CANN Grows to Meet Need

When Bill Arnold died in 2021, and the governing Board for Community Access National Network (CANN) saw fit for me to lead the organization, I was fearful. The task ahead of me was enormous. But they assured me, their confidence was not placed merely out of an affection for my wit or work ethic. Rather there were some intangible aspects to my personality and willingness to learn, and directness that felt…familiar. In the two years since, our Board has changed dramatically, working to thread a careful path forward while also maintaining connections and necessary historical attachment. In that time, the task in front of me, as an extension of the Board is still enormous and remains deeply complex as the powers behind interests other than patients have taken on new targets, diversified their goals, and – in all frankness – played some rather unfortunate semantics games in legalese to avoid accountability. It’s in that space CANN aggressively pursued observation, study, and engagement in 2023. It is in that space which CANN will grow to meet the needs of the moment in 2024.

Our Mission

CANN’s mission has long been to “define, promote, and improve access to health care services and supports for people living with HIV/AIDS and/or viral hepatitis through advocacy, education, and networking.” The “how” behind this work is very customized to our audience of the moment, working to understand the straight-forward interests of that audience, their goals, and the honest drive behind their work, be they federal or state regulators, industry partners, advocates representing patients with other health conditions, or state-based community coalitions already deeply engaged on issues affecting HIV and Hepatitis C. This often looks like quiet meetings focused on problem solving across expertise or long text conversations that result in shorter or longer phone calls. It often includes asking about someone’s family and sharing about our own experiences. We force a certain amount of buy-in through vulnerability and looking for where we can align while also holding strong boundaries as to what is and is not acceptable in moving forward the quality of life and timely, easy access to care for patients. In this we build extensive networking opportunities across the country. 2023 saw this focus shift to include state-based work among our extensive federal work.

2024 will see more focus on state-based activities and networks. The reality is, very little is happening with great speed on the federal level and lawsuits from well-financed interests will continue to make the trek slow, particularly with regard to 340B reform and actualizing the patient protections afforded under the Affordable Care Act. And that reality is one few national or federally based organizations are prepared for. However, CANN shared years ago with our funding partners that we felt this shift was coming and quicker than many could adequately appreciate. Our partners found value in this assessment and our readiness to grow in this direction and have since made investments to see this avenue of advocacy grow to the needs of the moment. Here’s the other truth, investing state-based advocacy can and will have federal level impacts; they will be slower but more secure than the alternately quick and sluggish pace of the federal space.

Our Team

CANN’s core team saw the addition of our regular blogger, Travis Manint, and new consultant, Ranier Simons. The quality of work these two people put into this organization is nothing short of inspired and I am immensely pleased that they’ll be joining us again in 2024.

As CANN looks toward the new year (and the years to come), we will continue to seek out people affected by HIV and Hepatitis C, patients, caregivers, loved ones, who wish to work in this space. CANN has always prided itself as “the community’s policy shop”, meaning in order for us to most closely fulfill that ideal, we must hire from community. We’ll be keeping our eyes out for those spirits driven to create change, defend progress, and step forward in defense of putting patients first, regardless formal educational background.

Policy Issues

In addition to maintaining our traditional programming, in no particular order, the policy issues we’ll be leaning into in 2024, include (but certainly aren’t limited to these because who knows what weirdness is going to come with the election):

-        340B Reform

-        Prescription Drug Affordability Boards

-        Federal funding of HIV programs (appropriations and policies)

-        Any advancement of the Biden Administration’s National Hepatitis C Elimination Program

-        State health department staffing levels

-        Changes in Medicaid programs in Southern States

-        Impacts of the Inflation Reduction Act in terms of access

-        Hospital, provider, and pharmacy consolidation

-        Medical debt

We’ll also be investing in developing the community conversation around “innovation”. I’ve long argued “nobody cares about innovation” when discussing the issue with our industry partners. “Innovation” has always been… “their” issue, while patients struggle to access the medications and appropriate care we already need as opposed to issues we haven’t yet developed. But that’s part of the problem in how patient communities generally think about “innovation”.

Last year, a dear friend called me after receiving their first long-acting injectable dose of antiretroviral medication – they have lived for more than a decade with HIV and ARVs aren’t “new” for them. A single tablet meant less stress than a multi-pill regimen but what was left was still a personal sense of hassle with every dose which really masked shame. So it was on that call, the day after when they didn’t need to take a pill any longer that they cried at the sense of relief, the near instantaneous quality of life improvement.

Time and again in 2023, I heard Coloradans living with cystic fibrosis talk about how life changing Trikafta was as a therapy. Imagine, empathize with being bed ridden or fearful of leaving home, awaiting news you need a lung transplant or biding your time because you know it’s coming, and one therapy change later, getting married, planning on having kids, holding down a job you absolutely love – even on the hard days. Things you might never have thought of as attainable before and suddenly…you can.

Think about having a blood clot break and scatter and the medication used to treat pulmonary embolisms historically required extremely careful balancing, near daily lab draws in the first month and a sheer prayer on not bleeding out. Who keeps a job while surviving that? Well…Eliquis changed that story for thousands and thousands of people in this country alone.

Those changes matter. Those changes are patient stories.

It’s time we own them.

The hard truth is innovation is being threatened. It is the height of privilege to demand the newest, greatest, and most effective medications in the world and to want them for free. There is a lack of reality in assuming some other country will just…step up. How’s that going for PEPFAR?

Did you gasp a bit? I hope you did. Because I did when that frame dawned on me. It was the middle of the night and I was suddenly very, very awake.

There is a cost to being first in line. That cost is one we pay to ensure the rest of the world also has these medications. And it is a privilege to be able to bear that cost in a way that allows us to lead and care for our own and indeed we do. Each of the medications mentioned above can be accessed for as low as $10 per month or at no cost at all to patients in need in the United States, but pharmacies are not required to check for these tools before asking a patient for a $600 co-pay. They should be. Payers are not required to apply the fullness of that benefit directly to patients, but they should be. Providers aren’t required to inform their patients about these tools when prescribing a medication, rather most typically they merely tell a pharmacy to substitute with a generic (if one is available) that might not be as effective, but they should be.

We will be exploring these conversations with our shared communities and stakeholders.

Looking Forward

CANN is on a path of growth because ultimately as need grows, so does the work to address those needs.

We look forward to serving you, our community, this year and in the years to come.