Michael Aksten

08/10/2026

FOR IMMEDIATE RELEASE:

ADAP Advocacy Releases New ADAP Crisis Public Service Announcement

‘ADAP Saves Lives: End the Wait’ PSA Addresses the Fiscal Crisis Facing State AIDS Drug Assistance Programs

For Immediate Release: August 10, 2026

Media Contact: [email protected]

WASHINGTON, D.C. – In response to the resurfacing of waiting lists for state AIDS Drug Assistance Programs (ADAPs)—now impacting over 1,000 clients—ADAP Advocacy has released a new digital public service announcement. As part of its grassroots advocacy campaign, ‘ADAP Saves Lives: End the Wait,’ the PSA features Texas-based HIV advocate Michelle Anderson, who appeared in ADAP Advocacy’s 2011 PSA during the previous ADAP Crisis.

According to the National Alliance of State and Territorial AIDS Directors (NASTAD), two states—Iowa and Utah—have implemented waiting lists for their ADAPs, becoming the first to do so in thirteen years. 1,035 patients living with HIV/AIDS are impacted in Iowa, and another 48 in Utah (NASTAD, 2026). ADAPs haven’t dealt with patient waiting lists since November 2013, when the ‘ADAP Perform Storm’ finally ended as South Dakota transitioned its last 11 waiting list clients onto ADAP coverage.

Brandon M. Macsata, CEO of ADAP Advocacy, stated: “Fifteen years ago, ADAP Advocacy aired a groundbreaking PSA to raise awareness about the ‘ADAP Perfect Storm’ that was raging across 13 states and impacting over 10,000 lives. Our concern is that history is about to repeat itself, and we’re trying to elevate this new crisis, so Congress acts sooner, rather than later.”

The PSA is available online at https://lnkd.in/dPy5_bRs.

Stakeholders can learn more at https://lnkd.in/gjdyQUjf.

To learn more about ADAP Advocacy or the ‘End the Wait’ campaign, please email [email protected].

08/09/2026

Who gets to make decisions in healthcare?

For decades, healthcare has worked hard to ensure patients have a voice. Patient and Family Advisory Councils, satisfaction surveys, focus groups, and community engagement have all helped move healthcare toward becoming more person centered.

But I believe we're ready for the next step.

What if people with lived experience weren't only asked to share their stories after decisions were made?

What if they were sitting at the table when those decisions were being made?

I recently wrote a paper titled "Beyond the Patient Advisory Council: The Boardroom Needs Patients Too."

It isn't simply about patient advocacy. It is about recognizing lived experience as a form of organizational expertise alongside clinical, financial, legal, and operational expertise. The central question is simple:

Can healthcare afford to continue making strategic decisions without the voices of the people those decisions ultimately affect?

Drawing from my own journey as someone living with disabilities and serving across governance, quality improvement, public health, and policy, I explore why I believe the future of healthcare is built not only on innovation, but on partnership. The strongest organizations will be those that intentionally integrate lived experience into governance, quality improvement, executive leadership, and policy development, rather than limiting it to advisory roles.

I would genuinely welcome your thoughts.

Should lived experience have a seat in the boardroom?

08/05/2026

Election season for the HIV Caucus Steering Committee is coming up!

To ensure every member of the HIV Caucus is empowered to run, the Member Engagement Committee is a hosting a “How to Apply” webinar on August 11th at 6 PM (ET). Register at:

https://us06web.zoom.us/webinar/register/WN_zv7K8pyUS0-CjH08wVh1-Q #/registration

If you’ve ever wanted to take a more active role in guiding the HIV Caucus, this hour-long webinar is for you.

Note: This webinar will be recorded and shared on YouTube.

The application process is open from August 12th – Sept. 8th, 2026.

08/04/2026

For decades, direct federal investment in community-based HIV prevention has helped trusted local organizations reach people and communities that traditional health systems too often fail to serve.

These organizations provide HIV testing, connections to treatment, access to pre-exposure prophylaxis and post-exposure prophylaxis, commonly known as PrEP and PEP, prevention education, navigation services, and rapid responses to outbreaks and emerging community needs.

Community-based organizations are the bedrock of our nation’s HIV response. We cannot end the HIV epidemic by dismantling the trusted community systems that make prevention possible. This decision threatens access to testing, PrEP, PEP and care, and will ultimately lead to preventable HIV transmissions, program closures and higher health care costs.

Failure to recompete PS21-2102 would not simply end an incredibly effective program. It would fundamentally change how HIV prevention services are delivered in this country, putting trusted community services at risk, particularly those serving Black and Latino communities, LGBTQ+ people, people in the South, and others disproportionately affected by HIV.

Federal, state and local government partners all have vital roles to play in HIV prevention. But the United States cannot end the HIV epidemic without significant financial support for community-based organizations that are connected to, trusted by and staffed by people from the communities most affected by HIV.

Community-based organizations were directly funded precisely because their cultural knowledge, relationships and community presence allow them to reach people whom larger systems frequently cannot.

Ending dedicated direct funding could:

Reduce access to HIV testing;
Interrupt pathways to PrEP, PEP and HIV care;
Undermine community trust and disrupt longstanding relationships;
Eliminate frontline positions;
Jeopardize 340B eligibility for some organizations; and
Force community programs to reduce services or close altogether.

The Trump administration must reverse course and recompete PS21-2102, preserving dedicated direct funding for community-based organizations with minimal disruption.

Congress must act to protect and restore dedicated, direct funding for community-based HIV prevention, including clear legislative and appropriations language preserving the original intent of these funds and ensuring that the administration allocates them as Congress intended.

State and local health departments receiving supplemental funds to prioritize continued support for the community-based organizations currently delivering these services and prevent disruptions in care and prevention.

We are working with affected organizations to document the local consequences of this shift, including potential service reductions, staff losses, interruptions in prevention access and threats to organizational sustainability.

We will continue elevating these impacts and organizing alongside affected communities until dedicated support for community-based HIV prevention is secured.

HIV prevention is essential public-health infrastructure. We cannot end the HIV epidemic by dismantling the community systems that make prevention possible.

08/04/2026

🎉 The 2026 National Ryan White Conference on HIV Care & Treatment officially begins today!

While I'll be attending virtually this year, I couldn't be more excited to spend the next several days learning from incredible clinicians, researchers, advocates, policymakers, and people with lived experience from across the country.

This conference represents so much of what I believe in: collaboration, innovation, quality improvement, and ensuring people living with HIV receive the highest quality care possible.

Over the past year, I've had the privilege of growing in ways I never imagined through governance, quality improvement, advocacy, and education. Each opportunity has reinforced my belief that improving HIV care is a shared responsibility, and that lived experience belongs at every table where decisions are made.

I'm looking forward to bringing back new ideas, best practices, and lessons learned to the organizations and communities I serve here in New Hampshire and beyond.

Here's to four days of learning, connecting, and continuing the work of ending the HIV epidemic.

08/04/2026

With Cody Pharis – I just made it onto their weekly engagement list by being one of their top engagers 🎉

08/03/2026

08/03/2026

The past couple of weeks have been an absolute whirlwind, and I wouldn't have it any other way.

Attending the 2026 International AIDS Conference virtually was an incredible experience. I won't lie... I really wish I could have been there in person. Rio de Janeiro! What an amazing host city. The opening ceremony and closing session were both unforgettable, and the knowledge, ideas, and inspiration I took away from the conference were truly remarkable. (July 26 through July 31)

Now, after barely catching my breath, I'm getting ready for the 2026 Ryan White Conference in Washington, D.C. While I'm once again attending virtually, I'm incredibly grateful for the opportunity.

My schedule is already packed from 9:00 AM until 8:00 PM each day, and I honestly can't wait for it to begin. There is so much to learn, so many people to hear from, and so much that I hope to bring back to my community. (August 4 through August 7)

And the excitement doesn't stop there...

I'm also counting down to HIV Is Not A Crime 7 (HINAC7), which I'm really looking forward to!

Then, in October, I'll be traveling to HRSA Headquarters in Rockville, Maryland, for CQII Learning Session 5. Having the opportunity to work alongside quality improvement leaders from across the country, collaborate with fellow Ryan White providers, and continue strengthening the work we're doing to improve care and outcomes for people living with HIV is an incredible honor.

Every conference, every training, every conversation is another opportunity to learn, grow, and better serve my community. Here's to continuing the work. ❤️

08/02/2026

In 2009, I received a phone call that changed my life.

"You've tested positive for HIV."

That was it.
No appointment.
No follow up.
No case manager.
No connection to care.
No counseling.
No education.
No one to ask if I was safe.
No one to explain what came next.
Just a phone call... and silence.

At the time, it didn't make sense to me. My partner remained HIV negative, and to this day still is. Today, he takes PrEP despite U=U because that's the choice we've made together. Looking back, I understand there were things I didn't know then. But in that moment, with no one guiding me and no immediate signs that anything was wrong, I convinced myself there had to be some mistake.

I ignored it.
I was wrong.

Within a year I was diagnosed with AIDS.
My CD4 count had fallen to 10.

I wasn't told I had months.
I wasn't told I had weeks.

I was told, as gently as they could manage, that I likely had days. About a week, if I was fortunate.

It's strange how life changes when someone tells you that you're dying.

The plans you made disappear.
The future becomes incredibly small.
You stop asking, "What do I want to do next year?"
You start wondering if you'll see next week.
But somehow...
I did.

The days became weeks.
The weeks became months.
The months became years.
The years became a second chance.
I didn't just survive.
I was transformed.

HIV humbled me. It forced me to confront what truly mattered. It taught me compassion in ways I never expected. It challenged me to become someone I never imagined I could be. And in an odd, almost impossible way, it saved me. Not because I would ever wish this journey on anyone, but because surviving it gave me a purpose I had never known before.

Today, my life is filled with places I never expected to go and opportunities I never believed I would have. I have been entrusted with leadership roles in nonprofit governance, healthcare quality improvement, HIV prevention and care, and public service. I have the privilege of helping shape policies, strengthen organizations, and ensure that others receive the support and connection to care that I never did.

Perhaps that's why I care so deeply about linkage to care, patient navigation, quality improvement, and community engagement.

I know what happens when those systems fail.
I lived it.

Now I spend my life trying to make sure they work better for the next person.

As I look back on 2026, I can't help but smile.

It has been a year filled with opportunities I once thought impossible. New leadership roles. National collaborations. Public service. New challenges. New responsibilities. And so much more still left to accomplish.

There is still work to do.
There are still people to serve.
There are still systems to improve.
There are still lives to change.
Not bad...

For someone who wasn't suppose to make it