The Only Thing That Stays The Same… Welcome to 2026

I want to personally thank those of you who joined me in finishing the sentence that is this week’s blog title.

For CANN and many of our colleagues and partners, 2025 was indeed the year of significant change. From government institutions being shook to their core—a near unprecedented challenge to our societal agreements on “fact”—to our dedication to issues and community through education and growth, who we are today is not who we were on January 1, 2025. And, despite what reflection of harder and more stressful moments might tell us, that change is not necessarily a bad thing.

2026 greets CANN, as an organization, with our own evolution: even as we seek to evolve the policy landscape and our partners to be patient-focused in an ever-increasingly tangible way.

CANN’s growth means permanent work for some of our contractors, allowing for incredible investments in three astounding individuals and their continued development as trend setters and thought leaders. Along with conversion to employee status, Ranier and Kalvin’s roles are expanding to leverage their state-based successes and networks to include federal policy education and advocacy. Travis’s expanded position will find him focused on ensuring CANN’s image is uniform, polished, and properly presented to the world at large. Our friends at Perry Communications are continuing as collaborators in shaping the advocacy ecosystem as patient-driven without fear or favor to the influences impacting access to care.

Our community investments are also growing and evolving in exciting ways. Later this year, CANN will share details on our re-vamped Community Roundtable events and how the “PDAB Summit” will transform into a broader conversation on patient access, drug pricing, and necessary reform and regulation. This discourse will offer real solutions that serve patients rather than simply catering to the next round of shady middlemen or market manipulating investors.

Growth and change is never all easy. The nature of evolution often demands the…unfamiliar.

After twelve years of service to CANN, Brandon Macsata will be moving on to focus on his work with ADAP Advocacy and PlusInc. After coming on to assist CANN’s founder, Bill Arnold, with restructuring the organization in 2014, Brandon continued to shepherd the organization through Bill’s death, including recommending me to the Board as successor CEO. Brandon’s contributions to CANN are immeasurable and we’re grateful for his care in helping us get to here.

This year is CANN’s 30th anniversary and much like any person turning thirty years old, we’ve been steadily evaluating our role, our knowledge, and our power to positively effect change. In 2025, we issued four $10,000, low-barrier advocacy grants to state-based and national partner organizations working on our shared issues from different perspectives. These organizations, Lupus Colorado, Aging and HIV Institute, Pharmacists United for Truth and Transparency, and Epilepsy Alliance of Louisiana, share our mission to define the issues impacting patient access to care across all health conditions and regardless of a patient’s socio-economic status, race, sex or gender, religion, geography, or their health history. We learned from these organizations about services they offer, treatment development pipelines, perspectives on navigating care coverage across programs, challenges in keeping local pharmacy doors open, and how providers, even in schools, can refuse to administer life-saving medication to a child experiencing a seizure simply because they are uncomfortable with the medication determined to be the standard of care. We shared our perspectives on messaging and leveraged our experience in HIV exceptionalism to navigate policy change and demand equitable care for our shared communities.

Because the reality is that HIV is losing its exceptional nature in the policy realm. While our programs remain alive—and, frankly, as of yet still funded—our support systems and our integration into broader, more generalized care as a manner of ensuring actual access for people living with HIV (those systems and changes for which we’ve advocated), are under threat by short-sighted, single-issue discussions. Advocacy organizations who have collected money over the years without innovation or growth will continue to labor without producing results and at the expense of true change-makers. Those who expect to proceed according to their own status quo, mired in bureaucracy, the successes of the past, and without authentic coalition-building will atrophy. Again, that’s authentic coalition-building: as I’ve shared over the years, “we must find friends”. And I don’t mean transactional friends (i.e., “If you sign this letter, I’ll sign yours”), but rather real relationships built in a slower manner that develops attachment without expectation of specific action, and instead deep enough care to show up when a call is made.

This goes beyond our community partners. Our industry partners are facing much the same conversation about the therapeutic areas they invest in and their alliances with advocates. What does it mean to be more than funders? What does it look like to fundamentally transform the patient advocacy ecosystem through stabilizing investments? What does it mean to support incubator models of advocacy? How does this impact or otherwise become integrated into a company’s business model? The answers to these questions are not static and they are far beyond any quarterly stockholder assessment, and our partners know this.

Advocates, for our parts, must be responsive to a rapidly-changing environment where those most confident in their proposed “solutions” are only having half the conversation on a single-issue within a larger web of issues, networked in a complex chain reaction of impacts. The consequences of policymakers—state and federal—suffering from “tunnel vision” or engaging in cheap, inaccurate, and deceptive talking points are manifesting in readily foreseeable conflicts making their way through expensive and unnecessary legal battles at the expense of tax dollars and patient quality and affordability of care.

We can do better than this. As HIV advocates, we know how to leverage historical challenges into future successes. We know how to seek out the unforeseeable and to respond to clever callousness. We have an obligation to share this knowledge and empower partners across the country to achieve what we have and, in doing so, to save our own investments from today’s threats.

2026 requires a paradigm shift from institutional comfort to nimble, responsive, powerful advocacy.

The changes 2025 brought us will be the continued challenges of 2026. To which the answer must be “We can.” (…CANN)

How Lupus Colorado and CANN Built an Advocacy Powerhouse

Some partnerships start with a formal strategy session. Ours began with a simple realization. People living with lupus and people living with HIV or viral hepatitis face many of the same obstacles when they try to get the care they need. Once we recognized that shared landscape, the connection between Lupus Colorado and the Community Access National Network (CANN) started to feel not only natural, but necessary.

CANN’s mission is to define, promote, and improve access to healthcare services and supports for people living with HIV and people living with viral hepatitis. The focus is on keeping care affordable and within reach for people no matter where they live, what they earn, or how they are insured. As soon as we spent time together, it was clear how much that mission speaks to the lived reality of people living with lupus. Many in our community depend on the same safety net programs, the same specialty pharmacies, and the same policies that protect medication access for people with chronic conditions nationwide.

Once we began sharing stories, the overlap came into full view. We heard about people living with lupus who rely on the 340B Drug Pricing Program to keep their treatment affordable. We heard about people managing both lupus and other long term conditions who face the same hurdles that people living with HIV or hepatitis encounter when insurance rules change or formularies shift. We also heard how uncertainty about programs like the 340B Program or state efforts to set Upper Payment Limits through bodies like the Colorado Prescription Drug Affordability Board creates stress and confusion for everyone who counts on steady access to treatment. The policy language may sound technical, but the effects show up in daily life. That shared experience became the spark that brought our organizations together.

Lupus Colorado eventually became a kind of testing ground for patient engagement around these issues. When debates surrounding 340B and the state board intensified, we invited our community to learn more and speak up. People living with lupus stepped forward with thoughtful questions about what these changes might mean for their medications and their stability. They shared stories about years spent finding the right treatments. They talked about the worry that comes with not knowing whether a familiar pharmacy or discount program will still be available. Their honesty helped shape a clearer picture of what access really means for people with chronic conditions.

CANN supported this work by offering context, training, and a strong national network. Their experience showed us how these local conversations fit into broader public health goals, including ongoing efforts to build sustainable systems for people living with HIV and long term strategies for hepatitis C elimination. They also helped amplify our stories by connecting them to advocates, policymakers, and public health leaders who are working to protect and expand medication access nationwide.

As we continued working together, the partnership grew into something that felt like friendship and, at times, even family. It surprised all of us how quickly Louisiana and Colorado began to feel connected through shared purpose and shared energy. This work is deeply personal, and when good people come together with the belief that collaboration, not competition, brings out our strongest work, something close to magic begins to take shape. My curiosity and strategic thinking blended naturally with Jen’s mentorship and policy insight. Kalvin and Ranier added necessary context for any variety of issues we shared and even accompanied me to some meetings to ensure Lupus Colorado's interests were well-defined for our audience. Together we created a combination that strengthened every effort that followed.

This collaboration also changed how advocacy feels for many people. Instead of seeing policy as something decided far away, our community began to see it as something they can influence. When people speak about their lives, policymakers listen differently. The technical language becomes human. The stakes become easier to understand. And the entire conversation shifts toward solutions that protect access rather than limit it.

The partnership between Lupus Colorado and CANN has shown us that when organizations connect around shared purpose, everyone benefits. We bring different histories and different areas of expertise, but we are united by our commitment to ensure that people living with chronic conditions can access the care they need without fear or financial hardship. Our collaboration continues to strengthen advocacy networks, uplift patient voices, and support progress toward public health goals that matter to all of us.

Most of all, this partnership reminds us that no one faces this journey alone. When communities work together, even unlikely collaborations can grow into something powerful enough to spark change.

How Pharma Can Turn Advocates Into Allies

Governor Ned Lamont's recent visit to ViiV Healthcare's Branford research facility highlighted a missed opportunity that extends far beyond Connecticut's biotech sector. While Gov. Lamont toured laboratories where researchers develop long-acting injectable HIV prevention drugs, the scene raised a compelling question: What if pharmaceutical companies routinely invited advocacy leaders—not just politicians—behind the scenes for plant tours, CEO roundtables, and genuine engagement with the science that drives their work?

This moment arrives at a critical juncture for disease advocacy organizations across therapeutic areas. As federal funding faces unprecedented cuts and advocacy groups struggle for sustainability, the pharmaceutical industry's evolution from traditional grant-maker to authentic community partner offers a transformative model that could reshape how companies support grassroots organizations serving people living with HIV, hepatitis C, lupus, rare diseases, and countless other conditions.

Federal Funding Collapse Creates Cross-Disease Crisis

The Trump Administration's systematic dismantling of federal health programs creates funding gaps that affect advocacy organizations across all disease states. The Centers for Disease Control and Prevention (CDC)'s HIV Prevention Division faces nearly $1 billion in cuts, while the National Institutes of Health (NIH) confronts a 40% reduction in its $3.3 billion HIV research portfolio. Over 200 HIV/AIDS research grants have been terminated since January 2025.

These cuts reverberate beyond HIV advocacy. Chronic disease programs, rare disease research initiatives, and community health grants face similar reductions, leaving advocacy organizations across therapeutic areas scrambling for alternative funding sources. Los Angeles County's 39 HIV organizations received contract termination notices affecting $19 million in CDC funding, a harbinger of what advocacy groups in oncology, autoimmune diseases, and rare conditions could expect.

Industry's $100 Million Evolution

Pharmaceutical companies have been pioneering investments that transcend traditional grant-making, demonstrating innovation in community partnerships that becomes critical as federal funding disappears. ViiV Healthcare's $7.8 million Fund Our Futures pledge, announced in November 2024, exemplifies this shift through their AMP Grant Initiative, where 13 organizations distribute funds to activate over 150 grassroots projects—the first time a pharmaceutical company has empowered communities to make their own funding decisions.

Gilead Sciences leads with $24 million through their Zeroing In program and an additional $12.6 million Setting the P.A.C.E. Initiative serving Black women and girls. Merck's $7 million HIV Care Connect initiative addresses social determinants of health over five years.

These programs demonstrate authentic partnership through direct C-suite executive participation in community dialogues, real influence for community advisory boards on corporate decision-making, and holistic approaches addressing social determinants beyond strict “medical” needs.

A Hard Look at the Two-Tier Funding System

The funding divide between established and grassroots advocacy organizations is stark. amfAR has raised nearly $950 million since 1985, including over $17 million at their 2024 Cannes Gala alone, while the National Minority AIDS Council operates on $5-7 million annually with executive compensation exceeding $400,000.

The reality for smaller organizations is far different. Kristy Kibler, CEO of Lupus Colorado, details the issue: "Small, state level patient groups are drowning in too many programs created to generate funding and need to be more bold in asking for operational support. We can not continue to ask patients and their families to keep these orgs financially afloat."

Warren Alexander O'Meara-Dates, Founder/CEO of The 6:52 Project Foundation, echoes these challenges from the HIV advocacy space: "Without name recognition and measured outcomes for programs, pharma companies often times do not align themselves with us. Additionally, the strict guidelines set in application processes, tend to eliminate our ability to qualify for and/or apply for support."

Pharmaceutical companies contribute to this disparity through their funding patterns. "They often support the two national orgs who do not invest locally or pass along any of that funding which leaves little room in their budgets to support our state level work," Kristy explains. Meanwhile, staffing instability devastates smaller organizations: "We have had two partners eliminate their advocacy teams and leave us without even a contact at their company."

This creates self-reinforcing cycles where established organizations possess infrastructure for complex grant applications and institutional relationships that survive personnel turnover. AIDS United's average grant size of $36,522 often represents a lifeline for smaller entities, but similar micro-funding challenges affect almost all small and upstart advocacy organizations.

Innovation Models Ready for Cross-Disease Application

Sophisticated engagement strategies pioneered in HIV advocacy provide blueprints for other disease areas. European Community Advisory Board meetings bring advocates directly into dialogue with pharmaceutical executives, where community members have real influence on drug development and safety protocols. Bristol Myers Squibb's Global Patient Outreach structure integrates patient voice into all business decisions—a model that spans their oncology and other therapeutic portfolios.

Executive engagement has become central to these partnerships. Carmen Villar, Gilead's VP of ESG and Corporate Citizenship, leads direct dialogue sessions with community leaders, while ViiV executives participate in European advisory meetings where advocates shape corporate strategy. This direct access allows advocacy organizations to influence corporate policies, research priorities, and community investment strategies in real time.

Experiential Investment Over Transactional Charity

The pharmaceutical industry has an unprecedented opportunity to model transformative advocacy investment across all disease states. Rather than simply writing checks, companies should create meaningful engagement opportunities that build advocacy capacity and strengthen community-industry relationships.

Plant tours and research facility visits represent one powerful model. Kristy from Lupus Colorado articulates what advocacy leaders want: "I would want to know what barriers the trials are facing, specifically in the lupus community. It would be helpful to get some education on how their drugs work and why they are novel so that we can help generate excitement and hope in our patients."

Warren from The 6:52 Project emphasizes the importance of understanding pharmaceutical development processes: "What process does new product development go through from concept to market sales. Therein, I would like to learn how much community input is involved during the process."

The value extends beyond education to building trust and credibility. Warren notes that "having access to c-suite executives would benefit my organization because it would allow us to share stories of success and barriers serving marginalized communities in rural areas. Doing so would shape better relationship building with community such that trust of pharma and their intentions could be increased."

Beyond plant tours, pharmaceutical companies can leverage advocacy organizations as strategic resources. "Using us as a resource for trial participants, connection with their sales reps to help us open doors into provider space, co-branded marketing materials," Kristy suggests. Warren emphasizes the credibility factor: "Credibility partnering with a major corporation increases validity of programming offerings for smaller organizations like mine."

The most transformative opportunity lies in giving advocacy organizations real influence over corporate strategy from the beginning. Warren advocates for "including my expertise in developing products for community from conception" rather than "waiting until later in the process." This represents a fundamental shift from charitable giving to authentic partnership.

Forward-thinking pharmaceutical companies should establish advocacy advisory boards that include smaller, state-level organizations across therapeutic areas, not just established national groups. Launch executive mentorship programs pairing pharmaceutical executives with advocacy leaders. Create structured programs bringing advocacy leaders to research facilities and executive meetings. Provide operational support that moves beyond program-specific grants to unrestricted funding that builds organizational capacity.

The convergence of federal funding cuts and industry innovation creates a critical window for establishing alternative advocacy funding ecosystems. Companies that pioneer experiential investment models across disease states will strengthen their community relationships and position themselves as leaders in sustainable public health advocacy.

Imagine a pharmaceutical industry that recognizes the untapped potential in scrappy, nimble advocacy organizations led by people who understand their communities' needs intimately. These creative advocates—like Kristy in Colorado working directly with lupus patients, or Warren serving marginalized communities in rural areas—bring innovation, agility, and authentic community connections that larger legacy organizations often lack. They deserve more than the leftover funding after national organizations take their share.

The pharmaceutical industry has the opportunity to empower and equip these advocates not just with financial resources, but with knowledge, access, and genuine partnership. When companies invest time in plant tours, executive mentorship, and collaborative strategy sessions with smaller advocacy organizations, they tap into a reservoir of community insight and innovative approaches that could transform how medicine reaches the people who need it most. The scrappy organizations working closest to affected communities often have the boldest ideas and the strongest commitment to change—they simply need industry partners willing to see past the polished grant applications of established organizations to recognize the potential of authentic grassroots advocacy.

This moment demands more than transactional charity. It calls for industry to reimagine community investment as true partnership with the advocates who know their communities best.

Novel Developments: Merck & Gilead Partner on New ARVs

On March 15th, 2021, Merck and Gilead Sciences announced a partnership in development of their novel products, Islatravir and Lenacapavir – both currently in clinical trial phases. The partnership isn’t limited to these investigative products – both, if successful, would establish new classes of antiretrovirals each. The agreement allows an option by either manufacturer to investigate potential combination therapies with the other’s already established products. Additionally, while current trials for these medications are focused on oral administration and injectable application, Merck is investigating the potential for Islatravir as PrEP via an annual implant.

Let’s take a moment to acknowledge the remarkable nature of these proposed products. Gilead’s Lenacapavir is aimed at addressing those with multidrug resistance and – here’s the kicker – with a potential to be effective for as long as 6 months via subcutaneous injections. While Merck’s Islatravir has been described as “potent”, it’s so strong that in order for it to be taken once daily, it must be “lightly sprayed” onto a doravirine tablet (the partner medication for Islatrvir in current studies). Which is great for that aim at being a once weekly therapy.

With these two potential first-in-class medications inching closer to the finish line of approval, this partnership also stands to benefit advocates in a another direct way. Merck has been an exceptionally strong advocacy partner, edging into nuanced regulatory territories and working hard to ensure patients lead those discussions and the company’s positions. Gilead is savvy in their marketing, contracting, and programming; from flashy commercials on targeted tv platforms and innovative radio campaigns to the ease in which their products become “preferred” on some formularies to providing 10-day “sample” bottles – which some providers have used to initiate same day treatment for newly diagnosed people living with HIV without ever having to leave the provider’s office.

Merck and Gilead’s partnership here is…interesting to say the least. Prior to January 19, 2021, when the Supreme Court of the United States refused to hear Merck’s appeal, these two pharmaceutical behemoths were engaged in a legal fight over patent rights to hepatitis C medications, Harvoni and Sovaldi, since 2016.

When you work in HIV and Hepatitis patient advocacy, these kinds of things are our soap operas in their own way. We love our contacts within these companies and often share a great deal of our personal lives with them. That type of relationship is tinged, like most familial relationships, when we have conflicts of interest with our friends – where our priorities diverge from those of the corporation’s. The issue of patents and anti-competitive contracting are some of these hot button issues. All of that said, despite the faux-shock theatrics some advocates have used to enjoy the spotlight, our friends in pharmaceutical manufacturing are also some of the strongest supporters of our work (read: the largest share of corporate funding supporting advocacy).

Thankfully, the vast majority of these relationships are dynamic. Advocates enjoy space to call-out practices we find detrimental, direct funding to programs and priorities in alignment with our values, and provide feedback on nuanced areas like clinical designs and regulatory structures. One might say our greatest allies pay us to argue with them. And there’s good logic to such a scheme; a team grows stronger when the weaknesses are evaluated, addressed, and turned into strengths.

Indeed, this partnership, with its expansive nature to include development, manufacturing, and marketing, holds both great promise and great concern for our communities. Gilead is already learning from its failure with Descovy trials to include people assigned female at birth (AFAB) – including cisgender women in clinical trials for Lenacapavir as a long acting injectable (for both treatment and prevention) to begin later this year; though Gilead should note: “people of trans experience” won’t all fit neatly into the clinical trial including cisgender men. To be fair, Merck’s Gardasil commercials still refer to “males and females” rather than the simpler “everyone”.

Sincerely, the trans guy writing this blog.

Taken as a whole, this team poses the potential to be “The Dream Team” in both treatment and prevention and as partners to advocates. We’ll need to see the best of them, not the worst and we’ll need to keep a close eye on how those relationships we’ve come to rely upon may change in light of this new partnership.

In the meantime, (I’m going to say this for the first time a year with a humorous intent rather than a morbid one) pass the popcorn. This season is going to be fantastic!