By: Marcus Hopkins, Blogger
This week, I’ll be writing from the 2014 ADAP Summit – “The Intersection Between ACA & ADAP” – as one of several panelists discussing some of the complications we in the healthcare industry face when dealing with the myriad problems surrounding the rollout of the Affordable Care Act (ACA) and how it has impacted those of us trying to navigate the murky waters that this well-intentioned piece of legislation has left in its wake.
For those of you unfamiliar with the Affordable Care Act – and let’s be honest, who really is familiar with every aspect of this law – the part of the law that is most likely to impact those living with HIV is the portion regarding the state-by-state Medicaid expansion.
There are some incredibly daunting statistics related to the income levels of those infected with HIV – roughly 59% of HIV patients fall below 138% of the Federal Poverty Limit (FPL). It is therefore wise to suggest that the ACA will very likely have a negative impact upon those living in this demographic.
As a resident of West Virginia, where 18.8% of the population is covered by Medicaid (statewide), my primary concern for this conference is how the changes brought about by the ACA will impact citizens living within my state – myself, included.
For a little bit of background, I should first explain that West Virginia faces a challenge that is unique in my experience working with various states’ HIV treatment facilities: there are only two clinics that treat HIV/AIDS within the entire state of West Virginia – one in Charleston (the state capital), and the other in Morgantown (home of the largest state university).
This presents a troubling set of problems for those living in a state where access to comprehensive healthcare is largely unavailable for a variety of reasons. This should come as no surprise to anyone who’s ever heard a joke about West Virginia’s population, what with our undesirable dental care, our lack of access to electricity and running water (that hasn’t been poisoned by coal-cleaning chemicals), and our supposed dislike of wearing shoes).
As a West Virginian with reasonably fantastic teeth, several functioning power strips, potable water, and more than a single pair of shoes, I am loathe to admit that stereotypes become such for a reason.
The state of West Virginia often exists only in the imaginations of those who’ve watched various coal mine disaster rescue coverage or, perhaps, “We Are Marshall.” What many people fail to realize is that the reality that is “West Virginia” is far more remote than can be easily communicated in films or on television.
There are several areas of the state where the nearest comprehensive health care provider/clinic is more than an hour’s drive away. We’re not simply talking of a straight shot up the Interstate (if there even IS such a strip of Interstate in WV); rather, these drives often include traveling over terrain that can be disproportionately impacted by weather (snow often leaves certain areas of the state completely inaccessible for up to weeks at a time) and roads that weave dangerously into and out of mountains and valleys.
These two factors, alone, serve as significant barriers when it comes to patients accessing health care services. When those are combined with the socioeconomic challenges faced by West Virginians, more often than not, potential patients in the state have chosen food and shelter over diagnosis and treatment.
Throughout today’s panel, access to services was my primary concern, as this is where Ryan White and the ADAP program are supposed to step up to help provide medical treatment.
As a patient and advocate for patients, I have to admit that I felt like something of an outsider at this panel. One of the shortfalls of discussing policy and healthcare is that those involved have a tendency to speak in terms of analysis on the Macro level, often to the detriment of those experiencing those policies on the Micro level (i.e. – the patients).
We frequently speak of patient experiences at these summits and panels, but rarely are these patients ever invited to take part in the discussions to address issues that directly affect their lives.
This panel was comprised of several different stakeholders, including pharmaceutical companies, legal experts, government representatives, policy advocates, and patients (15% of the panel). CANN and aaa+ both went well out of their way to ensure that patients played an important role in the discussion, and that our concerns were addressed over the course of the summit.
On the first day, I heard several stories from service providers and experts about how the landscape has changed for them – more paperwork; roadblocks to providing access to care for their patients; more confusion from medical providers – but only a handful of presenters actually focused on how the patients, themselves, were impacted.
To be fair, much of what we were discussing was on the policy level – how do we navigate the murky and complex waters of current policy and legislation (and how is each state interpreting said policies), and, seemingly of more importance, how do we go forward in crafting new policy, from here?
A big concern facing all parties is, “What will the role of the Ryan White Care Act be in the future?”
This discussion almost immediately eclipsed any discussion of the current intersection between the ACA and ADAP, and rightfully so – many of the provisions within the ACA have yet to be fully realized, and so no one really has a very good picture of where things currently stand.
That said, I would be remiss if I did not mention that there appear to be several individuals who are working tirelessly to ensure that HIV legislation is properly crafted going forward, and throughout the two-day session, it became apparent that there was clear frustration on their parts that they felt their efforts were neither being recognized, nor appreciated.
It is this last issue that raises the most concerns, for me, as it helped to expose a greater problem that was both glaringly apparent and highly volatile – there is very little functional communication occurring between the various stakeholders involved in the various research, data gathering, dissemination, and crafting ventures.
This revelation led to a quite contentious debate as those very hard working organizations met complaints of a lack of information with what can only be described as exasperation.
More than once over the course of the summit, I was dismayed to hear, “This is a waste of time! Someone’s already doing that! That resource is already out there.”
More concerning was when other attendees responded with equal exasperation, “Really? Who’s doing that? Where do I find this information? Who’s doing what, and how do I access it?”
What makes this so distressing is the fact that, rather than uninformed patients or reporters attempting to get answers, the people in attendance are the ones who are supposed to be the most informed; the most in the loop; and yet, without fail, virtually everyone in attendance expressed frustration that they were, in some way, not in the loop.
To add another layer of frustration to this issue, the blanket assumption on behalf of those working on many of the initiatives discussed during the summit that everyone was “in the loop.”
If this breakdown of communication exists on the policy crafting level, the implications for every other level of the process is that each stakeholder, as they get further away from the “center” (if ever there was a more inaccurate description, I’m unaware), will become exponentially more disconnected from the information and input process.
There is much applicable in the analogy of “too many cooks ruin the soup;” at the policy level, it’s very difficult to even begin to incorporate input from those furthest away from the process (i.e. – the patients); attempting to do so often results in an unreadable, unenforceable, and ultimately feckless piece of legislation that will stand no chance of reauthorization and passage.
This reality leaves us me in a very awkward position, as both an advocate and a patient, as my first inclination is to do whatever it takes to maintain what benefits I currently receive; my secondary response is that, in order for a better working whole to be designed, we need to go back to the drawing board – as one presenter put it best, “Burn the village to save the village.”
If the goal of the Ryan White Care Act is to provide medical care to patients, there comes a point when we must examine what we have, from the ground up, to determine if the current approach is what will best serve those most in need.
What this requires, much to the annoyance of those at the top of the policy crafting food chain, is comprehensive input from those at the very bottom – those who are current or recent patients covered by the RWCA. The problem with this is that we’re speaking of a population that is very difficult to reach, in the first place.
As with the state of WV, reaching out to patients living with HIV, particularly those in the lower income brackets, is uniquely difficult, especially in areas of the country where HIV/AIDS stigma is both present and active. Patients covered by Ryan White are often so far removed from the policy process that the only information they receive is when they see their caseworkers, physicians, or benefits counselors.
If these visits are the only opportunities available to capture a snapshot of these patients and their experiences with RYCA coverage, does this not make them the perfect place to start that information gathering process?
What several people proposed was a survey for patients; what was less clear was how this survey would be administered. As with most modern discussions about surveying, the immediate first response is to engage clients by way of social media.
While this approach may work with other conditions and support communities, rarely do other communities face the same types of stigma associated with HIV/AIDS. What concerns me about relying on social media as the sole outlet through which we connect with patients is that, without direct access to this survey, many patients may be unlikely, unwilling, or too uninformed to seek out the survey.
By presenting patients with a survey during their visit, we can at the very least ensure that they will have the process and the intent of the survey explained to them by someone whom they trust. Even with doing the survey in person, there is little holding us back from incorporating an online component, whereby patients enter their responses into an online, mobile-friendly survey.
Additionally, having this survey accessed through one of these offices will allow them to keep track of which patients have responded, all of which can be easily done anonymously by the generation of a one-time access code used to access the survey.
In my opinion, this would be the most effective and efficient way of gathering patient feedback/input before going too far forward with crafting new or reshaping old legislation. If we make the survey online and interactive, we can glean real-time results, which will help to provide us with the most up to date information we’ve likely ever encountered within the field.
The pessimistic/cynical side of me realizes that creating, designing, and implementing this survey will be difficult, if not too great a challenge for our organization; that said, I fully believe that, without an active effort to gather this information, we will find ourselves stuck with yet another piece of overwrought policy that allows too many people, and often those who most need assistance, to fall through the coverage cracks with which we are all too familiar.
Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates.