By: Brandon M. Macsata, ADAP Advocacy CEO, Ranier Simons, ADAP Blog Guest Contributor, and Kalvin Pugh, ADAP Advocacy 340B Patient Advisory Committee Member
Healthcare policy is a complex issue, especially in the United States, with its fragmented system. Numerous stakeholders compete to influence the healthcare ecosystem — all with financial stakes in the game — including government agencies, pharmaceutical manufacturers, hospitals, practitioners, pharmacy benefits managers, insurance companies, pharmacies, and patients. Some of these stakeholders embrace the patient experience and encourage their involvement in the debate because they recognize that it is they, as patients, who are at the center of the healthcare ecosystem. Sadly, others have contempt for patient involvement. Their contempt leads to patients being attacked for their views, sometimes even to character assassinations, because their views align with pharmaceutical industry interests.
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| Photo Source: Bioethics Today |
The relationship between patient advocacy and industry has and continues to evolve. For example, decades ago, at the early stages of the HIV epidemic, the relationship was adversarial. People living with HIV/AIDS (PLWHA) felt targeted and attacked by the medical establishment. Fear and stigma generated from many unknowns left PLWHA marginalized and manipulated by science and society, effectuating institutional disempowerment.
As such, the Denver Principles came to fruition. In 1983, at the Fifth Annual National Lesbian and Gay Health Conference held in Denver, Colorado, a group of people came together and drafted a manifesto (Rodriguez, 2023). The Denver Principles manifesto was a declaration of dignity and a statement reclaiming the rights to be treated humanely and non-paternalistically regarding HIV related medical treatment. Most importantly, the Denver Principles established collective PLWHA advocacy, creating a voice that the general public and medical establishment would have to listen to.
The Denver Principles manifesto consisted of four sections: recommendations for healthcare professionals, recommendations for people with AIDS, recommendations for all people, and the rights of people with AIDS (U.S. PLHIV Caucus, n.d.). One of the poignant recommendations for health care professionals was to “Treat People with AIDS as whole people and address psychosocial issues as well as biophysical ones” (U.S. PLHIV Caucus, n.d.). One of the principles for PLWHA was to “Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge” (U.S. PLHIV Caucus, n.d.). A notable right of PLWHA stated was the right “To quality medical treatment and quality social service provision without discrimination of any form, including sexual orientation, gender, diagnosis, economic status or race” (U.S. PLHIV Caucus, n.d.).
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Although the Denver Principles were birthed through an HIV lens, the conference where they were presented contained many varied panels, including holistic medicine and alcohol and substance abuse (Rodgriguez, 2023). Many advocacy populations have used the Denver Principles as a blueprint, which is evidence of the need for patient advocacy in multiple spaces. Advocating for beneficial healthcare policy, insurance reform, disease decriminalization laws, and even medication access requires discourse with and assistance from industry. Patients need industry to effectively comprehend and act upon their needs, just as industry needs patients to survive from a business perspective, as well as to engage positively as part of the overall social compact for a healthy, functioning dynamic. One example is that the pharmaceutical industry needs to create effective medications and help ensure patients have access to the drugs because dead patients don’t take medication.
Moreover, effective financial and other resource provision partnerships with industry allow advocacy groups to fight for patients in more direct ways than industry can. Industry wants patient populations to thrive just as patients desire the infrastructure to enable them to live their best lives. When a patient's needs align with industry wants, industry financial backing does not turn patients into marketing lobbying slaves. There is no patient benefit in advocating or pushing an agenda that is not in the best interests of patient health and overall well-being. Patients are independent thinkers and are not manipulated by corporate malfeasance. Many advocacy groups that receive financial backing forthrightly communicate to their sponsors that they will never advocate for something that contradicts their beliefs, even if it may be beneficial to the corporate bottom line.
When critics of the drug manufacturers, or even fellow advocates, attempt to denigrate the contributions of individuals or organizations that align themselves with industry partners, it is not the insult one may think. It reflects the other party's lack of imagination for what valuable collaborative partnerships can be. Other thought-leaders express an enlightened view, evidenced by extensive research done on the patient experience with industry, thereby demonstrating the mutually beneficial relationship.
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Negatively characterizing patient advocacy for “having industry ties” also demonstrates a vile attitude that patients aren’t independent-minded, well-equipped with critical thinking skills. Instead, their “gotcha” attitudes are deeply rooted in paternalistic ableism. This line of thinking, recently on display by a reporter for a faux digital “news” outlet on all things 340B-related, often leads to character assassinations of patients living with severe chronic health conditions, sometimes even life-threatening ones, for expressing their opinions. It truly matters not if these patient advocates or patient advocacy organizations accept financial sponsorships from drug manufacturers; simply agreeing with industry, in their paternalistic ableism lens, disqualifies them from expressing those opinions.
In reality, patients are educated and savvy enough to come to their own conclusions about what is best for their healthcare. Equally valid, patients come to different conclusions without being told what to think or accepting a financial sponsorship.
It may be understandable from some in the HIV space who carry with them the trauma of what happened in the 1980s, or what appears to be slow responses and delayed medication options. But today is not 1985. It is 2025, where we all face uphill uncertainty, and it’s important to reframe our thinking when the truth is that patients and industry can, and do, share common goals.
Attacking patients is paternal at best, and demeaning at worst. When entities attack patient advocacy groups with malicious intent, it is evidence that the motivations of those entities are not patient-focused. It is deliberately irresponsible when individuals or entities slander the work of effective patient advocacy groups by using feeble allegations of insignificant operational characteristics to create a narrative of impropriety. Such actions raise questions about the motivations and funding of entities engaged in this behavior.
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| Photo Source: ABC News - Australia |
The landscape of healthcare in the United States often leaves patients feeling like helpless pawns devoured by the cogs of the machinery of a complex system. The avenues for patients to fight for themselves continue to evolve. Patient advocacy encompasses a range of efforts, from individual initiatives to partnerships and community groups. Effective advocacy requires resources such as networking connections, access to subject matter experts, education, communications, data analysis, travel, and more. These endeavors often require financial resources as well. At times, health industry entities partner with patient advocacy groups, providing the necessary funding to enable patients to advocate for decisions that affect their lives, ensuring they are made with a patient-focused lens.
Industry money does not render patient advocacy tainted or disingenuous. Often, patient goals align with industry goals in a manner like that of patient-provider alignment. Unfortunately, entities that do not have patient well-being at the forefront of their motivations often deliberately conflate industry funding with manipulation, portraying ‘patient advocacy as industry shill’ as a misguided narrative. Simply put, they’re wrong!
[1] Rodriguez, M. (2023, July 5). Remembering the Denver Principles, 40 years later. Retrieved from https://www.thebody.com/article/hiv-denver-principles-40-years-later
[2] U.S. PLHIV Caucus. (n.d.). The Denver Principles (1983). Retrieved from https://www.hivcaucus.org/resource-links/the-denver-principles-1983
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.
