Monthly Archives: March 2015

A Patient’s Perspective: HCV Viekira Pak

By: Marcus Hopkins, Blogger

In January of this year, the AIDS Crisis Task Force (Task Force) and AbbVie reached a landmark pricing agreement that offers their new Hepatitis C (HCV) treatment regimen, Viekira Pak, at a significantly lower cost for state and territory AIDS Drugs Assistance Programs (ADAPs). For last month’s research question for the HIV/HCV Co-Infection Watch Report, I asked every ADAP Director and Coordinator if this pricing agreement had caused their individual states to consider adding the regimen to their respective formularies.

Viekira Pak

Photo Credit: Life Beyond Hep C

I walked away from that first month of research with two observations:

  • Despite the pricing agreement, it is unlikely that a plurality of states will be adding Viekira Pak.
  • The communication process between researchers and Federally funded healthcare programs needs serious improvement.

The first observation is, frankly, based on a very limited sample of states whose representatives responded to my inquiry. This, in turn, informs my second observation.

The issue with our current approach to state-run healthcare programs is in desperate need of a retooling, in my opinion. When federal tax dollars are spent to fund state-run programs, the results have been, at best, mixed. This is largely due to the awkward manner in which those funds are allocated, using a combination of new and existing clients/patients, along with projected needs and outcomes from previous years.

What these models consistently fail to predict is the cost of new medications and treatments; additionally, they fail to account for the realities each state faces.

The tired, yet apt, adage, “When you’ve seen one ADAP, you’ve seen one ADAP,” truly applies to the state of ADAP programs in the United States. Quantitative results – generally meaning the number of clients served and the monies invested in them – are far easier to measure than qualitative results – the type and quality of care provided to those clients, which can vary wildly from state to state.

In my own experience as an ADAP client, the quality of care can vary greatly. In Florida and California, my experience with ADAP was heavily constrained by great burden those states face with a very high number of clients. In those states, resources are famously scarce, though California’s situation was greatly improved with the expansion of the MediCal program under the Affordable Care Act (ACA). Florida, however, continues its recalcitrance when it comes to expanding Medicaid – a much needed expansion, given the state’s level of uninsured and underinsured citizens – and as such, the state of Florida’s ADAP program is always in a funding crisis.

In Tennessee, that burden is far lower, and yet, because of the way the state distributes the funds into three separate regions, my quality of care was far superior, because I happened to live in the region with the fewest number of clients. Beyond simple visits to the doctor and medications, I also enjoyed access to dental care – something that has been, for me, severely lacking, which defies the continued good health of my teeth and gums – as well as various other benefits.

In West Virginia, the process is a bit more cumbersome, as the funding is not as great. The ADAP program covers the cost of most medications (excepting the Meningococcal vaccine I attempted to get, when I first arrived), but coverage for the visits is supplemented through other programs that wraparound to cover that cost, with a small co-pay. Despite the relatively low number of clients served by WV’s ADAP program, the resources are still too scarce to provide many of these extra services that the rest of the Ryan White Care Act can include, such as transportation to and from appointments (which is difficult given the geographic nature of the state) and additional services.

At various conferences over the last two years, I’ve come to appreciate the difficult nature of trying to gauge the state of ADAPs in the United States. The inconsistent manner in which each program is funded and operated creates a chaotic landscape with so many variations that it requires programs like the National Alliance of State and Territorial AIDS Directors (NASTAD) that are heavily staffed (and well-funded) to truly do a lot of the legwork required to gather comprehensive data.

And this is where my second observation – that we communication with these programs needs serious improvement – comes into play.

I will never speak ill of the work that NASTAD has done and continues to do in playing a vital role in collecting data from these programs. Their research has been invaluable in helping to better craft public policy that benefits those programs. Without their hard work, comprehensive data related to the number of clients served, formulary coverage, and client to employee ratios would be largely absent from the public policy forum. They do an amazing job advocating for AIDS directors and coordinators on the national level.

What they do not do, however, is serve the needs of patients.

The main function of NASTAD is to serve a very specific stakeholder – AIDS directors. This is explicitly described in the name of their organization. And while they do amazing work for their stakeholders, their initiatives often leave out the people for whom programs like ADAP and Medicaid exist – patients.

Currently, the front page of their website features a December 2014 article in which they advocate against multiple reporting requirements for healthcare agencies. In that article, they make a compelling argument on behalf of workers for these programs that having numerous reporting requirements to multiple agencies creates an environment inhospitable for the nature of their work. They quite rightly argue that many of these requests are redundant, duplicative, and cumbersome, as each requirement asks that data be collected, organized, and presented in a specific format in a specific time frame.

This process, they argue, can sometimes take two days just to submit one set of information, only to turn around and submit the same numbers in a slightly different format to another agency or organization shortly thereafter, and that sort of hassle limits the work that can be done actually providing services.

Those arguments are sound, and I cannot fault NASTAD for wanting to reduce the workload of their stakeholders. What I can fault, however, is the implication of this advocacy – that only certain reporting requirements are worthy of the attention of their stakeholders, and all others need not pester them for information.

While I applaud the fantastic work done by NASTAD, I must take exception to this approach. Reporting requirements are an important part of measuring the quantifiable success of healthcare initiatives, and while they can be admittedly cumbersome, they play an important role in determining the efficacy of particular initiatives.

Over the past two years, I have been privileged to be privy to a mere handful of conventions and panels regarding the state of ADAP programs across the nation, and what I’ve come to find is that our current approach to funding and administering the Ryan White Care Act and Part B’s ADAP program, while beneficial to many, is deleterious to those most in need of assistance.

The existing Ryan White funding model – federally funded; state-run – is designed to allow each state and territory’s program to address its needs as seen fit, the idea being that each state has different problems, and a local approach is the best way to confront them. What more often than not ends up happening is that, in states whose budgets aren’t expansive enough to meet their needs (primarily the American South and Midwest), clients don’t receive the same quality of care offered by better funded, but more bogged down states.

What virtually every other advance nation in the world has discovered is that local approaches often cannot contend with the reality of healthcare costs. Universal Healthcare is a system that’s utilized to great success and provides significantly greater healthcare outcomes around the world, and yet, to date, the programs designed on the national level to help those most at risk – Medicaid and Ryan White – are subject to the same restrictions and barriers that prevent patients living at lower income levels from obtaining private insurance.

This patchwork approach to funding and administering Medicaid and ADAP has created and continues to foster a system wherein everyone eventually loses out, from the AIDS directors and employees (from whom NASTAD advocates), to patients and clients, for whom there is little representation with gravitas of NASTAD.

This is where other programs, such as the Community Access National Network (CANN) and the HEAL Coalition, come into play. The purpose of patient-centric organizations is to advocate on behalf of patients, and part of how we do that is by conducting patient-centric research, which, much to the chagrin of NASTAD, requires research not conducted or gathered by or for their organization.

Research conducted on the patient-level is much more difficult to come by, largely because it’s difficult to obtain, maintain, and ensure funding, particularly when national organizations take a monolithic approach to information requests. This is particularly galling when directors and coordinators at state programs are instructed by NASTAD to redirect requests for data back to them, despite the fact that NASTAD is not, to my knowledge, an employee of any state.

Because of our nation’s approach to funding and administering ADAP, gathering information is a daunting process that requires contacting individuals on a state-by-state basis. When patient-centric research is conducted, it is approached from the perspective of the patient. Doing so requires thinking like a patient – which I happen to be – and going about collecting information using the methods and means available to and most commonly used by the average healthcare consumer.

As a patient, whenever I’m trying to find out information about what medications and treatments are covered in my state, I contact my state offices. I’ll speak to an employee or volunteer in the employ of the state to find the information I need, and I can make my decisions from there.

This type of research becomes increasingly difficult when those state employees tell me to redirect any question regarding HIV/HCV co-infection to [name] at NASTAD, because they don’t have time to answer my questions.

Neither NASTAD, nor their employees, are employed by the states, nor do they craft policies, procedures, or administration rules on the state-level. While they are privy to much of this information, they are not now, nor should they currently be, the go-to source for patient-centric research.

As someone who’s in favor of a nationalized healthcare system, I’m usually all for national results and research; unfortunately, that’s not the system we have, and as such, deflecting questions to a national organization does not serve my purposes. If I were seeking information as a resident of the state in need of coverage, would these directors tell me to go ask someone else? I think not.

HIV/HCV Co-Infection Watch

HIV/HCV Co-Infection Watch

Once again, the issue of stakeholders comes into play – NASTAD’s stakeholders are the organizations; the HIV/HCV Co-Infection Watch’s stakeholders are the patients – and frankly, the patient voice has been woefully absent in our national healthcare discussion.

As a patient, myself, I find myself thinking, “NASTAD doesn’t speak for me,” and until such time that we a federally funded and operated ADAP program, where every ADAP program provides the same services and treatments across the country, they will continue not to speak for me.


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. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.


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HCV Patient Registry

By: Marcus Hopkins, Blogger

In 2015, the Community Access National Network (CANN) and its project, the “Hepatitis: Education, Advocacy & Leadership” (HEAL) Coalition, have partnered with the Patient Centered Outcomes Research Institute (PCORI) and their project, Community Engaged Network for All (CENA), to help spread the word about a recently developed patient-centered program, the Hepatitis Foundation International Patient Registry Network (HepPRN).

Hepatitis Foundation International (HFI) Patient Registry Network (HepPRN™)

Hepatitis Foundation International (HFI) Patient Registry Network (HepPRN™)

The HepPRN was introduced in October 2014 as a way for Hepatitis-infected patients and those affected by patients living with Hepatitis to share their stories of living with Hepatitis. It does so by collecting self-reported data from patients and caregivers on a wholly voluntary basis, and each person who signs up for the Registry will determine his or her own personal data sharing, privacy, and access preferences.

These sorts of projects help to create a very effective dialogue that can help to raise awareness about various disease-related issues, and has been used to great effect by patients and caregivers living with HIV/AIDS. While Hepatitis is becoming an ever-increasing concern in the healthcare community, it doesn’t always get the most press coverage, other than to speak about how expensive it is to treat.

With that lack of explanatory press coverage comes a dangerous consequence – sometimes, the price can seem to outweigh the “knowing” aspect of getting tested.

In the first twenty years of the HIV/AIDS crisis, one of the first things I learned about the virus was how expensive and burdensome it was to treat. I was a sophomore in high school in Kingsport, TN, when I sat through a guest lecture by a local man who was living with HIV during our mandated sex education course (back when we still had Comprehensive Sex Ed).

He went through the basic of what it was like to live with HIV, and some of the stigma against which he fought, but what I remember most about his talk was when he took out and displayed across the otherwise empty desk no fewer than seventeen different medications that he took for treatment.

I remember thinking, at the time, “Dear God! How does he keep up with all of that? That must be such a hassle!”

While the message I should have walked away with was how to avoid becoming ill, I instead left thinking, “I just don’t want to deal with all of that crap!” In retrospect, it was a very effective way to reach a teenager for whom a dollar sign meant very little. When the parents are the ones who’re paying, money is rarely a consideration.

Unfortunately, the same approach is much of what has been stressed in the information campaign of the last few years, but this time, it is being directed towards adults, for whom money is a major consideration.

Much has been made about how much easier to tolerate the latest HCV drugs are than their Interferon-based predecessors, but even more attention has been shed on how expensive these treatments are. In my own educational and casual conversations about HCV, I make certain to address the subject, pointing to the fact that the new treatments for HCV are more expensive, now, than the latest treatments for HIV/AIDS (Sovaldi at $85,000/twelve weeks vs. Stribild at $37,000/one year). That factoid is shocking, particularly when most people still have the perception that treating HIV requires a boatload of pill bottles.

The HepPRN is part of the solution to getting people to think beyond the price tag, and unfortunately, they face an uphill task; the reality that fewer than a handful of pills can cost almost double the average American annual income is daunting, and often leads people to think, “I’d rather not know, than have to worry about whether or not I can afford treatment.”

It is these sorts of compunctions that personal stories help to combat.

That said, I have to be honest – when I first heard of the HepPRN, I was immediately made wary of the project, simply because of the name.

It can be exceedingly difficult, at times, to come up with names for projects and organizations. The urge to create something “snappy” and “memorable” needs to be weighed with the connotation that associated with specific words. In this case, that word is “Registry.”

As someone who grew up during the HIV/AIDS crisis of the 1980s, I have very firm memories of the concept of “registries,” as there were very well publicized legislative efforts to forcibly register people with HIV/AIDS for whatever purpose – at the time, it was “monitoring.” This was my first thought when I heard the name of this project, and I must say, it wasn’t a good first reaction.

There is something alarming about the word “Registry,” as it implies making a list; when paired with an infectious disease, creating lists of people who have a disease raises red flags, for most people, particularly for Americans, and most certainly, for older Americans – those most likely to be infected with HCV.

While the aims of the HepPRN are both admirable and a proven good tool for helping to spread awareness, I worry that its name may prevent more people from signing up to use the tool, share their own stories, or give it the heft it should carry in the healthcare conversation.

Again, picking a name is very difficult, and I’m certain that various attempts were made to create something memorable (and easily shrunken into an initialism – what most people mistaken call an “acronym”), and so, I hope that the effort goes well, for them. Although I am not personally affected by Hepatitis, I will certainly be more than happy to refer people who are to this very valuable resource, and will place behind it my full support.


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. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

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