets this community. The group’s petition asked societies to release statements in support of their transgender and gender-nonconforming members, make an affirmative declaration that societies will not hold conferences in the states in which these laws were passed and create a support plan for these members attending conferences in the states that may cause them harm.
AASLD, ACG, AGA, ASGE and NASPGHAN have since acknowledged the concerns raised by Rainbows in Gastro and reaffirmed their “collective commitment to safety and inclusivity” for LGBTQIA+ members and patients in a multisociety statement on social media.
To continue making these necessary changes in policy and advancing health equity, more people who understand the unique needs of this population must be in power, both in policy and practice, Goldowsky noted.
“The needle is moving ever so slightly, but we have a long way to go,” Duong added. “The first step is for our community to recognize and acknowledge the need for change. The next step is to prioritize change and come up with tangible action items.”
Duong continued: “The hardest part is to act on these items and implement change.”
The Human Behind the Disease
Another critical part of advocating for improved patient care is recognizing the value of a patient’s voice; their story can help contextualize the lived, day-to-day experiences of GI diseases and inform where provider education falls short.
“Doctors sometimes think they know what a patient needs, but understanding the patient perspective changes the conversation,” Nandi said. “When it comes to SAIA, we are pushing for equal input: The patient-provider partnership has helped inform the missing points in provider education and patient care.”
Hand in hand with physician advocacy, patient advocacy is extremely important, Aswani-Omprakash said. Patient groups like IBDesis have the ability to empower patients and unite a community that faces similar stigmas and inequities in care.
“Supportive communities have the power to change lives,” Aswani-Omprakash continued. “From a patient perspective, it encourages patients to have more open, candid conversations with their physicians that they were not comfortable doing before.
“We are trying to bridge that gap and work directly with providers so patients do not have to go out of their way and rely solely on patient-centered organizations to seek medical advice,” she said.
Nandi advises patients to practice self-advocacy by speaking up and making a list of questions to send to their providers before an appointment. He further advises providers to familiarize themselves with helpful resources and patient groups to fill the gaps patients may experience in education and care.
“Patient advocacy brings forward the human behind that patient’s disease,” Aswani-Omprakash said. “Having a plethora of voices is extremely important because it showcases the diversity of experience both physically and emotionally.”
She continued: “It creates acceptance for the disease and allows us to move the needle forward on how we look, talk about and approach treatment.”
Decide to Have Impact
Without continued medical advancement and advocacy efforts, Goldowsky believes health care would be in a “much more static position.”
“Advocacy leads to better patient care and a more inspired and passionate group of health care workers,” he said.
Not only that, it “preserves the humanity in our field,” Iroku added.
“It raises awareness of health care disparities affecting marginalized communities and encourages development of targeted interventions to address these,” he said. “Advocacy leads to the creation of more inclusive and patient-centered care practices which ultimately improve patient outcomes and advance the field as a whole.”
For many, getting started in advocacy work can seem daunting, but Nandi noted that you do not need to be a part of an advocacy group to have an impact on patients.
“Just knowing about the different groups and helping to promote their awareness in patient visits can make a real difference,” he said.
Other ways to participate in physician advocacy include financially supporting PACs and advocacy groups, volunteering at nonprofit organizations, signing letters to Congress, authoring op-eds on advocacy issues and amplifying issues through social media. On a larger scale, physicians can speak with policymakers in their district or invite them to their clinics to “let them see firsthand the impact of their decisions,” Carr added.
Ultimately, Duong noted advocacy is all about being open-minded and comfortable with the uncomfortable and realizing it is “not about achieving perfection but progress.”
“Advocacy is easy,” Carr said. “The hard part is deciding that you want to have an impact. And, once you do, the AGA PAC has all the tools you need to be successful.”
In conjunction with AGA’s Leadership Summit, AGA committee members will discuss top priority advocacy items on Sept. 21 at AGA Advocacy Day 2023. These discussions will inform the organization’s 2024 policy agenda and goals for continued advocacy efforts.
- References:
- AGA Advocacy Day. https://gastro.org/advocacy-and-policy/get-involved/aga-advocacy-day/. Accessed Aug. 1, 2023.
- Advocacy in gastroenterology: Advancing health policies for our patients and our profession. https://www.mdedge.com/gihepnews/article/236192/society-news/advocacy-gastroenterology-advancing-health-policies-our. Published Feb. 19, 2021. Accessed Aug. 1, 2023.
- Balasubramaniam M, et al. Gastroenterology. 2022;doi:10.1053/j.gastro.2022.08.051.
- Culturally and linguistically appropriate services. https://www.minorityhealth.hhs.gov/omh/browse.aspx?lvl=1&lvlid=6. Accessed Aug. 1, 2023.
- Duong N, et al. Lancet Gastroenterol Hepatol. 2023;doi:10.1016/S2468-1253(23)00005-5.
- Kedia S, et al. Inflamm Intest Dis. 2017;doi:10.1159/000465522.
- Nephew LD, et al. JAMA Netw Open. 2023;doi:10.1001/jamanetworkopen.2023.24539.
- Patel A, et al. Gastroenterology. 2023;doi:10.1053/j.gastro.2023.01.042.
- Q&A: Rainbows in Gastro aims to guide change for LGBTQ+ trainees, patients in GI. https://www.healio.com/news/gastroenterology/20230706/qa-rainbows-in-gastro-aims-to-guide-change-for-lgbtq-trainees-patients-in-gi. Published July 7, 2023.
- White PM, et al. Nat Rev Gastroenterol Hepatol. 2021;doi:10.1038/s41575-021-00464-y.
- For more information:
- Tina Aswani-Omprakash, MPH, is GI clinical research coordinator at Mount Sinai and president of SAIA and can be reached at tina@southasianibd.org.
- Rotonya M. Carr, MD, FACP, is Cyrus E. Rubin Chair and chief of gastroenterology at the University of Washington, government affairs committee chair for AGA and co-founder of ABGH and can be reached at rmcarr@medicine.washington.edu.
- Nikki Duong, MD, is clinical assistant professor of medicine at Stanford University Medical Center and executive board member of Rainbows in Gastro and can be reached at nduong91@gmail.com.
- Alexander M. Goldowsky, MD, is an attending gastroenterologist at Beth Israel Deaconess Medical Center, instructor of medicine at Harvard Medical School and executive board member of Rainbows in Gastro and can be reached at a.goldowsky@gmail.com.
- Ugo Iroku, MD, is a gastroenterologist at Summit Health and co-founder of ABGH and can be reached at uiroku@gmail.com.
- Neilanjan Nandi, MD, FACP, is associate professor of clinical medicine at Penn Medicine and member of SAIA and can be reached at neilanjan.nandi@pennmedicine.upenn.edu.
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