By Matt Skoufalos
In any complex structure, be it a workplace, a professional association or a segment of an entire industry, resources are finite. Not every need will be met; moreover, not every need will necessarily be understood by the entity within which it has arisen. How do such issues come to the attention of decision-makers who can address them? Unless the structure of the system in question allows for rigorous, top-down evaluation, most challenges bubble up after something has already been broken. In the healthcare space, however, issues that lack attention may require the mechanisms of advocacy to be addressed.
Caitlin Donovan, senior director of the Hampton, Virginia-based Patient Advocate Foundation, said that patient advocacy in healthcare is rooted in “fundamental ethics of respect for people who are not getting equitable treatment and equitable access.” From the standpoint of those circumstances, the most effective advocacy approaches align various parties who are close to the issue with “assertiveness, not aggression, and diplomacy,” Donovan said.
“The people who are most passionate [about such issues] are less often the patients themselves, but people who love someone who has been diagnosed,” she said, “and that type of fervor carries them through decades of advocacy work.”
In the United States, the modern template for patient advocacy comes from approaches that first brought diseases like breast cancer and HIV/AIDS to the forefront of public discussion after years of being minimized or dismissed.
“During most of the 20th century, a woman diagnosed with breast cancer underwent a radical mastectomy,” wrote Bob Riter of the Cancer Resource Center of the Finger Lakes. “Decisions were made by physicians, and women often learned of their cancer diagnosis when waking up from surgery, absent one breast. A public discussion about breast cancer – especially your breast cancer – was unthinkable.”
Then, individuals with prominent political and social standing – like First Lady Betty Ford and journalist Rose Kushner, a Vietnam War correspondent who wrote about her breast cancer diagnosis in the 1970s – brought the issue to light, encouraging women to be more actively engaged in their diagnosis and treatment. Within 20 years, the National Breast Cancer Coalition had been established, which Riter noted “led to Congress channeling more than $1 billion for breast cancer research through the Department of Defense.”
From there, breast cancer advocacy shifted from raising awareness of the issue to increasing access to medicine, clinical trials and the affordability of both, Donovan said. But it took coordinated efforts among those diagnosed with the disease, people closest to them, and others with a degree of celebrity to step into the public eye and de-stigmatize the conversation.
Similarly, in the 1980s, stigmatization was the biggest initial hurdle to clear for those suffering from HIV/AIDS. Activists first took on the concept of “social death” that people battling the virus experienced, as the disease first emerged among communities of gay men in North America, who were fighting for recognition of their plight.
In the context of the 1980s HIV/AIDS crisis, “social death” refers to the process by which individuals were deemed “as good as dead” and socially ostracized long before they actually died from the physical illness. It was a state of being socially isolated, cast out from families, and stripped of personal identity and social roles due to intense stigma and fear.
When “undiagnosed gay men also faced the stigma of the disease,” Dr. Joseph Wright wrote in a 2013 analysis published in the American Journal of Public Health, “gay community political leaders soon began trying to combat the problem of stigma on behalf of the whole community.
“But only people with AIDS faced the problem of social death, and that challenge caused gay men with AIDS to see their agenda as distinct from that of the gay men around them,” Wright wrote. “In the process, they invented the idea of AIDS activism by and for people with AIDS.”
The stigmatization of those suffering from an illness like HIV/AIDS led to a “social death” that marked the anticipation of their physical death, and which in many ways compounded their suffering.
“Some cultures simply avoid discussion of life-threatening illness as a means of preventing social death,” Wright wrote. “Premature social death can be hastened by institutionalization, poverty, or stigma, which can push the socially dead into ‘zones of social abandonment’ – physically segregated spaces in which the socially dead await their biological deaths.”
The response from the gay community, an already marginalized group that had been mostly left to fend for itself in the wake of AIDS, was to organize around a founding document they called “The Denver Principles.” Its statements of intention included being referred to, not as “victims” or “patients” but “people with AIDS,” a phrase that emphasized their intentions “to live as full and satisfying sexual and emotional lives as anyone else.”
Those organizing efforts are some 50 years old, and yet, as medical treatments have advanced to include pharmaceuticals that make life with the virus much more manageable, some of the underlying issues around insurance coverage and industry regulations still persist.
“The struggles are ongoing, and that’s why advocacy for research is necessary all the time,” Donovan said. “We’re not even close to solving these problems.”
In the medical imaging space, similar challenges still persist for patients who need coverage for preventive care, diagnostic services, and closing loopholes that freeze out segments of the population who are already marginalized because of their circumstances. Even hard-won victories can be erased by changes in private sector corporate policy, previously established law and other complicating factors.
“We are constantly in danger of backsliding,” Donovan said.
She also spoke about the various roles that can be undertaken when organizing on behalf of people battling medical conditions, whether it’s fundraising, storytelling, legislative interactions or establishing groups to help drive local change around the issues. What’s most important, however, is making sure that none of that overtakes the voices of the people at the center of the issue – those in need of broader support.
“I’ve been here for 14 years and one of our biggest pet peeves has been this idea that you would see gatherings where people would say, ‘We’ve put all the stakeholders in the room,’ and there wouldn’t be any patients,” Donovan said.
“Taking the time to treat each patient like an individual person goes such a long way,” she said.
“If there’s a shared thread among people who are frustrated, it’s that they don’t feel respected. Injecting predictability into their experience from the moment they enter the [physician’s] office [is a critical goal]. Healthcare is intensely personal, and we’re at a point where it’s also uniquely expensive and complicated,” Donovan said.
Other times, professional advocacy can take the form of inviting outside perspectives into a space that’s often siloed. When radiologist Elliot Fishman was exploring ways to improve patient experiences in the imaging space, he established a monthly lecture series intended to help imaging professionals evaluate their approaches to their jobs.
Fishman, a professor of radiology, surgery, oncology and urology at Johns Hopkins University Hospital in Baltimore, Maryland, knew that the professionals in his department attended numerous lectures about imaging modalities and specific disease states with regularity. But he believed they could benefit from the insights of highly successful people from outside the medical field.
Since the lecture series launched, speakers have included NVIDIA CEO Jensen Huang, PIXAR founder Edwin Catmull, former Johns Hopkins President William Brody, who also became president of the Salk Institute; and even Lynda Carter, the actress famous for playing Wonder Woman.
Speakers delivered addresses on a variety of topics, like the future of work or AI as a public service. Cindy Wolf of The Charleston spoke about her expertise in delivering hospitality at a prominent Baltimore restaurant and the insights it could offer to patient care that makes them feel as important as guests at a high-end dining establishment.
Their talks were translated into white papers that were then published by the Journal of the American College of Radiology, reaching a broader audience than those attending in person and including takeaways for radiology professionals.
But Fishman also noticed how well attended the talks were, an observation he attributed to the non-hierarchical nature of the interaction.
“What people need to focus on is looking at the best of the best outside of medicine,” Fishman said. “You need to look at what other people are doing who are successful.”
“If we’re going to have someone medical from Mayo or NYU come and speak, I think people get a little resentful; a little defensive,” he said. “If you have someone who comes from a company like Google or Amazon, we’re not competing with them. They’re just telling us a story. No one’s getting up there and saying, ‘Here’s the right answer.’ They say, ‘Here’s what I find worked for me.’ I look at it as a conversation between the speaker and you.”
“I think people need to listen to other people, what challenges they’re facing in other industries, and what they’re doing about it,” Fishman said. “Everybody wants the best; you want to do whatever you can do to make things right.”
“If you have people who speak about it – how do you run things, how do you think about things – to me, that’s what I think may be important,” he said. “At the end of the day, what works for a company like NVIDIA or PIXAR, you should find out.”
From helping patients push for better care and broader recognition of their circumstances, to developing non-hierarchical insights to benefit imaging professionals, approaches to advocacy take several forms. At the highest levels, professional organizations lean on advocacy efforts in interactions with lawmakers who have the ability to direct funding, offer support and carry forward issues that can positively affect a broad spectrum of outcomes.
Victor Seghers is a pediatric radiologist and nuclear medicine physician at Texas Children’s Hospital in Houston and vice chair of the Committee on Government Relations for the Society of Nuclear Medicine and Medical Imaging. (SNMMI). For Seghers, one of the biggest hurdles to clear when presenting his platform to government officials (or even the general public) involves educating his audience about his professional specialty and the opportunities it can drive for people suffering from cancers.
Theranostics — a portmanteau born of radiotherapy and diagnostic imaging — describes the field of novel radiopharmaceutical treatments designed to identify, bond with, and then destroy cancerous cells in patients’ tumors. The technology behind the drugs is complicated, involving infrastructure like cyclotrons, which generate high-energy particle beams to create radioisotopes.
The product of that process can be short-lived, and often requires a high-end courier to deliver it in time for treatment. Its applications can be highly effective, but also highly specific, and, while proving their use cases over time, require further investment to maximize their impact. In addition to explaining the value of the technology and the process it supports, advocates like Seghers also have to ask lawmakers to help make sure practitioners can be paid for their efforts — and that patients can afford the treatments.
In the past year, SNMMI has advocated for changes in reimbursement calculations at the congressional level, moving toward an average sale price rather than the mean unit price by which the Centers for Medicare and Medicaid Services has calculated it.
“They are very different methodologies,” Seghers said. “This newer methodology has much better data to track actual costs, and therefore makes it easier for us to get reimbursement from the government so that we can ensure that these medications are paid for. Hospitals are therefore willing to provide the service, and then patients can get access.”
“As a physician, I see the patient, so I can see the benefit that the patient gets,” he said. “That’s really what galvanizes us, when we see what this is doing for this patient.”
The key to advocacy at the legislative level is sustained pressure and a focus on driving incremental change, Seghers said. When big wins are elusive, focusing on smaller victories helps to keep the issue front and center in conversations about resource allocation and policy changes. Consistent messaging over time is the only tool that helps to overcome changes in leadership, priorities and focus.
“We’re constantly doing advocacy, whether it’s patient advocacy or governmental advocacy, front and center,” Seghers said. “That’s the only way that you can do this, because you’re always speaking on the same topics to different people.”
“We do not think that we’re going to be successful this year, necessarily, so, it’s really just coming back over and over and over again over the next three, four, five years, with the same, consistent message, and then, hopefully, we can start to make changes,” he said.
“You have to demonstrate value. You have to demonstrate need. You have to explain the situation. The situation can be, ‘something’s expensive,’ but why is it expensive? What is the benefit of it?” he added. “You’re constantly having to provide the education to explain the value proposition for this, and the benefit for patients, who are ultimately the citizens, and paying for this with our tax dollars.”
For people who aren’t certain where to begin working on issues that require sustained pressure of coordinated advocacy, Seghers encourages them to simply find a level of engagement that works for them, whether at work, in the local community, or within an organization to which they belong.
“Just get involved,” he said. “Do anything to jump in. Exercise that muscle. Get used to having these conversations, build rapport, become better at delivering your talk when you have to.”
“If you throw out a thousand seeds, maybe only two seeds grow, but those two seeds can be very powerful,” Seghers said. “It’s a very inefficient process, and that is the difficult thing for people to get their head around. But advocacy just needs to be done.”
