When Advocacy Gets Blurred: Understanding True Dialysis Advocacy vs. Brand Ambassadorship
Advocacy is one of the most powerful tools a patient community can wield. Yet, when it comes to dialysis and kidney disease advocacy, a dangerous blurring of lines must be addressed. Advocacy should empower, inspire, and drive systemic change. But what happens when advocacy is mixed with brand ambassadorship and consulting? This article will explore this confusion in depth, clarify the differences between these roles, and argue for the necessity of patient-driven advocacy that is free from corporate influence.
The Reality of Industry Funding in Dialysis Advocacy
Why Industry Influence Matters
The core issue in dialysis advocacy is that many patient organizations are funded by the same industry players responsible for perpetuating systemic problems within the treatment process. The dialysis industry is dominated by two corporations: Fresenius and DaVita, which collectively control a significant portion of the market. Their influence extends beyond treatment centers and policies; it permeates patient advocacy organizations like the National Kidney Foundation (NKF) and Dialysis Patient Citizens (DPC).
When organizations receive funding from industry giants, their ability to push for meaningful change becomes compromised. The conflict of interest raises a pivotal question: How can an organization effectively advocate for patient-centered reform when it is financially tethered to the very industry that needs to be held accountable?
The funding dynamic inherently shifts the narrative. When corporations steer advocacy, the agenda often prioritizes profit over patients. Fresenius and DaVita, like all businesses, are profit-oriented. While they may fund “advocacy” efforts, these efforts may lean towards brand promotion and maintaining the status quo rather than pushing for comprehensive, patient-centered reforms.
How Industry-Driven Advocacy Fails Patients
The dangers of industry-influenced advocacy are multifaceted. For one, the messaging from organizations like NKF and DPC often aligns more closely with industry objectives than with those of the patients they claim to represent. Such organizations might provide support resources and educational materials but rarely challenge the policies and practices of the corporations funding them.
True advocacy demands a critical approach to systemic issues. In the case of dialysis care, that means addressing barriers to home dialysis, unequal access to resources, inadequate patient education, and the monopolistic practices that hinder patient choice. When organizations are funded by dialysis companies, their advocacy often lacks the critical edge necessary to address these systemic problems.
Understanding the Distinction: Advocacy vs. Brand Ambassadorship vs. Consulting
One of the most significant issues in dialysis care is the misunderstanding of what constitutes true advocacy. Brand ambassadorship, consulting, and advocacy are three distinct roles, and conflating them dilutes the work and misleads patients, caregivers, and families about what is genuinely being done to address systemic issues.
Advocacy: The Need for Systemic Change
Advocacy, at its core, is about creating meaningful change. It requires challenging flawed systems, holding institutions accountable, and fighting for better policies and standards of care. When advocating for dialysis care, this means addressing issues like the lack of access to quality care, insufficient home dialysis options, and the lack of transparency in treatment options and outcomes.
Advocacy aims to expose and rectify systemic failures. This includes but is not limited to:
Addressing policy issues: Advocates fight for reforms in healthcare policy that improve patient access and care quality.
Challenging industry dominance: In the dialysis industry, this means questioning the monopoly of companies like Fresenius and DaVita and advocating for increased competition and patient choice.
Promoting patient-centered care: Advocacy involves pushing for a model of care that centers the needs and experiences of patients, not corporate profit margins.
True advocacy requires independence. It must be free from corporate influence to avoid bias and promote policies and practices that genuinely serve the patient community.
Brand Ambassadorship: Promotion Over Change
Brand ambassadorship, on the other hand, is about promotion and brand image. Brand ambassadors share their personal experiences to uplift a product or company. For example, promoting a particular dialysis machine, home dialysis option, or clinic is considered brand ambassadorship. While brand ambassadors may inspire others and spread awareness, they often fail to address the systemic issues that impede better care for all patients.
A critical problem arises when brand ambassadorship is misrepresented as advocacy. When someone promotes a company’s product under the guise of advocating for patient needs, it clouds the true mission of advocacy. Rather than challenging the dialysis industry to improve care, brand ambassadors may unintentionally reinforce the status quo by promoting a particular brand's approach as a solution without addressing broader systemic issues.
For example, supporting the "No Place Like Home" campaign for home dialysis is brand ambassadorship if it only promotes one company's approach to home dialysis without addressing broader issues like access barriers, training, and support for all patients interested in home treatment, regardless of brand.
Consulting & Coaching: Guidance Within the System
Consultants and coaches play a vital role in guiding patients and caregivers through the complexities of living with kidney disease and navigating the dialysis process. They help individuals understand their treatment options, manage their health, and access support systems. However, while consulting and coaching provide invaluable support on an individual level, they do not necessarily aim to address or change the broader systemic barriers that patients face.
This form of guidance helps patients thrive within the existing system, but it does not seek to reform that system. Therefore, consulting and coaching should not be mistaken for advocacy. True advocacy involves fighting for systemic changes that will benefit the entire patient population, not just providing personalized support within the current framework.
Why the Distinction Matters
Understanding these distinctions is crucial for several reasons:
Clear Messaging: When advocacy, ambassadorship, and consulting are conflated, the message becomes muddled. Patients and care partners may mistakenly believe that promoting a brand or providing individualized guidance equates to pushing for industry-wide reform.
Empowering True Change: Advocacy is about making lasting changes that benefit all dialysis patients. When efforts are miscategorized, true advocacy is pushed aside, and the drive for reform loses momentum.
Fighting Conflicts of Interest: Patients and their families need to know who is driving the agenda behind advocacy efforts. If a patient organization is funded by industry, this creates a conflict of interest that can skew the priorities and undermine efforts for real change.
The Need for Grassroots, Patient-Driven Advocacy
Why Corporate-Driven Advocacy Falls Short
When advocacy efforts are funded by the dialysis industry, the underlying goal often shifts away from empowering patients to challenging the system. The advocacy that arises from corporate sponsorship is inherently limited, focusing on incremental changes that do not disrupt the existing business model. This limits the potential for substantial reform and leaves patients to navigate a system that prioritizes profit over care.
For example, a corporate-funded organization might campaign for better patient education on dialysis options. While this is undoubtedly beneficial, the deeper issues—such as the limited availability of home dialysis training, disparities in treatment access, and the lack of diverse care options—are rarely addressed because they threaten the industry's profit margins.
Patient-Led Advocacy: The Real Path to Change
Grassroots, patient-driven advocacy is essential for real reform. Advocacy must come from the lived experiences of patients, caregivers, and allies, free from corporate influence. By remaining independent, patient advocates can challenge policies and practices without fearing repercussions from industry sponsors.
Patient-driven advocacy should aim to:
Build a united front: Patients, caregivers, and advocates must work together to demand changes that benefit the entire community. A united front can push for systemic reforms, such as better access to home dialysis and the dismantling of monopolistic practices.
Empower all patients: Advocacy should not just be about sharing individual success stories. It should empower all patients to demand better care, access to diverse treatment options, and a voice in shaping healthcare policies.
Confront systemic barriers: True advocacy must confront the root causes of inadequate care, such as restrictive policies, limited access to resources, and the disproportionate influence of corporate players in the dialysis industry.
Advocacy vs. Ambassadorship: Real-Life Implications and Misconceptions
The Danger of Misleading Advocacy
The blurring of advocacy and ambassadorship has real-world consequences. When individuals or organizations promote a brand while claiming to advocate for patients, it creates confusion and detracts from the broader mission of systemic reform. Patients may believe that by using a specific product or treatment approach, they are participating in advocacy. However, true advocacy is not about brand loyalty—it’s about challenging and changing the system to benefit all patients.
Celebrating Life-Sustaining Treatments vs. Pushing for Life-Thriving Solutions
Too often, brand ambassadorship celebrates life-sustaining treatments under the guise of advocacy, without pushing for life-thriving solutions. For instance, while promoting the benefits of home dialysis is positive, it does not address the lack of access many patients face or the systemic barriers that limit their options.
A key component of advocacy is not just accepting the status quo but fighting for improvements that allow patients to thrive, not just survive. This includes better training and support for home dialysis, equitable access to all forms of treatment, and policies that put patient needs above corporate profits.
Reclaiming Advocacy: For Patients, By Patients
How Patients Can Reclaim Advocacy
To reclaim advocacy from corporate interests, patients and their allies must take ownership of the movement. This involves:
Building independent, grassroots movements: Patients must come together to form independent advocacy groups that are free from corporate influence. These movements should be focused on patient needs, systemic reform, and transparency.
Educating on the difference between advocacy and ambassadorship: Patients and their families need to understand that advocacy is about fighting for systemic change, not promoting a brand or sharing personal success stories.
Demanding transparency and accountability: When supporting an advocacy organization, patients should ask critical questions about funding sources, priorities, and the organization's track record in challenging industry practices.
Advocacy in Action: Pushing for Patient-Centered Reforms
Real advocacy involves pushing for policies and practices that improve the lives of all dialysis patients. Key areas of focus might include:
Expanding access to home dialysis: Advocates should fight for better training, support, and resources for patients who wish to pursue home dialysis.
Ensuring equitable access to care: Advocacy efforts should address disparities in care access, ensuring that all patients have the opportunity to receive high-quality treatment regardless of socioeconomic status, geographic location, or other barriers.
Challenging monopolistic practices: Advocates must question the dominance of major dialysis corporations and push for increased competition and patient choice within the industry.
A Call to Action for True Advocacy
True advocacy is about challenging systems, empowering patients, and driving meaningful reform. It is not about promoting a brand, offering individual guidance, or working within the limitations of the existing system. For real change to occur in the dialysis industry, patients must reclaim advocacy from corporate interests and build grassroots movements focused on patient-centered reform. By understanding the difference between advocacy, ambassadorship, and consulting, the dialysis community can unite to demand a healthcare system that truly serves its needs.
Now is the time to refocus the narrative—advocacy is for patients, by patients. By confronting systemic issues head-on and pushing for change, we can ensure that the needs of the dialysis community are no longer overshadowed by corporate interests. Let’s reclaim the true meaning of advocacy and work together to create a future where every dialysis patient can not only survive but thrive.
