Since the earliest days of the HIV epidemic, advances in HIV medicine have profoundly transformed the health care system itself, moving beyond the care of people with HIV (PWH). HIV medicine has shaped drug development, global health, health equity, innovations in preventive medicine, health research, and the management of chronic disease. It has changed how we deliver health care, how we conduct research, and how patients are treated by the health care system. These advances have been driven by the advocacy of PWH, HIV clinicians, and researchers, and have impacted how policy addresses global health equity, the utilization of data surveillance systems, how we conduct screening, harm reduction strategies, and address social determinants of health for other chronic diseases.
Through advocacy, and not merely by providing clinical care, HIV providers have championed health care change. The advances in HIV care have been driven by activists and advocates who have helped transform the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), changing policies involving who has access to clinical trials as well as speed of clinical trials. Advocacy has led to accelerating FDA investigational drug approval processes, as well as articulating the relationship between HIV and race, gender, sexual orientation, poverty, access to care and their relationships with health inequality.
Today, the need for HIV specialists to become advocates and activists has never been greater. The termination of HIV research grant funding, restrictions on programs targeting populations disproportionately affected by HIV, eliminating databases and data collection to monitor the health needs of racial and ethnic minorities and LGBTQ patients, the interruption of global clinical trials of investigational drugs for HIV prevention, reductions of funding for UNAIDS and global health initiatives, and threats to funding Medicaid all underscore the need for HIV specialists to become vocal on behalf of the patients under our care. Like HIV activists and advocates in the history of HIV care, clinicians should not only perceive our role as what we do in the exam room.
This article will highlight some of the history of HIV advocacy in our profession. It will offer suggestions for methods that care providers might utilize to strengthen their own roles as advocates for their patients and offer some examples of advocacy from my own career as an advocate for PWH.
The Beginning of HIV/AIDS Advocacy
Since the CDC first reported what was then a mysterious cluster of pneumocystis carinii (renamed pneumocystis jirovecii) pneumonia in five gay men with the first documented cases of AIDS, people who have been diagnosed with HIV/AIDS have been marginalized, stigmatized, feared, and subjected to moral judgement. For the first eight years of the Reagan presidency, PWH were neglected by government policymakers. It took four years and 5,000 deaths from AIDS before then President Ronald Reagan first mentioned AIDS at a press conference, in a speech that equated AIDS with immorality.
People with HIV/AIDS and their families demanded government intervention. They were critical of the indifference of the pharmaceutical industry to develop antiviral medications, as well as the lack of access to meaningful clinical trials and the lengthy time the FDA took to review and approve new drugs. Clinicians began publishing letters and commentaries in medical journals demanding more research funding. ACT-UP (AIDS Coalition to Unleash Power) became a highly visible and vocal advocacy organization, staging “die-ins,” large protests in front of the FDA in 1988 and organized a disruption of mass at St. Patrick’s cathedral in New York City protesting the Catholic Church’s stance on homosexuality and the use of condoms. When azidothymidine (AZT), a recycled cancer drug, was approved as the first antiviral targeting HIV, the extremely high cost of the medication led to protests in front of Wall Street in 1987 targeting pharmaceutical companies.
Providers as Advocates
From the beginning of the AIDS epidemic, health care providers became advocates for their patients, with many clinicians challenging the medical establishment and demanding reform. Some clinicians worked with ACT-UP and advocated for reforming clinical trials. Dr. Anthony (Tony) Fauci was the Director of the National Institutes of Allergy and Infectious Diseases and was leading AIDS research at the federal level. Criticized by advocates for the slow pace of the government response to the AIDS crisis, Dr. Fauci invited activists to the table, attended ACT-UP meetings, and acknowledged the legitimacy of their complaints. Clinical trials at that time had rigid criteria and excluded women, minorities, and people with advanced disease. Dr. Fauci worked to change the protocols and expand access to treatments. He invited activists to join NIH advisory boards and allowed them a voice in how clinical trials were designed. He became a bridge between HIV activists and the NIH. He worked to speed the clinical trial process, to open access to trials for PWH, and to accelerate the FDA approval process. Dr. Fauci’s collaboration with activists represented an evolution in public health and HIV/AIDS policy from the 1980s forward.
HIV Advocacy for Global Health
For several years after the first highly active antiretroviral therapy (ARV) became available and transformed the care of HIV patients in the United States (U.S.), policymakers believed that ARVs were too complex to be used successfully in impoverished countries. Dr. Paul Farmer and his Partners in Health disproved that belief through their work in Haiti. Dr. Farmer’s advocacy for the global health needs of PWH helped influence The Global Fund to Fight AIDS, Tuberculosis and Malaria, and PEPFAR (President’s Emergency Plan for AIDS Relief) that the U.S. government launched in 2003 to address the global HIV/AIDS epidemic in low- and middle-income countries. By testifying before Congress urging funding for HIV treatment, Dr. Farmer framed access to HIV treatment as a human rights issue.
Advocacy for LGBTQ Rights and Cultural Competency
HIV clinicians have been advocates for the rights of LGBTQ people, publishing studies on how discrimination, homophobia and transphobia in health care settings deter LGBTQ people from seeking health care. HIV clinicians have advocated for incorporating cultural competency programs in health care settings to educate health care staff about the health needs of LGBTQ people, the use of inclusive language, and the impact of implicit bias. Clinicians have promoted structural changes in the health care system to revise policies to ensure non-discriminatory practices and the creation of inclusive intake forms. They provided testimony opposing anti-LGBTQ laws, and advocated against HIV criminalization in LGBTQ communities.
Health Equity
HIV providers were among the first to integrate social determinants of health into HIV care. Patients treated by Ryan White-funded programs, which integrate assistance with housing, transportation, food insecurity, mental health, dental care, and substance use treatment, have better rates of viral suppression than non-Ryan White programs. The viral suppression rate of 90.6 percent, compared with the suppression rate of 65 percent of non-Ryan White programs exemplifies the importance of incorporating social determinants of health into clinical practice.
Racial and Ethnic Disparities
HIV clinicians have a long history of advocacy in addressing racial and ethnic disparities in health care. With studies showing that Black people and Hispanic/Latino people are more likely to have a delay in the diagnosis of HIV, HIV care providers have targeted interventions over many years to reach communities of color and get at-risk individuals tested for HIV and into treatment once diagnosed.
Undetectable Equals Untransmittable
HIV clinicians have been instrumental in disseminating the concept that HIV treatment equals HIV prevention, and the concept of U=U, or undetectable equals untransmittable.,19
HIV Prevention with PrEP
HIV clinicians have been at the forefront of advocacy for the use of pre-exposure prophylaxis (PrEP) to prevent HIV.20 Further advocacy for the prevention of sexually transmitted infections with post-exposure prophylaxis has been championed by HIV providers.21
Become an Advocate for Your Patients
Our patients with or at risk for HIV are often vulnerable because of stigma, poverty, homophobia, and systemic racism. As health care providers, we can often use our voices on behalf of our patients. Current changes in governmental policy are impacting:
- Racial and ethnic disparities in health care.
- Programs that serve LGBTQ people.
- Reductions or eliminations of funding for health care for low-income people through Proposed cuts to Medicaid and Social Security.
- Elimination or evisceration of programs that serve people who are unhoused.
- Food assistance and food banks.
- Elimination of data collection and programs that specifically address the unequal conditions of Black people and Latino/Hispanic people.
- And Interruptions and funding cuts for research.
How HIV Specialists Can Become Advocates
Advocacy can be for individual patients, for institutional change, or governmental policy changes. I will share a few examples of personal advocacy I have done on behalf of patients and the policy changes that were subsequently impacted.
In my early years of the HIV/AIDS epidemic, I had to advocate for my patients when other health care providers refused to treat them. Sometimes surgeons were reluctant to perform needed surgery for PWH. Many dentists refused to treat PWH, and even behavioral health clinicians displayed reluctance to see PWH. One patient of mine who had AIDS and struggled for years with injection drug use entered a drug treatment program. On day two of treatment, he phoned to say he was leaving the program because once the hospital saw his bottle of AZT, they confined him to eating meals in his room, required him to double bag paper plates used to serve his food, and denied him access to group therapy meetings. I contacted a legal aid attorney who presented herself to the program administrator and threatened legal action. That same day the hospital policy changed and my patient completed his program.
Legislative Testimony
Being an advocate often means submitting testimony to legislative committees that have oversight of issues under consideration by the legislature. Submitting written testimony to the committee who will be hearing public testimony is helpful, and even more so if you can testify in person during committee hearings. Usually, verbal testimony is time-limited to a couple of minutes, but if your testimony is compelling on how your patients may be impacted, you may be questioned by the committee members who seek more information that only you can provide. Always try to relate the topic to how it may impact their constituents. It is often helpful to point out that a legislative cut to health funding may lead to increased costs for more acute illness and hospitalizations.
Meeting with members of the U.S. Congress can be important. You may be successful in arranging a face-to-face meeting with your representative or senator, or more likely with the staff. Attending town hall meetings can be impactful, even if the representative does not attend. There has been significant media coverage of Town Hall meetings in districts where congressional representatives did not show up to answer to the concerns of their constituents, and this coverage is important.
Op-Eds
Op-eds are an important way to educate the public and policy makers on an issue that you, as a health care provider, have intimate knowledge of and that the public is unaware of. Writing an op-ed on an impactful issue and submitting it for publication to a newspaper can be extremely helpful. Be aware that op-eds that you submit become exclusive to the publication you are submitting to, and most publications will not consider your piece if it is pending publication or review elsewhere. You can usually find the op-ed requirements for your newspaper online, which lets you know word counts (typically about 750 words). My personal experience having had many opinion pieces published over the years is to email the opinion page editor or editor-in-chief regarding a topic I consider important and timely to see if there is interest. Many newspapers will have you email the article to an address provided in their guidelines. Follow up your submission to make sure that it was received and whether there is interest in publishing it. If not, submit it elsewhere.
Meeting with Government Administrators or Elected Officials
Sometimes advocacy requires getting colleagues to collaborate on an important issue. For example, in 2014, when the first hepatitis C (HCV) direct acting agents (DAA) were being considered by the pharmacy and therapeutics committee of the Connecticut Medicaid program, our testimony on the importance of making these agents available supported the committee vote of approval. However, once the DAAs were approved, Connecticut Medicaid, like most states, put onerous restrictions on their use in an effort to contain costs. Only hepatologists, gastroenterologists, or board-certified infectious disease physicians would be allowed to prescribe these DAAs, and only for patients with significant liver fibrosis. After meeting with the Medicaid Chief Medical Officer, along with a hepatologist and internal medicine physician who was also an HIV specialist, we made the case that HIV specialists should be included in the special group allowed to treat HCV patients. We criticized the restriction of these medications only to persons with advanced liver disease, citing the deteriorating health and increased costs incurred by allowing patients with HCV to develop more liver fibrosis or cirrhosis. We were asked to draft our ideal policy that we felt appropriate, and a few months later, Connecticut became the first state Medicaid program to allow all persons with HCV, regardless of the stage of their liver disease, to be treated and by any licensed prescriber.
Other Important Ways
There have been many large rallies and protests throughout the nation over the past several months. Organizations like 50501 Movement, Indivisible, and Coalition Partners have organized large rallies throughout the country. Attending a rally can be empowering. Reach out to the local organizer to see if you might become a speaker. You can also offer to be a resource as a health care provider to attend to any medical problems that may arise. I have provided medical support for a number of rallies, and usually just a first aid kit, blood pressure cuff, and stethoscope are all you need to bring.
No Kings coordinated a rally this past June 14 that in which an estimated five million people in 21 cities and towns participated. People from small towns and big cities, red states and blue states, old folks and young folks all turned out to oppose policies that threaten the health and well-being of people everywhere. Sign up with Indivisible.org to be notified of ways that that you can get involved in your community. Lastly, Defendpublichealth.org is an all-volunteer network of public health researchers, health care workers, advocates, and allies fighting to protect the health of all from the attacks on proven, science-based health policies.
It’s Time to Get Involved!
Recent funding and policy changes undermine the health of our patients and our ability to care for them. In the long tradition of activism and advocacy that has so rapidly advanced the care for PWH, remaining silent should not be an option. Defending health equity, speaking out for the health needs of people of color, LGBTQ people, and the immigrant communities, and demanding access to care for people who rely on Medicaid and Social Security is needed now more than at any time since the start of the HIV epidemic. We are firsthand witnesses to the direct impact these recent government policy changes have on our patients. We have influence and credibility, and advocacy is an ethical extension of clinical care. As Desmond Tutu said, “If you are neutral in situations of injustice, you have chosen the side of the oppressor.”22 Advocacy isn’t an optional part of being an HIV specialist; it is a moral imperative. Our history has shown that it works.
