A Primer on Advocacy for the Hematology Trainee
The problems are always the same; you witness similar roadblocks over and over. Your patient cannot afford her prescriptions or can’t get the treatment that may save her life because her insurance refused to pay for it. A patient lost his health insurance because he lost his job, even though he lost his job because he was sick. Or, her child has a fatal disorder for which research to find a cure has been chronically underfunded. Or, your patient’s complex medical management has been repeatedly complicated by unstable housing. No matter the area of medicine one practices, the needs of our patients always extend far beyond what can be fixed with a prescription or a visit to the clinic. As a result, the need for physician and scientist advocates is greater than ever, especially in hematology. With increasingly complex and expensive medical treatments and technologies continually being added to the hematology toolbox, the urgency of physicians and scientists to become involved in advocacy has grown.
Trainees may feel that there is little room for them in this space, and that advocacy work is best suited to more senior hematologists with more significant clinical or research experience and broader networks. Yet, the first and most critical step of advocacy is the identification of a problem, and there is no faster way to uncover the inefficiencies and shortcomings in our current health care system than to be directly involved in patient care. As the “boots on the ground” in many inpatient and outpatient care settings, trainees are uniquely positioned to lay a foundation for advocacy work.
In this article, we discuss the most important components of advocacy work as physicians and scientists, and especially as trainees. We provide a roadmap for getting involved and prompting the positive changes you want to see for your patients as you embark on building your career in hematology.
What is advocacy in hematology?
An advocate is a person who, after identification of a problem, works to ameliorate it by raising awareness, demanding action, and generating solutions. As the individuals most familiar with the ways that real people access health care, as well as the ways in which people can fall through the cracks in the system, physician advocates have played a major role in the development of health policy, health care reform, pharmaceutical regulation, and public health programs. Physicians may choose to take up any issue that affects patients, their families, professional colleagues, or the health of the general public. Advocacy issues often fall into one of the following categories: research and disease-specific issues, health services, public health, ethics and social justice, laws and their interpretation, practice models and funding, and medical education.
Advocacy targeting societal or structural problems often covers both medical research and public health (e.g., funding or enhancing infrastructure for stem cell donation programs, reversing policies that stymie biomedical research, or implementing public health interventions to protect immunocompromised patients amid a pandemic). This is exemplified by the recent effort by ASH to pass the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 (Public Health Law No. 115-327) and subsequently obtain funding for the measure through an appropriations bill, which addresses public health needs for patients with sickle cell disease (SCD) and serves as a tool for epidemiological study. Over time, the findings may generate future changes to health services.
Health services advocacy often manifests through expanding access to medical care, either generally as through the introduction of a public option in the Patient Protection and Affordable Care Act (Public Health Law No. 111-148), or more specifically for an at-risk or underserved group, such as reauthorizing the Children's Health Insurance Program. For the hematologist, expanding access to care may also include advocating for the Centers for Disease Control and Prevention (CDC) to build a data-gathering program to better understand the health care utilization needs of patients with SCD or working on decreasing barriers for hematology patients to access prescription drugs.
Trainees may also focus advocacy efforts on matters pertinent to medical training, such as alleviating financial barriers and student loan debt burdens that discourage medical graduates from pursuing careers in underserved regions, strengthening research funding avenues for early-career physician scientists, or working to further emphasize humanism in the standard medical curriculum. Advocacy in medical education may also involve expansion of funding for graduate medical education or modifications to rules surrounding maintenance of certification. This branch of advocacy may be targeted at the government or at certifying bodies such as the Accreditation Council for Graduate Medical Education, the American Board of Medical Specialties, or the National Board of Medical Examiners.
In the field of hematology, as the medications and available treatments become more numerous and more complex, there is an increasing need for us to use our expertise to advocate for our patients and our profession. It is up to us to make sure we have a say in the legislation and policies that regulate, pay for, and provide access to these therapies, since we are most familiar with how they should be used and the value that they add to our patients’ lives. Making sure our government invests in further research and development to improve our understanding of these diseases, how to treat them, and how to make these therapies available to our patients is very much within the scope of practice for the hematologist.
What are the benefits of being a trainee advocate?
Creating positive change in the lives of your patients with blood disorders by increasing access to critical treatments is the obvious reason to get involved as early as possible. Trainees, as the future of the profession, also bring different perspectives to patient care and will ultimately be the most affected by policy changes that result from advocacy. However, there are other benefits to getting involved early as a trainee.
Building your network of like-minded individuals who share your passion for social justice, accountability, or your specific cause is an immediate and rewarding side effect of getting involved with grassroots advocacy efforts in your professional societies. Building your network means opening doors for collaboration in academic projects, amplifying your voice in pursuit of your advocacy mission, and expanding access to mentors and people in leadership positions. As a trainee just starting to carve out the career you want for yourself, these benefits are undeniable.
What tools can I use to advocate?
There are many ways to be an advocate for patients and physicians. One of the common tools available to everyone at home is communication with elected and appointed officials. This can be done by calling or writing a letter or e-mail to local, state, or federal elected officials in support of legislation or funding of initiatives that support our patients or profession. When done in concert with a larger group, this sort of advocacy is often referred to as grassroots organizing. Another tool commonly available is social media, which enables an easy and rapid exchange of news, science, and ideas, as well as amplification to raise awareness and interest in supporting or opposing key policies. Twitter and Facebook are often used for these purposes, but other platforms such as Instagram, TikTok, and less-mainstream platforms, can be used as well. Text messaging apps are also useful for these purposes.
Advocacy efforts can range broadly, from education on and amplification of a key issue to fundraising for a cause or candidate. More involved approaches, often utilized by professional societies and other stakeholders, might also include responding to proposed government rules and regulations during the public comment periods, or writing letters or providing policy briefs during legislative or legal hearings. Medical societies using this toolkit often maintain an archive of past letters submitted to serve as a record of how they’re advocating for their members and patients. There are many other ways to be an advocate, including speaking directly about key issues or concerns on an individual level or within your medical centers.
As physicians and scientists, we should portray our advocacy from this position. This often comes in the form of sharing data that helps to frame key issues; however, don’t underestimate the value of personal anecdotes. A personal story of success or struggle in your field can frame an issue far more effectively than data alone. Intertwining personal anecdotes with data or science is an effective strategy to demonstrate that a better solution is needed.
What is the role of professional societies in advocacy?
Professional societies commonly serve as resources for training, practicing, and retired physicians to learn about issues affecting their patients and fellow physicians. Examples include ASH, the American Society of Pediatric Hematology/Oncology (ASPHO), the American Medical Association (AMA), the National Medical Association, the American Society of Clinical Oncology (ASCO), the American Society for Transplantation and Cellular Therapy (ASTCT), and state and local medical societies. In addition to being hubs for scientific discourse and medical education, these organizations play key roles in local, state, and national advocacy. They speak under the banner of organized medicine, which is the concept that fewer, louder, unified voices can be highly effective at breaking through the noise to speak on key issues. This process involves communications with all manner of local, state, and federal branches of government regarding creation, development, and implementation of laws and rules, as well as public health messaging. Examples might include advocating for funding epidemiologic studies of patients with SCD, providing input on the annual development of the inpatient prospective payment system, which affects every medical specialty, or working with the U.S. Department of State to reduce barriers to visas and practice for international medical graduates.
Although societies are structured differently from one another, the core concept of organized medicine is entrenched in each. The AMA develops policy through a series of nested internal congresses resulting in policies brought to a house of delegates twice a year that includes members from every state society, most specialty societies, and special interest sections of medical students, residents and fellows, senior physicians, organized medical staff, and others. Through the process of reference committee hearings and the house of delegates, resolutions are submitted, amended, and either adopted, referred for further study, or not adopted. The AMA then uses this policy to advocate directly to legislators and government organizations, form partnerships with other aligned organizations, write model bills, and more. A similar approach is taken by many state and local societies, with advocacy focused more on state laws, local public health issues, and local issues that require national attention that can be brought to the AMA meetings as resolutions.
ASH develops internal policy through its standing committees and Executive Committee to drive external advocacy. The Society also uses advocates trained through the ASH Advocacy Leadership Institute and individuals in the ASH Grassroots Network to communicate key policy issues to ASH members’ elected legislators in Washington, DC. ASH also actively works with its Committee on Practice and Committee on Government Affairs, as well as its consultants, to provide feedback to the Centers for Medicare and Medicaid Services on funding measures for services and therapies, and to advocate for annual increases to research funding.
ASCO similarly has committee-derived internal policy, led by their government relations committee, with a focus on access to care, harm reduction, alternative payment models, and expansion of research funding. They have an expansive advocacy branch with an annual Advocacy Summit in Washington, DC, an ACT Network with similar grassroots advocacy design to the ASH counterpart, an advocacy toolkit, and an ASCO Association PAC. ASCO is also linked with several regionally affiliated oncology societies that perform similar state-level advocacy. Both ASH and ASCO have active roles in developing policy within the AMA’s house of delegates, as well.
ASPHO has organizational standards that drive advocacy with focuses on federal funding for research and epidemiology and expanding access to care including drugs, devices, and biologics for pediatric patients. They prepare a quarterly advocacy brief and have an annual webinar outlining advocacy priorities. They also ally with coalitions such as the American Academy of Pediatrics for additional advocacy, including sign-on letters to legislators or governmental organizations.
A highly specialized society, ASTCT uses its government relations committee to advocate mostly on issues related to coding, billing, and reimbursement for stem cell transplantation and the rapidly expanding array of cellular therapies such as the new Diagnosis Related Group (DRG) for chimeric antigen receptor T-cell therapies. They are also establishing a grassroots advocacy arm to engage members of the growing field of transplantation and cellular therapy.
These and many other organizations and interest groups offer excellent opportunities for training in physician advocacy and effective communication techniques with legislators and governmental organizations on behalf of our patients and colleagues.
How do I get involved?
The first and most important step is to identify the issues in hematology you are most passionate about and where you see the areas of greatest need. Additionally, reflect on the issues in health care, research, and medical training you are most qualified to speak about through your own experience. An effective advocate is fueled by a desire to address problems that directly affect her patients and can be justified by examples from her own practice. These real-world examples capture the interest of legislators and public officials, and telling these stories is the first step toward advocating for change.
Next, explore the local, national, and international professional societies that have interests overlapping with yours. Do they have a committee on government relations? A trainee council? Any social justice or community service arms? Do they offer training courses such as the ASH Advocacy Leadership Institute or virtual advocacy webinars like those hosted by ASPHO and ASTCT? Additionally, survey the patient-oriented advocacy organizations for the specific diseases you are interested in and ascertain how they work with health care professionals to advance their agenda. Volunteer to engage with these committees, ask to sit in on a meeting, champion a short-term agenda item, or draft a proposal for a project.
Getting involved may be as easy as emailing the chair of a committee or asking a mentor to make an introduction on your behalf. Social media outlets like Twitter can often serve as an easy way to decrease the activation energy of reaching out.
Recognize that health policy is complex and understanding the inner workings of and the endless acronyms in Washington will not be intuitive. However, by listening, engaging, and demonstrating that you’re energized and passionate, you will begin to form a bond with like-minded individuals and discover opportunities to get involved.
