Paternalistic Ableism Voices Are A Growing Threat to Silence Patient Advocates

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.

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.).

Photo Source: i-base

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.

Photo Source: LinkedIn | Matt Toresco

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.

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.   

Why Is the 340B Drug Pricing Program the Next ‘Too Big to Fail’

Read the full policy paper, “Is the 340B Drug Pricing Program the Next ‘Too Big to Fail’?”

By: Brandon M. Macsata, CEO, ADAP Advocacy

The 340B Drug Pricing Program sounds wonky and complex, and most patients probably hear the program's name and think, “Oh, it doesn’t even apply to me or my care.” It is wonky; after all, it’s named after Section 340B of the Public Health Services Act of 1992. And even the most well-versed policy expert would admit the program is indeed complex. But rather than trying to explain it in words, click here to watch an amazingly straightforward patient education video produced by the Community Access National Network (CANN). The bottom line is this wonky, complex program has EVERYTHING to do with patient care, and it is highly likely it impacts the care of most of the folks who read this blog post. And here’s why the 340B Drug Pricing Program is the next ‘Too Big to Fail.’

Photo Source: ADAP Advocacy

Today, patients living with HIV can successfully access highly effective therapies to manage the disease and achieve undetectable status, thus making a robust 340B Program essential. Unfortunately, that concept has warped into putting providers before patients. Originally designed to help poor patients access affordable healthcare, it has grown into a $66 billion program, largely benefiting healthcare providers. These healthcare providers' CEOs have benefitted abundantly, too, as ADAP Advocacy noted in its 2024 report and its 2025 supplemental report. Ironically, charity care – which is basically “free” healthcare hospitals extend to patients who otherwise cannot afford their care – has declined. So much for helping poor patients, right?

To make matters worse, a few extremely powerful special interest groups and their high-powered inside-the-beltway Washington lobbyists have successfully created a reform denialism narrative. That narrative is a fallacy. The chief antagonist of reforming the program to serve patients better is the American Hospital Association (AHA). Isn’t it ironic that the AHA fights any effort to reform the program that would result in its hospital members having actually pony up charity care for marginalized communities? Sadly, patient advocacy groups see through this smoke and mirrors by the big hospital systems. 

Pharmaceutical manufacturers—who fund the 340B Program via drug rebates—are pushing reforms to NOT “gut” the program but rather ensure their rebates are going to the intended recipients: patients! Industry-backed reforms are all driven by asking for more accountability and transparency on how their rebates are being spent. What could be more “pro-patient” than asking that rebates designed to help patients actually help patients? Novel idea, right?

Photo Source: Live | Viewpoint

The 340B Program’s reform denialists are scared, evidenced by their lobbyists contacting patient advocacy organizations and all but saying they're being duped by industry because they’re not intelligent enough to know what is best for them. Insulting, right?

The reality is that patients, patient advocacy organizations, and industry can and often do share values on public health and the delivery of healthcare services. The 340B Program is one such example. The program keeps exponentially growing, year after year, and yet medical debt is simultaneously exploding. The program is growing but failing to meet the law's legislative intent, which is helping patients. That is why it begs the question: Is the 340B Drug Pricing Program the Next ‘Too Big to Fail’?

Read the full policy paper, “Is the 340B Drug Pricing Program the Next ‘Too Big to Fail’?”

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.

What’s Needed to Fix a Vital Drug Discount Program

By: Brandon M. Macsata, CEO, ADAP Advocacy Association & Guy Anthony, Founder & President, Black, Gifted & Whole Foundation

****Reprinted with permission from POZ****

Thirty years ago, when Congress passed the Public Health Service Act, no one could have imagined that section 340B of the law would become the lightning rod that it is today. The little-known provision created a program to help America’s safety net health care providers bring affordable care and discounted medicines to vulnerable, low-income patients. 

Photo Source: POZ | iStock

The initial concept was simple and effective. Pharmaceutical manufacturers provide steeply discounted drugs to hospitals, providers, and clinics that serve uninsured and underinsured patients living with HIV/AIDS, and safety net providers dedicated to reaching the most vulnerable and underserved communities. The support that the 340B program provided to Ryan White Clinics and hemophilia treatment centers was critical in addressing the HIV/AIDS crisis through the 1990s. Today, when people living with HIV can successfully manage the disease with highly effective therapies, it remains essential.

But the program and the true safety-net clinics that rely on it is teetering on the brink of collapse due to statutory silence in key areas. It turns out that the attraction of using significant savings on medicines to boost profit margins has been irresistible to some for-profit entities, at the expense of the safety net. The for-profit entities dipping into the 340B program’s discounted prescription drugs now include, among others, well-resourced hospitals in wealthier zip codes, pharmacy benefit managers (PBMs), and a vast network of contracted pharmacies (also largely located in wealthier zip codes). The numbers on this point speak volumes: 340B discounted drug purchases amounted to $38 billion in 2020, more than 15 times what it was in 2005. As Congressman Bucshon noted, wouldn’t you expect a 15x increase in the amount of charity care that is available in this country?

The realities of how the 340B program is currently implemented is a clear indication that stronger accountability and transparency are urgently needed so that the program can begin to work as intended, and patients don’t continue to get left behind. Abuses of the program have been exhaustively documented by government watchdogs and others including analysis by an advocacy group for cancer patients that found that hospitals are overcharging patients for a common breast cancer drug. The research found that hospitals pay a discounted price of just over $43,000 for a year’s supply of the drug,   while charging patients over $217,000 for the same medicine, reaping a profit of more than $173,000 from just one patient, thanks to the program designed to help the nation’s poorest citizens. 

Patients are bearing serious consequences from the lack of clarity in the 340B program and the loss of critical resources safety-net providers depend on. As organizations that provide essential services and education for the HIV/AIDS community, we know this program must be better defined if it is to work as intended. We also know that Congress has a central role to play in making that happen. 

We can only achieve changes that work in the interest of the safety net if the diverse 340B community works together, rather than at odds with itself. That’s where the newly-formed Alliance to Save America’s 340B Program (ASAP 340B) comes into play. The Alliance’s 10 policy principles provide a critical foundation for Washington decision makers to change the trajectory of the program and improve administration and oversight at the federal level. The Principles are designed to ensure greater transparency and accountability; determine a “patient definition” with with stronger safeguards; establish clear criteria for 340B contract pharmacy arrangements to improve access; prevent middlemen and for-profit entities from profiting off the 340B program; and update and strengthen 340B hospital eligibility requirements.

Photo Source: ASAP 340B

Inaction will – not could but will – very soon have serious ramifications on the care that our community receives. Yet despite the diverse organizations that have come to the table to bring about change, not everyone agrees. A cacophony of voices – including some from the HIV community – has expressed concern or displeasure with the idea of bringing ideas to the table that would enhance transparency, accountability, and most importantly, deliver long-time certainty to the program. But notably, no comprehensive, viable alternatives have been offered. 

Congress and the administration have made it clear that making prescription drugs more affordable should be a major public health priority. Fixing the 340B program can move the needle on that goal, bringing health care affordability to our nation’s most underserved patients and communities.

This opinion piece was also published on June 7th in POZ.

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.

MAT Provides Patients with More Transparency Around Medicine Costs

By: Emma Berry, Advocacy & Strategic Alliances, PhRMA

*** Reprinted with permission from the Pharmaceutical Research and Manufacturers of America® ***

Patients have enough to worry about right now. Figuring out how to pay for prescriptions shouldn’t be another stressor. For decades, PhRMA has been committed to advocating for policies that help patients access the medicines they need, and now America’s biopharmaceutical companies are also individually expanding their assistance programs to help more patients during these uncertain times. The Medicine Assistance Tool (MAT) can match patients with resources and cost-sharing programs that may help lower out-of-pocket costs, whether or not you have insurance.

MAT is a free-to-use search engine designed to help patients, caregivers and health care providers learn more about the resources available through the various biopharmaceutical industry programs. While MAT is not its own patient assistance program, it does contain information on many of the patient assistance resources that the biopharmaceutical industry offers, including 900+ programs offered by PhRMA’s members companies to help qualifying patients, such as those who need financial support due to their lack of insurance or inadequate prescription medicine coverage.

Photo Source: PhRMA

Here is how you can use MAT to learn more about resources and cost-sharing assistance programs:

• Go to MAT.org and select whether you are a patient, loved one or health care professional
• Enter the name of the medicines you, your loved one or your patient are prescribed
• Enter your personal information or that of your loved one or patient (i.e. age, location, income, insurance coverage and household size)*

After following these steps, MAT will produce search results that identify programs and resources that might be able to help you.

Additionally, the MAT site also includes links to the websites referenced in company television advertising, where information about the costs of the prescription medicines is available. These websites may include information such as the list price of the medicine, out-of-pocket costs and other context about the potential costs of the medicine. The information provided by MAT can help people learn more about the costs surrounding their medicines, as well as provide resources to help them better navigate their insurance coverage. 

*Disclaimer: Please note any information provided is not saved and is kept strictly confidential and will not be used to for any purpose other than providing the search results.

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. 

Patients Ask FDA

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Last year while attending the Biotechnology Innovation Organization's ("BIO") Patient & Health Advocacy Summit in Washington, DC, an important, but little known patient resource was shared during one of the panel discussions. It involves the U.S. Food & Drug Administration ("FDA") and the ability of patients to and their caregivers ask questions to FDA or to request a meeting.

The Patients Ask FDA is an online portal located at https://www.fda.gov/patients/learn-about-fda-patient-engagement/patients-ask-fda.

This innovative, patient-center resource makes available information about ongoing initiatives on how to engage with the FDA, testimonials from FDA patient representatives, as well as how to apply to the FDA Patient Representative Program. It also includes current FDA Patient Listening Sessions, which are in partnership with the National Organization for Rare Disorders ("NORD").

The ADAP Advocacy Association places a premium on patient engagement and we encourages to use this important tool afforded to them by the FDA.

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.

Finding the right doctor can be challenging—this new service can help

By: Carine Carmy, Head of Marketing, Amino

When you need to find a doctor, how do you find the right one? If you have health insurance, you might start with your insurance plan, and check which doctors are in-network. You might look at online resources, and Google which doctors are located nearby. You might look at Yelp or other review sites to see what people say about the doctors (and if you’re lucky, those reviews might be relevant to your condition or to the procedure you need). If you have a friend or family member with your condition, or know someone with a medical background, you might be able to ask one of them for a recommendation.

Even if you went through all that to find a doctor, would you feel confident that you made the right choice? With all the resources available for health care decision-making, you might still be missing a crucial piece of information: how much experience does this doctor have with what you need?

Research shows that when it comes to doctors, experience matters—not necessarily years of experience practicing medicine, but rather the volume of patients a doctor has treated with your condition. That’s the philosophy behind Amino, a free website that launched in October 2015, which lets you find and book doctors and estimate health care costs for medical procedures. With Amino, you can get matched with a doctor based on his or her experience with the condition you have or the treatment you need. Amino measures a doctor’s experience by analyzing data from health insurance claims (the records doctors send to insurance companies to get paid for what they do) to uncover what they focus on and how they treat their patients.

Below, you can use the embeddable Amino search to see how the product works and find doctors who have experience with HIV-related care and treatment—you can also change any of the search filters to look up other conditions or procedures (Amino has over 800 topics to choose from).

Here are five quick guidelines for using Amino:

1. If you’re looking for doctors who have experience with HIV-related care and treatment, you would first enter in some information about yourself or the patient you’re taking care of.

Photo Source: Amino

2. Then, enter your location and insurance (if you have it—it’s optional to enter in your insurance).

Photo Source: Amino

3. You’ll get a list of doctors who have the most experience with testing people like you—of the same age and sex, and with the same insurance—for HIV-infection. Amino will search its database of 893,000 doctors to provide this list. You might see a variety of doctors in your match list, and depending on your preferences you can filter by a doctor's specialty.

Photo Source: Amino

4. When you click on the doctor’s profile, you can see what they treat patients for and which services, tests, and procedures they provide, along with other important information like their credentials.

Photo Source: Amino

5. From there, you can book an appointment via email or text message at no cost to you.

Amino also offers cost estimates for 49 medical services and procedures for dermatology, diagnostics, men’s health, orthopedics, preventative care, surgeries, and women’s health—and you can view those cost estimates for individual doctors as well as research costs in your area and insurance network.

Health care is not one-size-fits-all—what’s right for you can change depending on your health and your preferences. Your search for a doctor should be customized to your condition or the procedure you need, and you should be able to see as much information about a doctor as possible before making the time commitment to see them in-person.

Using Amino, you get a data-driven and personalized experience, which can help you choose care with confidence. If you have any feedback or questions, please don’t hesitate to reach out to the team at feedback@amino.com.


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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.