Advocacy in ID: The ‘critical’ role of physicians
In 1981, 80 men met in a New York City apartment to raise money to fight “gay cancer,” a deadly illness that was mostly affecting men who have sex with men in New York City and California. This informal meeting would become the foundation of the Gay Men’s Health Crisis — the world’s first advocacy organization for HIV/AIDS.
The rise of the Gay Men’s Health Crisis (GMHC) and other HIV/AIDS advocacy organizations that followed was in response to the lack of public support for patients with the illness, according to Infectious Disease News Chief Medical Editor Paul A. Volberding, MD, director of the AIDS Research Institute at the University of California, San Francisco. GMHC alone has raised millions of dollars since the organization sponsored the first major fundraising event for AIDS in 1983.
“At first, it was really all about increasing access to organized care and services,” Volberding said in an interview. “But these organizations became national advocates for more investment into research, drug development and approval, as well as medical care reimbursement, which resulted in the Ryan White CARE Act and AIDS Drug Assistance Program.
“In a sense, HIV became an entitlement for care as a result, in part, of advocacy.”
Advocacy continues to have an important role in the prevention and treatment of HIV/AIDS and other infectious diseases, which often disproportionately affect marginalized and vulnerable patient populations, and Volberding said it is “critical” that physicians get involved by working with patients and patient advocates.
“It is pretty hard for any individual physician to do this alone but joining advocacy groups can make it much easier, and I think we all should,” he said.
In a commentary published in The Lancet, Richard C. Horton, MB, FRCP, FMedSci, editor-in-chief of the publication, wrote that physicians “can no longer remain silent about their work, leaving advocacy to a small group of medical politicians.”
“Doctors cannot assume that they have either the trust of the public or the support of governments unless they are willing to take part in the public debate about what kind of society they want for the sick and impoverished,” he added. “More doctors, irrespective of their specialty, need to enter the public arena of dispute.”
The Infectious Diseases Society of America has outlined numerous ways that physicians can be advocates, such as by participating in Congressional meetings, emailing or calling government officials, encouraging colleagues to advocate, contacting the media and advocating on social media platforms.
Congressional staff members who were surveyed in 2015 reported that face-to-face meetings with constituents have the greatest influence on policy decisions, followed by individualized emails, local editorials, town hall comments, phone calls and letters to the editor. However, it can be challenging for physicians to find the time to participate in constituent meetings. Survey data published earlier this year in Open Forum Infectious Diseases showed that slightly more than half (53%) of ID faculty at an academic facility met criteria for burnout. Therefore, it is important for physicians to use advocacy resources that are available to them, according to Volberding.
“Becoming part of organized approaches, like IDSA and [the HIV Medicine Association (HIVMA)], is really excellent and can help bring physicians together,” he said. “It is one of the most important ways to avoid the burnout that otherwise is a constant threat.”
Email campaigns are one option for IDSA and HIVMA members who want to get involved but are too busy to meet with their representative. The organizations have an opt-in Member Advocacy Program (MAP) that grants physicians access to a monthly email bulletin that highlights news on important federal policies and advocacy initiatives; invitations to events and webinars that help refine advocacy skills; and opportunities to share stories with federal policymakers, media and social media.
IDSA and HIVMA also provide members with opportunities to participate in “action alerts,” which are online opportunities for members to personalize and send emails prepared by IDSA and HIVMA directly to their congressional representatives in order to advance specific priorities, according to Amanda J. Jezek, senior vice president of public policy and government relations for IDSA.
“That is really something that just takes a minute or 2,” Jezek said. “It is a very useful way for very busy people to weigh in on important issues.”
Jezek said advocacy is one of the society’s highest priorities. There are several ways that IDSA and HIVMA representatives can help physicians who have time advocate to Congress, such as scheduling meetings and providing talking points and background information to ensure the meeting is successful. These Congressional meetings can be held either in Washington or — depending on the time of year — in the physicians’ own district.
“The month of August is a great time to have meetings in state and district offices because Congress is in recess the whole month, which means the representatives are back home,” Jezek told Infectious Disease News. “That is something we are happy to arrange for our members.”
When meeting with government officials to discuss health care issues, it is important for ID physicians to establish themselves as a source of information, according to Matthew M. Zahn, MD, medical director of the division of epidemiology and assessment for the Orange County Health Care Agency in California.
“What you do in public health is not obvious to everybody,” Zahn said during an IDSA/HIVMA webinar. “Even as an ID physician, people don’t necessarily know what that is. Being able to talk about what we do and who we are gets people’s attention.”
It is also important for physicians to share specific stories to “put some flesh on the topic,” Zahn said.
“[Congressional staff] are aware of the issue and its importance, in general,” he added. “But if you give a specific story and specific descriptions of situations where that funding has impacted what you do, that becomes incredibly important.”
In her experience as a liaison between IDSA members and Congress, Jezek has found that ID physicians are “great story tellers” who make clear connections between federal investments and their impact on public health.
“The fact that many ID physicians approach issues from that public health standpoint I think really makes them stand out as excellent advocates — even above and beyond so many of those in other medical specialties,” she said.
The IDSA currently has several advocacy priorities, according to Jezek. Among them are:
- efforts to curb antimicrobial resistance through infection prevention, enhanced surveillance and antibiotic innovation;
- strengthening the ID workforce and ensuring physicians have fair compensation and loan repayment opportunities;
- promoting ID research; and
- funding resources for public health, such as the CDC, and addressing public health issues, including global health security and vaccine-preventable disease outbreaks.
Currently, Jezek said IDSA is working with members to educate presidential candidates for the 2020 election about issues in ID and to encourage them to prioritize ID responses as part of their policy efforts.
IDSA is working on multiple legislative and regulatory proposals that aim to help make a career in ID a “financially feasible path,” Jezek said. On average, ID physicians earn approximately $100,000 less than physicians in other subspecialties, according to research published in Clinical Infectious Diseases. The disparity in compensation has contributed to a decline in the number of young physicians who apply for ID training.
One legislative proposal designed and promoted by IDSA would allow the CDC to offer loan repayment to physicians who serve in the agency’s Epidemic Intelligence Service (EIS).
“We had seen a few years ago that the number of physicians participating in the CDC’s EIS program had been declining,” Jezek said. “We learned that the very high student loan burden was a key factor driving physicians toward higher paying roles instead of public health. This loan repayment could really help address that.”
Loan repayment programs are currently available for certain groups of physicians, such as those who conduct research at the NIH or who care for patients in underserved areas.
“But there really wasn’t anything that targeted people who work in public health, so we developed a way to help fill that gap and advocated for it,” Jezek said.
The proposal was included in a pandemic preparedness bill that was approved by the Senate and House in May and signed by President Trump in June.
“It was really IDSA members who developed this proposal, spoke with and emailed members of Congress about it, and wrote op-eds about the need for it,” she added. “That kind of organized grassroots advocacy really pushed this effort forward and got it across the finish line. It really works.” – by Stephanie Viguers
- Horton R. The Lancet. 2002;doi:10.1016/S0140-6736(02)07670-5.
- IDSA. House spending bill recognizes need to strengthen health responses and research. https://www.idsociety.org/news--publications-new/articles/2019/house-spending-bill-recognizes-need-to-strengthen-health-responses-and-research/. Accessed July 2, 2019.
- IDSA. How to become an advocate for HIV and ID: IDSA/HIVMA Advocacy 101 Webinar. https://www.hivma.org/es/policy--advocacy/how-to-become-an-advocate-for-hiv-and-id/. Accessed July 2, 2019.
- IDSA. Member Advocacy Program. https://www.idsociety.org/policy--advocacy/member-advocacy-program/. Accessed July 2, 2019.
- Nori P, et al. Open Forum Infect Dis. 2019;doi:10.1093/ofid/ofz092.
- Zahn M, et al. Clin Infect Dis. 2018;doi:10.1093/cid/ciy888.
Disclosures: Horton is editor-in-chief of The Lancet. Jezek is an employee of IDSA. Volberding reports chairing a data management committee for Merck.