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Pharma has generally done commendable work when engaging with marginalized and historically poorly-served patient populations, often focusing on ethnicity and the financially disadvantaged.

By Joseph Constance on Oct 9, 2023

Pharma has generally done commendable work when engaging with marginalized and historically poorly-served patient populations, often focusing on ethnicity and the financially disadvantaged.

Yet there remains a broad segment of the population which is economically disadvantaged and underserved by the healthcare industry – including those living in remote areas, the homeless, those of different sexual orientations, or those with questionable immigration status. These fragments of the population may be harder to define but also have significant unmet needs and live with the risk of falling through the healthcare gaps.

The pandemic was a case in point and it induced Genentech to rethink its approach, says Dr. Shalini Mohan, Executive Director and Head of Health Equity and Inclusive Research, U.S. Medical Affairs, at Genentech.

“Though the pandemic was initially thought to be an 'equal opportunity infector', we quickly learned that it disproportionately forced disease burden on vulnerable communities. For example, communities of color and rural communities were at greater risk of exposure and mortality due in part to crowded living conditions and lack of access to information and quality care,” she explains.

“We also saw many Native American communities carry a disproportionate disease burden because they were in multigenerational, close living quarters in rural communities where they were harder to reach and access,” she added.

The uninsured and under-insured also are very vulnerable. Many among these two groups do not see physicians regularly for exams and checkups and specifically for preventive care, such as screening for malignancies. They historically may not even have had access to the health care system, making an acute event their first encounter with the system.

“On the commercial marketing side, we have teams who work with external stakeholders to understand and address patient barriers, such as health literacy and providing educational materials in a patient’s preferred language,” notes Mohan.

For commercialized therapies, the company has established the Genentech Patient Foundation, which gives free Genentech medicine to people who don’t have insurance coverage or who have financial concerns.

In addition, Genentech attempts to reach the underserved through nonprofits and community organizations. “We are investing in partnerships that support and center the needs of historically underserved communities to improve health outcomes and advance health equity. Our patient advocacy and corporate giving teams play a major role in partnering with communities to address their barriers to care,” Mohan adds.

Takeda Pharmaceuticals, meanwhile, is taking a “holistic” approach by engaging its whole organization – from early stage drug discovery to commercially available products – when making medicines available to poorly-served patient populations, according to Dr. Chris Reddick, Vice President, Head of U.S. Health Equity at Takeda. “The company embeds awareness starting with R&D,” he says.  

Embedding a health equity culture

Reddick is responsible for developing and executing Takeda’s health equity strategy in the U.S. and operates in collaboration with Takeda’s Center for Health Equity and Patient Affairs (HEPA), which brings together internal and external partners worldwide to address health inequities and offer patient access to the company’s medicines. “In addition to the Center for Health Equity and Patient Affairs, we use a hub-and-spoke model to embed the health equity message across the entire company,” he adds.

The company has established health equity “points” in HEPA and in its different regions to facilitate the effort with all of its teams, including brand teams. “Our vision is that every team along the entire medicines development spectrum is embedding health equity principles into the work they're doing,” explains Reddick who also offers guidance to those teams.

“We might take insights gathered from engaging with a local organization or community organization or community clinic and determine that there is a need for a certain type of medicine and bring that information all the way back to discovery,” Reddick says. Takeda empowers its scientists to address inequities in the medicines development spectrum and is trying to make its clinical trials more accessible to traditionally underrepresented patient populations.

Recently, the company organized an advisory board in which its Oncology Group met with representatives from across the LGBTQIA+ community. “We engaged with that community and discussed the whole patient journey, including the barriers that that particular community is facing. That information is funneled back to the different groups that are touching our medicines development across the board,” Reddick says.

Trusted intermediaries

Takeda also takes a vertical approach, working with “trusted intermediaries” in addressing underserved patient populations, partnering with many organizations, such as Partners in Health; Remote Area Medical, a nonprofit provider of free pop-up clinics; the National Urban League; and a faith-based healthcare network in southwest Georgia, an area that Reddick considers a “healthcare desert.”  

But for Reddick while it’s important that Takeda provides medicines and grant funding, it’s just as important to share knowledge via a partnership model. He says, for example, that when communities lack access to healthcare they often innovate and problem solve on their own.

While Takeda could provide information like how to build robust data sets for different diseases to help track or monitor disease progression, communities can also share how best to build trust and meet patients where they are. “We're trying to get really way down into these communities to uncover their unique barriers (to accessing healthcare) and are trying to fill the gaps in those communities,” Reddick says.

Esther Schorr, who has been a patient advocate for about 30 years, believes that pharma has made good inroads when trying to reach underserved patient populations. “Pharma has been instrumental in reaching diverse populations -- across many disease states -- by becoming sponsors of our programming,” says Schorr who with her husband, Andrew, co-founded Patient Power, a patient education and empowerment website. With funding from pharma, Patient Power also produces live events designed to give marginalized patients more information on their condition and educate them about existing treatment options and clinical trials.

Pharma has also reached underserved populations by collaborating with and funding grants to nonprofits to educate their constituents about available treatment options and trials, explains Schorr.

Digging deeper

Pharma has much to offer by expanding its focus on reaching underserved communities, but this requires cultivating relationships beyond KOLs and the academic HCPs. “There is a big need to reach community physicians who are treating remote or underserved patients on a daily basis,” says Schorr. “The focus needs to be on the healthcare professionals in those communities that are not being reached, and educate them about treatment options available so that those patient groups and their physicians are equally educated.

“The catch here is gaining access to community doctors, not the ones doing the research and not the ones writing the papers, but the ones in small towns who have a patient with a rare leukemia for example. They may not know that there are new treatments and clinical trials available,” she declares.

Reaching out to hospitals in smaller communities or community clinics would be another way to do this. This is how to reach many underserved groups -- those who are geographically remote, financially disadvantaged, racial minorities, diverse gender-sexually oriented, and the like, according to Schorr.  

“Pharma needs to dig deeper. If they want to reach the people who need help with access, with funding, and with education, pharma needs to work more with grassroots healthcare delivery systems.”

Reaching the disadvantaged through clinical trials

A longer-term strategy to ensure underserved populations are reached and are able to access healthcare suited to them is rethinking pharma’s approach to R&D.

Genentech’s Mohan views clinical trials as a way for underserved populations to participate in research studying investigational medicines that have the potential to improve population outcomes.

“For instance, during the early stages of the pandemic we had limited understanding of Covid-19 so it was critical to ensure diverse representation in Covid-19 clinical trials as disease outcomes and drug responses can vary across populations,” Mohan says.  

“When planning clinical trials, we start by understanding what patient populations experience a disease that we're trying to reach and work backwards to determine where they most likely would receive care. Our greatest success has been finding patients and designing trials that meet their needs and which can be feasibly conducted at centers where they receive their care, which often are community hospitals and clinics,” she adds.

“Moreover, we try to reduce potential financial implications for patients when they participate in clinical trials. That means reimbursing for reasonable travel expenses to clinical trial sites, such as airfare and lodging whenever possible/applicable,” Mohan emphasizes.

Research teams across Genentech have shared inclusive research best practices, and are working to adapt them to meet the needs of their specific therapeutic areas, according to Mohan. “Each team is working to develop inclusive research action plans and goals to ensure our clinical trials are accessible by underrepresented racial and ethnic minorities. The teams need to be thinking critically about whom their patient populations are and ensure that when they design studies and trials that they reach a representative patient sample.

Raising awareness

“The first step is to raise awareness regarding the importance of expanding access to clinical research and the disparities/barriers faced by patients, and for teams to develop action plans so that there are targets. If objective accountability measures are not in place, it will be more difficult to reach the patients in need,” Mohan explains.